The trip to Dana-Farber Cancer Institute to see a carcinoid expert ended up being extraordinarily anti-climatic.
Dr. Kulke was nice enough, and smiled a lot. He had all my records and pathology slides. The appointment started with me patiently explaining my myriad of symptoms: heart problems, joint pain, exhaustion, flushing, rashes, fevers, night sweats, nausea, abdomen distention and pressure, leg swelling, and muscle weakness.
After I was done, Gary asked him: "Does any of that sound familiar?"
He just smiled and said, "Not really."
Followed by awkward silence.
Dr. Kulke then summarized his opinion: there is a very low probability the cancer has developed into the syndrome (good news), but he couldn't rule it out since some of my symptoms are consistent with the syndrome (ambivalent news). He advised an octreotide scan (two-day nuclear medicine test) along with a blood test for a NET tumor marker to investigate further. His only other suggestion was to get a good general practitioner. We scheduled the octreotide scan for next week, and a follow up appointment with him in September.
(I also asked him whether he knew anything about the black raspberry powder - he said he had heard some of his patients talk about it but wouldn't put much stock in it.)
Bottom line is: we didn't learn anything new. Everyone agrees that something is making me really sick, but both Dr. Nash and Dr. Kulke concur that there is only a slim probability that carcinoid syndrome is the cause. If the next tests come back negative for additional NET tumors, I'll have to see a slew of new specialists. It feels like deja vu all over again (6 years of misdiagnosis before carcinoid was found).
Don't get me wrong; I am very grateful that my cancer is most likely gone (or at least under control), but I am disheartened that there is no real plan of action to get me better. All I know is that I'm 37 - I am not diabetic nor overweight, I don't drink, smoke or do drugs, I exercise and eat organically - I should not feel like I'm stuck in the body of a 70 year old woman.
Gary and I decided that since the only thing Dr. Kulke offered was a test Dr. Nash didn't want to do - we would call Dr. Nash's office to see if he would change his mind and order the test to save us a trip back to Boston. Rachel (best nurse in the entire world) called today from Dr. Nash's office, and said he wanted me to meet with a different doctor at Sloan Kettering, Diane Reidy, who was well versed in carcinoid to discuss the merits of the new tests and my current condition. I have an appointment with her on September 9th.
Big question: do I cancel the octreotide scan in Boston? Since Dr. Nash doesn't believe in octreotide scans, I assume the new Sloan doctor doesn't either. I'm not exactly thrilled about being injected with radioactive material - but what if it lights up something that explains what's wrong with me? I guess it comes down to trust - and I trust Dr. Nash and Sloan Kettering; and I was really impressed with Dr. Reidy's CV - so most likely I'll say "thanks, but no thanks" to the pleasant Dr. Kulke and "let's get down to business" to Dr. Reidy.
One thing that Dr. Nash's nurse Rachel did say, however, is that I can't put off my cardiology appointment any longer - she's right. It's pretty scary when your heart stops and is so violent in restarting that you cough and shake like a madman; finding a good cardiologist just got top billing on my summer to-do list.
Update August 12th: After talking it over with Gary and my family, as well as other Carcinoid survivors, I decided to keep both appointments: the one in Boston for the octreotide scan and the one at Sloan-Kettering with Dr. Reidy. Until we find answers, we decided that we should see all the "experts" possible and do any non-invasive testing that might help shed some light on this thing.
My surgery to remove a large NET from my pancreas was a year ago. Many of my symptoms have continues. I had the octreoscan two months ago. Negative. Also a zillion blood tests and several cat scans. Negative. My Endocrinologist Dr Odorisio at the university of Iowa's suggested starting octreotide daily. What a God send! It has helped so much. Dr Odo rocks! Still don't know why I flush and have other symptoms. Nothing to fear from the octreoscan. I recommend it even though its not a definitive test. CT is the gold standard. Good luck.
ReplyDeleteThanks Cleve - did they think it was carcinoid syndrome despite the negative test results?
ReplyDeleteBummer to hear that Kulke wasn't able to shed any light. I think we sometimes build up these super specialists to be super heroes and they don't always live up to our super expectations.
ReplyDeleteCleve is right, the Oscan is no big deal, pretty much the easiest of all our tests. Cleve is also right on the octreotide, might be worth looking into.
If you can't get anywhere with SK on the Oscan, I suggest Ursina Teitelbaum at Penn. She is really fantastic. Also, Dr. Metz, the NET program coordinator is great too. They will work with you to figure things out. I know Philly isn't quite as close for you as NYC, but it's a quick trip down the turnpike.
Best of luck finding a cardiologist!
Thanks Kristin - I sincerely appreciate the insight and the recommendation. Philly is actually really close - so she might be worth looking into if Dr. Reidy doesn't pan out. You are so right about looking for a super-hero to fix everything in a single bound -- we sure were hopeful about Kulke, but unrealistically so.
ReplyDeleteMarlena, I may have missed this, but have you done the 24hr urine lately and/or chromagranin blood test? The octreotide scan isn't horrible, but it isn't simple. I would do those two things and the ct first if you haven't already. Then, do the other if needed. Keep pushing for answers! If there is one thing I've learned, it is how to get my needs met as a patient :) Good luck!
ReplyDeleteThanks Reggana! Fact is I've only had CT and follow up MRI on liver cysts. Nobody has suggested any other tests except tumor marker and Oscan. I feel like they are all saying, "nah... probably not syndrome -- go fish." Thing is so many of my symptoms are objectively observable (fevers, flushing, distention, swelling) so they cant just dismiss me as a hypocondriac but I'm the kind of person who will never complain or go to to MD unless it's really bad... I'm getting worse and have no idea why but it's not in my nature to push for answers. I feel like I just need to try harder to feel better and forget looking for root cause
ReplyDeleteHi Marlena,
ReplyDeleteSorry to hear about the anticlimatic visit to Boston. I truly feel for your situation, which is quite smilar to mine. I would suggest keeping the appointment in Boston. If only to give you some kind of answer.
I'm feeling as bad as I felt before the surgery (carcinoid tumor appendix). I can't eat, I have lost 50 pounds since last year and I have flare ups of pain in my midsection. And yes I have the flushing in the face. I am being sent from specialist to specialist, from theory to possible diagnosis, the current one is lupus! My personal favorite from doctors is "oh, you're a rather fascinating case." or my favorite "I'm baffled!" Nothing puts me in a better mood :) Hang inthere Marlena, and yes have the octreo scan done, it's important. Thinking of you.
Carcinoid syndrome........well yes. Yes in that I have most of them....flushing, GI tract issues, fatique, nausia. But no pain. The thing with neuroendrocrine cancer is the wide variations between patients. However, odds are that if you had a NET and have the "classic" symptoms like flushing then its carcinoid syndrome. The octreotide suppresses the majority of the symptoms plus studies show that it can slow tumor growth if there is one somewhere infected.
ReplyDeleteOops. I meant undetected not infected. So much for the "smart" keypad app on my phone. Haha.
ReplyDeleteMaybe because my tumor was only stage 3 (with minimal invasion into surrounding immediate tissue) instead of stage 4 doctors don't think the syndrome is likely... guess that's a question I need to ask.
ReplyDeleteAnnie - I agree! There is no comfort in "well that's unusual" since every other sentence describing my condition carries that tag line!! So annoying.
ReplyDelete