10 year anniversary

Well, September 11th is coming up and it marks the 10 year anniversary of the first serious symptoms that lead to my cancer diagnosis.  10 years ago, I started having extreme abdominal cramps, lack of appetite and, although I did not really notice it at the time, fewer and fewer bowel movements.  I privately suspected that some of these symptoms might be psychosomatic symptoms due to stress over the 9/11 activities but I did not feel stressed in any other way.

Finally, after 2 months of progressively worse cramps and doctors continually claiming I had IBS, I went to the emergency room on 10/24 where they gave me 2 liters of saline through an IV which made me feel many times better.  I was then admitted to the hospital and the GI doc suspected Crohn's disease which was probably his favorite diagnosis.  They scoped me and then, finally, on Friday, gave me some Barium and performed some X-rays of my bowel.

They noticed some considerable swelling in the small bowel and what looked like an obvious blockage and they elected to operate, uncertain of what they would find.  Unaware that my wife had already been told, I was then informed on Saturday morning that I had was was almost certainly cancer.  The surgeon was unsure but suspected a carcinoid tumor and provided a tiny bit of literature on these rare tumors.

Typical carcinoid tumors strike adults in their 60's and, as a 34 year old, I was somewhat outside of the 'normal' patient.  These tumors typically grow fairly slowly but the surgeon had removed a small lesion from my liver (cancerous) and identified more cancer in my mescenteric lymph nodes.  While carcinoid is slow growing, it is also incurable if the tumors have metastasized as mine had.

I hooked up with an oncologist while in the hospital and began an initial treatment of Sandostatin-LAR once every 4 weeks and Pegylated Interferon once a week to attempt to arrest the growth of the already slow growing tumors.  This continued for 18 months and my oncologist at that time incorrectly announced me cured.

That did not turn out to be the case as the mescenteric lymph nodes began growing and, in 2003, I had my second laparotomy to remove the tumors that had encased the artery leading to the mescentary.  I then restarted on the Sandostain-LAR and PegIntron for another 2 years.  After two years, we stopped the PegIntron but continued the Sandostatin.

In 2006, my tumor markers started rising again and we restarted the PegIntron to attempt to slow the growth of the tumors.  This did not prove to be successful as I had surgery again in January of 2008 to remove further tumors that were encroaching on my bladder and rectum as well as throughout my abdomen.

That brings us up to today.  We are continuing to follow certain blood markers to track the progress of my disease.  The first is Chromogranin-A.  It has traditionally hovered around 40 (just at the high level of normal) and, prior to each of my surgeries, it has risen dramatically along side of general tumor growth.  I have not been able to get a reliable measure of this marker this year as the measures vary considerably from lab to lab and I am having trouble getting my new insurance to use the old lab.

The second marker I follow is Pancreostatin.  This marker shows the progression of the tumor in the liver.  Mine has usually hovered between 150 and 200 (again, high side of normal) but the last two blood draws (April and August) have had values of 260 and 630.  This trend indicates that the tumors in the liver are almost certainly growing.

I have a CT scan tomorrow and am hoping to get a more solid picture of how the cancer has progressed.