Pre-menopausal endometrial cancer - did you keep your ovaries / did you take HRT?

Hello and welcome Suspiria, i sorry you have had to join us but there is a wonderful amount of fabulous ladies here who i am sure will explain their experiences. I was 38 and had everything removed and had no HRT. Yes its true you are slammed straight into the menopause i know everyone’s different but for me i don’t feel as if it was as bad as i thought it would be. Yes the hot flushes were a bit of a nightmare and my memory isnt as good as it was but worth mentioning too that i am extremely dyslexic so that would have an extra effect on me. Apparently there is an alternative to HRT that doesn’t give the same risk with cancer i wonder if its worth you looking into that as an option for you, I decided not to bother as i felt my menopause symptoms were do able but i do appreciate that for others it can be hard. I believed that menopause hit like a freight, suddenly as because our body hasn’t gradually reduced the oestrogen. I do have other health issues which obviously have been causing complications but i have to say that the surgery recovery in its self was excellent. I know i can get cold or hot when everyone is opposite but generally ok. Some of the best advice i was given was wear as much natural material as possible and cotton bedding, a fan for the hot sweats does help. I think the most important thing often over looked is to except your bodies changes, it’s natural to try to fight the flushes but feel worse afterwards. Try to stay calm to all and not frustrated, yes easy said then done but very important for your well being. It’s ok not to be. I know you most have loads of questions from your op in October https://community.macmillan.org.uk/cancer_types/womb-cancer-forum/f/general/217904/what-to-take-in-my-overnight-bag/1751384#1751384 this is a lovely list of things advice to take to the hospital but also afterwards. 

Remember your not alone and we are all here to help as best we can

Sending gentle bear hugs  

Thank you so much, GBear, for your kind and detailed response; this is really helpful. Thank you also for your great advice, and for encouraging me to look for alternatives.

I understand that night sweats and hot flushes will be very challenging but will pass.

I am reading about women in our situation, and we don’t have good survival prospects as we are much more vulnerable to heart and bone disease and a shorter lifespan overall. There is just nothing positive online about this; it's all doom and gloom, hence me trying to see how real people deal with the experience.

How are you coping physically and mentally with such things? Do you have your bone and heart health checked regularly?

I am considering taking HRT regardless, but I’m not sure if that’s a good move with a high-grade cancer.

Thanks again for your great kindness, and sending you many hugs.

Suspiria

Hello again Suspiria, lovely name. Yes indeed i have heard about the possibility of bone problems and heart related issues. Ok to be fair this is a difficult question for myself to answer as i have a family history of heart problems so is it related to my family history or the sudden menopause, i do have issues with heart rate sudden drops and i have wear and tear  arthritis before my op probably due to my job which was a lot of heavy lifting, i also have a tumour in my t10 vertebrae and have had a bone scan which showed that despite the other previous issues I haven’t had any extra due to the menopause, its been 5 years since my op and yes i do have chronic kidney disease again i have a history of kidney issues for many years well, well over 20 years its early stage disease but otherwise i have to say recovery from the op has been great, i did have a great team though and this is important for two good reasons trust and competence as you have to have faith in everything they do and advice. Honestly the decision is ultimately yours no one can say what you should do other then i didnt want to give myself any extra cancer risk if i could help it. Mentally well you know its been hard sometimes, i do have bad days i really do but i feel very blessed to have joined a lovely support group that has also made many friends from around the world too. My local cancer support group have also been amazing and here. It’s good to talk to those who have gone though it or going though it because we know. I know both on the Macmillan support line and also their main website has an in your area list of groups these can really help so much. The important thing i found was to except i had issues  mentally i was angry and frustrated and confused but its been helped hugely having people to talk too who understand, i had a battle to get diagnosed so its was an enormous amount of pain to have been fobbed off and made to feel i was making a fuss about nothing, I wish it was true. I am lucky i was stage 1a grade 2 but everything was contained in the womb but on my scans it did appear to have spread to the Fallopian tubes and ovaries so removing everything was prudent as it could of spread. I only had surgery which was great for me but i know from others that chemo and radiotherapy is tough but do able.

sending gentle bears hugs

It’s so kind of you to respond again - thank you, GBear. I am sorry that you have a number of health challenges alongside the cancer and the treatment and what they entail. There is though much positivity to hold onto: as you said, you have a wonderful supporting team and local and online communities to reach out to for support and shared understanding. 

I am very afraid of life post-operation; we all are. It won’t be the same. I am afraid of rapid aging. But there is nothing we can do, and I suppose we adapt. 

Thank you for being here. Take care xx

Suspiria

Hi there @suspiria . I had a total hysterectomy in May and my ovaries were retained. I am 42 but was not even peri-menopausal when I found out I had to have surgery and had to go through the same decisions as you. 

My surgeon was very helpful and supportive in me retaining my ovaries although it was a bit of a gamble and I was told I would always be able to have a separate oopherectomy if anything was found in my tubes (which it wasn't).

I am getting good support from my gynae/oncologist consultants, have had full scans to check on the status of my ovaries (all clear so far) and have had several meetings discussion how I can have regular screening (we are thinking an annual ultrasound at the mo - I am seeing them again next week for another chat). The idea is for me to have them removed when I'm less likely to need them and I have been told it's a much less invasive day surgery op with a 2 week recovery. I am really happy with my decision, feel safe and feel like I am being listened to. And enjoying this lush sweet spot of no periods, but no menopause either.. After relentless bleeding for years it is so liberating not to have to think about it anymore.

Of course, everyone is different and staging will have an effect, so the decision will have to be yours.

Hi Cakenport,

Thank you so much for your reply; you cannot imagine how precious your experience is to me, when I am faced with such difficult choices. I am so happy for you that you are pleased with your decision. 

I appreciate that the decision is mine to me, but I want to make it as informed as possible.

I am so grateful for the beautiful community here.

Best wishes,

Suspiria

Hi Suspiria

I know I have been incredibly lucky with my consultants. I did raise this concern to them too re: having to fight my case to have a second op (it took me 2 years to be taken seriously by GP etc.) and my consultant assured me that would not happen.

I went in for a hysterectomy having them only found pre-cancer cells by chance (I had a polyp removal), so as I say, it was a bit of a gamble as I didn't know what I was dealing with. I ended up having Stage 1 Grade A so was incredibly lucky to have found it so early despite all the delays.

The wait for the histology after hysterectomy was slow for me but I have no doubt if there was any cells found outside the womb or in my tubes then I would have been straight onto the waiting list again so that made my decision a lot easier. If you can't get those assurances from your surgeon then I would push to have a one-to-one with your CNS and if you haven't been appointed one (I only got one AFTER my surgery) drop your consultant's secretary and email to ask them to sort you out with one.

I have to say that I have received much treatment and support since being graded and my CNS nurse and Macmillan have been very communicative and approachable. My GP has been absolutely useless so if I ever have any issues I will be sure to go straight to them.

All the best coming to a decision. I remember it feeling absolutely ridiculous emailing to confirm to my consultant my decision like I was ordering something out of a catalogue.

Thank you so much, Cakenport – this is very helpful and insightful. I am so pleased for you that your cancer was low grade and stage; I hope that all your scans are fully clear and that the monitoring process will be peaceful. I will reach out for as much support as I can at this critical stage.

Take care, and thank you again.

Warmest wishes,

Suspiria

Hi Suspiria,

I just posted about my post op experience with HRT here: https://community.macmillan.org.uk/cancer_types/womb-cancer-forum/f/new-here-say-hello/246445/hrt-for-early-surgical-menopause I hope it helps a bit. I wasn’t offered the opportunity to keep my ovaries, at the time I’d have probably let them take everything and anything else they wanted to but with the benefit of  hindsight I’d have thought about keeping them in my own case. 
I would struggle to continue to work full time without the HRT, the antidepressants made me really sleepy all the time and a bit spaced out - although noone at work complained lol. I think trial and error with different types of antidepressants might help find a good one, a pharmaceutical rep friend said mine were old fashioned now (fluoxetine). 
my gp arranged a bone scan for me whilst I wasn’t taking the hrt to make sure my bone density was as it should be (it’s worth asking about them if you don’t go with HRT), If you are in the UK I would also recommend asking for a referral to a menopause clinic- they have been really helpful for me but it took a bit of time to get an appointment.
 lots of love for your operation (I was so scared before mine but it wasn’t bad at all) xx

Thank you very much for your kind response, Arla; I am very grateful.

May I ask if before your operation the MRI or CT scans showed up any changes in the ovaries? You write above that you would have kept them, looking back. Does that mean that the histology showed that they were healthy, overall?

I am in the UK, and here it seems that the doctors do not automatically dismiss HRT. I am really pleased that your hormonal treatment is helping. At the moment, I am still considering keeping my ovaries, though my cancer is very high grade. 

With so many thanks,

Suspiria