Endometrial cancer at a late age

Good Morning ladies....just an update on my current treatment for serous uterine cancer stahe 1A....I have been on infusions ( 30 min) of a drug called enhertu, which is a targeted chemo combined with traztuzamab, (herceptin) which identifies the protein in HER 2 + cancer. My first infusion was in May 2025 and continued every 3 weeks. As my CA 125 went from 77 to 15 I've been able to have the treatment every 4 weeks instead of every 3 weeks. Enhertu was approved by the FDA for uterine cancer in August 2024, has been used for breast cancer treatment for many years. It has fewer side effects than carboplatin ans taxol. I have lost hair but not all, just getting thinner, the 2 or 3 days after the steroids wear off there is some afternoon fatigue and appetite a little off. I have been able to continue with my pilates class 4 times a week and my weekly pickleball game as well as 4 mile walks withe my dog. Not much Chemo fog ..all in all an easier drug to tolerate. I did very well with the harsher chemo, but is was long ( 4 hours) and losing all my hair was a drag...The best news is that my most recent scan ( yesterday November 8th ) was NED !! the enhertu is working with at 4 week intervals instead of 3 !! I remain hopeful and very grateful for the wonderful quality of life that I have been able to maintain during this journey that I never expected to be on !! Good luck to everyone and don't be afraid of treatments that can fight this demon, I'm grateful that they exist !

@alohman08 I was diagnosed with the same cancer at same stage. I then learned that Stage 1a is broad. Do you mind sharing how much spread they found beyond the uterine lining? Was it in the muscular layer of your uteris? I ask because I was going to start chemo but 2 doctors said "wait and see" was best for me. Scary, cause all it takes is one rogue cell.

@inquirer hi my cancer was caught very early on a routine Pap smear I was told that it was a tiny spec that had not penetrated the uterine wall .. there was no cancer found anywhere else .. no lymph nodes .. chemotherapy was not recommended which I was happy to hear ... 18 months later it recurred in my abdomen on my omentum.. I was told that chemo was necessary and I had 6 treatments and by end of the treatments my scan was clean NED.. I continued with 30 min infusions of Herceptin for 18 months and when my CA125 started to trend up a PET scan showed very early node activity.. I began treatment with Enhertu and I am once again cancer free ... I hope that this new treatment which is a targeted rather than systematic chemo with fewer side effects keeps the cancer at bay forever !

I have uterine carcinosarcoma (stage 3B) and wondering if anyone has used Enhertu for this specific cancer? Thank you.

@alohman08 Thank you. Your story is mine; a tiny spot that hadn't penetrated the uterine wall. Later, a second opinion at MSK said a few cells did penetrate the wall. That was disappointing but still my surgeon and MSK recommended "wait and see" over chemo. I was relieved but when I read stories like yours and others, I'm not so sure. Guess I'll always live in fear. On another site, a Stage 1a person said hers recurred 6 years later (she's now in hospice), another said 8, and another said 12 years later. I would have thought after 2 years we'd be in the clear, but seems we never really know. It's a frustrating and exhausting thought! I'm so glad they caught yours early each and every time. You must have a very good team. Hoping the same for myself, if it happens.

@inquirer I too am being treated at MSK and you're correct about never knowing...it is scary...I try to live my life doing what I enjoy and living as healthy a life style as I can...none of us know what the future holds so just one day at a time. I don't think about cancer too often because there is only so much we have control over so why waste time and energy on negative thoughts !! Hopefully there will be new effective treatments that we can try if and when the time comes. Being 77 I would be very happy to have another 12 years !!! Gotta keep the faith ! Who was your surgeon at MSK ? and are you still with MSK?

@inquirer I too am being treated at MSK and you're correct about never knowing...it is scary...I try to live my life doing what I enjoy and living as healthy a life style as I can...none of us know what the future holds so just one day at a time. I don't think about cancer too often because there is only so much we have control over so why waste time and energy on negative thoughts !! Hopefully there will be new effective treatments that we can try if and when the time comes. Being 77 I would be very happy to have another 12 years !!! Gotta keep the faith ! Who was your surgeon at MSK ? and are you still with MSK?

@genaf Hi ...I have been diagnosed with uterine serous carcinoma...I don't think its carcinosarcoma...but might be...also HER2 +....I started enhertu in May of this year..it's a targeted chemo combined with herceptin that identifies the protein in HER2 + cancer and blasts it killing the cell. My first 7 treatments were 3 weeks apart...my next 3 have been 4 weeks apart. My scans have been good so i'm hoping that at some point in the not too distant future i can spread the treatments further apart or take a break. The side effects are manageable and I am able to continue my busy lifestyle, but i dont really feel great for about 10-12 days after a treatment. Never nauseous, but appetite not great and some chemo brain.....all good if it keeps my cancer at bay ! Where are you being treated? and how was your cancer discovered ? would love to share stories as I haven't met anyone with this rare cancer..