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[grumpy2008]

I've been taking tamoxifen for about 3 years now, following breast cancer (surgery but no chemotherapy). I'd been suffering quite badly with peri-menopause symptoms prior to all this - heavy periods, pelvic pain, fuzzy head, anxiety/mild depression, mood swings, constant thrush etc.

Since taking the tamoxifen I've noticed I don't get the mood swings, or (generally) any pelvic pain. And my anxiety is less. That's the good news!

But my 'fuzzy head' ran into one long hang-over type feeling for about the first year or so of tamoxifen. Thankfully, that has slowly improved too .

My periods got lighter and lighter and stopped after about 6 months. Since then I've had two episodes of spotting and two hysteroscopies, the last one earlier this year. The endometrium is thickened, and a couple of small polyps were found, but thankfully nothing sinister. It's a worry because tamoxifen can lead to endometrial cancer (oh joy!).

I just wondered what other women taking tamoxifen might have experienced in the way of meno symptoms? It's only the past few months that I've noticed my night sweats getting worse, to the point where I can barely get comfortable (blanket on/blanket off, all windows open and so on). It's even happening in the daytime now. I assume they're hot flushes - it feels like an intense warmth and a general 'clammy' feeling. Much worse in the warm weather.

And I have various joint pains, mostly shoulders/hands/feet, which I suspect are actually the tendons rather than the actual joints. I was treated for tennis elbow about a year ago (very painful!) and had physio. Thankfully it healed after about 6 months, but the other aches and pains are similar though less intense.

Oh, and my sleep is often broken these days   

I'm hoping to swap to arimidex on my next yearly check up, which will be March 2017. Hopefully there'll be no more bleeding before then (fingers crossed!).

Is anyone else on tamoxifen/arimidex or similar?

[dazned]

Hi you have been through a lot,great news that all is clear with your scan.

Have you looked into livial as a form of hrt ? It's given to women who have had breast cancer as its gentler and more importantly it doesn't interfer/ineract with tamoxifen ! It's a type of steroid which your body breaks down and converts into estrogen,progesteron,and testosterone. However you can only have this if you are post meno or 54 which I'm not sure if you are,as it a conti regime i.e. no bleeds. Just a thought.

[Taz2]

Hi Grumpy - my friend was diagnosed with breast cancer in January 2015. She had a mastectomy, reconstruction, followed by chemo and then radiotherapy. She is on Arimidex now and has had no side effects at all. This drug is coming out well in trials too although it seems to be for post-meno women which I think you probably are if you haven't had a proper period for a couple of years. It's a shame you have to wait until next year though to try the Arimidex?

Your symptoms do sound just like hot flushes but, of course, you have no way of knowing whether these are caused by meno or the Tamoxifen.

Taz x 

[CLKD]

Tamoxifen almost killed me  [long story short] and as I hadn't felt ill during diagnosis and treatment sessions, after 3 months I stopped it.  That was in the mid-1990s and my final period was in 2002 so I can't say that the drug had any impact.

Sadly my friend, who went through similar 4 years prior to myself but continued with the drug,  was diagnosed earlier this year with womb cancer; although my Surgeon did say that he hadn't had any ladies diagnosed whilst taking it. 

How much are these symptoms affecting your Quality of Life?  Maybe discuss HRT - send an e-mail prior to your check up explaining how you are and that you want something to enable you.  Although there may be a small risk for you it is worth while bringing this into the open as I think Consultants sweep symptoms under the mat  . 

Do you keep a mood/food/symptom diary, something to chart your feelings to take to your appt.?  Also, are you able to take over the counter pain relief 4 the aches and pains?

[grumpy2008]

Thanks, everyone!

dazned, I haven't looked into HRT at all, so will bare your suggestion in mind for the future... I have a family history of cancer so the GPs have always avoided any hormonal treatments. I'm 52, and would have been switched to arimidex at my last yearly check up, if only I hadn't had a small amount of spotting within the previous 12 months! Tamoxifen messes with the hormone levels so there's no way they can tell if I'm truly post-meno or not. Sigh.

Hello Taz2! Sorry to hear about your friend, but happy she's doing well and that the arimidex is suiting her. It gives me hope  . As for the flushes, last night was much better... cooler outside, so the bedroom was like a fridge and I slept soundly. Hurrah! I'm quite a 'warm' person anyway (pale skin, flush easily) so these hot flushes have really sneaked up on me. It's supposed to be a good sign though, and means that the tamoxifen is doing it's job.

CLKD, tamoxifen doesn't suit everyone, and it sound like your body had a really bad reaction to it. I might have stopped taking it too if I didn't have the family history of breast cancer since it gave me the most awful fuzzy head for the first year or so, and was one of the reasons I gave up work. It's hard to explain, but it was really dreadful at the time. I guess if you'd stayed on the tamoxifen it's probable your periods would have stopped sooner, but (and I'm thinking about myself here) is that a true menopause? I worry that switching to a different drug will enable my periods to return. And the womb cancer risk is a big worry, which is why I report anything unusual to the GP straight away.

Thankfully I'm in a position where I can cope with the side-effects on a daily basis (take it easy on the bad days; and pain killers help). But if I had to work full time I'd find it very difficult. And I'm pretty sure I'd have been quite depressed by now, especially having dealt with my dad and his problems too. Over time though, the tamoxifen symptoms seem to be easing... or maybe I've just got used to them!!!

[CLKD]

Lovely to hear from you!  The day after I took the 1st tablet I thought I was getting flu, I had cold water feelings down from my neck to the middle of my back, like cold flushes, then the nausea became severe, so bad that I couldn't eat at all.  Also, the drug caused intense acuteness of smell: i.e. Himself had cooked a Dundee cake; it was in a tin with the lid on, in the pantry with the door shut and I could smell the spoonful of water he had added to the mix.  He cooked some pork chops and even though I was away from the house, I could smell them cooking …….. to the point of causing retching.  After 3 weeks I was on my knees  . 

How long does your Consultant expect you to continue with it?  Initially it was prescribed for 5 years 'in case it triggered oestrogen dominated tumours'.  'in case' wasn't enough to persuade me to continue feeling ill ……….

[Hurdity]

Just to add that Livial can lead to endometrial thickening (more so than other forms of HRT) so I am puzzled to hear that it is given to women after breast cancer for this reason  - ie if tamoxifen can also have the same effect?

Hurdity x

[dazned]

Im not sure what the reasoning is Hurdity,but my friend is a breast cancer nurse and if patients on tamoxifem are struggling with meno symptoms still this is what they give if the woman is post meno.