Endometrial Cancer: Noticing my blessings every day

Posted by Helen, Volunteer Mentor @naturegirl5, Aug 20, 2019

I was diagnosed with Endometrial Cancer, FIGO Grade 1 in late July. I live in the Upper Peninsula of Michigan and asked for a referral to Mayo. A few days after the referral, I met with my GYN-Oncology team, and a few days after that I had a radical hysterectomy at Methodist Hospital. The surgery was two weeks ago today. I am grateful that I had the means to go to Mayo Clinic, for my surgeon and her incredible team, and that I am now back home on this gorgeous day surrounded by support and love from my family and friends. (The cancer was staged Ia - caught very early and no other treatment is recommended). My life is a gift for which I am very grateful.

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

Profile picture for heidivet @heidivet

@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?

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@heidivet Enhertu is the drug of choice for USC cancer that has recurred and is her2+...it is a targeted chemo drug that works with trastuzumab. It targets the protein that is in the cancer cells and kills them. Only works for her2+ cancer. Has been used in breast cancer and was approved by the FDA a year ago for other her2+ cancers including uterine cancer. I don't think that the CA125 number indicates her2+ cancer...although not sure..I only know that my cancer is her2+ and responds well to enhertu !

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Profile picture for heidivet @heidivet

@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.

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@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?

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@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?

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@naturegirl5 my daughter suggested I get a stationary bike. It is probably a good way to exercise when it’s cold out. We live in the North East/mid Atlantic so not typically bitter cold but it can be and we certainly have plenty of winter weather. I like hiking, biking, skiing either downhill or cross country and love horseback riding although I haven’t been doing that for quite a long time. We rarely get enough snow for cross country here and downhill is a two hour drive which makes for a long day. I do some high intensity exercises and when I’m allowed to I’ll go back to sit ups and stair push ups.

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Profile picture for inquirer @inquirer

@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.

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@inquirer So far I have decided to wait. I need someone who felt like me. Thank you again In the end it is the most personal decision to make.

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Profile picture for heidivet @heidivet

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!

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@heidivet Don't be pressured. I won't go into my situation where I was pressured and in hind site I was pushed into something I didn't need. Keep reading here and research. Take a day to make any decision. Best wishes.

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Thanks for that advice. I’m proceeding with plans for chemo but still feel a little uncomfortable with the rush. I’m not a gambler by nature so not doing chemo feels a bit like gambling. Doing chemo feels less like gambling but only a little less. 🫤

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