November 2, 2019 at 6:18 PM #9986MargaretParticipant
Hi, my name is Margaret, I just had a biopsy that resulted in a carcinosarcoma diagnosis, I am having a complete hysterectomy on Friday, tomorrow. The CT scan did not reveal any spreading of the cancer. The mass measured about the size of a grape 2 weeks ago. I have been given no information on this, other than it is a high grade cancer, so of course I am searching the internet like crazy and it appears there is no good news. What I am seeing is that I have maybe 3 years left, 5 would be a miracle. Any real experience of how this goes would be greatly appreciated. My focus is now how to make the best of my time. I am healthy right now, I feel good so this is really hard to comprehend.
Any information would be greatly appreciated.
November 2, 2019 at 6:32 PM #9989KathyKeymaster
It’s very good that your cancer has been caught early. I hope surgery goes well – all the cancer is removed, and your recovery is smooth. One thing we stress is that it is vital to be treated by a gynecological oncologist (medical and/or surgical) who has significant experience treating women with carcinosarcoma – someone who sees more than just a few cases a year. There are general recommendations for treating carcinosarcoma and it is important to be carefully monitored (especially since the cancer may be resistant to first line therapy).
It’s good that you are going into surgery feeling well. As you move ahead to chemotherapy, please keep in touch on the forum. Our community can help you as you move through chemo. It’s so important to advocate for yourself and bring along your family or a friend to help you.
Keep in touch.
All the best,
December 2, 2019 at 12:26 PM #10015MarianneParticipant
My name is Marianne. I was diagnosed in September 2019, had total hysterectomy in Oct., then started my first round of chemo on Nov. 15. Total of 6 rounds, every 3 weeks apart. Learned recently about radiation treatment will be 5X week for 5 weeks for external pelvic, with additional internal (vaginal) radiation – about 2 visits for that. I live in Boston and am being treated at Dana Farber and Brigham and Women’s hospital. Lucky to have great resources like that, but still feel in the dark about this whole prognosis and journey ahead. Right now the doctors are trying to determine best time to schedule radiation treatments, either midway of the 6 chemo infusions, or after they are completed. I am waiting to hear their recommendation. In the meantime,feeling quite good and back to my 4 day work week.
Hope to continue comparing notes! Glad I found this resource.:)
December 4, 2019 at 9:20 AM #10037MarianneParticipant
I am wondering how your surgery went and what stage diagnosis you received? Please let us know the outcome of your surgery and what follow up treatment has been recommended.
January 12, 2020 at 1:23 PM #10081NancyParticipant
I was diagnosed with MMMT Stage 3A in July 2015. I had a TAH Total Abdomiinal Hysterectomy around August of 2015 then 6 weeks of external radiation starting in October of 2015.
In January 2016, I had my port put in and started chemo. I finished in August of 2016.
As of 2019, my PET scans – done every 6 months – have been fine.
The only thing I wished I had NOT done was radiation. It has caused chronic diarrhea that has made life very difficult. I have to wear Depends and always have them with me along with a pack of Cottenelles and a pair of jeans. Too many accidents where I have had to miss appointments either because I can’t get out of the car once I’ve arrived, or I can’t leave the house because I’m glued to the bathroom.
Yes, I’m, alive but I also lost my Mom in 2017 , then my Dad in July of 2018 the my dear husband of 31 years the month after Dad. I am not enjoying life much so, for me, I’m ok if it comes back as I won’t do any treatment.
For those of you that are going through MMMT, please remember everyone and every body is different. I wouldn’t pay much attention to statistics that any of the websites provide.
Enjoy your life, family and the gifts God has given you. You are precious and those that love you will lift you up.
August 28, 2020 at 9:17 PM #10191MargaretParticipant
Hi everyone, sorry I lost touch with this site. I ended up staged at 3c1. Completed 6 rounds of carbo/taxel with 28 rounds of external radiation sandwiched in between, that was finished in April 2020. In May 2020, CT scan showed NED – so now I am just trying to get on with the business of living during the pandemic. I have neuropathy in my feet which I hope is getting better but really cannot tell right now. I currently have, since starting chemo, random pains throughout my body, which of course always make me think “cancer” but I am learning to dismiss that thinking but also trying to remain aware, its hard to know which mindset will serve me best. I also have stomach discomfort from the radiation but not severe. It is really wonderful to connect with others who are sharing the same experience. Nancy you are my hero! Life is hard. Love to you all! Margaret
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