expert gi for complicated ibd and cancer situation (not mine)

This is about a friend of a friend, not even someone I know.... but she's looking for a 2nd opinion -- has Crohn's and breast cancer -- very aggressive cancer, and after a lot of chemo and radiation is doing better w/the cancer but is in a terrible Crohn's flare. Her gi wants her to go back on humira, but she's scared that the immuno suppression would make the cancer recur.

My friend asked if I had a gi doc recommendation for a 2nd opinion, and I do, but I wanted to just put this out there for the wisdom of this wise crowd to see if anyone knows of gi's who handle really tough cases of IBD with other health issues.


I don't even know where in her system her IBD is .... presuming surgery is not the answer.....

She is somewhere in the Boston area, but not sure it's critical that a consultation happen in person....

Just feel so bad and it seems like the right doctor could make the difference between life and death here.... so figured it doesn't hurt to ask.

     I am not in the Boston area, nor would I refer my former GI doctor to ANYONE.  However, through all his faults, he was amazingly cautious with the biologics.  He would not put me on Remicade until I was off the 6MP for two weeks because he did not want his patients on two immunosuppressants at the same time.  Needless to say, I know for a fact, he would never place a cancer patient, even if in remission, on a biologic medication.

Sorry to read this :(. The top doctor, probably in the country, is doctor Daniel Present out of Mt. Sinai. Because of his research, and because a doctor out of Cleveland Clinic referred me to his research, I have three healthy kids today. Prior to that I had a horrible time carrying a pregnancy. I know this is very, very different, but he is considered one of the best, if not the best in his field. The only thing is that he doesn't take insurance. Hopefully she will only need to see him for a consult or a few visits and can follow up with someone else after she has more info under her belt.

My GI recommended Itzkowitz at the time when I was in denial about needing surgery and he was trying to get me to go home and talk to my folks (I don't really have any) and talk to Itzkowitz and maybe have it all done in NY (which may alwys be a spiritual home in some sense but I am not insured there). In any case, my GI thinks Itzkowitz is pretty much the greatest worldwide authority. He got some of my paperwork faxed in and said there was absolutely no question about having collectomy because the stenosis was either going to shut down or go malignant if it wasn't already. A stenosis in the colon with colitis is unusual and almost always points at cancer. So my case was double-unusual - a non-malignant stenosis with colitis. Wow.
Point being, Itzkowitz is the best and he will point your friend in the right direction.

Blueglass, let us know who your friend is doing once she talks to soneone?

Thanks everyone, info has been passed on. I have never met this woman, so I don't know how much follow up I will have. I know a friend of hers who also has Crohn's; we met through a CCFA program. My friend is very involved in CCFA, so knows a lot of people w/IBD.

My friend has family members who live in NY who saw Daniel Present. I guess he is a super big deal -- wrote the first paper that said 6MP worked for IBD. No idea on the insurance, though.... uc free, could it have been that your insurance wouldn't pay for an out of network consultation w/him? I.e. he couldn't take your insurance, as opposed to insurance in general?

Just got a little update -- my friend's friend has appointments this week w/two different gi's in Boston, very good people (one is one of the dr's who researches the worms, the other is my gi -- both out of the box thinkers). Her gi did respond poorly at first, but she "straightened him out."

My friend thought it was a great comfort to her knowing that all of you were trying to help her -- so thanks everyone. Let's hope something will work (and she still has those NY referrals if she needs more).

UC free, sorry I didn't respond to your post. Glad you got the help you needed, and I see now how it could be possible for a gi not to take insurance if insurance still covers the hospitalization (you really have to be a 1% type of person to be able to even think about paying for a hospitalization out of pocket..... )

Hey blueglass, sorry I haven't responded until now, I am not on much anymore.

I have gone through the exact same thing. Diagnosed with Crohn's in 2008 and cancer in 2010. Had both before diagnosis. If she ever needs any advice re: anything don't be afraid to give her my email.

I live in CT, but actually went up to Dana Farber/Brigham & Womens in Boston for radiation. The complication of cancer and Crohn's definitely calls for specialized doctors.

I ended up seeing (and still with) a good GI here in CT, even though she is not a specialist with cancer. But with my GI, she specifically concentrates on long-term aspects of things- it helps looking at everything and not just Crohn's. I also highly recommend a medical nutritionist- same as the regular nutritionist but with a specific medical background. This really helps. My MN has had cancer as well and understands not wanting to put anymore chemicals in the body. I obviously avoid as much processed food. My MN also has me on pure, normal butter- "I Can't Believe It's Not Butter" may be better for you as far as fat and calories, but it is much worse in introducing unecessary additivies into your already compromised system.

I can tell you right up front, she will not get a straight answer re: biologics. It will come down to her personal preference as well as her standard of living: which is worse, standing your non-biologic Crohn's state or possibly having cancer again? I chose biologics and would instead have cancer again over Crohn's.

I have talked to major players in medical organizations and heads of hospitals and all have said the same thing, I don't have an answer. I would say around 95% of doctors have never been approached with this specific question. Biolgics or no biologics? That is indeed the question.

I wish everyone the very best of luck. Please let me know if there is absolutely anything I can do.

Hi blueglass! Definitely let her know I am here to help. I try giving back as much as possible whenever I can, especially in complicated situations like these, where so much confusion, doubt and concern abound.

From my experience, Brigham and Dana Farber overlap immensely. I believe my endocrinologist was from Brigham, the oncologist and radiation expert were both from Dana Farber while all of my appointments were physically at Dana Farber.

I am sure her cancer was much more aggressive than mine. Thyroid cancer is much more treatable than other cancers because a specific kind of radiation targets thyroid cancer cells.

Honestly, I am at the lowest point of not just my health battle, but my life. I am rather ambitious and have bg plans for myself but am not able to mvoe forward due to my health. I am currently on disability. I am undiagnosed with something completely unknown. I have severe sweating, resting heart rate of 170, headaches, shaking, trembling, high blood pressure and other similar symptoms. I've been like this for just over a year and unfortunately, no matter how many or what kind of doctors I see, we have been unable to find answers. I need Dr. House! Thank you so much for asking! I really really appreciate it. Just can't wait to start living life again and to take back control in my life!