Hi Ladies
I completed my treatment in September last year, as a result of which I was pushed into an early menopause. So at the grand old age of 39, I am dealing with constant hot flushes and night sweats, dizzy spells and joint pain, as well as the knowledge that I will be childless.
I know I’m not the only person going through this, but my point is that there seems to be little or no support or information for us.
My GP said he wasn’t prepared to treat me because of the cancer risk of most of the drugs used (fair enough), so referred me to the Menopause clinic at my hospital - which is handily located right beside Ante-natal! Like I need reminding of my situation. The other patients are 10-15 years older than me & i feel isolated from them, my friends don’t really understand the issues I’m facing, there are no help groups that I have found that deal with cancer patients facing this & I’ve even drawn a near blank on the web.The doctors are currently debating whether I could take HRT, but the information I’ve looked at is so confusing & contradictory I don’t know if i can make an informed decision.
I’d be really interested in hearing from you if you are in a similar position - have you found anything/anyone who could provide support? If you’re struggling like me, perhaps we could join together to form our own support group & share knowledge?
Thanks for listening
Hi Nat don’t know way they said but I finished treatment in august similar to you periods stopped after 2 nd chemotherapy I am older 45 but was told they may or may not come back but at beginning of jan I got a period very light but still have a merina coil in it lasted 5 weeks and iv got signs today that it might b starting again. So it could come bac yet. If it’s happens to me it could you Hope things go as you want. We’ve all been thru so much xx rozita
I’m in my 20s and kind of in a similar position, although I don’t consider myself to be “early menopause”!!
I have secondaries, so hormonal treatment (Zoladex and Arimidex) is the “light” treatment compare to the chemo I had. Yes, I have hot flushes, stiff joints (no night sweats and dizziness yet), and yes, I’m childless, too.
I find it hard that I can do less than before. I keep telling my friends that I feel like my mum!! I keep telling myself my body is a lot older than my actual age. One day, when I come off those hormonal treatment because they’ve stopped working, I won’t be “menopause” any more, but I hope that day never come.
I’ve read lots of contradicting info about HRT as well, but I’m not prepared to take risks. If I can bear the se, which I can at the mo, I’ll just go without.
Love the idea of forming our own support group. Count me in. xx
Also hitting premature menopause, at the age of 38.
I’ve been on tamoxifen for a month and so far am only having a few hot flushes each day, and I have noticed that my knees are hurting at night and first thing in themorning I feel about 150, so not sure if that’s the beginning of joint problems. As it’s just the beginning of the SEs for me, I haven’t sought any advice or treatment yet, but I don’t have any confidence that my onc will offer any if i need it! So far he’s been sympathetic to my complaints about SEs from chemo but shrugs as if to say ‘what do you expect, you’ve got cancer!’ Or maybe that’s what’s in my head…
I know I’m very lucky to have had two children between diagnosis and recurrence. Six years ago, at diagnosis, I decided if I was pushed into menopause by treatment (I didn’t have any in the end because I was desperate to have a family) I would like to adopt, but my partner was absolutely against it. Is it something you could or would consider?
It’s so bloody hard to age so quickly and so suddenly. Very happy to join an online support group, even just to keep up with an ‘early menopause’ thread.
xxx Jane
i’m 37 and similar situation with hot flushes, no periods etc. I finished chemo in august and am
on tamoxifen. I am positive there is a support group already for early menopause, i’m sure i have read about it at some stage. Will have a look. Great idea for a thread, cant talk about the symptoms with anyone really, they dont get it.
Found it, its called the daisy network and is a charity, they say…
“Premature menopause (also called premature ovarian failure and early menopause) is defined as the onset of menopause before the age of 45 and affects one per cent of women. There are many possible causes for premature menopause including auto-immune diseases, cancer treatment and family history, but for women the causes can remain unknown.”
I am sure you are going to be plaqued with responces to this. Like you have found the medical profession, especially GPs do not seem to acknowledge or want to acknowledge the menopausal side effect of having breast cancer treatment. I have brought my horrendous hot flushes, night sweats (which are rendering me almost unable to sleep at all), aching knees, no interest is sex whatsoever, to the attention of my consultant and GP. The former has refered to them as ‘my niggles’ and the later tells me that other women she sees who are suffering as badly as me, she put on HRT. Great thanks for that, I can’t go on that. In between the two I also get the feeling that they feel I should be greatful that I am still alive, which I am, but would like some help through this, like you.
I finished chemo in Sept 2009. Periods stopped, on tamoxifen, then got a period 10 months later.So yours could still too. They put me on Zolodex, came off this in Jan 2011. Am hoping periods will return as still only 32, but consultant has warned they may not.
Rant over, I will look forward to seeing this thread develop, and look at the links suggested.
Hi Ladies
great to hear from you all, its great to be able to discuss this - why are people so quick to sympathise & help when you’re having cancer treatment, but ‘don’t get this’ at all??
you’re so right Boo, everyone thinks we should just be grateful to be alive, which is completely missing the point.
but in the spirit of our new support group, here’s what I’ve tried so far:
on getting the symptoms, I went to my BCN who told me to go to my GP who told me to go to the menopause clinic, who told me to go to my oncologist - if my onc tells me to go to my GP I may scream!
I’ve been advised to take Evening Primrose Oil ‘but it dosn’t do anything’(quote) & glucosome ‘but it takes a long time to take effect & oh yes it dosn’t do anything’
I’ve got a chillow which feels like sleeping on a bath matt, and gurgles when I turn over.
I have a meditation tape to stop me feeling stressed and anxious at night - problem is I now feel stressed and anxious if I don’t listen to it every night.
Has anyone tried dropping a magnet down their knickers? Does it work or does it ‘not do anything’?!
Anything else we can do - how about standing our heads & singing Rule Brittania?
Here’s to a good nights sleep for us all (fat chance) & to feeling 150
Thanks for starting this thread Nat. I’m 41, so a bit older, but feel cheated because menopuase has come 10 years early. I had hoped we would have another child and I am very sad that this will not happen.
I had my last period in January and have been suffering hot flushes but as I have just finished chemo I wasn’t sure whether it was a side effect or a menopause symptom. I think probably the latter. I did go on a younger women’s day run by BCC and there was some good advice re menopause but I can’t remember any of it.
I will mention this to the oncologist as it would be helpful to get a referral to a menopause clinic sooner rather than later. It is really unfortunate that the insensitive bods decided to palce clinic by ante antal. Bad planning methinks.
Best wishes to all,
Sue
I wrote a long post in reply a few days ago but it seems to have disappeared into cyber space. I know the evidence is very mixed in relation to HRT but generally if you still have your ovaries they would be much less keen to give it however if your ovaries are removed then HRT doesn’t seem to increase the risk of bc in those who have gene mutations but not sure about non genetic ladies. But the findings were generally that no ovaries plus HRT was lower risk than keeping ovaries with no HRT. Would def discuss it with your Onc or surgeon.
However you are only 6 months post Chemo and for many women Chemo induced menopause is only temporary but can take up to 2 years to return so if your really keen to have children personally I would wait and see if your periods do return further down the line. I was put into menopause by the Chemo… Was planning to try for a baby just after I was diagnosed… However 9 months after last Chemo I had 1 period this was just a few weeks before going for a hysterectomy as I since found out I have brca 2 gene so high risk of ovarian cancer. Had I not had the gene though it was a really good sign… Don’t get pushed into treatment your not happy about.
Just remembered something else too. Vagifem is pessary tablet for local application and help with menopausal symptoms only contains a very small amount of hormones and frequently given to Bc patients with hormone positive breast cancer. As your Onc about this.
And try menopause matters website. Mostly didnt have cancer but there is some good info on there and people experiences of chillier and lady care.
I’m hoping to go on study day on menopause after cancer but it’s not until may but I’ll let you know if I find anything else before then.
Thanks Lulu - I feel better prepared before my next meeting with the consultant now. Had no idea there were different types of HRT! This whole area is so complex its very hard to make considered decisions. Anyway, I’ll see what the docs have to say in a few weeks & report back.
Isn’t it tomorrow that the website goes offline? Guess we’ll have to cope without the forum for a while!
Hi Ladies
I went back to see my consultant today, after having six weeks to think it over & speak to my oncologist she has recommended that i start taking Tibolone - which is a synthetic form of HRT.
I’m not happy about taking any form of HRT but she basically said treatment wise it was HRT or nothing & I can’t carry on the way I am.
My joints has got so bad recently that my work is being affected. I’ve looked up Tibolone & I don’t like what i see! Has anyone any experience of taking it after TNBC cancer?
I guess i have to trust my doctors & give it a go,as usual all the info on the web is very contradictory about whether it raises my risk of the BC returning, but I’m only 40 so surely my body should be getting oestrogen?
All comments welcome!
I’ve started another thread - back out of menopause at 47. The thing is I finished chemo 18 months ago and it’s taken that long for my ovaries to kick in again. My gynaecologist said up to 5 years.
If you do have any HRT it may be worth keeping a close check on your oestrogen levels in case you suddenly come out of menopause. Mine happened very quickly - I was in definite menopause in December and definitely out of it in March. Elinda x
Hi Elinda
It must have been a shock for your ovaries to kickstart after all that time? I wish mine would - it would solve an awful lot of problems!
I’m seeing my onc in a few weeks, so I’ll ask him about monitoring oestrogen levels
Hi, I had my last chemo on 31st March, and it has now been over 5 weeks since my last period. I haven’t started having hot flushes or anything yet, but seem to be having mood swings, but don’t know if this is just due to the situation rather than early menopause. How soon after your periods stopped did the symptoms start? When do they count it as early menopause and think about doing something about it?
I am 35 now (34 when diagnosed), and my mum went through early menopause at 36, and my aunt at 38 (not chemo related, just naturally), so I was half expecting it to happen. Fortunately I had the chance to freeze some eggs before chemo. When I discussed it with them, they said that one option if it did happen would be to use donor eggs.
Hi Jen
It was about two months before the symptoms started i think - but i was on taxidere so can’t be sure, they didn’t get really bad until i finished chemo - almost as if my body knew i had other things to worry about! I went to my GP in Jan so by the time i start the HRT it will be about a year since my last period. My GP was happy to do the test, but a friend of mine was told that she would have to wait two years before they would even consider treating her so i guess every hospital is different?
given your family history, why don’t you talk to your GP or onc team? I’m sure they would be sympathetic & you’d know where you stand.
Well done for freezing some eggs, I didn’t my head was so full at the time & it wasn’t mentioned by my team.
I have been discharged from the chemo team, but I’m hoping to contact my breast care nurse, as she has been really supportive in the past.
With regards to the egg freezing, my team didn’t raise it, I asked about it myself, and the first impression wasn’t very positive, they said that if I didn’t have a partner it was unlikely they would do it. but the fertility consultant was really good.
I think it is unfair that it isn’t standard practise to raise the subject of early menopause until it is too late. Some people don’t find out until the first chemo appointment when there then isn’t time to do anything. I wonder how many people it actually happens to.