My Uterine Cancer Journey Decided No Chemo/Radiation

@naturegirl5 You are very welcome. I have had multiple doctors tell me I am a strong advocate for myself. I believe in me and I believe in my doctors. I will listen to them when they listen to me. Mutual respect. I try to stay in my lane and ask 'If what you say is true then why ....? ' Filling in the blanks mainly on details about my symptoms, body, problems. I want to rationalize what they know with what my body is telling me. Most often it works for me.

Here is my story: 5+ years ago, I began occasional vaginal bleeding. I'm 70 now so it was post menopausal. Menopause was weird with a lot of gushing bleeding that my doctor had said was normal, so I had been wearing pads since and denied there was a problem. Got a trans-vag ultrasound and they noted my endometrium was thick but nothing else abnormal. Recommended D&C, hysteroscopy. I didn't have the time, insurance or desire. Fast forward June 2026. My younger (4 years) sister is having a gusher, also post menopause. She goes in and gets biopsy that identifies grade 1 endometrial cancer. She schedules hysterectomy; has the radical robot-assisted and is now cancer free (w 4% chance of return). She suggests I should get a biopsy. I get another trans-vag and a biopsy which resulted in a lot of blood and trip to the ER, where they performed the D&C, hysteroscopy and diagnosed the same thing for me - Grade 1 endometrial cancer. But my endometrium is very thick now and they aren't sure they can get my uterus out through the vagina. Vaginal bleeding increases significantly after biopsy and they prescribe progesterone and then a stronger version, which can cause blood clots. They move up the surgery. During the pre-op CT Scan they find two blood clots in my lung. Send me immediately to ER and keep me three days in the hospital while they try to figure out a strategy. Surgery is cancelled and I am put on blood thinner to prevent additional clots. They put me on chemotherapy to stop the bleeding and shrink the cancer and because it has pressed up against my bladder, they are concerned about it spreading. Also the CT Scan of my lungs in the hospital revealed "specks", which may or may not be the spreading cancer. I was told there would be three rounds of chemo. The current plan is those initial three rounds, surgery if all looks ok, followed by another three rounds and possible radiation to "get all the cancer which may have spread". This makes me stage 4A until surgery actually identifies the extent of the cancer. It may be 2A. Had my first chemo a week ago and I can say the side effects were everything I was told they would be. Two drugs to kill the cancer, one to boost my immune system and 5 to control the nausea, which they did but the resulting constipation/diarrhea was no fun either. Fatigue, muscle and joint aches lasted a few days. Believe it or not, moving around helps. And lots of water. They tell me we can manage it better the next time around, now they know my personal reactions. Today, I am going shopping for a wig because they guaranteed me that I will lose my hair and it will take at least a year post treatment to get it back similar to what it is now. I'm concerned that this experience appears to be growing out of hand and realize I could have nipped it in the bud if I had acted proactively 5 years ago. Cancer will be with us forever and we are the first ones in our family to have any kind of cancer. Nor have we had serious health issues until now.

I meet with the surgeon Thursday August 13. I'll share the outcome of our meeting later this week. I'm very nervous. Really have been blessed as I've had very little exposure to hospitals ... just one hospital visit in high school!

Here is my story: 5+ years ago, I began occasional vaginal bleeding. I'm 70 now so it was post menopausal. Menopause was weird with a lot of gushing bleeding that my doctor had said was normal, so I had been wearing pads since and denied there was a problem. Got a trans-vag ultrasound and they noted my endometrium was thick but nothing else abnormal. Recommended D&C, hysteroscopy. I didn't have the time, insurance or desire. Fast forward June 2026. My younger (4 years) sister is having a gusher, also post menopause. She goes in and gets biopsy that identifies grade 1 endometrial cancer. She schedules hysterectomy; has the radical robot-assisted and is now cancer free (w 4% chance of return). She suggests I should get a biopsy. I get another trans-vag and a biopsy which resulted in a lot of blood and trip to the ER, where they performed the D&C, hysteroscopy and diagnosed the same thing for me - Grade 1 endometrial cancer. But my endometrium is very thick now and they aren't sure they can get my uterus out through the vagina. Vaginal bleeding increases significantly after biopsy and they prescribe progesterone and then a stronger version, which can cause blood clots. They move up the surgery. During the pre-op CT Scan they find two blood clots in my lung. Send me immediately to ER and keep me three days in the hospital while they try to figure out a strategy. Surgery is cancelled and I am put on blood thinner to prevent additional clots. They put me on chemotherapy to stop the bleeding and shrink the cancer and because it has pressed up against my bladder, they are concerned about it spreading. Also the CT Scan of my lungs in the hospital revealed "specks", which may or may not be the spreading cancer. I was told there would be three rounds of chemo. The current plan is those initial three rounds, surgery if all looks ok, followed by another three rounds and possible radiation to "get all the cancer which may have spread". This makes me stage 4A until surgery actually identifies the extent of the cancer. It may be 2A. Had my first chemo a week ago and I can say the side effects were everything I was told they would be. Two drugs to kill the cancer, one to boost my immune system and 5 to control the nausea, which they did but the resulting constipation/diarrhea was no fun either. Fatigue, muscle and joint aches lasted a few days. Believe it or not, moving around helps. And lots of water. They tell me we can manage it better the next time around, now they know my personal reactions. Today, I am going shopping for a wig because they guaranteed me that I will lose my hair and it will take at least a year post treatment to get it back similar to what it is now. I'm concerned that this experience appears to be growing out of hand and realize I could have nipped it in the bud if I had acted proactively 5 years ago. Cancer will be with us forever and we are the first ones in our family to have any kind of cancer. Nor have we had serious health issues until now.

@danae25 I noticed that you've been a member of Mayo Clinic Connect since 2025 but I think this might be the first time you've posted in this support group.

Your story of what begin more than 5 years and then to date is so concerning. I've been told over and over again that vaginal bleeding post-menopausal is not considered to be normal and should be thoroughly checked out.

I'm sad to think you and your sister are going through this at the same time. I would expect that you can support one another but honestly no one wants their closest relatives to go through this.

I'm sending you positive energy that this cancer will not be with you and your sister forever. It's taken me a long time to get to the point where I keep going to my cancer surveillance appointments, learn that I'm NED (no evidence of disease) and can go back to living my life.

Keep coming back to our support group and we will be by your side.

When is your next appointment?

@danae25 I wish you the best ... may it all be in your rear view mirror soon

@karieblu Your appointment is coming up soon. I do understand your nervousness as I felt the same way when I first met with my surgeon. My husband came to the appointment with me and I'm glad he did. He had some of his own questions and I was so nervous I figured there would be something I'd miss or would not remember. I really needed a loved one with me to hold my hand throughout.

I wrote many of my questions on paper before my appointment. As it turned out my surgeon was so comprehensive in her explanation that she answered about 90% of my question that I did not need to ask.

I was very nervous the day of my hysterectomy. The nurses and all of the staff were so skilled that truly I felt like I was be attended to by angels. I often reflect on that because I'm such an anxious person most of the time that it's hard for me to believe I could be so peaceful before surgery.

Is there someone who will go to your appointment with you? Have you written some questions you'd like to ask?

@naturegirl5 Im going alone ... truth is Im such an empath I pick up on my husband's anxiety and. will do better without him! I haven't given him the entire picture yet ... but will as soon as I have substantially more info. And yes, I will take my computer and type answers (I have huge list) and will record our conversation

@naturegirl5 My story is a warning not to wait on getting these things thoroughly checked out. My sister has been fortunate. The hysterectomy was much easier than our mother's hysterectomy some 50+ years ago and her prognosis is good. Mine has just been more complicated. It actually was nice to have someone else understand what you were going through without having to explain and I think she felt the same. I could support her in a way her husband and children couldn't. Thank you for your positive energy. My next infusion is August 25th. Feeling stronger today than yesterday. And yes, I bought that wig that I swore I never would. Better haircut than the one I have now.