Post treatment

Hi Ma80, I was happily on HRT before my shock stage 1A, grade 1 diagnosis and same operation as you in June 2024. The consultant told me to stop HRT (patches) when diagnosed, but once the histology results were in confirming the stage and grading he was ok for me to continue HRT if I wanted. At the time I thought the HRT had contributed to me getting cancer so I decided to try without it. Whilst my symptoms did improve a little with time, 18 months later I was still getting (milder) hot flushes, not sleeping well and had vaginal atrophy that non-hormonal treatments weren’t really helping enough with. Just before Christmas I came to the conclusion that I’m 53, hopefully have ~30 years left on the clock, and didn’t want to feel like this (coping but still not 100% me) for years to come, so I started doing some deeper research on cancer and HRT (I have a scientific/R&D background).
My conclusion was that HRT didn’t cause my cancer, but if you get cancer the HRT can feed/grow it. The British Gynaecology Society guidelines are well worth a read (google for them) - basically for stage 1A, grade 1 there is no negative evidence for HRT (unlike other grades/stages), so on re-reviewing my histology results, my considered decision was to go back on HRT. My GP checked with the consultant first who was ok with it and I started just before Christmas. I was prescribed 1 pump of Oestrogel a day but after taking it for just a few days I found I was pretty receptive to it (wasn’t imagining it as my vagina plumped right back up) so I’ve gone down to 4 pumps a week as I want to be on the lowest effective dose possible. I’m keeping a close eye out for any bleeding (the consultant at the time said a 3-7% chance of reoccurrence and if so it would be in the vaginal vault so bleeding would be the symptom). So, I’m around 6 weeks in and so far, for me at least, the benefits outweigh the risks. I still have a couple of warm moments overnight but no heavy sweating, I’m also sleeping better and feeling more ‘me’, with more mojo). I know it’s a bit of a risk and that’s a decision that you’ll need to weight up and make for yourself. Hope this helps and sorry for such a long reply (more info on my journey in my bio).

Hi Ma80

Am pleased to hear that you are recovering ok from your surgery and that your post op histology has come back as early stage and grade. 

For stage 1a and grade 1 ladies are often discharged to patient led follow up. This is because their risk of recurrence is lower that someone who has a higher stage/grade. It is important to be aware of any signs of potential recurrence and to know what to do if they occur however. 

I had a different stage and grade cancer to you and had chemo and radiotherapy. My check ups happened for 2 years post treatment. I have put a link below which tells you about the signs of recurrence to look out for. 

(+) Check-up appointments after endometrial cancer treatment- Jane's story - Macmillan Online Community

With HRT your gynae consultant clearly knows your full results and history so I would be led by them. 

However I was told that for a hormone positive cancer that it was far better to try to do without HRT if at all possible. My consultant said that taking HRT could lead to a recurrence and if it happened it could feed the cancer. 

However although I had a stage 1 cancer, my grade was higher. It has to be a risk vs benefit decision but an informed one. Type of HRT would also be a consideration eg; low dose topical. 

For me, whatever stage or grade I had, I would not consider HRT- as anything that could possibly increase the risk of a recurrence is not worth it. For me, even a low dose topical HRT would concern me as one area that recurrence can often happen is at the vaginal vault and I would not want to be directly putting anything hormone based in the area. 

However your consultant has said it is possible and they know your full history. It has to be a personal decision, weighing up any pros and cons- so severity of symptoms and any increase in the risk of recurrence. It is a tough decision and there will be some ladies on here who have struggled with menopausal symptoms and are using HRT. HRT does seem to come up a fair amount on here.

I would talk to your doctors and ask plenty of questions to get some reassurance so you can make the right decision for you. You could also give the Support Line a call and talk to one of the nurses. 

Jane

Thank you so much for taking the time to reply. That is really informative and such a great help to me. Appreciate it. Glad your doing well

Thankyou Jane. My own gut feels for whatever reason I should stay away from it at least as long as I can. Which is probably just fear but I think for as long as I can il avoid.hrt.

Hi Jane, thank you so much for sharing the link to check up appts after endometrial cancer treatment. It is really helpful to know what to expect post treatment. I think I have had similar diagnosis to you, I had my hysterectomy 2 weeks ago and just waiting for histology results. I have been advised that I will most likely need radiotherapy. Just wondering if you continued to have CT snaps as part of your ongoing checks. 

Perhaps see how you go and see whether you need it. If you do find you need it then you know the option is there. 

I think in my case any symptoms I had that could possibly be put down to menopausal ones were probably caused by the chemo. 

No CT scans- I was told that they don't like to do repeated scans unless there are any concerning symptoms. 

Yes I believe you had a provisional grade 3, stage 1. 

My post op came back as 1b and grade 3. I did not get told a provisional grade but was told that I was likely stage 1-2. I was told that radiotherapy may be needed but not chemo. Post op I was advised to have chemo and then radiotherapy. 

I had both in 2022. I am 3 1/2 years post treatment and doing ok.

I was really pleased to hear this. I am in exactly the same situation as you and think I’m going to go back on HRT. I’m one year out from my op and 54. I found the new guidance from the BMS really helpful. 

One thing to mention, if there is a history or background endometriosis, progesterone should be added. I found this out for myself, then asked my CNS, who checked with the chief menopause consultant who confirmed that was correct. 

Interestingly, there was a study last year that compared outcomes for women in three groups: 1) on HRT; 2) estrogen only HRT & 3) oestrogen & progesterone HRT. There was no difference in recurrence rates between the first two groups and actually a slightly lower recurrence rate for group 3. Not enough evidence to affect guidance yet, but interesting.