He was quite concerned that the oncologist in Boston at the Dana Farber Cancer Clinic told me it was aggressive. He immediately left the room to get my report, muttering, brought the report back underlining the things that he said proved it was slow growing, and certainly NOT aggressive.
All of my records were in the hands of the oncologist (I'll just call him Dr M) in Boston when I went there a few weeks ago for a second opinion. I called ahead to make sure he had them. I had never read the report, only got a two-minute phone call from the doctor here in town who did the biopsies. Following is what the written report said. See that word "benign"? The reason that they are treating it like a malignancy is that they always are or will be given enough time. So they are treated as if they already are. Far too many people on the board I participate in got a "no malignancy" initial diagnosis and did nothing, then a year later it was in their liver! So I fully agree with the course of treatment at IU Health. Here is the pathology report, verbatim. Oh, and by the way, that phrase (2 per 50 high-power fields) means it is very, VERY slow growing!! Nothing aggressive about that.
"A bland spindled cell neoplasm is identified with rare mitotic figures (2 per 50 high-power fields). High grade features are not present. Immunohistochemical stains are performed and are positive for CD117 and vimentin. They are negative for S100, S0X10 and CKAE1/3. Controls are adequate. While a benign GIST is favored, this is based on a limited sampling of the lesion. Clinical correlation is recommended." In other words, it needs to be sliced and diced to see where the little suckers might be hiding.
So what in this report would have prompted Dr. M to say it was aggressive? The only thing that Dr. Rushing attributes it to was that he just looked at three pictures, all taken from different types of tests, and one of them not even at the same lab, and took the largest measurement of each. Based on dates of tests, each one happened to be bigger than the previous one. According to Dr. Rushing, it did not indicate a rapidly growing tumor. Dr. Rushing used a tissue box that he moved around on the table to show how looking at it straight on towards an end will give a very different measurement than looking at it from the side. He said depending on the direction from which the camera took its shot, these things can vary 2 or more centimeters. Mine went from 3 cm to 6 cm. In fact, the 6 cm was rounded up - it was actually only 5.7 cm, and he believes it was probably a side shot being compared to a head-on shot earlier that might have led Dr. M to use the term "aggressive.".
Dr. M said it was a mistake that I didn't get on Gleevec just as soon as I knew it was a GIST. I didn't want to spend the $3,500 co-pay if I was going to get into the Novartis program (which I did), even if I had to wait three weeks. After all, the pathologist I spoke with here said it was slow growing. What's another three weeks?
I have been sick with worry since my visit to Dr. M. But one bit of comfort was that he said that Gleevec worked the best on aggressive tumors, so it should be shrinking pretty fast.
Well, I had another CT scan from SEVERAL directions yesterday, and every picture showed it had shrunk. Not by much, but it had shrunk and Dr. Rushing said that he could say with 100% certainty that it had not grown. So the three weeks without Gleevec, if it had grown, was already offset by the Gleevec - and then some. Very good news indeed.
Some liver numbers are off. Tests for Hep B and Hep C were negative (phew!), so I am taking three weeks off from Gleevic on the assumption that it is the problem. I'll be getting blood tests weekly, then back on Gleevec at a lower dose on weeks four, five and six, then another round of CT scans and a visit with Dr. Rushing. We'll be discussing dates for surgery. This is all very exhausting!
One thing that is running through my mind is that if Gleevec loves to go to work on aggressive tumors and will shrink them faster (I see notes from people on my GIST support board who say their tumors are half the size in just a few weeks), then the fact that mine barely shrunk at all means it is NOT an aggressive tumor, but in fact a pretty timid one.
Yay for timid tumors!!! I'm going to be fine.