First time blogging

May 19, 2012
I figured that I would start a blog to talk about having cancer.  I am a 53 year old woman from New York City who was diagnosed with a rare form of gastrointestinal cancer called carcinoid in August 2010 when I was 51.  Carcinoids are a form of neuroendocrine cancers, the same type of cancer that Steve Jobs died from.  I was diagnosed by accident after having a sonogram because my ob-gyn thought I might have an enlarged spleen.  The sonogram found widespread tumors throughout my mid-gut area. The initial thoughts were that I had lymphoma.  My Dr sent me to an oncologist-hematologist who specialized in lymphoma; I’ll call him Dr L.  Dr L did an exam and asked about symptoms and said I did not exhibit any symptoms of lymphoma.  He said we needed to do needle biopsy to find out what was going on in my abdominal area.  I then had what is called a CT guided needle biopsy whereby they stick a long needle into the abdominal area closest to a tumor. They then take cells from the tumor to send to a lab to determine the type of cancer.

I’ve always been pretty healthy and never had a sonogram, CT scan or any sort of cancer threat.  No one in my family has cancer so I’ve never been through it with anyone else.

When the biopsy came back, Dr L said that it was carcinoid and that if I had to have cancer, this was “a good kind to have because it is slow growing”.  He asked if I had any diarrhea, flushing or wheezing.  It turns out that I did have occasional flushing (once about every 2 months or so for a few minutes, generally around mealtime); nothing that I would ever bring up with a doc, since it did not bother me.  Until he mentioned flushing, I never would have thought of it.  He said that it was important to find the primary tumor, the location where the cancer started before it metastasized.  Dr L wanted to do an endoscopy/colonoscopy to look for the primary tumor.  I protested about the colonoscopy because I had just had one about 8 months earlier after I had turned 50 to determine a baseline for diagnostic purposes.  Both my primary care doc and Dr L believed I should have the second colonoscopy.   So I had the endoscopy/colonoscopy and they did not find the primary tumor – so much for having 2 colonoscopies in one year!  I asked Dr L who he would send his wife or daughter to if they had carcinoids and he mentioned Dr. Jekyll (not his real name!) at Memorial Sloan Kettering (MSKCC) – he was the “best in the world” at treating this disease.

Meanwhile, the reason I had originally gone to my ob-gyn was because I had uterine fibroids and they were causing extreme pain and bleeding.  I needed a hysterectomy.  I had spent about 2 months getting the above tests after the sonogram and my ob-gyn was reluctant to operate until I got a definitive diagnosis and he knew it would be safe.  I had the hysterectomy in early October 2010.  That surgery was the best thing that happened to me that year.  I have not felt this good for many years!  Good riddance uterus!

After a month of recovery from the hysterectomy, I had my first appointment with Dr Jekyll at MSKCC.  My appointment was at 9:00 to get processed with insurance, etc. and my doc appointment was at 10:00.  I had some blood drawn and then was moved into an examining room.  A fellow came in about 11:15 to examine me and ask about my symptoms.  Dr. Jekyll then came in and introduced himself.  He spent about 8 minutes asking some questions and giving me some information about Sandostatin, the drug he thought I should be taking.  He answered a few of my questions but most of his answers were “I don’t know”.  He said he would be giving me a subcutaneous shot of 550 mc of sandostatin to see how I tolerate the drug.  If I tolerated it, he would start me on a once a month shot of 20 mg of Sandostatin LAR.  That was it and then the nurse came in to give me the shot.  She asked me to wait about 20 minutes because she wanted to make sure that I was not having any reaction to the medication or getting a rash.  I left MSKCC at about 1:00 having spent 4 hours there and seeing the Dr. for less than 10 minutes.  I started walking toward my office which was about 10 blocks away and within a block of MSKCC felt urine running down my legs.  I ran into a nearby hotel to go to the ladies room to clean up and then went on to work. For the rest of the day I was having the feeling of a urinary tract infection with feelings that I had to urinate - and then not being able to!  This was quite uncomfortable. 

I emailed Dr Jekyll about this problem the next day (the problem had gotten better within 12 hours). His nurse called me back and said she had never seen this reaction and that I could discuss it with the doc when I came in the next week.  At the following appointment, Dr Jekyll said he had never seen anyone with urinary incontinence from taking Sandostatin He thought that “maybe I was nervous about coming to MSKCC and that is why I had the problem”.  He then gave a much lower dose of 100 mc and told me to come back the following week.  The schedule was to go weekly and give me a higher dose until he determined my tolerance.  I had the urinary problem again when my dose got higher.  I started on Sandostatin LAR 10 mg in January 2011.  I moved from weekly to monthly appointments but I was quite uncomfortable with Dr Jekyll.  The reason I call him Dr Jekyll is because he would be arrogant and very obnoxious for some appointments with a zero tolerance policy for questions and then once in a blue moon, he would be quite professional and courteous.  Just when I felt I needed to fire Dr Jekyll, I would have a good appointment and then feel ok with him. 

Because of my discomfort with Dr Jekyll, I made an appointment with another carcinoid expert, Dr Warner at Mount Sinai Hospital.  Dr Warner does not take new patients but sees them on a consulting basis and will recommend docs who work with him.  Mount Sinai takes a much more aggressive approach to this disease than MSKCC. I saw Dr Warner in June 2011 and he was very informative and spent about 3 hours with me.  I was still trying to get basic knowledge about this disease.  He suggested we try to find the primary tumor by doing an octreoscan and a small bowel x-ray series.  He suggested that a debulking surgery may be warranted and that my gallbladder should be removed and perhaps some sort of chemotherapy might help.  He also suggested an echocardiogram and that I increase my dosage of Sandostatin LAR to 20 mg. per month.   Given my lack of symptoms, I was scared by the invasiveness of all that he was recommending.  I went back to Dr Jekyll who agreed to increase my Sandostatin dose to 20 mg. and to give me an echocardiogram.  I continued to see Dr Jekyll even though I thought he was terrible.  I took down all the doc names Dr Warner gave me and started checking them out.  Most did not take my insurance and/or they seemed older than I was comfortable with. I work in corporate America where the normal retirement age is 65 so I am a bit nervous about seeing docs who are more than 5-10 years older than that.  Finally, after 15 months and a very contentious appointment where I waited 3 hours to see Dr Jekyll and he would not give me my 5-HIAA results because it “didn’t mean anything”. I finally fired him in February 2012. 

MSKCC takes a “watch and wait” approach to carcinoid cancer as opposed to a more aggressive treatment plan.  Their view is that the primary tumor is not important, and the only thing that matters is whether the tumors are secreting hormones and that is what they need to treat.  I was happy with the “watch and wait” approach since I was asymptomatic.

I started in March 2012 with Dr Ratner who works at Mount Sinai and is on Dr. Warner's list of appropriate referrals.   This is still a new experience and so far I like the doc. His nurses seem competent with giving Sandostatin shots. My major problem is with his front desk, which has twice scheduled me for appointments on days he is not going to be in the office!  I found out that he would not be in the office when I call to confirm the day before the appointment (twice).  I’m not sure whether the Dr is not telling the front desk when he is coming in or whether they don’t keep track well.

In summary, I have not had any progression of tumors and no symptoms since being diagnosed in 2010.  The flushing has receded since starting Sandostatin LAR.   At this point, I am quite healthy and am waiting to see if Dr. Ratner has a new or different treatment plan for me-or if he will honor his appointments.

I’d like to use this blog as a way to talk about my issues and treatments, to inform others, to solicit opinions on good docs, helpful treatments and any other thoughts as I go through my carcinoid journey.