Boston MD (Dana-Farber Cancer Institute)

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.

Lyme Disease Testing

I saw Dr. Yager (GP) last Thursday, and picked up a prescription for a Lyme disease test. Here is how that brief encounter went:

Dr: what test do you need done?
Me: the cardiologist thinks I should be tested for Lyme disease.
Dr: that's a good idea, it could be Lyme disease.
(awkward pause)
Dr: did they find something on your EKG?
Me: I think some stuff with my right ventricle.
Dr: well, carcinoid can affect the heart ... but something always shows up on an EKG.
(handing me the script)
Dr: this isn't a very good test.
Me: what do you mean?
Dr: it can come back positive when you don't have Lyme disease, and come back negative when you do.
(second awkward pause)
Me: ok
Dr: it's not a very good test; we'll call you with the results.
Me: uh, ok. Thanks

15 minutes later, I was at LabCorp, getting yet another vile of blood drawn for a test that is apparently meaningless; I have absolutely no idea what to do when I get the results.

- Posted using BlogPress from my iPhone

Update 5/28: Lyme Test Came Back Negative. (Despite Dr. Yager's distrust of the results, I'm crossing Lyme off the list.)

Cardiologist

I saw a new cardiologist last week, who was less than impressive. Based on my experience, I put together a few tips for you budding heart doctors out there.

1. After a patient tells you that she had half of her colon removed because of a carcinoid tumor, your follow up question probably should not be, "so was it benign?"

2. Don't leave your patient alone for 20 min in the examining room while you google her disease.

3. Try to be specific when discussing test results, and avoid overgeneralized statements like: "I don't see anything very life threatening here."

4. Avoid starting sentences with: "well - you don't smell." (He wanted me to get fitted with a heart monitor halter before leaving the office - which would mean that I couldn't shower for 24-hrs).

5. Know how old your patient is, especially by the end of a 45-min appointment. (While flattering, the fact that he thought I was 26 years old, instead of 36, was a bit disconcerting.)

In addition to his bedside "quirks", my soon-to-be ex-cardiologist shared his initial findings based on my exam and echo test: irregularity (t-wave inversion) and insufficiency in the right ventricle with possible neurological disruption (causing heart rate to drop with exercise). He ordered a stress test, heart halter, and new echocardiogram. He also suggested that I get tested for lyme disease.

Initially, I scheduled the follow up tests for Thurs. - but decided to cancel them, since it's not a "very life threatening" condition; now I have time to find a different doctor before subjecting myself to more cardiac testing. In the meantime, I'll get the lyme disease test done - just to cross that possibility off the list.

Echocardiogram Appointment

I have an echocardiogram scheduled for tomorrow, to check my heart valves. The good news is that I have low blood pressure - the weird thing is that ever since my surgery, my heart rate actually DROPS with strenuous exercise (riddle me that one Batman).

I am sure my echo will be fine. I've had a bunch of EKGs, which have come out alright with the exception of a "flipped" heart beat, and both Dr. Nash and my general practitioner told me not to worry about the dropping heart rate. Also, I learned that the relationship between blood pressure and heart rate is a dynamic one - meaning they don't always rise and fall together.

I guess tomorrow's echo results will just add a few more pieces of information to my puzzle.

Blood Pressure History
Pre-Surgery
March: 100/60
April: 113/66
May: 116/67
Post-Surgery
July: 92/60
March 7th: 105/60

Heart Rate Averages (post-surgery)
Average Resting Heart Rate: 84-90
Resting Heart Rate on March 7th: 72
Average Heart Rate Moderate Exercise: 120-132
Average Heart Rate Strenuous Exercise: 66-72