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Uterine Carcinsosarcoma Stage 1A

saraboss
Posts: 1
Joined: Aug 2021

I am new to the board. This is my second cancer. I had anal cancer 9 years ago and I am pretty sure this cancer is secondary to the radiation I had for that as pelvic radiation is a risk factor for this cancer. I have had 5 rounds of chemo and 3 of brachytherapy. I am thinking of skipping the final infusion because there was no evidence of cancer after my surgery and I am exhausted and depleted. I also cut the radiation short because it was really hard to wrap my head around having more radiation when I think it was radiation that caused this. I recovered really well from the first cancer and really left it behind but this one I fear will be threatening me with recurrence for some time to come. My overall health is good and I am eager to commit to an anticancer lifestyle and diet -- exercise, largely plant-based diet, maybe some fasting. Plan to work with an integrative clinic. I didn't lose my hair the first time but it's all gone now. It's been hard to go through this after a year of near isolation from Covid. Anyone understand the significance of cancer stem cells with respect to this cancer? My heart goes out to others who have this aggressive, rare cancer. It's scary, but so wonderful to hear those who have survived several years without recurrence. 

Spydergal's picture
Spydergal
Posts: 47
Joined: Jul 2021

Sounds like you've been through a lot. I am new to all this so I don't understand very much about this cancer. All I can say is that you were brave to survive the anal cancer. You beat that other cancer so your strong enough to beat this one to.  

cmb's picture
cmb
Posts: 730
Joined: Jan 2018

I'm very sorry to hear that you've developed another cancer so many years after your first cancer experience. I can understand your wanting to skip some of the scheduled treatments, but unless you're experiencing a significant side effect, I'd encourage you to get at least the final infusion. As you've learned, carcinosarcoma is an aggressive form of uterine cancer and treating it aggressively right from the start is the best chance to put this cancer in remission long-term.

It's possible that your first radiation influenced the development of this new cancer, but there's no way to be sure and no reason to second guess yourself now. Radiation worked to keep your anal cancer from recurring, so that was a good decision at the time.

Did you have any genetic testing when this cancer occurred? While most of us can benefit from improvements in diet and exercise, it's also important to know if we've inherited any mutations that may predispose us to cancer. I learned that I have Lynch Syndrome after my surgery, which keeps me vigilant about routine tests and procedures like colonoscopies/endoscopies. Oddly, while Lynch Syndrome can influence the development of more common endometrial uterine cancer, it's not usually considered to be a factor for carcinosarcoma.

I was diagnosed with Stage IIIB carcinosarcoma in 2016. You can read about my treatments, etc. by clicking on my user name under my profile picture. Still NED at the moment.

I'm not on Facebook, but there is a group for this cancer at: https://www.facebook.com/groups/carcinosarcoma that you might find helpful too.

Let us know if you have other questions or comments. 

MAbound
Posts: 1153
Joined: Jun 2016

I'm sorry that lightening struck twice for you. You'd think cancer treatment for one cancer would grant some kind of immunity from other cancers, but unfortunately that is not the case and you could be right that earlier treatment could have led to this cancer, but there is no way to be certain. In any case, what choice do any of us have? Cancer won't go away on it's own and your earlier treatment at least bought you nine years before this catastrophe.

While this cancer was caught early, it is a highly aggressive type of uterine cancer and hopefully you'll have no regrets about going after it equally aggressively. Frontline treatment is your best chance for another cure. This cancer is a totally different animal from the hormone driven form which is called endometrial adenocarcinoma, so it is unlikely that diet, supplements, or exercise would have any impact on it. This version of uterine cancer hits even young, slim, and fit women.

You are almost to the finish line, so I'd encourage you to persevere. It's always hardest at the end because the effects of treatment are cumulative. Perhaps if you talked to your oncologist about how you are feeling and what you are thinking, he might have an idea of what he can do to help get you to the finish line. Others here have needed blood transfusions or even just an IV bag of fluids after infusions to help them feel better. You never know what tricks oncologists or chemo nurses have in there bag unless you let them know how you are feeling.

Good luck!

 

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