When you get a call from your oncologist that you miss and then he leaves you his personal cell phone number and says "call anytime", panic can set in. We texted back and forth late last night before finally having the time (uninterrupted by children in my case) early this morning to talk in depth. Here we go:
My case got into the oncology discussion yesterday and he said they had a "very long panel discussion" about my tumor. He lead by asking if Kate was a vaginal birth with no tearing or episiotomy. I discussed her birth in much less depth than I did here and here, just hitting the parts he was concerned about as well as a brief history on my infertility treatments. He was surprised that no one had noticed the tumor in all of my previous infertility treatments or subsequent ultrasounds for Kate.
The consensus among all the panel members (oncologists, radiologists, pathologists, etc) was that this was a slow growing tumor that had been around for a long time. It does not spread to other areas in a traditional cancer way but it will continue to grow as a mass which can cause quite a few problems of its own. In a very few percentage of the population, these tumors start in childhood but there is no way to know if mine falls in that category.
Here's what they know for sure. It's in a ridiculously difficult spot to remove. There are two different surgery options.
1. Take out only the tumor which would include a total hysterectomy because part of it is fixed to my uterus. This option leaves a high chance that microscopic cells would be left behind so radiation treatment would also be needed. Even with that, the probability of it returning is high.
2. Take out tumor and all surrounding organs to include part of colon, rectum, uterus, resulting in a permanent colostomy. This option is the best to *almost* guarantee that it will not return.
Obviously their first choice would be to not do option 2 but here's the catch: once surgery is started, if they see microscopic cells left behind I can do radiation but leave my organs (minus the hysterectomy) intact. But if a big lump of cells or even a piece of it is left they would make the decision during surgery and I could wake up to a colostomy bag.
This surgery would involve a team of surgeons to include Dr. Bilimoria, the surgical oncologist who would act as coordinator, a colon/rectal oncologist, a gynecological oncologist and a urologist for the bladder and kidneys. I would be in hospital for 7-10 days with recovery adding an additional few weeks.
No one was in favor of starting medical treatment (i.e. surgery, radiation or chemo) until they can ascertain how fast it is growing. I will go back the end of May/beginning of June for another MRI. He was quick to say that even if the tumor grows another 2cm by then, it would not change the type of surgery they would recommend. If the MRI shows little or no growth they recommended leaving it alone and watching it through recurring MRIs to see what it's doing.
This tumor will not respond to traditional chemotherapy as that only works with fast growing tumors. My kind of tumor can respond (i.e. shrink) to tamoxifin (estrogen blocker) or a "super form of aspirin" but it's not 100%.
So I go back for the MRI in a few weeks. Once those results are in I will meet again with Dr. Bilimoria, the surgical oncologist, as well as Dr. Agulnik, the medical oncologist, to discuss the results and their recommendations.
So I got off the infertility rollercoaster, then managed to finally get off the adoption rollercoaster and now I get to take a ride on the cancer rollercoaster. I may not die from this but it's not going to be a pleasant ride.