Original post:
Teresa, her Mom, my Mom, and I went to her appointment. (They tell you to bring a support person or team!) Dr. Abu-Rustum is great! We can really see why so many people have written so many great reviews of him.
He is kind, gentle, and knowledgeable. Before we left, he stood up, hugged Teresa, and told her to stay strong. No more abdominal/Gynecology surgery needed. He’s very impressed with her healing. (Note, he didn’t actually do ANYTHING real for her. Smoke & Mirrors.)
He did a gynecology exam to check her cervix, and the NP, Karen, did a breast exam. She didn’t find any problems! Teresa will start chemo at home, using the drugs I wrote about in my last post. He consulted with the medical oncologist at MSKCC who specializes in uterine sarcoma, and she recommended the same drugs our local oncologist did.
This alone made the trip to Memorial Sloan Kettering Cancer Center worth it. Even if it’s not all covered by insurance, knowing one of the best Gynecology Oncologists, at one of the best hospitals, would do the same treatment which our local oncologist recommended, is extremely comforting.
She will need CT scans of chest, abdominal area, and pelvis immediately when we get home to have as a baseline, and then again every three months for next two years. If everything stays quiet, she is considered in the clear.
If the scans show activity anywhere down the line, surgery to remove it, plus the cervix will be reconsidered. And he said we can come back anytime and work with their medical oncologist. If clinical trials start for her type of cancer, we can consider them.
I’m calling her doctors in Bristol tomorrow/Tuesday to setup appointments. These will be to get the mediport put in (minor surgery, likely near the collarbone from what I’ve read), and the first chemo.
As of now, our understanding is that Greene could put in the mediport.
We’re leaving NY on Saturday morning since that is when my Mom’s hotel reservation ends. We’ve made some plans for the week, but if you’re in the area and would like to get together, even briefly, please send me an email and we will see what we can work out! (We drove up so we are fairly mobile.)
In Hindsight:
We absolutely should have forced the surgery issue. We didn’t know it was the gold standard treatment for leiomyosarcoma. This would be the start of one surgeon after another turning us down. At first we thought it was because this surgeon wasn’t a sarcoma specialist, but the next 3 were, and they all pushed chemo too. Chemo never worked.
There were so many missed opportunities where we were discouraged from surgery for a million reasons, none of them good. Mostly boiled down to, “it might metastasize”. It might invade other organs. Yeah? But it might not have. She might not have a 30cm x 34cm tumor (and that’s just the biggest one) squashing the hell out of her abdominal organs right now (12/23/2018) if someone had had the guts to take it out when it was still tiny; when her health was fantastic.
And so far, unless someone is lying to us, it has never invaded anything. It grows until it runs out of room and then grows in another direction. There’s NO room left in her abdomen, her organs can barely be seen on a CT, yet THEY ALL STILL WORK.
Personally, I see the entire past year as a long list of medical malpractice by negligence. If she dies, I will hold every surgeon who turned us away as responsible. Especially the surgeon who made us drive down 1-2 days post HURRICANE to tell us NO based on what happened with other patients. She never even examined Teresa and turned a deaf ear to us when we explained how hardy Teresa was and how WELL she responds to surgery.
I am FURIOUS.
If you think surgery is best? PUSH PUSH PUSH for it. Don’t back down. If you think the surgeon truly doesn’t have the nerve, fine, find another one. You don’t want a nervous person operating on you!
Find people who can reach out to surgeons who are in it to HELP you. Too many now seem unwilling to take on cases who they deem as risky because, “Oh! My numbers!” Grrrr.