I haven’t been on here for a while but when I do log in I am always interested in how you’re all doing & reply if I feel my experience can, in turn, help yours.
I was first diagnosed Feb 2018, then had a relapse ( but possibly not as surgeon Prof CF felt the tumour she removed could well have been from my first diagnosis) in 2020.
After this 2nd op I had 6 cycles of carbo only. Once that finished I was put on Niraparib & still taking it to this day. Feel so grateful it has been working for me.
My CA125 has started to rise a lot more recently ( than in the past ) & I'm wondering if something is lurking.
I started HRT ( gel form in August 2022 ) which my oncologist was happy for me to do ( I was fed up of my hair dripping with sweat & felt embarrassed when out & this happened).
My question to you wonderful ladies is, if you’ve been told your cancer is oestrogen receptive, how did they find out?
I do not know if mine is but thinking by having the Oestrogen only HRT gel it may well have unsettled things.
Both Prof CF & my oncologist are away on holiday at the moment so can’t ask them whether there could be a connection.
Since last bloods ( they take from me every month) I have stopped the HRT to hopefully give me some idea if this has anything to do with my rise in CA125 levels . Next bloods 25th April.
I’ve also had a stressful couple of months ( my father in law died after being in a hospice for over a fortnight ).
Just hoping something else has caused this rise instead of the cancer rearing it’s ugly head again 🤞🏼
Thank you in anticipation of your experiences & help with this
Take good care with love Lynne xx
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Sorry to hear you’re worried about your rising CA125, I know there are lots of things that can make it rise, stress and inflammation I’m sure would have an effect, but I understand your concern around hrt.
My situation is a bit different to yours, as my recurrence has been confirmed after 5 years. Bit of an unusual case as I only found out from my new onc after getting a second opinion that my original OC was Low Grade all along. What has upset me is that I have been taking estrogen hrt for around 2 years, as I discovered I was osteopenic and having terrible insomnia. So with the blessing of my then gynae onc surgeon, and in the belief that my OC was Clear Cell, I started hrt.
When I found out about my re diagnosis I got very upset and told Prof J about this, I felt I had caused this recurrence. He told me there is no way of knowing if that was the case but now we know to stop taking it as Low Grade is usually estrogen driven, so safer to stop. He told me it was positive that I could have secondary debulking and to focus on what we could now control.
I guess I made the decision to start hrt based on the info available to me at that time, but I do regret it now in light of my re diagnosis. I think the only way of knowing if your OC is estrogen sensitive is to have your original tumour tested, so maybe your onc could arrange this for you? It’s tough as I know the side effects of menopause are hard but there seems a lot of uncertainty around the risks for certain types of OC. I believe some women take it with no issues at all, but for me it was a decision I regret. Anyway we have to look forward and stay positive!
I really hope your rise in CA125 is nothing to worry about, and maybe some other ladies could share their experiences of hrt after an OC diagnosis,
Hi, sorry to hear about your worries and situation. I didn’t have HRT but I am now on Letrozole on second recurrence. Short stint on Niraparib. Onc advised that as all biopsies from last surgery were oestrogen fed it was likely this would be same again. They cant biopsy to check as in too difficult a place to get to and would risk spreading cancer cells from a contained tumour anyway. I think they keep the samples for about 10 years so can get yours checked if they don’t already know? Oddly my initial biopsies from first surgery in 2019 were progesterone rather than oestrogen fed, if that's the correct word to use. Hope you can get answers from your team soon xx
Thank you. Your reply has been most helpful. Sounds like there are a few challenges with your journey with this nasty disease. Wishing you all the best with your continued treatment xx
Once any biopsy or surgery is done they check in the lab to see what type of OC it is. Mine is Estrogen positive so I can't have HRT in any form. I am now on Anastozole to make my body not produce Estrogen to help keep the OC from returning for the 3rd time and give me a longer chance of survival. Only 5 months in so hopefully it's helping.
I don't think your oncologist would of agreed to the gel if it would be putting you at risk of a reoccourance
Hi Lynne, my dr. told me that my high grade serous carcinoma was estrogen driven. I took hormone therapy for many years because of menopause hot flashes. I’ m wondering now if I should have stopped the HRT, because it could have been a factor in getting OC. I was on estrogen and progesterone, a very low dose, but for many years. My nurse told me that it was rare that mine was estrogen driven. It can be so confusing on knowing what to do or not to do. I was diagnosed in Sept. of 2019 and taking niraparib
for almost 3 years in July with a few breaks once in awhile. I believe they will stop this in July when I reach 3 years. So far I am NED, fingers crossed that I can stay in remission for a long time. Just sending my best wishes with your treatments. Your picture on your profile shows such a pleasant smile 🥰 Take care, Donna xx
Hi I have HGS OC stage 4. After they removed the mass and sent it for histopathology they tested the sample with a dye. If it takes up the dye and stains dark it is strongly estrogen responsive, the paler the less. Mine has recurred and even though mine was v mildly staining, the oncologist is considering tamoxifen to block the little estrogen still being produced by my adrenals. He believes estrogen always encourages tumour growth. I stopped hot flushes by cutting out carbs and sugar. I found I flushed an hour or so after meals. No carbs much milder flushes
I am gutted I was put on HRT ( albeit a low dose in gel form) -my consultant said it would be fine - you put your trust in these experts don’t you? In hindsight ( isn’t that a wonderful thing) I should’ve been more proactive in finding out more about the risks before taking it. I stopped taking it since my last bloods & will wait to see what my next bloods show ( I’m having taken in a fortnight).
Sorry you have a recurrence. It’s such an emotional rollercoaster. Hope your team find a plan that works for you to get rid once more. Everything crossed for your continued journey.
Thanks again for taking the time to reply, Lynne xx
I sometimes wonder if the companies making the HRT and profiting from it are not suppressing the research that shows the increased number of women developing cancer as a result. I have no cancer in my family so never thought it was a worry. However, after always saying there was no risk, they stopped my HRT the second the cancer was discovered. There must be a link even if only for 1 % of the women on HRT. My gynae says he has never seen this much ovarian and gynae cancer and he has been around a long time. Plastic pollution of the ocean and our food is also producing female hormones but that's another story!
Hi - I was also worried my cancer had been caused by HRT - oestrogel - which I had been taking for a few years. However my oncologist has repeatedly told me it was not caused by HRT as I did not test positive for oestrogen. I don’t know whether this is correct or not - I also just wish I knew xx sending love to all xxx
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