Considering hormone therapy, concerned about lipedema

bav

Thanks to all who post here and who offer support to others – I’ve found reassurance here and I am grateful. I’m offering my story in case it is helpful to anyone. I will try to provide updates and answer questions.

In Feb 2022 I was diagnosed with endometrial adenocarcinoma, FIGO grade 1, p53 wild type, ER positive and PR positive. Within a month I had a complete hysterectomy and was staged as 1B due to 53% myometrial invasion. My doctor had me meet with a radiation oncologist in order to get full information (she told I'd have 4-5 brachytherapy sessions but that if I didn't have radiation then, and later had a recurrence, I would also need external radiation). I also met with another gyn-onc for a second opinion. All agreed that it was my decision to have radiation or not. Given the low chance of recurrence (estimated as <4% as I recall) and the likelihood of short and long-term effects of the radiation I decided not to have radiation.

About a year later, and just a month after a normal check-up, I had an episode of slight bleeding. The doctor biopsied a new growth at the vaginal cuff; the results showed the same cancer as previous and since this was considered a recurrence, radiation was the next step. BTW, I was very glad that I had met with the doctor the year prior since I knew roughly what to expect. I had 25 sessions of external pelvic radiation followed by 4 sessions of internal (brachytherapy). The side effects of nausea and fatigue were pretty unpleasant, but I drove myself to all appointments and continued working, generally full time. I finished four weeks ago and on most days I feel much better.

This week I will have a follow-up with my doctor and we will discuss hormone therapy. I’d love to hear from anyone who has tried hormone therapy for endometrial/uterine cancer and what their experience has been - good or bad. Also if there is anyone in this forum with lipedema, I would be glad to know. There is no question all of the above has caused my lipedema to flare considerably, as can happen with hormonal changes, and I worry that hormone therapy would make it still worse, potentially inhibiting my mobility.

Thanks!

oldbeauty

Welcome bav. I was on high dose progesterone for 4 years, and am inclined to believe it helped me avoid a recurrence during that time. Please feel free to read my long profile. I've had a remarkable 17-year journey. If you decide to use progesterone (I had, IIRC, 400 mg of Provera daily), it likely will leave you with adrenal suppression which must be treated with low dose hydrocortisone for the rest of your life. Not a deal breaker for me. Also, women in this country are put on Megace and not Provera. You can get Provera in the US but the largest dose here is a 10 mg capsule (so a lot of pills to swallow). But my endocrinologist in the US told me she preferred Provera bc it did not cause weight gain like Megace often does, and, IIRC, she found its bioavailability better.

Food for thought. Good luck and best wishes.

Oldbeauty

Mercorby

https://csn.cancer.org/discussion/326480/considering-hormone-therapy-concerned-about-lipedema

Hi there,

I am on Ibrance and anastrozole. I have been on this regimen and in remission since my 2nd recurrence for 5 and a half years. I have ER+ & PR+ and HER2-. If this is the type of treatment your doctor is planning to use, please contact me and I can answer your questions about it. I have not had any lipedema. I do lead an active life - lots of swimming and chasing after grandchildren, etc.

Mercorby

https://csn.cancer.org/discussion/comment/1705435#Comment_1705435

For fun, and to see how it works, I asked Open AI CHATGPT about my treatment plan with my mutations, and the responses 100% matched the regimen that I am on!

BluebirdOne

Mercorby,

That's just crazy about CHATGPT. But not surprising. They are predicting big things from AI in the medical fields. Reduces the ingrained prejudices that doctors have about certain patients.

ConnieSW

Thanks for sharing that

bav

https://csn.cancer.org/discussion/comment/1705435#Comment_1705435

Thanks for the response old beauty, and for sharing your story. I have been on Letrozole for a few weeks now. I will try and if my lipedema worsens my doctor agreed I could go off. So I am measuring carefully and will track other side effects.

bav

https://csn.cancer.org/discussion/comment/1705664#Comment_1705664

Thanks for responding Mercorby. I am now on Letrozole, and will be tracking lipedema closely. I don't know how this medication Letrozole may differ from Ibrance and anastrozole -- but maybe you do. Taking it day by day.

Mercorby

https://csn.cancer.org/discussion/comment/1705816#Comment_1705816

Letrozole and anastrozole are both aromatase inhibitors. They block aromatase from changing fat into estrene, a kind of estrogen. Ibrance goes a couple of steps further after Letrozole or anastrozole stop working.

Echogurl

I was on Megace for four months. My blood pressure went up and I gained weight. It was discontinued because of a recurrence and I’m now in chemo.

I hope your treatment went well.

bav

https://csn.cancer.org/discussion/comment/1707579#Comment_1707579

Hi Echogurl: Sorry to hear about the recurrence - wishing you the best through chemo.

I seem to be doing ok on Letrozole - no major notable side effects, other than a bit of weight gain. Blood pressure is ok.

Unfortunately last week I had a onc visit and doctor discovered a vaginal "lesion" which may be an indicator of a complication from radiation (external and brachytherapy), which I finished on 3/28, so 4 months ago. She treated me with silver nitrate (ouch) and plan is to wait two months. If not healed by then, she suggests a biopsy. I hate to think about a second biopsy on an area which is so fragile from radiation.

NoTimeForCancer

https://csn.cancer.org/discussion/comment/1707579#Comment_1707579

Echogurl, I recall some of the other women saying how Megace had that effect on them. Have they done any genetic testing? Lots of things going on for dMMR, P53 and POLE mutations with immuneotherapy. Please let us know how you are doing. Hugs dear one.

MoeKay

Hi bav, after I finished radiation, I too had an area in my vagina that my gyn-onc treated with silver nitrate. At my next exam, everything was fine. I hope you have the same result!

bav

https://csn.cancer.org/discussion/comment/1707764#Comment_1707764

Thank you so very much for taking the time to write MoeKay -- I teared up. I have really been optimistic through all this. Then last week I had so hoped for my first NED visit since diagnosis 18 months ago and instead I am dealing with additional discharge, cramping, and blood with bowel movements - all of which I know can be an effect of the silver nitrate but they are all vivid reminders of the unpredictability of illness. My gyn-onc said "I've never seen something like this before" about the lesion, which is hard to get out of my head. I am trying to quiet what I think of as "radiation noise" -- obsessing about possible long effects and being hyper-vigilant about every possible symptom and reviewing over and over what the doctor said. I want to reconcile myself to the idea that my body is permanently changed and the fact that inevitably there will be more surprises ahead, but I'm just not there yet.