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!

@greatgrandma2025 Just incase you're using my scenario as input into your decision, I decided against chemo and never had it. Don't know if it's the right decision or not.

@heidivet That all sounds like a good plan. Getting another opinion from a cancer institute where there is research and the availability of clinical trials is a good plan.

This time of year is not the greatest for making changes to diet or lifestyle. This is especially true for me with lots of socializing and having guests over the holidays.

From what you wrote it sounds like you have a good exercise regime going with your neighborhood walks. Avoiding most processed and ultraprocessed food is so good. I have difficulty with that during the week when I feel I don't want to spend much time in the kitchen preparing a meal. I try to keep a variety of healthy foods in the freezer including those I've made myself. That helps me a lot.

It's very cold and snowy where I live in the northern U.S. so yesterday I snowshoed for about 2 hours with friends. That was loads of fun too as I like to look at animal tracks in the snow and try to figure out what kind of animals and what they are doing.

If you add exercise what would you like to do?

@naturegirl5 Thank you for this. I am looking into getting a second opinion from the Netherlands Cancer Institute. So far, I have not made dramatic changes to my diet or lifestyle. We have family here for Christmas which makes dramatic changes quite difficult. In fact, I have been a bit more sedentary because I have been the principal cook for the group, so I have less time. Our neighborhood group walks at least three times a week, and we have been missing those. I am interested in changing my diet and increasing my exercise but we already eat relatively healthfully at least in that we don't eat processed food much at all and grow our own fruits and vegetables that we mostly live on. If the Netherlands Institute second opinion does not work out I may look to the Mayo Clinic.

@alohman08 That is interesting. My medical oncologist is repeating the CA 125 so it is possible it will be high post-surgery and was just normal the first time. I've believe enhertu is not useful if you don't have a high CA 125? Is that your understanding?

@alohman08 Mine was 6 when the cancer was first discovered, and without any treatmement whatsoever, moved down to 3 just before surgery. The belief is that my body just hadn't recognized the cancer yet, so I don't know if CA125 is a good matker or not. I'll only know if the cancer returns.

@heidivet Welcome to Mayo Clinic Connect and to our Gynecological Cancers support group. You've already received some supportive and helpful replies.

I wanted to jump in and say that you are so correct about the difference among cancers. While we have endometrial cancer in common, the different kinds of cancers, and in particular which cancers are more aggressive than others means that our treatments will vary. Many of us have sought out second or third opinions on treatment options and this has helped us to decide what we want to do.

When I had a recurrence of endometrioid adenocarcinoma in 2021 I received a referral to Integrative Medicine. I'm still a patient at Mayo Clinic in Rochester and I continue to meet every 6-12 months with my Integrative Medicine physician. Her subspeciality is gynecological oncology and then she trained in and started the integrative medicine program at Mayo. She reviews all of my information and makes recommendations on diet, exercise, and lifestyle. I have added and dropped supplements at her recommendations, and made efforts to change my diet.

I am tagging @denisestlouie who made and continues to work at the recommendations she received for diet and lifestyle changes.

Have you made changes to your diet or lifestyle or sought out recommendations for yourself?

@heidivet good morning just an FYI concerning CA125 .. prior to surgery my number was 10 .. go figure ??? Today it is 15 and has been 15 since treatment with enhertu brought it from 77 to 15 .. apparently my cancer shares a lot in common with ovarian cancer ... very sensitive to CA 125 marker .. good luck !

@inquirer thanks for replying. There is a difference between our cancers. Mine is carcinosarcoma UCS vs yours which is serous. I just read a study from the NIH where they did a retrospective study and concluded that USC is more aggressive than serous. I hadn’t looked this up until now but your post prompted me to do so, so thanks for that and best wishes for continued success. Have you changed diet or lifestyle at all to improve your chances?