I wanted to present a I wanted to present a interesting dilema I have. And I’m curious what you would do.
Background:
I have a soft tissue “benign” desmoid tumor growing in my abdomen (ok it’s really 2 tumors)
It is benign, but very aggressive..think of it as scar tissue that doesn’t stop growing…
Without treatment, it will will wrap around organs and blood vessels, and when that happens, the organ is toast.
It’s starting to get entwined with my small intestines
I have three options: surgery, chemo, or do nothing .
Here’s the pros/cons of each
1) Surgery.
Pros:
*Doctor’s think the current tumors can be removed (or at least most of it) based on all the CT/MRI imaging
*When another tumor comes back (because it will come back most likely),
there is an option to use radiation in addition to chemo, if we catch the tumor when it’s small.
Cons:
*I might end up losing a good portion of my small bowel
*This tumor was surgery induced… It was a direct result from my first surgery.
So it’s almost certain that if I have surgery to remove it, another tumor(s) will come back.
And they might come back even more aggressive and/or in a different location that cannot be removed next time.
*Doctors might open me up only to find out I can’t be operated on…the MRI/CT scan might not show everything, and
if I’m really unlucky, they will only know that I can’t be operated on after they already cut me open.
2) Chemo
Pros:
*If I do respond to chemo, the tumor will be controlled and no longer move (and maybe even shrink).
I don’t need to worry so much about a new tumor growing back due to another surgery.
Cons:
*There is no guarantee any chemo on a tumor will work. Folks in similar situation are all over the board in whether it works or not.
*Chemo takes 6 months, and if it doesn’t work, surgery will most likely no longer be an option
*If the current tumor isn’t removed, radiation will also not be an option, because it’s currently too large to be radiated
*TBD side effects from chemo
3) Do nothing and wait and see.
Pros:
*Wait until this thing starts giving me pain symptoms, health issues before doing something (currently it isn’t. I wouldn’t have found out if it wasn’t because I ate a bag of nuts that got stuck in my intestines)…. Some doctors think the more “treatment” one does, the more it aggrevates the problem.
*Take a chance that this tumor slows down and stops growing on itself, which is a possibility.
Cons:
*If it doesn’t stop, game over.
So, what would you do? Don’t worry. I’m not asking for medical advice…The issue here is I’ve already talked to several leading experts in this field, and even then, they really don’t agree on what should be done, so ultimately I need to flip a coin or something
TemekuT
August 17, 2011 @
1:31 PM
check my PM. check my PM.
jpinpb
August 17, 2011 @
1:43 PM
flu – are there no flu – are there no alternative treatments that are available?
Coronita
August 17, 2011 @
2:14 PM
jpinpb wrote:flu – are there [quote=jpinpb]flu – are there no alternative treatments that are available?[/quote]
That really is the last resort after everything else fails.
jpinpb
August 17, 2011 @
2:27 PM
I would think I’d do some I would think I’d do some alternative treatment before I do absolutely nothing and wait. But it’s all very scary and easy for me to say.
UCGal
August 17, 2011 @
2:38 PM
First that hardly sounds First that hardly sounds “benign” if it continues to grow and can destroy organs.
My answer comes with a lot of baggage and bias. My brother had a cancer that wrapped entirely around his intestines – crimping them, obstructing them. He thought he had a flare up of diverticulitus, but instead it was a super aggressive cancer. When he stopped being able to even hold down liquids because the food/liquid had no place to go, due to the obstruction, he went to the hospital. At that point they deemed it as too far gone for surgery, and tried shrinking it with chemo.
Unlike my mom (ovarian cancer) and dad (prostate cancer, then multiple myeloma)… my brother did NOT respond at all to the chemo. The tumor continue to grow. Eventually we got him to a specialist in Denver who was able to hold it at bay – through a series of extreme surgeries… probably extended his life about 3 weeks. All of which was in the ICU.
Based on this, my brother’s neuroendocrine carcinoma, which is different than your desmoid tumor… my gut says to take it out why it’s operable. You state that it’s already entwined with your intestines… If it obstructs (by wrapping all the way around, and constricting) your quality of life become zero. In my brother’s case the cancer eventually formed a fistula into the intestines – which fed it’s growth.
I would do the surgery, and follow up with radiation/chemo as needed. And if the chemo doesn’t work – stop it… chemo can be more devistating than the illness. My mom tolerated chemo, and it seemed to keep her cancer growth at bay… my brother was almost killed by the chemo, and it didn’t control the cancer. So cut the chemo if it doesn’t work.
I realize that I’m comparing apples/oranges… but all I’ve got to base it on is what I saw my brother go through.
I am so sorry you’re having to make these choices. I hope whatever you choose – it’s successful.
UCGal
August 17, 2011 @
2:38 PM
One more thing. For most One more thing. For most things medical I’m a do nothing type of person. But what you describe falls into the do something camp.
desmond
August 17, 2011 @
4:58 PM
My friend just had his second My friend just had his second Schwannoma tumor removed from below his stomach, his other one was wrapped around his lower spine. Both surgeries were a success and he fully recovered in a month or so after each one. Good luck flu, I know that really sucks having to deal with that.
sdrealtor
August 17, 2011 @
5:02 PM
Having been through Having been through cancer/tumor related illnesses with family several times, my vote would be surgery asap. Attack it as aggressively as early as you can while you are at maximum strength.
Best Wishes for a speedy recovery
eavesdropper
August 17, 2011 @
5:20 PM
flu wrote:I wanted to present [quote=flu]I wanted to present a interesting dilema I have. And I’m curious what you would do.
Background:
I have a soft tissue “benign” desmoid tumor growing in my abdomen (ok it’s really 2 tumors)….It is benign, but very aggressive..think of it as scar tissue that doesn’t stop growing…Without treatment, it will will wrap around organs and blood vessels, and when that happens, the organ is toast.
It’s starting to get entwined with my small intestines
I have three options: surgery, chemo, or do nothing. So, what would you do? Don’t worry. I’m not asking for medical advice…The issue here is I’ve already talked to several leading experts in this field, and even then, they really don’t agree on what should be done, so ultimately I need to flip a coin or something[/quote]
Flu, if you don’t mind me asking (hell, YOU posted this, so I don’t give a crap if you do mind) , who have you seen so far on this? You don’t have to give me names if you don’t want to, but what about medical specialties?
This is a very tough situation. The tumor may be “benign” in its pathology, but its behavior is another matter. As you mention, there are drawbacks to every option.
As I’m sure you’re aware, the tumor is not an entity unto itself, and its formation and growth are influenced by any or all of a number of factors, one of which you mentioned. This type of tumor is extremely rare, so it stands to reason that the body of knowledge regarding etiology and treatment is relatively small, and laboratory and clinical research, and studies that examine efficacy of various treatments, are also in short supply.
Since this is not your first encounter with this neoplasm, it’s essential (IMHO) that you get yourself into a program that is able to deal with your disease from a medical and surgical standpoint. While you can consult these physicians separately, I think you’d be much better off going to a National Cancer Institute-designated comprehensive cancer center (you’re fortunate to have quite a few in California). Even if you cannot undergo treatment there, you should, at the least, have a comprehensive workup by clinicians who specialize in aggressive soft-tissue tumors that target connective tissue. A good NCI CCC will have a staff that includes medical oncologists, geneticists, pathologists, radiation oncologists, and surgeons that are experienced in tissue-sparing surgery, and will also have access to cutting edge basic science researchers. The advantage is that they communicate with each other in coming up with the best plan(s) of action, but, aside from examinations and procedures, you should only have to deal with one clinician who oversees your case. The bonus is that CCCs are wired into the latest clinical trials. Because the most difficult medical/surgical cases present to CCCs, you’ll have clinicians who are experienced in treating rare conditions, instead of a surgeon who has seen only one or two desmoids in a 40-year career.
The problem with your question is that the way it is posed necessitates a simple answer. Yours is not, in any way, a simple condition. For instance, is it just a case of idiopathic uncontrolled soft tissue cell division? Or is the recurrence of these neoplasms part of a larger insidious disorder having nothing to do with your GI system? Then the chemo issue: Strictly-speaking, chemotherapy is the treatment of disease with chemicals. There is a very large expansive choice of chemical-based therapies for desmoid tumors. Do you want systemic, which affect the entire body, or intralesional? Cytoxic (what most people think of as cancer chemo) such as doxorubicin – a personal favorite – or methotrexate and vinblastine? Nonsteroidal antiinflammatories (NSAIDS) such as over-the-counter aspirin and motrin, and prescription sulindac and COX-2 inhibitors? Hormones including progesterone, tamoxifen, and raloxifene? Or Gleevec, a tyrosine-kinase inhibitor that targets receptors on desmoid tumors? How much, how often, how long?
And that’s just chemo. In a situation where the aggressive neoplastic behavior can cause irreparable organ damage, threatening debilitation or even death, you need to be assessed and treated by a team who is not only familiar with the complexities of a rare disorder, but who can attack it using molecular, genetic, biological, and cellular approaches. As a patient, flu, you need to be as informed as possible, but equally important is the quality and integrity of the information you are given. While decision-making will still be difficult, you will have more confidence when making them, and far less second-guessing after.
I worked with a researcher-clinician at Johns Hopkins a few years back who is renowned for his work in the molecular and genetic etiology of gastrointestinal tumors. I am sure can provide me with information on what program to consult in your area. Let me know if you are interested.
sdrealtor
August 17, 2011 @
6:07 PM
Great post eavesdropper! Great post eavesdropper! Piggington at its finest
flyer
August 17, 2011 @
6:39 PM
Although I am not offering Although I am not offering medical advice, I completely agree with eavesdropper on checking out an NCI-Designated Comprehensive Care Cancer Center. In our region, that would be the Moores Cancer right here at UCSD in La Jolla. There are several other NCI-Designated facilities in California.
I have friends who have been treated there, as well as at MD Anderson in Houston, and at Johns Hopkins. From what they have told me, the comprehensive nature of the treatment at these facilities far surpasses other options.
Take care, and God Bless.
Coronita
August 17, 2011 @
7:38 PM
eavesdropper wrote:
Flu, if [quote=eavesdropper]
Flu, if you don’t mind me asking (hell, YOU posted this, so I don’t give a crap if you do mind) , who have you seen so far on this? You don’t have to give me names if you don’t want to, but what about medical specialties?
This is a very tough situation. The tumor may be “benign” in its pathology, but its behavior is another matter. As you mention, there are drawbacks to every option.
As I’m sure you’re aware, the tumor is not an entity unto itself, and its formation and growth are influenced by any or all of a number of factors, one of which you mentioned. This type of tumor is extremely rare, so it stands to reason that the body of knowledge regarding etiology and treatment is relatively small, and laboratory and clinical research, and studies that examine efficacy of various treatments, are also in short supply.
Since this is not your first encounter with this neoplasm, it’s essential (IMHO) that you get yourself into a program that is able to deal with your disease from a medical and surgical standpoint. While you can consult these physicians separately, I think you’d be much better off going to a National Cancer Institute-designated comprehensive cancer center (you’re fortunate to have quite a few in California). Even if you cannot undergo treatment there, you should, at the least, have a comprehensive workup by clinicians who specialize in aggressive soft-tissue tumors that target connective tissue. A good NCI CCC will have a staff that includes medical oncologists, geneticists, pathologists, radiation oncologists, and surgeons that are experienced in tissue-sparing surgery, and will also have access to cutting edge basic science researchers. The advantage is that they communicate with each other in coming up with the best plan(s) of action, but, aside from examinations and procedures, you should only have to deal with one clinician who oversees your case. The bonus is that CCCs are wired into the latest clinical trials. Because the most difficult medical/surgical cases present to CCCs, you’ll have clinicians who are experienced in treating rare conditions, instead of a surgeon who has seen only one or two desmoids in a 40-year career.
The problem with your question is that the way it is posed necessitates a simple answer. Yours is not, in any way, a simple condition. For instance, is it just a case of idiopathic uncontrolled soft tissue cell division? Or is the recurrence of these neoplasms part of a larger insidious disorder having nothing to do with your GI system? Then the chemo issue: Strictly-speaking, chemotherapy is the treatment of disease with chemicals. There is a very large expansive choice of chemical-based therapies for desmoid tumors. Do you want systemic, which affect the entire body, or intralesional? Cytoxic (what most people think of as cancer chemo) such as doxorubicin – a personal favorite – or methotrexate and vinblastine? Nonsteroidal antiinflammatories (NSAIDS) such as over-the-counter aspirin and motrin, and prescription sulindac and COX-2 inhibitors? Hormones including progesterone, tamoxifen, and raloxifene? Or Gleevec, a tyrosine-kinase inhibitor that targets receptors on desmoid tumors? How much, how often, how long?
And that’s just chemo. In a situation where the aggressive neoplastic behavior can cause irreparable organ damage, threatening debilitation or even death, you need to be assessed and treated by a team who is not only familiar with the complexities of a rare disorder, but who can attack it using molecular, genetic, biological, and cellular approaches. As a patient, flu, you need to be as informed as possible, but equally important is the quality and integrity of the information you are given. While decision-making will still be difficult, you will have more confidence when making them, and far less second-guessing after.
I worked with a researcher-clinician at Johns Hopkins a few years back who is renowned for his work in the molecular and genetic etiology of gastrointestinal tumors. I am sure can provide me with information on what program to consult in your area. Let me know if you are interested.[/quote]
Here’s the situation. I’m a lucky winner of FAP, and being a spontaneous mutation. So the colon was removed when I was 31 to avoid the almost guarenteed colon cancer…Except someone didn’t really tell me that that I was also at a high risk to get desmoid tumor from surgery. In hindsight, I was naive and didn’t think desmoid would be an issue, and didn’t do my due diligence with other people who have similar situations. Because if it were, I would have taken my chances and to avoided surgery until I got colon cancer and was older (saying 40-50)…because some research suggests that desmoid from surgery trama might not occur as easily with older people.
Well, that’s water over the bridge right now.
UCSD/Moore’s Cancer was treating me. However, things started to concern me about UCSD… My oncologist is leaving, my GI doctor left, and they aren’t a leading sarcoma/soft tissue expert.
Nevertheless, they are the people that know my history the best.
Since then, I’ve talked to the following
Cedar-Sinai:
Head of oncology.
I also have an appointment with the head of oncology surgery.
Head of oncology surgery isn’t against surgery but raises concerns that (1) I might lose too much bowel and (2) surgery might not help and make it worse, because research suggests surgery makes things reoccur, sometimes worse.
The head of oncology surgery indicated on the phone that he thinks things can be removed and suggests to go for it. I meet with him next week to discuss further.
UCLA:
Renowned oncology surgeon. Has also seen this shit. Supposedly one of the best doctors in CA for this shit.
They met at a tumor board meeting. The Cedar-Sinai head of oncology was there… UCLA recommended against surgery, and suggested using a heavy dose of chemo…
My issue is that if I listen to them, I will miss the opportunity for surgery, which raises the “what if chemo doesn’t work” scenario
Loma Linda University Cancer Center
Director of oncology surgery. This supposedly deals a lot with desmoids/fap cases
They had a tumor board review meeting about my case. They think surgery is a good option, but isn’t sure if the second tumor can be removed. After the tumor is removed, they plan on moving my organs asside from the area of extraction, and hitting me with radiation to see if that will prevent it from reoccuring.
Cleveland Clinic
Dr. Church: I have an upcoming appointment with him, as he’s the leading expert in this area
Others have said he is very conservative and does not always recommend surgery. However, in my case he indicated I should get surgery. I haven’t talked to him in greater details, but will do so.
I have not talked to City of Hope, USC, Mount Sinai in New York, or Anderson in Texas, which I found people on message boards with similar conditions are going through.
Also alternative treatments, such as herbalist/naturalist (even ones that are licensed doctors) might work if there are dietary or chemical imbalances. But when there is a genetic issue, these things don’t really work. Because you really can’t fix a genetic problem.
eaves, if there’s someone/some organization that you feel I’m missing, if you can PM me, that would be great.
FWIW: I’m really not scared or freaking out…Just really annoyed.
jpinpb
August 17, 2011 @
7:48 PM
Damn, flu. I am so sorry Damn, flu. I am so sorry that you are going through this. I hope whatever decision you make works out best. I wish I could offer you better advice.
eavesdropper
August 17, 2011 @
7:55 PM
flu wrote:eaves, if there’s [quote=flu]eaves, if there’s someone/some organization that you feel I’m missing, if you can PM me, that would be great.
FWIW: I’m really not scared or freaking out…Just really annoyed.[/quote]
Thanks for info, flu. I was wondering about the possibility of FAP/mutation, but didn’t want to add to concerns if that wasn’t part of the picture.
I will PM you, either tonight or tomorrow morning.
bearishgurl
August 17, 2011 @
7:59 PM
flu wrote:…eaves, if [quote=flu]…eaves, if there’s someone/some organization that you feel I’m missing, if you can PM me, that would be great…[/quote]
flu, I can certainly understand why unlucky persons with inherited conditions, especially FAP, would choose to get prophylactic surgery at a young age, as you did. At least you found out you carried FAP at a young age! Please don’t second guess your decision now. Colon cancer is very deadly and often difficult to catch early enough to be able to even obtain a remission. And the chemo cocktails used to treat it are also extremely toxic and even deadly.
See my post directly above. Contact the Sarcoma Alliance for Research through Collaboration (SARC) tomorrow, mentioned in the link.
The SARC can help you decide what to do, in conjunction with your doctors.
outtamojo
August 18, 2011 @
12:28 AM
I hope things work out for I hope things work out for you healthwise flu- I didn’t participate in the poll because it is such a tough decision and it’s one thing for me to give people bad stock advice and another to give bad health advice 🙂
eavesdropper
August 19, 2011 @
6:44 PM
flu wrote: Here’s the [quote=flu] Here’s the situation. I’m a lucky winner of FAP, and being a spontaneous mutation. So the colon was removed when I was 31 to avoid the almost guarenteed colon cancer…Except someone didn’t really tell me that that I was also at a high risk to get desmoid tumor from surgery. In hindsight, I was naive and didn’t think desmoid would be an issue, and didn’t do my due diligence with other people who have similar situations. Because if it were, I would have taken my chances and to avoided surgery until I got colon cancer and was older (saying 40-50)…because some research suggests that desmoid from surgery trama might not occur as easily with older people. Well, that’s water over the bridge right now.[/quote]
No one does due diligence on health-related issues at age 31, so don’t beat yourself over the head on this one (unless you’re really into self-flagellation). As for your increased risk of desmoid, yeah, I’m kinda pissed that no one mentioned it to you. If I read your post correctly, your earlier surgery was prophylactic in nature, which was your choice of action following genetic testing/ dx. of FAP. Genetic testing should not be offered to patients outside of a setting where there is, at the least, a masters-level genetics counselor on staff. Patients should be counseled PRIOR to having the specimen drawn, including the limitations of the testing, significance of positive AND negative results, disorders for which they are being tested, details of all physical treatment choices (therapeutic or prophylactic), including side effects and the possibility of associated mutation-related morbidity, and the physical and psychological repercussions of the testing and revelation of results. Unfortunately, by the late 90s, the enormous economic potential of genetic testing was being exploited by entities who, reluctant to cut down on profits, ignored the need for professional genetics counseling or even training materials for inexperienced providers: for-profit hospitals and health providers, and companies offering direct-to-patient testing kits. You should have been apprised of your age-related post-surgical increased risk of desmoid tumor , and a whole big bunch of other stuff, well before they took a tube of your blood for genetic testing. Speaking of the good ol’ early days, this site details the efforts (and the warnings) made by the NHGRI, in trying to ensure true informed consent and receipt of quality information by patients seeking genetic testing for disease-related mutations:
www/biotech.law.lsu.edu/research/fed/tfgt/
That being said, I’m going to impart a gem of information here, flu: Ignore statistics. With regard to you and your disease specifically, statistics are meaningless. Statistics are extremely valuable to clinicians who evaluate and compare them to create a course of treatment. But, as an individual trying to figure out what to do, you should not use them. Patients can get tightly wrapped around the axle while reading journal articles, and agonizing over the fact that 55% had 5-year local recurrence with Miracle Drug A while 59% had 5-year local recurrence with Not-So-Miracle Drug B. Let your doctor(s) do the heavy lifting, and have them share their findings with you. THEN ask questions. There’s nothing wrong with you getting involved in your own research and getting yourself informed – in fact, I recommend it highly from a psychotherapeutic standpoint. But avoid the tendency to apply the stats in the studies to you. You, by yourself, are a statistically-insignificant cohort.
[quote=flu] Cedar-Sinai: Head of oncology.
I also have an appointment with the head of oncology surgery.
Head of oncology surgery isn’t against surgery but raises concerns that (1) I might lose too much bowel and (2) surgery might not help and make it worse, because research suggests surgery makes things reoccur, sometimes worse…..The head of oncology surgery indicated on the phone that he thinks things can be removed and suggests to go for it….
UCLA: Renowned oncology surgeon. Has also seen this shit. Supposedly one of the best doctors in CA for this shit……
Loma Linda University Cancer Center: Director of oncology surgery. This supposedly deals a lot with desmoids/fap cases….
Cleveland Clinic: Dr. Church: I have an upcoming appointment with him, as he’s the leading expert in this area….. in my case he indicated I should get surgery. I haven’t talked to him in greater details, but will do so……
Also alternative treatments, such as herbalist/naturalist (even ones that are licensed doctors) might work if there are dietary or chemical imbalances. But when there is a genetic issue, these things don’t really work. Because you really can’t fix a genetic problem. [/quote]
It looks like you’ve consulted with a lot of surgeons here. Yes, they are oncologic surgeons, but, regardless, they’re coming from a “surgery-as-therapy” viewpoint. It would be the same if you were seeing a radiation oncologist: an oncologic specialist, but one who looks at management of the disease from the perspective of his/her medical specialty. And they are more focused on the geography of the disease: organs infiltrated, organs affected by proximity of tumor growth, damage to surrounding tissue, inaccessibility of entire tumor, choice of treatment based on inability to get clean margins, etc.). Surgeons deal with the threat of desmoid (damage to tumor-containing tissue or proximal tissue) by excising the tumor, radiation oncologists by “burning” it, so to speak. But that, in itself, does not remove the growth potential of the tumor. Desmoid tumor disease DOES respond well to these treatment modalities, but largely because of desmoid’s lack of metastatic potential.
However, the medical oncologist looks at the “bigger picture”, so to speak: He/she examines the tumor as a discrete mass, as a product of gene expression, at the tumor’s potential for growth and its tendency to recur. He/she is very familiar with, and endorses the use of, surgery and radiation oncology. But the tumor is also looked at microscopically and genetically, to try and figure out why it grew where it did, when it did, and it’s examined for its potential to be manipulated hormonally or immunologically. This is the individual that’s going to know this disease from every angle, and who will look at your pathology report, your genetic testing results, your G.I. operative note and discharge summary, your general health history, and an extensive family history of all cancers. The medical oncologist is usually the one that oversees the entire treatment period, and then does followup at regularly scheduled intervals.
I strongly advise you not to make a decision in the absence of an extensive consultation with a medical oncologist who specializes in sarcomas and soft tissue tumors. You will not find one who works exclusively in desmoids (it’s simply too rare of a disease), but you should be able to find several throughout the United States, preferably one who has worked in both basic research and clinical settings.
If you decide that you want to consult an oncologist far from home, but you want to be treated in California, you should let them know this when you make the appointment. If you have not been keeping copies of your medical records, you need to start now (discharge summaries, op notes, lab results, path reports, and computer files with your xray/MRI/CT films). Don’t be surprised if they ask you to bring slides of your tumor to examine.
If cost is not a factor, I’d advise going to an NCI-designated comprehensive cancer center that has a special sarcoma-soft tissue tumor unit. A facility like that should have at least one or two medical oncologists who have a subspecialty in desmoids, perhaps along with some current translational research activities. A place like this will, in all likelihood, have oncologic surgeons, rad oncologists, and pathologists ON SITE, who also specialize in soft-tissue neoplasms. What’s more is that the NCI has been granting funds for the study of alternative medicine modalities, and some of these places have clinical alt med specialists on board, also. And if you are found to be a candidate for a clinical drug trial, they will have no trouble locating and entering you in one that is appropriate.
I’m researching NCI CCC locations for you, and have started a list. I’ll PM you with that.
Anonymous
December 5, 2012 @
3:10 PM
I have a similar situation I have a similar situation and live in CA. Can you please tell me where I could go for having my case reviewed at the tumor board meeting? Also can you please give me names of the Head of Oncology at Cedar-Sinai and UCLA Renowned oncology surgeon.
Thank you very much
Coronita
December 6, 2012 @
6:55 AM
needhelp wrote:I have a [quote=needhelp]I have a similar situation and live in CA. Can you please tell me where I could go for having my case reviewed at the tumor board meeting? Also can you please give me names of the Head of Oncology at Cedar-Sinai and UCLA Renowned oncology surgeon.
Thank you very much[/quote]
I’ll send you a private message.
I have contacts for you at UCLA, Cedars, and Cleveland Clinic..
I also went to MD Anderson, but I would advise NOT going there. (Big waste of time).
FWIW: some people that regularly attend the UCLA tumor review board also attend the one at Cedars and vice versa. So you might as well talk to both.
There is one additional place you can consider if you think you might go down the path of radiation therapy… Loma Linda University.
Depending on what you have, I would recommend paying Cleveland Clinic a visit….I found the one of the top rank doctors there in my area, and he was the only surgeon that I met that advised against surgery.
sjglaze3
August 19, 2011 @
9:44 AM
One other option to consider One other option to consider is surgery + adjuvent radiation therapy, for surgical resections with positive margins. See this paper on PubMed
“The role of adjuvant radiotherapy in the treatment of resectable desmoid tumors.” I work in radiation oncology and consider today’s radiation therapy treatments much more focussed than even 5 years ago, with fewer side effects (certainly no worse than chemo).
bearishgurl
August 17, 2011 @
12:15 PM
flu, the ability to vote in flu, the ability to vote in the “poll” disappeared. Based upon my knowledge of the chemo used to treat this type of tumor, and the fact that you are still young, I think you should do both.
disclaimer: I am not a medical professional
svelte
August 17, 2011 @
4:49 PM
I would do surgery I would do surgery immediately.
Chemo is nasty stuff. I watched my mother suffer through it and really hate even hearing the word now.
Surgery is much easier on the body in most cases.
sdsurfer
August 17, 2011 @
5:18 PM
My mom had it in her lymph My mom had it in her lymph nodes and went the chemo route. She was miserable at the time, but she made it and I feel fortunate she did what she did.
She actually acquired a new found sense of living after going through everything that is truly inspiring to this day. Of course everyone feels differently, but I think there is a lot to be said about hope, accepting the challenge and saying &%$# you to whatever the the odds might say or statistics might show. If you do nothing I’d be afraid of it being similar to giving up. I would definitely do something to better my chances. I would want to put up a fight one way or another, but I am not in your situation and want to be respectful.
Good luck to you whatever you choose to do!!
briansd1
August 17, 2011 @
5:28 PM
Best of luck to you flu.
You Best of luck to you flu.
You have insurance and access to the best doctors.
Brian, I adore you, and have great respect for your intelligence. But the clue phone is ringing, and it’s for you.
Some moments in life are teaching opportunities. This is not one of those moments.
You state that flu has insurance coverage, and, indeed, flu has not stated otherwise. Flu’s post briefly describes his dilemma, and asks for Piggs’ personal opinions regarding the choice he is up against. So for what reason would you respond with a comment about where, if he had inadequate or no coverage, he’d be forced to go for care in Southern California, with links to the websites.
While flu’s responses to posts regarding societal needs and concerns can sometimes have a caustic tone, I have no doubt that he’s well aware of the piss-poor health care alternatives available to many uninsured or underinsured Californian residents. Or that he is, indeed, fortunate in having a choice of care provider(s) and treatments.
However, the fact remains that he’s experiencing one of those unfortunate periods in life when one is diagnosed with a life-altering, and possibly life-threatening, condition. Fortunate as flu is to have good coverage, I’m pretty sure that your “reminder” is not only unnecessary, but probably not doing much to raise flu’s spirits, or make him feel better about what’s currently happening in his life.
While I’m sure that there was no malicious intent on your part, next time a post strikes you as a fine “teaching opportunity”, stop and give careful consideration to the situation. And send the links to the Tea Party congressional caucus members.
briansd1
August 18, 2011 @
4:23 PM
eavesdropper wrote:
Some [quote=eavesdropper]
Some moments in life are teaching opportunities. This is not one of those moments.[/quote]
Agree with eavesdropper. If Agree with eavesdropper. If it were me, before I made a choice on what seem like discrete options, I would aggressively pursue a state-of-the-art treatment plan with the most advanced research-based medical team I could find. UCSD would be great. So would UCLA. All in our backyards!
KIBU
August 17, 2011 @
7:03 PM
This is the opinion of a none This is the opinion of a none medical person.
But, on this one, I think you should try everything.
1. Try surgery so doctor can have a chance to get rid of it and delay things. Question of when best to do surgery is probably a tougher one.
2. Chemo if surgery did not solve it.
bearishgurl
August 17, 2011 @
7:34 PM
Great post, eavesdropper. I Great post, eavesdropper. I made the suggestion to flu right after he posted this morning to pursue doctors at UCSD Moores Cancer Center as they were one of the first ones to offer clinical trials with Gleevec for these types of tumors. They would be able to tell him if his tumors would respond to it. It is a targeted biologic agent in pill form and although it does have side effects which vary from person to person, one can live a normal life (usually keep FT employment) while treating (sometimes the dose ends up needing to be halved). Some people even “manage” their conditions for years with Gleevec. It has been successfully used off-label in recent years in shrinking flu’s type of tumor.
If flu’s disease and previous surgery is caused from FAP, a hereditary condition, that is all the more reason to have his tumors resected again ASAP and this time begin a serious regimen of chemo 1-2 months later, IMHO.
I agree that a case manager in a dedicated Nationally-recognized CC can work out all these details and lay out a patient’s options better for him/her so it is more understandable and less confusing.
All my best to you in making the right decisions for you, flu.
as
August 18, 2011 @
1:49 AM
Flu,
Don’t know what to say. Flu,
Don’t know what to say. Whatever your decision is, wish you the best!
scaredyclassic
August 18, 2011 @
7:56 AM
I don’t know. In general I I don’t know. In general I don’t trust doctors. I would try to avoid everything I could. But maybe in this case I’d have to do something. Somehow I think I’d gobfor chemo because I’m so alarmed about getting cut open. But keep in mind I cannot open my eyes underwater because I’m afraid water will get into my brain.
Navydoc
August 18, 2011 @
8:45 AM
I don’t know if you care what I don’t know if you care what an obstetrician has to say, but if it were me I’d be looking to get on one of the Imatinib (Gleevec) experimental protocols. This isn’t my medical playground, but the Imatinib has been showing pretty good results. (didn’t vote, as this option’s not up there)
I think the surgery is potentially a crappy option, as these things tend to recur, especially in FAB patients. Also remember, every time they open you up you’re increasing the likelihood of a surgical complication- you might wake up with a colostomy, which is not an unlikely scenario if you have a lot of scar tissue around your bowel. Of couse, as you stated, these tumors are locally agressive. Definitely in a damned if you do, damned if you don’t situation. That’s why I like the chemo option, and the Gleevec seems to be better then the usual agents. Would be nice to wait until the investigations are done, but that could be years.
Best of luck, whatever you decide to do. Now would somebody tell me how I gain Scaredy’s trust?
Navydoc
August 18, 2011 @
1:15 PM
Oops, I guess that should be Oops, I guess that should be ileostomy, I just remembered you had a colectomy! And yes I know it’s FAP, not FAB- don’t know how I did that, it’s not like the P is next to the B on the keboard.
eavesdropper
August 18, 2011 @
1:58 PM
Navydoc wrote: Best of luck, [quote=Navydoc] Best of luck, whatever you decide to do. Now would somebody tell me how I gain Scaredy’s trust?[/quote]
Deluxe box set of “Breaking Bad” episodes. Case of Bombay Sapphire gin. “Widowmaker”-sized bag of Costco cheese curls.
Okay, I admit, that’s a surefire path to MY trust. But might score some b.p. with scaredy, too.
eavesdropper
August 18, 2011 @
2:03 PM
walterwhite wrote:……. But [quote=walterwhite]……. But keep in mind I cannot open my eyes underwater because I’m afraid water will get into my brain.[/quote]
Open them. From the sound of things, it’s already too late.
Besides, you won’t have to take your contact lenses out to clean them if you fill your pool with multi-purpose solution.
AK
August 18, 2011 @
11:45 AM
I have no expertise or I have no expertise or anything else to contribute other than my sympathy. But for what it’s worth I’d lean toward the chemo myself.
scaredyclassic
August 18, 2011 @
1:22 PM
I also suspect that contact I also suspect that contact lenses can float backward and become lodged in the folds of the brain and so I would never wear them. I told my kid that but he got contacts anyway.
Chemo seems less invasive than surgery, more like glasses than contacts. Sort of. I do not like the idea of dying on the table so it would have to be pretty dire for me, like no other options and death is imminent. I think I might pass on bypass too.
Coronita
August 18, 2011 @
4:34 PM
Actually eaves, Brian made my Actually eaves, Brian made my day… I kinda like feeling like everything is normal. So bring it on… Hell, i didn’t choose my handle because I’m sick. I chose it because unions 3#@$@#$23…. well, never mind…… 🙂
Maybe I should try a few bottles of wine from costco, and that will make the thing go away.. I hear red wine is good for the heart.
scaredyclassic
August 18, 2011 @
7:53 PM
Apparently alcohol stimulates Apparently alcohol stimulates tumor growth but pot may inhibit it.
I fully expect and encourage my kids to joke around about any illness, terminal or otherwise. When/if they get somber, I’ll know my demise is imminent and I’m screwed. So let’s try to keep the gallows humor lively boys.
NotCranky
August 18, 2011 @
8:08 PM
As to being cheered up well, As to being cheered up well, I seriously strained some ligaments in my back about the time this thread started.Anyone know any ugly pilates teachers I could work with?
Flu’s post has been inspirational as a reminder that it could be much worse. Best of luck to you FLU. I admit I would like to see a more self empowering log in name for you at this point…but whatever works. I think you had changed it at one point? I remember you signed off each post with something like “sour grapes for every one” for a while too.
Sweet and costco cheap fermented grapes to you!
CAwireman
August 18, 2011 @
11:23 PM
FLU,I have no understanding FLU,I have no understanding of cancer or encology. Anything I suggest would be speculation. The one thing I would have mentioned would be to consider the herbal/Macrobiotic thing coupled with exercise. But, if you say that its genetic, and wouldn’t have a shot a responding – there it is. Very best of luck and keep us posted if you want to.
CA renter
August 19, 2011 @
2:38 AM
Sucky batch of options there, Sucky batch of options there, flu.
Have you talked to anyone about this?
Intralesional Therapy
Another new area of treatment is with intralesional therapy, where something is introduced or applied directly to the inside of the desmoid tumor. Intralesional injections of irritating solutions, such as acetic acid, has led to tumor shrinkage in some cases. Radiofrequency ablation is a technique where needles are inserted into tumors and radiofrequency waves conducted through the needles lead to intense heating of the tumor. This has also led to some desmoid tumor shrinkage, but the experience to date is limited to a few centers and the long-term results are not yet known.
Like eavesdropper mentioned above, there seems to be a hormonal connection with desmoid tumors. Not sure if your doctors have tried that yet, but it might be worth a shot.
Personally, since this tumor was triggered by surgery, and the risk of recurrence after surgery in someone with FAP is relatively high, I would consider that only after trying some other options.
I still think you should try this, even if used in conjunction with other therapies:
Abstract
Inositol hexaphosphate (IP6) is a naturally occurring polyphosphorylated carbohydrate that is present in substantial amounts in almost all plant and mammalian cells. It was recently recognized to possess multiple biological functions. A striking anticancer effect of IP6 was demonstrated in different experimental models. Inositol is also a natural constituent possessing moderate anticancer activity. The most consistent and best anticancer results were obtained from the combination of IP6 plus inositol. In addition to reducing cell proliferation, IP6 increases differentiation of malignant cells, often resulting in a reversion to normal phenotype. Exogenously administered IP6 is rapidly taken into the cells and dephosphorylated to lower-phosphate inositol phosphates, which further interfere with signal transduction pathways and cell cycle arrest. Enhanced immunity and antioxidant properties can also contribute to tumor cell destruction. However, the molecular mechanisms underlying this anticancer action are not fully understood. Because it is abundantly present in regular diet, efficiently absorbed from the gastrointestinal tract, and safe, IP6 holds great promise in our strategies for the prevention and treatment of cancer. IP6 plus inositol enhances the anticancer effect of conventional chemotherapy, controls cancer metastases, and improves the quality of life, as shown in a pilot clinical trial. The data strongly argue for the use of IP6 plus inositol in our strategies for cancer prevention and treatment. However, the effectiveness and safety of IP6 plus inositol at therapeutic doses needs to be determined in phase I and phase II clinical trials in humans.
Whatever you choose to do, I wish you the very best. Take good care of yourself, flu.
bearishgurl
August 19, 2011 @
10:00 AM
CA Renter [quote=CA Renter]…Personally, since this tumor was triggered by surgery, and the risk of recurrence after surgery in someone with FAP is relatively high, I would consider that only after trying some other options.[/quote]
Agree that the risk of recurrence is high but the large tumors already present pose a threat to vital organs, CAR.
With the Gleevec regimen, he could presumably begin in a study group as soon as 4 weeks after surgery (1-2 years req for the study) and just remain on a (poss reduced) dose indefinitely (to prevent tumors from regrowing or growing to a threatening size). A lot of people have been on this (oral) drug for several years.
I agree with sjglaze that radiation injections (or liquid radiation) may shrink margin tumor tissue left behind after resection (to give flu a good start for a chemo regimen). Flu’s drs can advise him whether he is a candidate for this procedure.
sdcellar
August 19, 2011 @
12:39 PM
Wow, all I can say is I’m Wow, all I can say is I’m really sorry to hear about your situation, flu. It sounds like you’re aggressively investigating your options with some of the best people in the country and that you’ve got a strong will heading into it, which is really good. I hope everything takes a decided turn for the better for you.
CA renter
August 19, 2011 @
5:17 PM
bearishgurl wrote:CA Renter [quote=bearishgurl][quote=CA Renter]…Personally, since this tumor was triggered by surgery, and the risk of recurrence after surgery in someone with FAP is relatively high, I would consider that only after trying some other options.[/quote]
Agree that the risk of recurrence is high but the large tumors already present pose a threat to vital organs, CAR.
With the Gleevec regimen, he could presumably begin in a study group as soon as 4 weeks after surgery (1-2 years req for the study) and just remain on a (poss reduced) dose indefinitely (to prevent tumors from regrowing or growing to a threatening size). A lot of people have been on this (oral) drug for several years.
I agree with sjglaze that radiation injections (or liquid radiation) may shrink margin tumor tissue left behind after resection (to give flu a good start for a chemo regimen). Flu’s drs can advise him whether he is a candidate for this procedure.[/quote]
Yes, I understand the situation as it currently stands, I just think that additional surgery might make the situation even worse. It’s definitely a tough decision to make. Not saying that he shouldn’t try Gleevec (not that it matters what I think, as I’m not a doctor), he probably should. Just posting some other options, as surgery seems to be a bit too high-risk in this situation, IMO.
eavesdropper
August 26, 2011 @
12:58 AM
flu, I just sent you a PM flu, I just sent you a PM with a list of NCI-associated clinical care providers who have desmoids experience, and other aggressive fibromatosis info. I suspect that it will be difficult reading the information in the message format. If you wish, I can email the Word file as an attachment, or I can fax it to you. Let me know.
moneymaker
August 26, 2011 @
8:33 PM
Have you been endoscoped yet Have you been endoscoped yet with endoscopic polypectomy? Sounds like it is not malignant so I would be in favor of slice-n-dice if it is cancerous. Surgery nowadays may be far advanced to what you had when you were 31. They just found a very promising treatment for melanoma recently so perhaps there will be a cure right around the corner. Are you having symtoms or was this caught during a yearly physical? The earlier the better.
scaredyclassic
August 26, 2011 @
8:43 PM
In tangentially related news, In tangentially related news, friends kid just diagnosed w stage 4 cancer w no warning. I’m hoping to die before hearing anything like that.
CA renter
August 27, 2011 @
1:38 AM
walterwhite wrote:In [quote=walterwhite]In tangentially related news, friends kid just diagnosed w stage 4 cancer w no warning. I’m hoping to die before hearing anything like that.[/quote]
Unreal. I’m so sorry, scaredy. That’s every parent’s worst nightmare, IMHO.
Coronita
August 26, 2011 @
9:28 PM
eavesdropper wrote:flu, I [quote=eavesdropper]flu, I just sent you a PM with a list of NCI-associated clinical care providers who have desmoids experience, and other aggressive fibromatosis info. I suspect that it will be difficult reading the information in the message format. If you wish, I can email the Word file as an attachment, or I can fax it to you. Let me know.[/quote]
thanks let me read
nostradamus
August 29, 2011 @
4:46 PM
Hi Flu,
Sorry to hear about Hi Flu,
Sorry to hear about your condition. I vote for surgery followed by chemo. Just curious, how old are you?
I don’t know if this was mentioned in the thread but there are techniques to reduce the risk of surgery-induced cancer metastasis. Have your doctors discussed this?
There is no way of looking There is no way of looking into the future and *knowing* what is more likely to cause the outcome you want.
All you can do is make a list of the pros and cons, which it looks like you have already done, then take that step into the abyss where you don’t know, you just do what feels right for you. The consequences come and the only regrets I have are not the *wrong* choices I made, but the times when I drowned in logic when my (gut/soul/emotions…whatever) wanted something else.
I also find it helpful when faced with such decisions to spend some time thinking about how I want to live, how I want to die, to think about fear and how I want to deal with it.
All the probabilities and science and experts provide some information…but that information is limited and doesn’t sum you up.
My suggestion is that no matter what you choose with regard to medical treatment, the bigger questions are, “Who are you?”, “What do you want?”
Rilke says that all you can do is live the questions, and that maybe (a big maybe) one day live your way into the answers.
Would it make a difference if the question you are living is, “Should I accept treatment X,Y or no treatment,” or if the question you are living is, “What do I want?”
To me, the question does change things somehow…but I can see how that might not be true for another.
One more proverb aimed towards doctors, is: “Cure rarely, improve often, comfort always.” You could turn that around…it sounds like a cure is extremely unlikely for you, that you are at best looking for some improvement. No matter what, you can seek comfort from whatever sources provide it.
August 17, 2011 @ 11:54 AM
I wanted to present a
I wanted to present a interesting dilema I have. And I’m curious what you would do.
Background:
I have a soft tissue “benign” desmoid tumor growing in my abdomen (ok it’s really 2 tumors)
It is benign, but very aggressive..think of it as scar tissue that doesn’t stop growing…
Without treatment, it will will wrap around organs and blood vessels, and when that happens, the organ is toast.
It’s starting to get entwined with my small intestines
I have three options: surgery, chemo, or do nothing .
Here’s the pros/cons of each
1) Surgery.
Pros:
*Doctor’s think the current tumors can be removed (or at least most of it) based on all the CT/MRI imaging
*When another tumor comes back (because it will come back most likely),
there is an option to use radiation in addition to chemo, if we catch the tumor when it’s small.
Cons:
*I might end up losing a good portion of my small bowel
*This tumor was surgery induced… It was a direct result from my first surgery.
So it’s almost certain that if I have surgery to remove it, another tumor(s) will come back.
And they might come back even more aggressive and/or in a different location that cannot be removed next time.
*Doctors might open me up only to find out I can’t be operated on…the MRI/CT scan might not show everything, and
if I’m really unlucky, they will only know that I can’t be operated on after they already cut me open.
2) Chemo
Pros:
*If I do respond to chemo, the tumor will be controlled and no longer move (and maybe even shrink).
I don’t need to worry so much about a new tumor growing back due to another surgery.
Cons:
*There is no guarantee any chemo on a tumor will work. Folks in similar situation are all over the board in whether it works or not.
*Chemo takes 6 months, and if it doesn’t work, surgery will most likely no longer be an option
*If the current tumor isn’t removed, radiation will also not be an option, because it’s currently too large to be radiated
*TBD side effects from chemo
3) Do nothing and wait and see.
Pros:
*Wait until this thing starts giving me pain symptoms, health issues before doing something (currently it isn’t. I wouldn’t have found out if it wasn’t because I ate a bag of nuts that got stuck in my intestines)…. Some doctors think the more “treatment” one does, the more it aggrevates the problem.
*Take a chance that this tumor slows down and stops growing on itself, which is a possibility.
Cons:
*If it doesn’t stop, game over.
So, what would you do? Don’t worry. I’m not asking for medical advice…The issue here is I’ve already talked to several leading experts in this field, and even then, they really don’t agree on what should be done, so ultimately I need to flip a coin or something
August 17, 2011 @ 1:31 PM
check my PM.
check my PM.
August 17, 2011 @ 1:43 PM
flu – are there no
flu – are there no alternative treatments that are available?
August 17, 2011 @ 2:14 PM
jpinpb wrote:flu – are there
[quote=jpinpb]flu – are there no alternative treatments that are available?[/quote]
That really is the last resort after everything else fails.
August 17, 2011 @ 2:27 PM
I would think I’d do some
I would think I’d do some alternative treatment before I do absolutely nothing and wait. But it’s all very scary and easy for me to say.
August 17, 2011 @ 2:38 PM
First that hardly sounds
First that hardly sounds “benign” if it continues to grow and can destroy organs.
My answer comes with a lot of baggage and bias. My brother had a cancer that wrapped entirely around his intestines – crimping them, obstructing them. He thought he had a flare up of diverticulitus, but instead it was a super aggressive cancer. When he stopped being able to even hold down liquids because the food/liquid had no place to go, due to the obstruction, he went to the hospital. At that point they deemed it as too far gone for surgery, and tried shrinking it with chemo.
Unlike my mom (ovarian cancer) and dad (prostate cancer, then multiple myeloma)… my brother did NOT respond at all to the chemo. The tumor continue to grow. Eventually we got him to a specialist in Denver who was able to hold it at bay – through a series of extreme surgeries… probably extended his life about 3 weeks. All of which was in the ICU.
Based on this, my brother’s neuroendocrine carcinoma, which is different than your desmoid tumor… my gut says to take it out why it’s operable. You state that it’s already entwined with your intestines… If it obstructs (by wrapping all the way around, and constricting) your quality of life become zero. In my brother’s case the cancer eventually formed a fistula into the intestines – which fed it’s growth.
I would do the surgery, and follow up with radiation/chemo as needed. And if the chemo doesn’t work – stop it… chemo can be more devistating than the illness. My mom tolerated chemo, and it seemed to keep her cancer growth at bay… my brother was almost killed by the chemo, and it didn’t control the cancer. So cut the chemo if it doesn’t work.
I realize that I’m comparing apples/oranges… but all I’ve got to base it on is what I saw my brother go through.
I am so sorry you’re having to make these choices. I hope whatever you choose – it’s successful.
August 17, 2011 @ 2:38 PM
One more thing. For most
One more thing. For most things medical I’m a do nothing type of person. But what you describe falls into the do something camp.
August 17, 2011 @ 4:58 PM
My friend just had his second
My friend just had his second Schwannoma tumor removed from below his stomach, his other one was wrapped around his lower spine. Both surgeries were a success and he fully recovered in a month or so after each one. Good luck flu, I know that really sucks having to deal with that.
August 17, 2011 @ 5:02 PM
Having been through
Having been through cancer/tumor related illnesses with family several times, my vote would be surgery asap. Attack it as aggressively as early as you can while you are at maximum strength.
Best Wishes for a speedy recovery
August 17, 2011 @ 5:20 PM
flu wrote:I wanted to present
[quote=flu]I wanted to present a interesting dilema I have. And I’m curious what you would do.
Background:
I have a soft tissue “benign” desmoid tumor growing in my abdomen (ok it’s really 2 tumors)….It is benign, but very aggressive..think of it as scar tissue that doesn’t stop growing…Without treatment, it will will wrap around organs and blood vessels, and when that happens, the organ is toast.
It’s starting to get entwined with my small intestines
I have three options: surgery, chemo, or do nothing. So, what would you do? Don’t worry. I’m not asking for medical advice…The issue here is I’ve already talked to several leading experts in this field, and even then, they really don’t agree on what should be done, so ultimately I need to flip a coin or something[/quote]
Flu, if you don’t mind me asking (hell, YOU posted this, so I don’t give a crap if you do mind) , who have you seen so far on this? You don’t have to give me names if you don’t want to, but what about medical specialties?
This is a very tough situation. The tumor may be “benign” in its pathology, but its behavior is another matter. As you mention, there are drawbacks to every option.
As I’m sure you’re aware, the tumor is not an entity unto itself, and its formation and growth are influenced by any or all of a number of factors, one of which you mentioned. This type of tumor is extremely rare, so it stands to reason that the body of knowledge regarding etiology and treatment is relatively small, and laboratory and clinical research, and studies that examine efficacy of various treatments, are also in short supply.
Since this is not your first encounter with this neoplasm, it’s essential (IMHO) that you get yourself into a program that is able to deal with your disease from a medical and surgical standpoint. While you can consult these physicians separately, I think you’d be much better off going to a National Cancer Institute-designated comprehensive cancer center (you’re fortunate to have quite a few in California). Even if you cannot undergo treatment there, you should, at the least, have a comprehensive workup by clinicians who specialize in aggressive soft-tissue tumors that target connective tissue. A good NCI CCC will have a staff that includes medical oncologists, geneticists, pathologists, radiation oncologists, and surgeons that are experienced in tissue-sparing surgery, and will also have access to cutting edge basic science researchers. The advantage is that they communicate with each other in coming up with the best plan(s) of action, but, aside from examinations and procedures, you should only have to deal with one clinician who oversees your case. The bonus is that CCCs are wired into the latest clinical trials. Because the most difficult medical/surgical cases present to CCCs, you’ll have clinicians who are experienced in treating rare conditions, instead of a surgeon who has seen only one or two desmoids in a 40-year career.
The problem with your question is that the way it is posed necessitates a simple answer. Yours is not, in any way, a simple condition. For instance, is it just a case of idiopathic uncontrolled soft tissue cell division? Or is the recurrence of these neoplasms part of a larger insidious disorder having nothing to do with your GI system? Then the chemo issue: Strictly-speaking, chemotherapy is the treatment of disease with chemicals. There is a very large expansive choice of chemical-based therapies for desmoid tumors. Do you want systemic, which affect the entire body, or intralesional? Cytoxic (what most people think of as cancer chemo) such as doxorubicin – a personal favorite – or methotrexate and vinblastine? Nonsteroidal antiinflammatories (NSAIDS) such as over-the-counter aspirin and motrin, and prescription sulindac and COX-2 inhibitors? Hormones including progesterone, tamoxifen, and raloxifene? Or Gleevec, a tyrosine-kinase inhibitor that targets receptors on desmoid tumors? How much, how often, how long?
And that’s just chemo. In a situation where the aggressive neoplastic behavior can cause irreparable organ damage, threatening debilitation or even death, you need to be assessed and treated by a team who is not only familiar with the complexities of a rare disorder, but who can attack it using molecular, genetic, biological, and cellular approaches. As a patient, flu, you need to be as informed as possible, but equally important is the quality and integrity of the information you are given. While decision-making will still be difficult, you will have more confidence when making them, and far less second-guessing after.
I worked with a researcher-clinician at Johns Hopkins a few years back who is renowned for his work in the molecular and genetic etiology of gastrointestinal tumors. I am sure can provide me with information on what program to consult in your area. Let me know if you are interested.
August 17, 2011 @ 6:07 PM
Great post eavesdropper!
Great post eavesdropper! Piggington at its finest
August 17, 2011 @ 6:39 PM
Although I am not offering
Although I am not offering medical advice, I completely agree with eavesdropper on checking out an NCI-Designated Comprehensive Care Cancer Center. In our region, that would be the Moores Cancer right here at UCSD in La Jolla. There are several other NCI-Designated facilities in California.
I have friends who have been treated there, as well as at MD Anderson in Houston, and at Johns Hopkins. From what they have told me, the comprehensive nature of the treatment at these facilities far surpasses other options.
Take care, and God Bless.
August 17, 2011 @ 7:38 PM
eavesdropper wrote:
Flu, if
[quote=eavesdropper]
Flu, if you don’t mind me asking (hell, YOU posted this, so I don’t give a crap if you do mind) , who have you seen so far on this? You don’t have to give me names if you don’t want to, but what about medical specialties?
This is a very tough situation. The tumor may be “benign” in its pathology, but its behavior is another matter. As you mention, there are drawbacks to every option.
As I’m sure you’re aware, the tumor is not an entity unto itself, and its formation and growth are influenced by any or all of a number of factors, one of which you mentioned. This type of tumor is extremely rare, so it stands to reason that the body of knowledge regarding etiology and treatment is relatively small, and laboratory and clinical research, and studies that examine efficacy of various treatments, are also in short supply.
Since this is not your first encounter with this neoplasm, it’s essential (IMHO) that you get yourself into a program that is able to deal with your disease from a medical and surgical standpoint. While you can consult these physicians separately, I think you’d be much better off going to a National Cancer Institute-designated comprehensive cancer center (you’re fortunate to have quite a few in California). Even if you cannot undergo treatment there, you should, at the least, have a comprehensive workup by clinicians who specialize in aggressive soft-tissue tumors that target connective tissue. A good NCI CCC will have a staff that includes medical oncologists, geneticists, pathologists, radiation oncologists, and surgeons that are experienced in tissue-sparing surgery, and will also have access to cutting edge basic science researchers. The advantage is that they communicate with each other in coming up with the best plan(s) of action, but, aside from examinations and procedures, you should only have to deal with one clinician who oversees your case. The bonus is that CCCs are wired into the latest clinical trials. Because the most difficult medical/surgical cases present to CCCs, you’ll have clinicians who are experienced in treating rare conditions, instead of a surgeon who has seen only one or two desmoids in a 40-year career.
The problem with your question is that the way it is posed necessitates a simple answer. Yours is not, in any way, a simple condition. For instance, is it just a case of idiopathic uncontrolled soft tissue cell division? Or is the recurrence of these neoplasms part of a larger insidious disorder having nothing to do with your GI system? Then the chemo issue: Strictly-speaking, chemotherapy is the treatment of disease with chemicals. There is a very large expansive choice of chemical-based therapies for desmoid tumors. Do you want systemic, which affect the entire body, or intralesional? Cytoxic (what most people think of as cancer chemo) such as doxorubicin – a personal favorite – or methotrexate and vinblastine? Nonsteroidal antiinflammatories (NSAIDS) such as over-the-counter aspirin and motrin, and prescription sulindac and COX-2 inhibitors? Hormones including progesterone, tamoxifen, and raloxifene? Or Gleevec, a tyrosine-kinase inhibitor that targets receptors on desmoid tumors? How much, how often, how long?
And that’s just chemo. In a situation where the aggressive neoplastic behavior can cause irreparable organ damage, threatening debilitation or even death, you need to be assessed and treated by a team who is not only familiar with the complexities of a rare disorder, but who can attack it using molecular, genetic, biological, and cellular approaches. As a patient, flu, you need to be as informed as possible, but equally important is the quality and integrity of the information you are given. While decision-making will still be difficult, you will have more confidence when making them, and far less second-guessing after.
I worked with a researcher-clinician at Johns Hopkins a few years back who is renowned for his work in the molecular and genetic etiology of gastrointestinal tumors. I am sure can provide me with information on what program to consult in your area. Let me know if you are interested.[/quote]
Here’s the situation. I’m a lucky winner of FAP, and being a spontaneous mutation. So the colon was removed when I was 31 to avoid the almost guarenteed colon cancer…Except someone didn’t really tell me that that I was also at a high risk to get desmoid tumor from surgery. In hindsight, I was naive and didn’t think desmoid would be an issue, and didn’t do my due diligence with other people who have similar situations. Because if it were, I would have taken my chances and to avoided surgery until I got colon cancer and was older (saying 40-50)…because some research suggests that desmoid from surgery trama might not occur as easily with older people.
Well, that’s water over the bridge right now.
UCSD/Moore’s Cancer was treating me. However, things started to concern me about UCSD… My oncologist is leaving, my GI doctor left, and they aren’t a leading sarcoma/soft tissue expert.
Nevertheless, they are the people that know my history the best.
Since then, I’ve talked to the following
Cedar-Sinai:
Head of oncology.
I also have an appointment with the head of oncology surgery.
Head of oncology surgery isn’t against surgery but raises concerns that (1) I might lose too much bowel and (2) surgery might not help and make it worse, because research suggests surgery makes things reoccur, sometimes worse.
The head of oncology surgery indicated on the phone that he thinks things can be removed and suggests to go for it. I meet with him next week to discuss further.
UCLA:
Renowned oncology surgeon. Has also seen this shit. Supposedly one of the best doctors in CA for this shit.
They met at a tumor board meeting. The Cedar-Sinai head of oncology was there… UCLA recommended against surgery, and suggested using a heavy dose of chemo…
My issue is that if I listen to them, I will miss the opportunity for surgery, which raises the “what if chemo doesn’t work” scenario
Loma Linda University Cancer Center
Director of oncology surgery. This supposedly deals a lot with desmoids/fap cases
They had a tumor board review meeting about my case. They think surgery is a good option, but isn’t sure if the second tumor can be removed. After the tumor is removed, they plan on moving my organs asside from the area of extraction, and hitting me with radiation to see if that will prevent it from reoccuring.
Cleveland Clinic
Dr. Church: I have an upcoming appointment with him, as he’s the leading expert in this area
Others have said he is very conservative and does not always recommend surgery. However, in my case he indicated I should get surgery. I haven’t talked to him in greater details, but will do so.
I have not talked to City of Hope, USC, Mount Sinai in New York, or Anderson in Texas, which I found people on message boards with similar conditions are going through.
Also alternative treatments, such as herbalist/naturalist (even ones that are licensed doctors) might work if there are dietary or chemical imbalances. But when there is a genetic issue, these things don’t really work. Because you really can’t fix a genetic problem.
eaves, if there’s someone/some organization that you feel I’m missing, if you can PM me, that would be great.
FWIW: I’m really not scared or freaking out…Just really annoyed.
August 17, 2011 @ 7:48 PM
Damn, flu. I am so sorry
Damn, flu. I am so sorry that you are going through this. I hope whatever decision you make works out best. I wish I could offer you better advice.
August 17, 2011 @ 7:55 PM
flu wrote:eaves, if there’s
[quote=flu]eaves, if there’s someone/some organization that you feel I’m missing, if you can PM me, that would be great.
FWIW: I’m really not scared or freaking out…Just really annoyed.[/quote]
Thanks for info, flu. I was wondering about the possibility of FAP/mutation, but didn’t want to add to concerns if that wasn’t part of the picture.
I will PM you, either tonight or tomorrow morning.
August 17, 2011 @ 7:59 PM
flu wrote:…eaves, if
[quote=flu]…eaves, if there’s someone/some organization that you feel I’m missing, if you can PM me, that would be great…[/quote]
flu, I can certainly understand why unlucky persons with inherited conditions, especially FAP, would choose to get prophylactic surgery at a young age, as you did. At least you found out you carried FAP at a young age! Please don’t second guess your decision now. Colon cancer is very deadly and often difficult to catch early enough to be able to even obtain a remission. And the chemo cocktails used to treat it are also extremely toxic and even deadly.
See my post directly above. Contact the Sarcoma Alliance for Research through Collaboration (SARC) tomorrow, mentioned in the link.
see: http://www.sarctrials.org/
The SARC can help you decide what to do, in conjunction with your doctors.
August 18, 2011 @ 12:28 AM
I hope things work out for
I hope things work out for you healthwise flu- I didn’t participate in the poll because it is such a tough decision and it’s one thing for me to give people bad stock advice and another to give bad health advice 🙂
August 19, 2011 @ 6:44 PM
flu wrote: Here’s the
[quote=flu] Here’s the situation. I’m a lucky winner of FAP, and being a spontaneous mutation. So the colon was removed when I was 31 to avoid the almost guarenteed colon cancer…Except someone didn’t really tell me that that I was also at a high risk to get desmoid tumor from surgery. In hindsight, I was naive and didn’t think desmoid would be an issue, and didn’t do my due diligence with other people who have similar situations. Because if it were, I would have taken my chances and to avoided surgery until I got colon cancer and was older (saying 40-50)…because some research suggests that desmoid from surgery trama might not occur as easily with older people. Well, that’s water over the bridge right now.[/quote]
No one does due diligence on health-related issues at age 31, so don’t beat yourself over the head on this one (unless you’re really into self-flagellation). As for your increased risk of desmoid, yeah, I’m kinda pissed that no one mentioned it to you. If I read your post correctly, your earlier surgery was prophylactic in nature, which was your choice of action following genetic testing/ dx. of FAP. Genetic testing should not be offered to patients outside of a setting where there is, at the least, a masters-level genetics counselor on staff. Patients should be counseled PRIOR to having the specimen drawn, including the limitations of the testing, significance of positive AND negative results, disorders for which they are being tested, details of all physical treatment choices (therapeutic or prophylactic), including side effects and the possibility of associated mutation-related morbidity, and the physical and psychological repercussions of the testing and revelation of results. Unfortunately, by the late 90s, the enormous economic potential of genetic testing was being exploited by entities who, reluctant to cut down on profits, ignored the need for professional genetics counseling or even training materials for inexperienced providers: for-profit hospitals and health providers, and companies offering direct-to-patient testing kits. You should have been apprised of your age-related post-surgical increased risk of desmoid tumor , and a whole big bunch of other stuff, well before they took a tube of your blood for genetic testing. Speaking of the good ol’ early days, this site details the efforts (and the warnings) made by the NHGRI, in trying to ensure true informed consent and receipt of quality information by patients seeking genetic testing for disease-related mutations:
www/biotech.law.lsu.edu/research/fed/tfgt/
That being said, I’m going to impart a gem of information here, flu: Ignore statistics. With regard to you and your disease specifically, statistics are meaningless. Statistics are extremely valuable to clinicians who evaluate and compare them to create a course of treatment. But, as an individual trying to figure out what to do, you should not use them. Patients can get tightly wrapped around the axle while reading journal articles, and agonizing over the fact that 55% had 5-year local recurrence with Miracle Drug A while 59% had 5-year local recurrence with Not-So-Miracle Drug B. Let your doctor(s) do the heavy lifting, and have them share their findings with you. THEN ask questions. There’s nothing wrong with you getting involved in your own research and getting yourself informed – in fact, I recommend it highly from a psychotherapeutic standpoint. But avoid the tendency to apply the stats in the studies to you. You, by yourself, are a statistically-insignificant cohort.
[quote=flu] Cedar-Sinai: Head of oncology.
I also have an appointment with the head of oncology surgery.
Head of oncology surgery isn’t against surgery but raises concerns that (1) I might lose too much bowel and (2) surgery might not help and make it worse, because research suggests surgery makes things reoccur, sometimes worse…..The head of oncology surgery indicated on the phone that he thinks things can be removed and suggests to go for it….
UCLA: Renowned oncology surgeon. Has also seen this shit. Supposedly one of the best doctors in CA for this shit……
Loma Linda University Cancer Center: Director of oncology surgery. This supposedly deals a lot with desmoids/fap cases….
Cleveland Clinic: Dr. Church: I have an upcoming appointment with him, as he’s the leading expert in this area….. in my case he indicated I should get surgery. I haven’t talked to him in greater details, but will do so……
Also alternative treatments, such as herbalist/naturalist (even ones that are licensed doctors) might work if there are dietary or chemical imbalances. But when there is a genetic issue, these things don’t really work. Because you really can’t fix a genetic problem. [/quote]
It looks like you’ve consulted with a lot of surgeons here. Yes, they are oncologic surgeons, but, regardless, they’re coming from a “surgery-as-therapy” viewpoint. It would be the same if you were seeing a radiation oncologist: an oncologic specialist, but one who looks at management of the disease from the perspective of his/her medical specialty. And they are more focused on the geography of the disease: organs infiltrated, organs affected by proximity of tumor growth, damage to surrounding tissue, inaccessibility of entire tumor, choice of treatment based on inability to get clean margins, etc.). Surgeons deal with the threat of desmoid (damage to tumor-containing tissue or proximal tissue) by excising the tumor, radiation oncologists by “burning” it, so to speak. But that, in itself, does not remove the growth potential of the tumor. Desmoid tumor disease DOES respond well to these treatment modalities, but largely because of desmoid’s lack of metastatic potential.
However, the medical oncologist looks at the “bigger picture”, so to speak: He/she examines the tumor as a discrete mass, as a product of gene expression, at the tumor’s potential for growth and its tendency to recur. He/she is very familiar with, and endorses the use of, surgery and radiation oncology. But the tumor is also looked at microscopically and genetically, to try and figure out why it grew where it did, when it did, and it’s examined for its potential to be manipulated hormonally or immunologically. This is the individual that’s going to know this disease from every angle, and who will look at your pathology report, your genetic testing results, your G.I. operative note and discharge summary, your general health history, and an extensive family history of all cancers. The medical oncologist is usually the one that oversees the entire treatment period, and then does followup at regularly scheduled intervals.
I strongly advise you not to make a decision in the absence of an extensive consultation with a medical oncologist who specializes in sarcomas and soft tissue tumors. You will not find one who works exclusively in desmoids (it’s simply too rare of a disease), but you should be able to find several throughout the United States, preferably one who has worked in both basic research and clinical settings.
If you decide that you want to consult an oncologist far from home, but you want to be treated in California, you should let them know this when you make the appointment. If you have not been keeping copies of your medical records, you need to start now (discharge summaries, op notes, lab results, path reports, and computer files with your xray/MRI/CT films). Don’t be surprised if they ask you to bring slides of your tumor to examine.
If cost is not a factor, I’d advise going to an NCI-designated comprehensive cancer center that has a special sarcoma-soft tissue tumor unit. A facility like that should have at least one or two medical oncologists who have a subspecialty in desmoids, perhaps along with some current translational research activities. A place like this will, in all likelihood, have oncologic surgeons, rad oncologists, and pathologists ON SITE, who also specialize in soft-tissue neoplasms. What’s more is that the NCI has been granting funds for the study of alternative medicine modalities, and some of these places have clinical alt med specialists on board, also. And if you are found to be a candidate for a clinical drug trial, they will have no trouble locating and entering you in one that is appropriate.
I’m researching NCI CCC locations for you, and have started a list. I’ll PM you with that.
December 5, 2012 @ 3:10 PM
I have a similar situation
I have a similar situation and live in CA. Can you please tell me where I could go for having my case reviewed at the tumor board meeting? Also can you please give me names of the Head of Oncology at Cedar-Sinai and UCLA Renowned oncology surgeon.
Thank you very much
December 6, 2012 @ 6:55 AM
needhelp wrote:I have a
[quote=needhelp]I have a similar situation and live in CA. Can you please tell me where I could go for having my case reviewed at the tumor board meeting? Also can you please give me names of the Head of Oncology at Cedar-Sinai and UCLA Renowned oncology surgeon.
Thank you very much[/quote]
I’ll send you a private message.
I have contacts for you at UCLA, Cedars, and Cleveland Clinic..
I also went to MD Anderson, but I would advise NOT going there. (Big waste of time).
FWIW: some people that regularly attend the UCLA tumor review board also attend the one at Cedars and vice versa. So you might as well talk to both.
There is one additional place you can consider if you think you might go down the path of radiation therapy… Loma Linda University.
Depending on what you have, I would recommend paying Cleveland Clinic a visit….I found the one of the top rank doctors there in my area, and he was the only surgeon that I met that advised against surgery.
August 19, 2011 @ 9:44 AM
One other option to consider
One other option to consider is surgery + adjuvent radiation therapy, for surgical resections with positive margins. See this paper on PubMed
“The role of adjuvant radiotherapy in the treatment of resectable desmoid tumors.” I work in radiation oncology and consider today’s radiation therapy treatments much more focussed than even 5 years ago, with fewer side effects (certainly no worse than chemo).
August 17, 2011 @ 12:15 PM
flu, the ability to vote in
flu, the ability to vote in the “poll” disappeared. Based upon my knowledge of the chemo used to treat this type of tumor, and the fact that you are still young, I think you should do both.
disclaimer: I am not a medical professional
August 17, 2011 @ 4:49 PM
I would do surgery
I would do surgery immediately.
Chemo is nasty stuff. I watched my mother suffer through it and really hate even hearing the word now.
Surgery is much easier on the body in most cases.
August 17, 2011 @ 5:18 PM
My mom had it in her lymph
My mom had it in her lymph nodes and went the chemo route. She was miserable at the time, but she made it and I feel fortunate she did what she did.
She actually acquired a new found sense of living after going through everything that is truly inspiring to this day. Of course everyone feels differently, but I think there is a lot to be said about hope, accepting the challenge and saying &%$# you to whatever the the odds might say or statistics might show. If you do nothing I’d be afraid of it being similar to giving up. I would definitely do something to better my chances. I would want to put up a fight one way or another, but I am not in your situation and want to be respectful.
Good luck to you whatever you choose to do!!
August 17, 2011 @ 5:28 PM
Best of luck to you flu.
You
Best of luck to you flu.
You have insurance and access to the best doctors.
A working person without health insurance would likely end up with County Medical Services.
http://www.sdcounty.ca.gov/hhsa/programs/ssp/county_medical_services/index.html
Medi-cal access is limited
http://www.dhcs.ca.gov/services/medi-cal/Pages/Medi-CalEligibility.aspx
August 18, 2011 @ 3:57 PM
briansd1 wrote:Best of luck
[quote=briansd1]Best of luck to you flu.
You have insurance and access to the best doctors.
A working person without health insurance would likely end up with County Medical Services.
http://www.sdcounty.ca.gov/hhsa/programs/ssp/county_medical_services/index.html
Medi-cal access is limited
http://www.dhcs.ca.gov/services/medi-cal/Pages/Medi-CalEligibility.aspx%5B/quote%5D
Brian, I adore you, and have great respect for your intelligence. But the clue phone is ringing, and it’s for you.
Some moments in life are teaching opportunities. This is not one of those moments.
You state that flu has insurance coverage, and, indeed, flu has not stated otherwise. Flu’s post briefly describes his dilemma, and asks for Piggs’ personal opinions regarding the choice he is up against. So for what reason would you respond with a comment about where, if he had inadequate or no coverage, he’d be forced to go for care in Southern California, with links to the websites.
While flu’s responses to posts regarding societal needs and concerns can sometimes have a caustic tone, I have no doubt that he’s well aware of the piss-poor health care alternatives available to many uninsured or underinsured Californian residents. Or that he is, indeed, fortunate in having a choice of care provider(s) and treatments.
However, the fact remains that he’s experiencing one of those unfortunate periods in life when one is diagnosed with a life-altering, and possibly life-threatening, condition. Fortunate as flu is to have good coverage, I’m pretty sure that your “reminder” is not only unnecessary, but probably not doing much to raise flu’s spirits, or make him feel better about what’s currently happening in his life.
While I’m sure that there was no malicious intent on your part, next time a post strikes you as a fine “teaching opportunity”, stop and give careful consideration to the situation. And send the links to the Tea Party congressional caucus members.
August 18, 2011 @ 4:23 PM
eavesdropper wrote:
Some
[quote=eavesdropper]
Some moments in life are teaching opportunities. This is not one of those moments.[/quote]
Ok, You’re right. I’m sorry.
My comment belongs on a different thread:
http://piggington.com/ok_can_someone_tell_me_what_good_is_left_for_the_health_care_ref
August 17, 2011 @ 6:49 PM
Agree with eavesdropper. If
Agree with eavesdropper. If it were me, before I made a choice on what seem like discrete options, I would aggressively pursue a state-of-the-art treatment plan with the most advanced research-based medical team I could find. UCSD would be great. So would UCLA. All in our backyards!
August 17, 2011 @ 7:03 PM
This is the opinion of a none
This is the opinion of a none medical person.
But, on this one, I think you should try everything.
1. Try surgery so doctor can have a chance to get rid of it and delay things. Question of when best to do surgery is probably a tougher one.
2. Chemo if surgery did not solve it.
August 17, 2011 @ 7:34 PM
Great post, eavesdropper. I
Great post, eavesdropper. I made the suggestion to flu right after he posted this morning to pursue doctors at UCSD Moores Cancer Center as they were one of the first ones to offer clinical trials with Gleevec for these types of tumors. They would be able to tell him if his tumors would respond to it. It is a targeted biologic agent in pill form and although it does have side effects which vary from person to person, one can live a normal life (usually keep FT employment) while treating (sometimes the dose ends up needing to be halved). Some people even “manage” their conditions for years with Gleevec. It has been successfully used off-label in recent years in shrinking flu’s type of tumor.
http://www.p4healthcare.com/go/oncology/pbis/news.aspx?NewsItemId=20101008drgd003.xml
If flu’s disease and previous surgery is caused from FAP, a hereditary condition, that is all the more reason to have his tumors resected again ASAP and this time begin a serious regimen of chemo 1-2 months later, IMHO.
I agree that a case manager in a dedicated Nationally-recognized CC can work out all these details and lay out a patient’s options better for him/her so it is more understandable and less confusing.
All my best to you in making the right decisions for you, flu.
August 18, 2011 @ 1:49 AM
Flu,
Don’t know what to say.
Flu,
Don’t know what to say. Whatever your decision is, wish you the best!
August 18, 2011 @ 7:56 AM
I don’t know. In general I
I don’t know. In general I don’t trust doctors. I would try to avoid everything I could. But maybe in this case I’d have to do something. Somehow I think I’d gobfor chemo because I’m so alarmed about getting cut open. But keep in mind I cannot open my eyes underwater because I’m afraid water will get into my brain.
August 18, 2011 @ 8:45 AM
I don’t know if you care what
I don’t know if you care what an obstetrician has to say, but if it were me I’d be looking to get on one of the Imatinib (Gleevec) experimental protocols. This isn’t my medical playground, but the Imatinib has been showing pretty good results. (didn’t vote, as this option’s not up there)
I think the surgery is potentially a crappy option, as these things tend to recur, especially in FAB patients. Also remember, every time they open you up you’re increasing the likelihood of a surgical complication- you might wake up with a colostomy, which is not an unlikely scenario if you have a lot of scar tissue around your bowel. Of couse, as you stated, these tumors are locally agressive. Definitely in a damned if you do, damned if you don’t situation. That’s why I like the chemo option, and the Gleevec seems to be better then the usual agents. Would be nice to wait until the investigations are done, but that could be years.
Best of luck, whatever you decide to do. Now would somebody tell me how I gain Scaredy’s trust?
August 18, 2011 @ 1:15 PM
Oops, I guess that should be
Oops, I guess that should be ileostomy, I just remembered you had a colectomy! And yes I know it’s FAP, not FAB- don’t know how I did that, it’s not like the P is next to the B on the keboard.
August 18, 2011 @ 1:58 PM
Navydoc wrote: Best of luck,
[quote=Navydoc] Best of luck, whatever you decide to do. Now would somebody tell me how I gain Scaredy’s trust?[/quote]
Deluxe box set of “Breaking Bad” episodes. Case of Bombay Sapphire gin. “Widowmaker”-sized bag of Costco cheese curls.
Okay, I admit, that’s a surefire path to MY trust. But might score some b.p. with scaredy, too.
August 18, 2011 @ 2:03 PM
walterwhite wrote:……. But
[quote=walterwhite]……. But keep in mind I cannot open my eyes underwater because I’m afraid water will get into my brain.[/quote]
Open them. From the sound of things, it’s already too late.
Besides, you won’t have to take your contact lenses out to clean them if you fill your pool with multi-purpose solution.
August 18, 2011 @ 11:45 AM
I have no expertise or
I have no expertise or anything else to contribute other than my sympathy. But for what it’s worth I’d lean toward the chemo myself.
August 18, 2011 @ 1:22 PM
I also suspect that contact
I also suspect that contact lenses can float backward and become lodged in the folds of the brain and so I would never wear them. I told my kid that but he got contacts anyway.
Chemo seems less invasive than surgery, more like glasses than contacts. Sort of. I do not like the idea of dying on the table so it would have to be pretty dire for me, like no other options and death is imminent. I think I might pass on bypass too.
August 18, 2011 @ 4:34 PM
Actually eaves, Brian made my
Actually eaves, Brian made my day… I kinda like feeling like everything is normal. So bring it on… Hell, i didn’t choose my handle because I’m sick. I chose it because unions 3#@$@#$23…. well, never mind…… 🙂
Maybe I should try a few bottles of wine from costco, and that will make the thing go away.. I hear red wine is good for the heart.
August 18, 2011 @ 7:53 PM
Apparently alcohol stimulates
Apparently alcohol stimulates tumor growth but pot may inhibit it.
I fully expect and encourage my kids to joke around about any illness, terminal or otherwise. When/if they get somber, I’ll know my demise is imminent and I’m screwed. So let’s try to keep the gallows humor lively boys.
August 18, 2011 @ 8:08 PM
As to being cheered up well,
As to being cheered up well, I seriously strained some ligaments in my back about the time this thread started.Anyone know any ugly pilates teachers I could work with?
Flu’s post has been inspirational as a reminder that it could be much worse. Best of luck to you FLU. I admit I would like to see a more self empowering log in name for you at this point…but whatever works. I think you had changed it at one point? I remember you signed off each post with something like “sour grapes for every one” for a while too.
Sweet and costco cheap fermented grapes to you!
August 18, 2011 @ 11:23 PM
FLU,I have no understanding
FLU,I have no understanding of cancer or encology. Anything I suggest would be speculation. The one thing I would have mentioned would be to consider the herbal/Macrobiotic thing coupled with exercise. But, if you say that its genetic, and wouldn’t have a shot a responding – there it is. Very best of luck and keep us posted if you want to.
August 19, 2011 @ 2:38 AM
Sucky batch of options there,
Sucky batch of options there, flu.
Have you talked to anyone about this?
Intralesional Therapy
Another new area of treatment is with intralesional therapy, where something is introduced or applied directly to the inside of the desmoid tumor. Intralesional injections of irritating solutions, such as acetic acid, has led to tumor shrinkage in some cases. Radiofrequency ablation is a technique where needles are inserted into tumors and radiofrequency waves conducted through the needles lead to intense heating of the tumor. This has also led to some desmoid tumor shrinkage, but the experience to date is limited to a few centers and the long-term results are not yet known.
http://www.dtrf.org/dtrf_aboutdesmoids.htm
———————
Like eavesdropper mentioned above, there seems to be a hormonal connection with desmoid tumors. Not sure if your doctors have tried that yet, but it might be worth a shot.
Personally, since this tumor was triggered by surgery, and the risk of recurrence after surgery in someone with FAP is relatively high, I would consider that only after trying some other options.
I still think you should try this, even if used in conjunction with other therapies:
Abstract
Inositol hexaphosphate (IP6) is a naturally occurring polyphosphorylated carbohydrate that is present in substantial amounts in almost all plant and mammalian cells. It was recently recognized to possess multiple biological functions. A striking anticancer effect of IP6 was demonstrated in different experimental models. Inositol is also a natural constituent possessing moderate anticancer activity. The most consistent and best anticancer results were obtained from the combination of IP6 plus inositol. In addition to reducing cell proliferation, IP6 increases differentiation of malignant cells, often resulting in a reversion to normal phenotype. Exogenously administered IP6 is rapidly taken into the cells and dephosphorylated to lower-phosphate inositol phosphates, which further interfere with signal transduction pathways and cell cycle arrest. Enhanced immunity and antioxidant properties can also contribute to tumor cell destruction. However, the molecular mechanisms underlying this anticancer action are not fully understood. Because it is abundantly present in regular diet, efficiently absorbed from the gastrointestinal tract, and safe, IP6 holds great promise in our strategies for the prevention and treatment of cancer. IP6 plus inositol enhances the anticancer effect of conventional chemotherapy, controls cancer metastases, and improves the quality of life, as shown in a pilot clinical trial. The data strongly argue for the use of IP6 plus inositol in our strategies for cancer prevention and treatment. However, the effectiveness and safety of IP6 plus inositol at therapeutic doses needs to be determined in phase I and phase II clinical trials in humans.
http://www.ncbi.nlm.nih.gov/pubmed/14608114
————
Whatever you choose to do, I wish you the very best. Take good care of yourself, flu.
August 19, 2011 @ 10:00 AM
CA Renter
[quote=CA Renter]…Personally, since this tumor was triggered by surgery, and the risk of recurrence after surgery in someone with FAP is relatively high, I would consider that only after trying some other options.[/quote]
Agree that the risk of recurrence is high but the large tumors already present pose a threat to vital organs, CAR.
With the Gleevec regimen, he could presumably begin in a study group as soon as 4 weeks after surgery (1-2 years req for the study) and just remain on a (poss reduced) dose indefinitely (to prevent tumors from regrowing or growing to a threatening size). A lot of people have been on this (oral) drug for several years.
I agree with sjglaze that radiation injections (or liquid radiation) may shrink margin tumor tissue left behind after resection (to give flu a good start for a chemo regimen). Flu’s drs can advise him whether he is a candidate for this procedure.
August 19, 2011 @ 12:39 PM
Wow, all I can say is I’m
Wow, all I can say is I’m really sorry to hear about your situation, flu. It sounds like you’re aggressively investigating your options with some of the best people in the country and that you’ve got a strong will heading into it, which is really good. I hope everything takes a decided turn for the better for you.
August 19, 2011 @ 5:17 PM
bearishgurl wrote:CA Renter
[quote=bearishgurl][quote=CA Renter]…Personally, since this tumor was triggered by surgery, and the risk of recurrence after surgery in someone with FAP is relatively high, I would consider that only after trying some other options.[/quote]
Agree that the risk of recurrence is high but the large tumors already present pose a threat to vital organs, CAR.
With the Gleevec regimen, he could presumably begin in a study group as soon as 4 weeks after surgery (1-2 years req for the study) and just remain on a (poss reduced) dose indefinitely (to prevent tumors from regrowing or growing to a threatening size). A lot of people have been on this (oral) drug for several years.
I agree with sjglaze that radiation injections (or liquid radiation) may shrink margin tumor tissue left behind after resection (to give flu a good start for a chemo regimen). Flu’s drs can advise him whether he is a candidate for this procedure.[/quote]
Yes, I understand the situation as it currently stands, I just think that additional surgery might make the situation even worse. It’s definitely a tough decision to make. Not saying that he shouldn’t try Gleevec (not that it matters what I think, as I’m not a doctor), he probably should. Just posting some other options, as surgery seems to be a bit too high-risk in this situation, IMO.
August 26, 2011 @ 12:58 AM
flu, I just sent you a PM
flu, I just sent you a PM with a list of NCI-associated clinical care providers who have desmoids experience, and other aggressive fibromatosis info. I suspect that it will be difficult reading the information in the message format. If you wish, I can email the Word file as an attachment, or I can fax it to you. Let me know.
August 26, 2011 @ 8:33 PM
Have you been endoscoped yet
Have you been endoscoped yet with endoscopic polypectomy? Sounds like it is not malignant so I would be in favor of slice-n-dice if it is cancerous. Surgery nowadays may be far advanced to what you had when you were 31. They just found a very promising treatment for melanoma recently so perhaps there will be a cure right around the corner. Are you having symtoms or was this caught during a yearly physical? The earlier the better.
August 26, 2011 @ 8:43 PM
In tangentially related news,
In tangentially related news, friends kid just diagnosed w stage 4 cancer w no warning. I’m hoping to die before hearing anything like that.
August 27, 2011 @ 1:38 AM
walterwhite wrote:In
[quote=walterwhite]In tangentially related news, friends kid just diagnosed w stage 4 cancer w no warning. I’m hoping to die before hearing anything like that.[/quote]
Unreal. I’m so sorry, scaredy. That’s every parent’s worst nightmare, IMHO.
August 26, 2011 @ 9:28 PM
eavesdropper wrote:flu, I
[quote=eavesdropper]flu, I just sent you a PM with a list of NCI-associated clinical care providers who have desmoids experience, and other aggressive fibromatosis info. I suspect that it will be difficult reading the information in the message format. If you wish, I can email the Word file as an attachment, or I can fax it to you. Let me know.[/quote]
thanks let me read
August 29, 2011 @ 4:46 PM
Hi Flu,
Sorry to hear about
Hi Flu,
Sorry to hear about your condition. I vote for surgery followed by chemo. Just curious, how old are you?
I don’t know if this was mentioned in the thread but there are techniques to reduce the risk of surgery-induced cancer metastasis. Have your doctors discussed this?
I did a quick search and found:
Preventing Surgery-Induced Cancer Metastasis
April 2, 2012 @ 10:42 AM
There is no way of looking
There is no way of looking into the future and *knowing* what is more likely to cause the outcome you want.
All you can do is make a list of the pros and cons, which it looks like you have already done, then take that step into the abyss where you don’t know, you just do what feels right for you. The consequences come and the only regrets I have are not the *wrong* choices I made, but the times when I drowned in logic when my (gut/soul/emotions…whatever) wanted something else.
I also find it helpful when faced with such decisions to spend some time thinking about how I want to live, how I want to die, to think about fear and how I want to deal with it.
All the probabilities and science and experts provide some information…but that information is limited and doesn’t sum you up.
My suggestion is that no matter what you choose with regard to medical treatment, the bigger questions are, “Who are you?”, “What do you want?”
Rilke says that all you can do is live the questions, and that maybe (a big maybe) one day live your way into the answers.
Would it make a difference if the question you are living is, “Should I accept treatment X,Y or no treatment,” or if the question you are living is, “What do I want?”
To me, the question does change things somehow…but I can see how that might not be true for another.
One more proverb aimed towards doctors, is: “Cure rarely, improve often, comfort always.” You could turn that around…it sounds like a cure is extremely unlikely for you, that you are at best looking for some improvement. No matter what, you can seek comfort from whatever sources provide it.