It's been 10 years since I had my ovary & borderline tumor removed ( I was 24)
At my annual check yesterday the subject of removing the remaining ovary was heavily pushed and to my shock was told HRT would not be an option. I was too shocked to think of asking any questions. I am beside myself at the prospect of surgical menopause & no HRT. Is this the case for BOT? There is no family history that o know of but I was told yesterday that because I had cancer cells in my ovary that I will be treated like I have the brca gene,I can't get my head around it. I knew the surgery was a given at some point- I'm 34 now & hope to get as close to 40 as I can but I feel like a ticking timebomb after yesterday's check & clear ultrasound so it wasn't all bad news.
I have severe anxiety issues since this whole process began, I was pregnant with my first baby. I had been barely keeping a lid on it but now the pressure for surgery without HRT has sent me into almost meltdown. I'm so frightened & I feel so alone in all of this.
Please can you ladies advise. Is anyone taking HRT? If not how have you managed symptoms?
Thank you for reading
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DirtyFab
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Sorry you are in this position but seriously take time to think about your options and don't be rushed into anything particularly as there is no need at all at the moment.
You don't say if you have had or are hoping to have children as obviously this will hugely influence what you decide. I think given your history and if you have had children I would consider having my other ovary removed. I only say this because reading people's recurrence battles on here it's a risk I would totally want to eliminate.
Like me, you were one of the few people whose tumour was diagnosed early (mine was stage1). I had debulking (surgeon made this decision himself in opening me up but thankfully I'd had 2 children). I was on HRT for 20 years after as I was told it was safe for me to do so. Have they explained why they won't? I had 3 nights of hot flushes after my op and that was it as far as I was concerned but I wanted HRT as I was only 34 at the time and didn't wasn't to lose oestrogen for all the other benefits.
It's easier said than done I know, but you are in a great position to decide what's best for you. Get as much advice as you can and as I said, don't be pushed into anything yet.
Hope this helps. I'm sure you'll get great counsel from the others on here.
Oh Catherine thank you so much for replying to me, I'm feeling so lost right now.
I have children so that side of it doesn't factor into the decision. It's the terror of the unknown,what will surgical menopause bring, particularly with no HRT.
I didn't even question anything yesterday I just sat there. Parts of the conversation only came back to me last night.
I feel so alone in all of this.
I was told yesterday that from 35 my risk will continue to grow every year. I hope,like I say, to reach 40 before surgery but with that I feel I'll pay the price mentally. Blood pressure medication was mentioned for hot flushes..and if I was very bad maybe a very low dose HRT temporarily. I always thought that it would be safe up to age of natural menopause.
I have a young family and I'm not holding myself together well at all today. I'm off to do the school run with red bloodshot eyes and I hate that I'm reacting like this and not stronger.
After some reading on here this morning ( I'm so thankful for all the ladies on here sharing experiences) it seems even borderline tumors can be oestrogen receptive. I'm not aware if this text was ever carried out on my tumor. Did you have a test on yours?
So sorry you are going through this and how horrible to be diagnosed at just 24. It seems as if you haven't had any recurrences ...if so that's great news.
I was diagnosed with a BOT at 48 after surgery and took HRT since then. I couldn't imagine coping without it. This was eight years ago and since then almost everybody I have done across has been given HRT. At your age , this seems like cruel advice. Also I'm sure the doctors mean well , but definitely ask for a second opinion about this ie the HRT and also the surgery.
There is a closed FB group for borderline ovarian tumour people , it's really good . Try joining it if that's your thing.
Remember it's your body and you need to be certain that what is being suggested is right fir you xxx
You are so young. I sometimes feel like a winging old fart when I hear of young girls like you facing this monster that brings us here. At 38 I had a partial hysterectomy and they left my ovaries, which are now a big problem of course. I had four children. At 51 I started the menopause naturally but symptoms were horrendous and I would literally growl at people as I was in a permanent bad mood. Tried HRT and freaked out. Stopped after a couple of months. Did some research and started on Agnus Castus tablets and B Vitamins. Within 2 months all menopause symptoms stopped and stayed away. I stayed on the A.C. until this year when chemo started. I'll be 69 on Monday. Without wishing to sound too rude, but we speak our minds here, sex was never a problem as I never needed KY jelly, if you know what I mean. Do now though since the A.C stopped. Yes, I know I'm old, so is hubby, but making love is wonderful at any age!!!
Black Cohash is also good for menopause symptoms I understand but good old Agnus worked for me and many of my friends.
Please don't worry. There's help out there. Don't risk your life by hanging onto something that could turn on you.
Kryssy thank you so much for your reply. Sex can seem like a bit of a taboo subject to bring up so it's so good to know that it wasn't a problem for you 😉and still isn't! How lovely. I have heard of AC, in fact a friend of mine took it to help level out her hormones a while back. It's good to know the alternatives.
Scaredycat to answer your question about Brca..earlier today I left a hysterical voicemail at the gynae- oncology dept. I got a call from the Dr who has known me from the beginning & done all of my surgeries. She told me that the information I received yesterday was completely wrong! Brca is nothing whatsoever to do with a borderline tumor,I can have HRT & the timing of surgery is my choice. She was obviously shocked at what I had been told. I am too relieved to feel angry(yet!) at the misinformation a Dr on her team gave me yesterday. She's a senior doctor as well,not one of the younger students.
Thank you for sharing your experience and offering your support.
To all of the ladies here, thank you all for replying to me. It means a lot to me.
Ok deep breaths I was 41 yrs when I was diagnosed with low grade serous ovarian cancer arising on a background of borderline cancer.
I went into surgical menopause I had hot flushes and I couldn’t have HRT as my cancer is oestrogen driven. I was prescribed some antidepressants to help with the menopause but looking back now it wasn’t really that big of a deal and now I am the other side of menopause.
If your local health authority has one you can ask for a referral to a menopause clinic.
What I don’t understand is why or what you mean as being treated like you are BRCA? Borderline and low grade cancers are not usually BRCA
Hi there....sorry to hear you had unexpected news at your appointment. Do you have an appt to go back or maybe you could visit your GP where you could discuss your anxieties and ask questions. Any surgery is very daunting and not to be taken lightly but it is positive that it is a preventative procedure and will reduce risk of O.C. If I had known this before hand, I would not have hesitated to have preventative surgery. I do know how you feel as I'm currently considering risk reducing mastectomy. It's very tough but just want my risk of breast ca significantly reducing. To give you a bit of positive news, I was pre-menopausal before my surgery (43) and since I've had my ovaries removed, I've had no side effects of the menopause whatsoever! I can't take HRt either but so far so good. Hope you will start to feel better soon as you get some answers and decide what you would like to do. Best wishes, Jo xx
Thanks for sharing Jo. It's amazing to hear that you haven't suffered physically after removal of your ovaries. Before posting on here I thought it would be simply a given that post op would be life altering & horrendous without exception.
I wish you well with your decision about a mastectomy.
I have calmed down a lot after speaking toy consultant on the phone last night. I know I have a few years to come to terms with the surgery.
Are you taking herbal supplements as HRT is not an option?
Pretty certain at this point that long-term dual combination HRT (for early menopause) contributed to my ovarian cancer 3C and since surgery, histopathology has confirmed that tumours are hormone receptive (oestrogen and progesterone positive) ie these hormones stimulate the cancer tumour. If there is any reluctance on the part of your oncologist or GP to prescribe, it may be because of the risks and I’d say it warrants further discussion about why you’re getting conflicting information. There are lots of other over the counter remedies but I definitely wouldn’t rush towards HRT or anything that stimulates oestrogen without good solid medical advice. I’m not BRCA.
You're absolutely right, I need to be fully informed about the risks of HRT. I will get the opportunity to speak toy consultant face to face as I have annual scans,bloods& checks.
I was under the impression that under the age of 50 HRT is putting back into the body what should be there anyway & the risks of HRT are post 50ish.. I'll couple this with saying I'm only beginning to learn about HRT.
Yep, that’s what I thought too. Everytime I asked about coming off, my GP said it was protecting me ie the benefits outweighed the risks but if you’ve had an early indicator I think it’s definitely best to get some clarity on what the correct treatment plan for YOU is. 😘
I was 38 when diagnosed stage 3 OC. Had the full operation and went into surgical menopause. I’ve weighed up the risks of early menopause vs HRT for my own situation. My oncologist was dead against it, but my gynaecologist put it a different way - HRT has been linked to increased risk of cancer, which for a low risk person, any additional risk might be too much for them to consider, but for an already high risk person, that small additional percentage might not mean too much. In short, he was OK with me having it.
In the end, I settled somewhere in the middle - I use a vaginal pessary which is a low-dose of oestrogen, but my other menopause symptoms are manageable to the extent that I don’t feel I need full blown HRT.
It’s definitely worth weighing up the pros and cons for yourself and seeing how you feel about it. Good luck!
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