I figured that I would start a blog to talk about having cancer. I am a 53 year old woman from
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 to get processed with insurance, etc. and my doc appointment was at . I had some blood drawn and then was moved into an examining room. A fellow came in about 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 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.
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
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
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.