I was diagnosed in October with MMMT Carcinosarcoma. Stage 3. I live in a very small town in Wausau WI and am not confident that I am getting the correct treatment for this cancer. I have little faith in my cancer Dr. as he is unable to answer a lot of my questions. He is also a little arrogant and his answer to me when I asked him if he consulted with anyone else, he said 'I don't consult, Dr's consult with me". I started chemo and I am two sessions in with 6 more to go. I am looking outside of my area, for a second opinion, and or to just ask another Dr. if I am being treated properly. I am considering cancer centers of America, or Mayo, Froedert. or Madison University. Does anyone know where to go to see statistics of our type of cancer?
If I were in Wisconsin, I would head over to Mayo for a second opinion. It is so important to feel confident in your treatment, regardless of what protocol your current doctor has you on. If you can, try a doctor or a treatment center with lots of experience in GCS. Mayo would qualify--and there may be other folks on this list who know of doctors who are closer to you.
As far as statistics go--this is a "rare" cancer--and our oncologist is always saying that Karen is a statistic of one--she makes her own curve! She is Stage 4 uterine carcinosarcoma, diagnosed in 2011. So I wouldn't go searching the internet for statistics--I would spend that energy finding a second opinion! Cheers--Suzanne
I am 60 years old and I was diagnosed in May 2017 with uterine MMMT/carcinosarcoma . My gynecologist referred me to Dr. Joyce Barlin at Women's Cancer Care Center at St. Peter's Hospital in Albany, New York which is just a 40 minute drive from my home. I had a robotic hysterectomy on June 9, 2017 and was staged 3C1. Two lymph nodes were removed and the cancer was found in just one. I started carbo/taxol treatments, one very twenty-eight days for a total of six. MY CA125 before surgery was 52 and after 1st treatment it was 18.5 and after my last treatment it was 13 and my CT scan was clear. I think I did well through my treatments after hearing about the hard times that others have had. My last chemo treatment was October 19, 2017. I still have the fatigue and some neuropathy in my feet but overall feeling pretty good now. I did meet with radiation oncologist and he suggested 30 rads but I chose not to do the radiation based on possible short/long term side effects vs. the reward. My gyn/onc/surgeon didn't push for the radiation. I see my gyn/onc/surgeon on February 13th for my 3 month follow up since my last chemo.
To add to my previous post - due to the fatigue and neuropathy it is very difficult to adhere to a regular schedule. I have other health issues as well so I have decided that I can't return to work so I am retiring early. This is not exactly how I pictured retiring after a 42 year career but I am thankful for every day God gives me.
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