Thanks for the update Nat and Lulu. I'm still suffering badly. The flushes have gone for now, they just disappear overnight, but they come back. I still have the mood swings, tiredness and joint pain comes and goes depending on the temperature. I have a clinic appointment in July. If I don't feel any better by then I'll ask about hormone treatments. My GP refuses to consider it.
Glad to hear it's working for you Nat. Long may it continue.
even for people with hormone positive breast cancer some hormonal treatments are still ok just not usually the traditional tablets... but much newer low dose treatments may be acceptable.
the research they are basing the current thinking is from evidence they collected over 10 years ago when they used very different types of HRT, which was much stronger and is no longer in use today, however they are still analysing this information and producing recommendations based on this.... but newer locally applied hormonal treatments may be of benefit to the menopausal symptoms with little effect on the risk of recurrence.
as a ps to the above, i saw my surgeon today as part of my six monthly checks, who unlike my onc was very willing to discuss HRT.
He said that current thinking was that for younger pre-menopausal women with TNBC it was perfectly ok to have HRT for 3-4 years. He said that it will not cause cancer, or bring my cancer back, but (isn't there always a but!) if in that timeframe i developed a new hormone positive cancer - it would, quote, act like rocket fuel. He advised against extended use of HRT for that reason.
He also said that you had to weigh up the risks involved against quality of life - that every time we walk out of our door in the morning there are risks, but we choose to accept them as part of life!
Given that i feel 100% better since I've been on HRT, I think that I'll take quality of life for now & see how i go.
Hi Jan & everyone
I decided to give HRT a go as things were getting so bad & it was the only treatment the doctors were offering - desperation in other words! After a few weeks, I noticed that my skin looks much better, my joints have stopped aching, I have lots more energy,I'm sleeping through the night & no hot flushes. Its only now that I've realised how crap I'd been feeling for the last six months. So I'm feeling relieved & anxious at the same time - anxious because I don't want to do anything to raise my cancer risk but.........!
I suppose i should be grateful (?!) that my cancer was TN so that I was able to have the choice - I know that most of you don't have any choices. I saw my onc for my six monthly, his reponse to my problems was - that'll be the chemo, its strong stuff you know. Really? I hadn't realised!
Sorry it's taken so long to respond. I don't visit the site as often these days. Usually too tired by the time I get home form work.
I'm not much help as I'm just as confused as you are. Although my symptoms are quite severe I'm really wary of taking anything. I had a contraceptive implant in my 30s and I'm not totally convinced it didn't have anything to do with my cancer. I have no logical reason to believe it did. It's just the only thing I did differently to friends the same age who haven't gone on to get breast cancer. I know.. hardly scientific.
I think you have to weigh up in your own mind the risk v advantages and hope for the best. Come back and let us know what you decide to do.
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!
Nat - the joint pain is very debilitating. I've had physio and massage which has helped a little. I did find yoga helped quite a bit, I suppose by keeping everything mobilised but unfortunately I've had an achilles injury which is exacerbated by doing yoga so I've had to stop for the time being.
It is reassuring to know that other women have the brain fog. I don't feel like myself at all and want to shake my head to get rid of it.
Does anyone else have the crushing tiredness as well?
I was put on HRT in my mid thirties because my GP assumed I was starting the menopause as my mother and sister went through the change at the same age! Although they were light I was still having periods for the next ten years. Then I was diagnosed with BC. My consultant reckoned I was one of the few whose BC had been caused by HRT as I didn't fit into any other catagories (but then how many of us do?) After the biopsy I was told the tumour was 1cm, very slow growing and hormonal. However 3 wks later when my results came back after the op was then told it had been a very aggressive 2.4cm triple neg. When I queried this they said it wasn't unheard of for hormonal tumours to suddenly turn TN! I wouldn't touch HRT with a barge pole regardless of tumour status!!
Hi I was diagnosed just under 2 years ago. I was 45 at the time, and the chemotherapy stopped my periods initially. But I've been on zoladex since after radiotherapy at the end of 2009, which is when I went through a sudden and fairly intense early menopause. Since then most of the time I've been in a fog so I can relate to other posts on here. Can't work out if the arimidex or ongoing menopause type symptoms cause the hot flushes - fortunately since docetaxol my sweat glands have switched off so I tend to just roast. I do find a Chillow really helps at night though as particularly in the summer it is really unbearable. My skin is a mess, quickly moved onto anti-aging cream, and regularly got mistaken for my 4 year old daughter's grandmother! which never happened before. I've got a list book to write things down - as I was finding I kept losing lists! Lots of things go missing all the time, and then I find them in exactly the place I was looking. I read that the TUC is starting a campaign to get menopause more recognised in the workplace
I run now, never did too much exercise before, but really worried about weight gain and it definitely helps.
There is a website http://www.minniepauz.com/ which has lots of tips and sometimes funny cartoons. There are over 35 symptoms of menopause!
One of the oncologists said in the early days before I was put on zoladex that apparently periods can come back really suddenly even after a year after treatment, and she said to always carry a tampon or something with you just in case.
I agree though that there isn't much support out there for younger women. Feel like I'm well out of synch with all my friends.
Glad you posted this. .
Elinda, your post described exactly what has been happening to me over the last year. I'm not taking Tamoxifen or anything else now so I can't blame the drugs. I've been back and forward to my GP half a dozen times in the last 6 months and had every test under the sun. All came back normal, so we concluded menopause was the culprit. I was 47 when I started chemo and have had no periods since my 2nd dose. My GP says there's nothing she can recommend as all the usual treatments and supplements are hormone based and can't be prescribed for me even though my cancer was hormone negative.
The brain fog is a real worry as it's affecting my performance at work. Management are looking for any excuse to get rid of people without paying compensation and I feel like a sitting duck! Thank God for Equality Act or I'd be on the scrapheap. Might be worth trying acupuncture. Any other tips welcome.
Thanks for getting in touch - as you say just supporting each other & understanding makes so much difference.
My main problem at the moment is the joint pain which seems to be getting worse - though i also empathise with the headaches & forgetfulness!
Hopefully after six weeks of 'thinking it over', my consultant will have some answers for me soon
Thanks for the tips - the website was useful (unlike most I've looked at). Let me know how your study day goes in May?
I do understand some of what you're going through. I am older just turned 47 and was 45 when diagnosed. I definitely wasn't menopausal at the start of treatment, with blood tests confirming that plus my mum didn't have her menopause until late fifties.
Although I'd gone past the stage of knowing I couldn't have children (for other reasons), being plunged into menopause has been a nightmare.
I haven't had a good night's sleep for months as my hot flushes are getting worse and worse. I feel very tired nearly all the time. They wanted to switch me to an aromotase-inhibitor but because of joint pain I'm having to stay on tamoxifen.
I've suddenly got a roll of fat above my stomach which I've never had before even though my weight is considerably lower than pre treatment.
Other issues have been spates of bad headaches (often when hot flushes are bad), and dreadful forgetfulness.
With so much to worry about during treatment etc, no-one tells you what to expect when being pushed into menopause. I know it's different for everyone. I also don't know what is menopuase symptoms and what is tamoxifen.
Most of the time I feel like my brain is full of fog.
I'm not sure there are any answers. I tried acupuncture and it didn't work for me although for some it does help I believe. Just supporting each other and knowing we're not alone would be good.
take care, Elinda x
Nat the study day is for doctors and nurses working with patients who may experience menopausal symptoms after cancer.... most of my patients experience menopausal symptoms before cancer as i work in screening so many have had prophylactic surgery to prevent cancer so hopefully my work will support my application to go on the course.
My periods returned after 6 months from finishing FEC Chemo at the age of 36. I then had periods iregularly for a year and a half. Now 3 years into Tamoxifen treatment my periods have stopped for the last 7 months. I guess I have been shoved into early menopause, I am now 39. Hot flushes come and go and I get irritable but have always put it down to Tamoxifen. I haven't been to the GP as I believed HRT would not be a good idea in someone with a hormone postive breast cancer. Please would you let me know what you find out?
I've been told that treatment will more than likely push me into menopause too - probably not that early (coming up to 52) but not had any signs yet.
Anecdotally from ladies I've met at the Haven, acupuncture seems to be quite helpful for some/most symptoms so I thought I'd give that a go when the need arises.
Best Wishes xx Chris xx
Yes I'm triple negstive, no BRCA gene, sorry should have said at the start! In some ways this makes things more complicated, I know if I was on hormones I definately wouldn't be able to have HRT.
Thanks for the tips, I'd be interested to hear about the study day on Menopause after Cancer - its good to know that our situation is being recognized by someone. I'll check out the website too, strange thing is that since seeing my consultant my hot flushes have almost disappeared (typical!), the joint pain is worse than ever mind you....
i am also in early menopause started following chemo but then had a hysterectomy and BSO so having major flushes
i dont take anything just carry a fan around and do lots of layering so im continually doing the whole cardie off, cardie on thing
i know some people use the chillow pillow in bed or lady care magnet for hot flushes. vagifem is a locally applied oestrogen which can help with problems of vaginal dryness as can lubrications such as sensilube and sylk. i have tramadol and co-codamol for joint pain but its not as bad now as it was after chemo.
I know you have posted in the TNBC bit but not sure if that was on purpose or if your on hormones but if your on an AI they can give really bad join problems although if your only 39 i doubt that you would be even if it was hormone positive as you may still only be in a temporary menopause...... for some women it can take up to two years for periods to return.... especially as you only finished treatment 6 months ago its still early days yet.
there is a good website called menopause matters... it has a forum and although our experiences are a little different to theirs they maybe able to offer you some support.
im hoping to go to a study day on menopause after cancer which includes an HRT update and improving services for breast cancer patients but its not till May.... however if i hear any more ill pass it on to you.
also dont know your history or if you have a BRCA gene as there is no increased risk for BC with BRCA mutations and HRT.
this which may be of interest....
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