Preventative tamoxifen - anyone tried it?

[ShitShitSh1t]

Posting in chat as I didn't get any responses in health.

Is anyone using this? After going through NHS genetics to assess my breast cancer risk I have been deemed high risk and this has been suggested. I don't meet the criteria for genetic testing.

My DM passed away from breast cancer last year and it has affected other members of my family so I am terrified that it is going to happen to me. The tamoxifen sounds good in theory but the side effects sound like they could be awful. If you are taking it, what side effects do you get?

Hopeful bump

Hi OP this has been suggested to me after being assessed for BC risk. I lost my sister to it and DM 87 has it. I came out as moderate risk and do not qualify for genetic testing either.

Not sure what to do now, I don't want to be medicated unnecessarily and I have not been told the stats of how successful this protocol is. I am supposed to have been referred to another hospital in London for further discussion but not had a referral through yet.

I know there are some unpleasant side effect to Tamoxifen so I would have to way up if it was worth it. Hopefully someone will be along who has more experience-you may get more response if you ask the mods to move this to the General health forum?

Weigh up not way!

Mine (had cancer) have been lack of energy, which is fine so long as I take vitamin B and iron every day, and early peri-menopause- not so fine.

Thanks for your responses. It's a difficult decision. I was supposed to have genetic counselling but I haven't actually been able to speak to anyone at all, it's all been done by letter.

I'm considering trying to get private genetic testing, but it is very expensive.

I guess lack of energy isn't too bad. Early perimenopause, not sure. Sorry to hear you had BC @MinnieMountain

Hello I'm joining this thread.
I don't have that gene (well I only know cos my mum doesn't have it)
But I am considered at moderately increased risk, compared with the general population,because of family history
In the letter from my mum's consultant when she had it it said we can consider taking tamoxifen as preventative. I did ring my GP about it. She told me it could bring on early menopause. And spoke to my sister who said she knew people on it and it's an awful drug and she thinks it's an extreme thing to prevent something....
So I've not gone on it.....

Thanks OP. I can’t imagine what you’re going through.

It can also cause birth defects btw.

I’ve been taking it for two years and apart from pre-menopause symptoms (foggy brain, being tired, sweats, not sleeping very well) for a while and some of it still happening, no important side effects. Obviously it would be better if I didn’t have to take it, but I’ll drink anything to stay in this world for as long as I can.

Why don’t you try? You can always quit it. If it doesn’t disturb you that much it could help you stay healthy.

Thanks for the responses.

I guess I could try it and stop if I can't stand it. I just wish I could talk it over with a professional!

Have you rang your GP about this? You could ask your GP to refer you to the breast cancer clinic
They will probably know more

I took it for 5 years as a preventative and finally came off earlier this year.

I'm high risk for breast cancer due to my family history - both my mother and her sister died from breast cancer at fairly early ages. I can't be tested for the gene because they're both dead. My cousin (late aunt's daughter) also was treated for breast cancer but she was 60 at the time so not considered as increased risk factor for me (it's really only if you have close family members who got it in their 30s or 40s that indicate increased family history risk).

I was referred to the family history clinic at Barts over a decade ago (so when I was late 30s) by my GP and I get checked there each year. As part of that, they asked me if I wanted to try Tamoxifen and I said yes. Having seen my mother struggling with breast cancer (followed by the fear it would come back) for all of my teenage years and my early 20s, I was willing to try anything which might reduce my risk. Just to add, my mother had breast cancer twice (and was clear for 5 years each time) and then finally it came back as secondary cancer in her liver and that killed her within 2 weeks.

I was told that the side effects from Tamoxifen can be horrendous and a lot of people stop taking it because of them. As well as it can trigger early menopause. And they were right. The first few months were truly miserable. I felt like death all the time and I came close to giving up. Only my memories of the hell my mother went through kept me taking it. The side effects settled eventually - or I just got used to them. Everything from hair loss/thinning to irritability to weight gain to feeling nauseous (plus others). When I finally finished my 5 years, the withdrawal was also horrendous for several months. Admittedly I didn't get any guidance or support about stopping so I just went cold turkey. In hindsight, I'd advise against that.

Personally, if I was only medium risk, I wouldn't bother taking Tamoxifen. It really is an unpleasant drug. Instead I'd pay privately to get tested if at all possible (obviously in my case this wasn't an option since both my mother and aunt were dead).

@HundredMilesAnHour thank you for your very, very helpful post. My family history is similar - my mum passed away last year after it spread to her liver, lungs and brain . Her sister now has it and is being treated (hopefully she will be ok). It also killed my great grandma and her two sisters.

Those side effects sound awful, I honestly don't know if I can live with it. I'm also not sure how I will cope with mammogram anxiety every year now (I'm 40 soon and on the high risk screening program).

I think I'm going to look into private genetic testing. If I get nowhere with that, I will think again about taking Tamoxifen. Ugh, shitty disease

Yes thank you for that post, very helpful.
It sounds like you did really well staying on it. My mum's letter from her consultant says we can have yearly mammograms from 40 if we want. I was thinking that might be preferable to this tamoxifen

@ShitShitSh1t Glad I could help a little even though it's such a sad and tragic topic.

Try not to worry about the mammograms too much. You'll get better at dealing with them over time. I found them very difficult at first. Partly because I had a residual fear of hospitals after spending so much there with my Mum when I was still quite young (it got to the point that when she went for a check-up, I'd go with her and I'd throw up as soon as I walked through the hospital entrance ). But mainly because it was so emotional with the combination of sad memories, fear, plus guilt as there were women at the breast clinic who already had cancer and I felt horrible worrying when I might not have anything to worry about when they clearly did. It really did fuck me up quite badly. By contrast, the physical side is quite straightforward and I find now the appointments are super-slick and I can be in and out in less than 10 minutes total. And they don't seem to mix the annual mammogram high risk patients with the breast cancer patients anymore (not at my hospital anyway).

I found that the best way to cope was by leaving my emotions and my unhappy memories behind at the hospital. So after every annual visit, I would always stop at the hospital chapel and say a prayer for my mum and my aunt. I'd have a little cry and I'd sit there until I felt calmer. And then I'd leave that pain behind in the chapel until the next year. Sounds a bit weird but it works for me. I should add that I'm not religious at all (but my mum was).

@ShitShitSh1t - hi OP. I just wanted to say I had private genetic testing recently, and it really was the best money I’ve spent. You do need to make sure you go somewhere that has support built in.

I’d also been told increased risk due to family history - my actual results do show I have a higher risk but not nearly as high as was thought. I am now having annual mammograms.

Good luck whatever you decide - it’s a horrible disease and it’s awful having it in the background.

@HundredMilesAnHour I'm glad to hear the mammograms get easier. I remember the feeling when my mum was always at the hospital too. Such crushing anxiety every time

@Beakerandbungle do you mind sharing where you got the testing done? Was the support good?

I do want to know one way or the other just in case there is something I can do to prevent it. I have two little DDs and my heart breaks at the thought of them going through any of this.

Argh! Namechange fail! Oh well.

I had breast cancer in my thirties and am at high risk of getting it again. I'm now 50.

My consultant offered me Tamoxifen and I've decided against it. Watching this thread with interest though.

I do want to know one way or the other just in case there is something I can do to prevent it. I have two little DDs and my heart breaks at the thought of them going through any of this.

I don't have DCs and wonder if part of that decision was because it was so ingrained into me that I'd die young. I actively didn't make pension contributions for many years as well as I assumed I'd die before pension age so what was the point. But the awful experience my Mum and Aunt went through all those years ago is so different compared to now. Medical science has leapt forward and the prognosis is a million times better these days. I'm now the same age as my Mum was when she died and so far I've been cancer free. So there's so much more hope for us all these days and a good chance @ShitShitSh1t that your DDs will never have to go through what we did. I hope so. With annual checks, with medication like Tamoxifen, with advanced treatments, we're in a much better position and that will improve each year as the scientists develop more and more effective ways of fighting cancer.

@Blaziken - I’m not sure how good the support was tbh, so on that basis don’t know if I would recommend? I didn’t get any pre counselling but then I genuinely don’t think I needed it. It’s tricky as I’ve no idea how it would have been handled if it had been worse news ( so if I’d been BRAC positive say). What was interesting was when I spoke to the genetic specialist, even on my history he didn’t think it likely my risk was as high as I’d been lead to believe.

I actually went there because I’d gone for a private mammogram at a breast clinic in the same place ( and that I would recommend as I absolutely love the consultant I see).

Happy to PM you the name though if helpful.

Thanks @HundredMilesAnHour, treatment is improving all the time . The heartbreaking thing is that my mum at her original diagnosis joined a clinical trial for Letrozole as a preventative instead of taking Tamoxifen. She found out during treatment for mets that she had been in the placebo group. Tamoxifen could have saved her life.

I've had the genetic testing and fortunately I haven't inherited the gene, lots of breast cancer in the family and several close relatives with the gene.

I don't know how much it costs to have the tests privately but I can say it is wonderful to get the negative result and feel reassured that I haven't passed it on to my children/GC. I would pay for the test if I could afford it.

Hope you sort something out.

Forgot to say my main worry was ovarian cancer as it is also an increased risk in my family and screening isn't as good as for breast cancer.

I was lucky but I wanted to know either way for my children/GC as much or more than for me.

@ShitShitSh1t

Thanks *@HundredMilesAnHour*, treatment is improving all the time . The heartbreaking thing is that my mum at her original diagnosis joined a clinical trial for Letrozole as a preventative instead of taking Tamoxifen. She found out during treatment for mets that she had been in the placebo group. Tamoxifen could have saved her life.

Oh god, that's tragic. Absolutely awful. That must be devastating to know. Sending you a huge hug (which is pretty damn useless in this scenario but you know what I mean). xxx

I've just been tested by the genetics clinic. I was already on the high risk screening programme (mammogram and breast surgeon annually) but have never had tamoxifen discussed/offered.

I now have an approx 6 week wait for results and have been told that even if I don't have any of the multiple genes they test for that I will still be considered high risk and remain on annual screening.