Are there any other MMMT survivors out there?

Charweaver47

mlshep said:

Forherself

Thanks, I will try a new post, this board is confusing to me.

COnfusing to me also.  Hard

COnfusing to me also.  Hard to find updated posts.  

 

dianeocallaghan

https://csn.cancer.org/discussion/comment/1556367#Comment_1556367

Are you still alive? Your post is dated 2016. It's 2025 now and I am thinking of foregoing the chemo, etc as well. From what I hear it's even worse than the disease

NoTimeForCancer

https://csn.cancer.org/discussion/comment/1725274#Comment_1725274

he diane (hope you don't mind me just using that name) as you see this is an old post. A few years ago CSN updated their site and it can be challenging for old and new members to find things.

I would recommend starting a new thread by going to the Uterine/Endometrial page and clicking on "New Topic". This will allow everyone to easily add/follow. I do know there are some survivors out there but I am not sure how often they visit this page.

Hugs dear.

NoTime

cmb

https://csn.cancer.org/discussion/comment/1725274#Comment_1725274

I had eight phases of chemo (4 of one pair and 4 of another). You can read about my treatment plan by clicking my profile pic. I was able to work during the first four infusions, although I was more tired than normal. The last four chemo infusions were much more difficult than the first four, but the medical oncologist did provide some additional supportive care during this period that helped me get through these last infusions.

I had no symptoms from cancer, except for vaginal bleeding that stopped after surgery. So I can't compare the disease to treatment. But I was able to work full-time within a month after chemo ended. And I elected to have 25 radiation treatments as a preventative measure a couple of months later. I worked during this period as well.

Cancer treatments are no walk in the park, but in my case, they have kept me cancer-free for nine years after diagnosis.

misom99

Hi All,

I was diagnosed with MMMT in 2023. I had surgery in the same year, then chemotherapy and radiation and brachytherapy. I also have lynch syndrome. My mother had colon cancer and has been in remission since 2014. My brother had cancer of the appendix, pseudomyoxoma peritone and passed away in 2022. We all have lynch syndrome.

I am in the surveillance stage. I would like to get advice on how frequently people should get scans and which scan is best. I recently asked my obgyn oncologist for a scan as a surveillance measure. The last one I had was about 10 months ago. He said I did not need one , it was unwarranted, but all the information I have seen recommends scans. Does anyone have any advice.

Thanks, ...Marleah

cmb

My gynecological oncologist, as well as the chemo and radiation oncologists, did not recommend routine CT-scans post treatment for my carcinosarcoma (MMMT) cancer. I had one scan after completing chemo, then another after finishing radiation.

After that I've only had them four times since 2018 when some other symptom, such as unusual abdomen pain, popped up. I do have Lynch syndrome and have colonoscopies every 2 years and annual mammograms.

I'm down to seeing the gynecological oncologist once a year. I started out seeing him every 3-4 months for post treatment checkup, then switching to every 6 months after about 2-3 years. I got to the annual checkup phase after about 5 years.