Endometrial Cancer: Noticing my blessings every day

I have been diagnosed with stage 1a carcinosarcoma of the uterus. I have had the surgery for a total hysterectomy, sentinel lymph nodes and omentum removed three weeks ago. I sat on the vaginal bleeding for almost a year (I know that was stupid, but there were many circumstances that went into multiple delays) but the point is, it did not get any worse in that time frame. It was found to have invaded the uterine muscle by 1mm but otherwise no other tissues are involved. I have been told I should do six chemo treatments (was told at least 3 preferably the full 6) with carboplatin and paclitaxol which looks to be a pretty standard treatment. They also recommend three radiation treatments which I suspect will be the brachytherapy, but I am not certain. My question is, if everything was removed already, what happens if I don't do all that chemo and radiation therapy? Is there a more holistic, natural treatment that could be as good long-term as this seemingly aggressive therapy? Have any of you out there with a similar diagnosis declined the chemo? They make it sound like it has a 70- 60% chance of recurrence and it is much harder to treat if not done now. They also make it clear that there is a lack of studies for this type of cancer. Basically, recurrance involves controlling the cancer vs the chance of cure if done right away. I feel real pressure to decide quickly. I noticed that one woman is now dealing with lymphoma (or leukemia) which may or may not be a sequela of the original chemo. Tough choices for everyone who is going through this. Courage and faith!

I have been diagnosed with stage 1a carcinosarcoma of the uterus. I have had the surgery for a total hysterectomy, sentinel lymph nodes and omentum removed three weeks ago. I sat on the vaginal bleeding for almost a year (I know that was stupid, but there were many circumstances that went into multiple delays) but the point is, it did not get any worse in that time frame. It was found to have invaded the uterine muscle by 1mm but otherwise no other tissues are involved. I have been told I should do six chemo treatments (was told at least 3 preferably the full 6) with carboplatin and paclitaxol which looks to be a pretty standard treatment. They also recommend three radiation treatments which I suspect will be the brachytherapy, but I am not certain. My question is, if everything was removed already, what happens if I don't do all that chemo and radiation therapy? Is there a more holistic, natural treatment that could be as good long-term as this seemingly aggressive therapy? Have any of you out there with a similar diagnosis declined the chemo? They make it sound like it has a 70- 60% chance of recurrence and it is much harder to treat if not done now. They also make it clear that there is a lack of studies for this type of cancer. Basically, recurrance involves controlling the cancer vs the chance of cure if done right away. I feel real pressure to decide quickly. I noticed that one woman is now dealing with lymphoma (or leukemia) which may or may not be a sequela of the original chemo. Tough choices for everyone who is going through this. Courage and faith!

@heidivet Good morning...I was diagnosed with uterine serous carcinoma in April 2021. It was picked up on a routine pap smear ( very unusual)...no symptoms at all. I fast tracked everything because I was told from the beginning that it was a rare and aggressive form of cancer. I has a total hysterectomy and was told that it was caught very early and had not spread beyond the uterine wall. I asked about chemo and radiation and was told that chemo would not prevent recurrence in the future and that brachytherapy was recommended. I had three treatments with radiation, very easy with no side effects. 18 months later the cancer recurred in my omentum and I had 6 rounds of chemo with carboplatin and paclitaxol. I tolerated the chemo well with few side effects other than loss of my hair, which wasn't fun but I found a great wig and looked good. After the 6 rounds I was NED (no evidence of disease). my hair grew back and I continued with a 30 minute infusion of herceptin every three weeks...no side effects from the herceptin , but have echocardiograms every 12 weeks because the heart can be weakened by the drug. In August of 2024 my CA 125 began to trend upwards...and yes again the cancer is back in a very very early stage..only seen in 2 lymph nodes in my pelvic region seen on a PET scan...My doctor told me that I could put off treatment until things got worse ??? or start with a targeted chemo drug called enhertu...I chose to start treatment in May of 2025...I have had 11 treatments and again I am tolerating the drug well with few side effects.......the infusion is 30 minutes as opposed to the 4 hour treatment of carbo...and I have been able to increase the time between treatments from 3 weeks to every 4 weeks......My PET scans have been NED so thew drug is working...ohhh I should mention that my cancer is HER2 + which is why enhertu is the drug of choice. I feel great and hate that I have cancer even when the scans show no evidence of disease because I know it is always lurking somewhere. My hope is that enhertu will continue to keep cancer at bay and that if it stops working there will be other drug therapies that will work.
I have a very active lifestyle and that has continued during my cancer journey that is going on 5 years with 2 recurrences. I hope that you are luckier than I have been with recurrence. I think you need to have faith in your doctors and if you don't find another. I am being treated at MSK in NYC. and I believe that I am in good hands . Good luck to you and happy holidays !

I have been diagnosed with stage 1a carcinosarcoma of the uterus. I have had the surgery for a total hysterectomy, sentinel lymph nodes and omentum removed three weeks ago. I sat on the vaginal bleeding for almost a year (I know that was stupid, but there were many circumstances that went into multiple delays) but the point is, it did not get any worse in that time frame. It was found to have invaded the uterine muscle by 1mm but otherwise no other tissues are involved. I have been told I should do six chemo treatments (was told at least 3 preferably the full 6) with carboplatin and paclitaxol which looks to be a pretty standard treatment. They also recommend three radiation treatments which I suspect will be the brachytherapy, but I am not certain. My question is, if everything was removed already, what happens if I don't do all that chemo and radiation therapy? Is there a more holistic, natural treatment that could be as good long-term as this seemingly aggressive therapy? Have any of you out there with a similar diagnosis declined the chemo? They make it sound like it has a 70- 60% chance of recurrence and it is much harder to treat if not done now. They also make it clear that there is a lack of studies for this type of cancer. Basically, recurrance involves controlling the cancer vs the chance of cure if done right away. I feel real pressure to decide quickly. I noticed that one woman is now dealing with lymphoma (or leukemia) which may or may not be a sequela of the original chemo. Tough choices for everyone who is going through this. Courage and faith!

@heidivet I'm in exact same situation as you; diagnosed with Serous Endometrial Intraepithelial Carcinoma Stage 1a in June, with a few cells having invaded the musular lining. Surgery included a radical hystorectomy and removal of areas where the cancer was likely to have spread microscopically (like the omentum). One oncologist at MSK and another at UC Irvine said with a 20-30% chance of recurrence, just "wait and see" (no recommendation for chemo). However another doctor at UCLA said to do chemo so that recurrence is lessened by another 15%. I was thoroughly confused and went back and forth for months. Adding to the confusion were second and third opinions that kept changing my diagnosis; from precancer, to cancer only in the uterine lining, to a few cancer cells having gone beyond the uterine lining into muscular layer. I read as many posts as I could on sites such as this one and even discussed scenarios from the posts (thanks to people like alohman) with my oncologist. The UCLA doctor who recommended chemothetapy also gave me indepth studies to read and I reviewed them with the other oncologist who recommended wait and see. Through it all, with my brain totally exhausted, I ultimately decided to wait and see. My own logic was that no cancer was found anywhere else in my body, the areas where it was likely to exist microscopically were already removed, the extra 15% benefit did not guarantee non-recurrence nor outweigh the potential damage from the chemo itself, and it increased the chance of me becoming platinum resistent sooner if recurrences do happen later. I found many posts supporting both sides, so making this decision was really tough. I'll never know if it's best because if I do recurr, it could"ve recurred even with chemo. I just had to make a decision and stick to it. There's no clear right or wrong for people in our situation, unfortunayely.