Lou and I went to the Duke sarcoma specialty clinic for a second opinion about the proposed chemotherapy. We were both hoping to hear that chemo would not be necessary. Dr. Reidel at Duke was excellent. In fact, the whole experience of being there in Clinic 1B/1C was excellent.
Here are some of the things we learned:
Is chemo necessary for me right now? Yes, because the cancer has come back in multiple places. Chemo is the system-wide method of attacking the cancer. That is, you take the chemo, and it can attack any cancer anywhere. (In contrast, radiation and surgeon only attack the specific cancer you focus on.)
Is chemo effective on leiomyosarcoma? Yes. For leiomyosarcoma, 40% of patients receiving the Gem/Tax combo have a reduction in the size of their tumor. Now, reduction is a fabulous result; you're supposed to be happy if the tumor just stops growing. (Dr. Reidel confirmed what I saw on the web, that if there were no sign of cancer, then it is controversial whether chemo is effective as a preventative for future leiomyosarcoma. But alas that is not my situation.)
How rare is leiomyosarcoma? About 12,000 people every year are diagnosed with some kind of sarcoma, and about 2000 to 3000 of them are leiomyosarcoma. So, it is rare but not the most rare.
Why isn't surgery a good idea when the cancer has come back in multiple places? This is still hard for me to grasp intellectually, but the explanation we got today was that the surgery and recovery afterward wastes time before the chemo can start, and the chemo is more effective when the cancer is in multiple places because it is effective system-wide.
Oh! In case you haven't noticed, the visit was very pro chemo, which makes sense because Dr. Reidel is a chemo doctor! (A medical oncologist.)
Anyway, since chemo is defintely going to occur, I am planning on getting a cute short haircut at my earliest convenience. I can almost make a pony tail! I am so close!
I have saved the not-so-good news for last. Maybe some of you have already quit reading.
One of the things that Dr. Reidel did before he saw us was review all the scans that have been done recently. He told us that the MRI from May 27 mentions a 3 cm mass in my pancreas. Lou and I were floored. No one mentioned my pancreas to us!
So I had some homework today, to call my oncologist and my thorasic surgeon and find out what they know. I was hoping that they had already looked at it closely, determined that it is nothing to worry about, and just forgot to mention it to me...
I was scheduled for the lung surgery next Wednesday, but now that I have brought my pancreas to everyone's attention, that surgery is on hold. Turns out, there was no mention of the mass in the preliminary MRI report, only in the final report. Plus, this mass does NOT glow on the PET scan. Not all sarcomas glow, but my other spots glow "bright as light bulbs" (except for the two tiny ones, which do not glow). So it kind of got missed. Everyone is looking at it now however. No one knows what it is.
The thorasic surgeon will not perform the lung surgery unless I have a biopsy that shows this new mass is definitely not cancer. Someone is determining now if the mass CAN be biopsied. But we will have to decide if it SHOULD be biopsied.
Lou and I are leaning toward just going ahead with the chemo, forgetting about the lung surgery at least for now.