My Uterine Cancer Journey Decided No Chemo/Radiation

Thank you so much for this encouragement. I am in the decision making phase right now, but am a 2c (55percent) and with the exception of minimal cells in one lymph node (technically a negative finding) all negative biopsies.

I have grown in my faith exponentially during this experience and hope that was the point. For the most part have remained peaceful and trust that God has the plan.

I am inclined to decline both therapies and focus on boosting my health instead. I too have always had a very good immune system. If I decline (and hopefully even if I don't) I hope to work with a nutritionist and health coach to optimize my health. I have ADHD and can be very enthusiastic about starting a strict new lifestyle...but remaining consistent will be a challenge.

I am curious how you are doing now, and thank you for sharing your positive story.

@kellly Hope she responds. I'm curious too! I'm in similar situation.

@jabrown0407 You have a wonderful attitude! If you don't mind, may I ask what your symptoms were that resulted in a hysterectomy? I am 83, just diagnosed with Grade 1 endometrial cancer. Have had off and on bleeding for years, but was on HRT and didn't give it much thought. My only concern is my age and if recovery will be difficult for me

My symptoms were abdominal cramps that my doctor wanted to define as PMR hip girdle pain. I would have nothing to do with that symptom identification and requested a sonogram. That led to a vaginal sonogram and that led to the robotic hysterectomy. Recovery was very easy because the surgery was robotic so 5 inch incisions. Took 3 days for the pathology to come back. Thankfully, it was all benign. Pre-cancer, but benign.
Thank you for the comment on my attitude. I try to remain positive. I do find myself getting down from time to time. I am still able to find joy in every day so remaining positive really is not that difficult. Trust yourself, ask questions, seek truth. Your doctors are your partners in your health journey.

@karieblu Welcome to Mayo Clinic Connect and to our Gynecological Cancers Support group.

When I experienced vaginal bleeding I figured this was not normal and so got in quickly to see my gynecologist. I didn’t know at the time that vaginal bleeding is a symptom of endometrial cancer. However, vaginal bleeding after menopause can be due to a number of other benign conditions. So, it’s good that you got checked out when you did.

I had a laporoscopic hysterectomy with removal of uterus, ovaries, fallopian tubes, and cervix. My recovery was smooth considering the extent of what was removed. Mostly I was fatigued for several days and just took it slowly. Amazingly, I had same-day surgery and was in and out of the hospital in one day. .

How is your overall health? Have you discussed treatment options with your physician? Is surgery an option for you?

@jabrown0407 Thank you for letting all of us know what happens when you insist on advocating for yourself. It’s great that your doctor listened to you and ordered the sonogram you requested.

Congratulations on a benign diagnosis. That must be a huge relief.

Agreed that medical providers are our partners in our respective journeys. When I had a medical provider who didn’t listen to me, and made recommendations that did not fit my health and my lifestyle, I changed providers. I’m so glad I did because now I have a primary care provider who communicantes with me and we are partners in my health care.

@naturegirl5 I am meeting the surgeon this coming week. Yes, it will be a hysterectomy I believe. Grade 1. Probably stage 1A but not sure. I'm bleeding a lot! My overall health is very good if not excellent, but I'm concerned about being 83!!! Always active, feel great, etc. My ob/gyn said "lots of women even older than you have laparoscopic surgery"

@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.

@karieblu It's great that you been very active and have excellent health. I'm thinking your surgeon will be pleased to hear that.

What day are you meeting with your surgeon? Will you let me know what your surgeon says and what the plan is?