Hello
I’m hoping someone can guide or advise me on a decision .
I am 37 years old with a strong family history of Breast Cancer
My mother has had BC 3 times when ages 36, 46 and 56
My grandmother died from breast cancer
My great grandmother died from Breast Cancer
My mother’s does not have the BRCA 1 or 2 gene as she had the genetics testing
I have had a mamaogram recently which was all clear , my consultant says I need to have yearly mammograms from age 40 but also suggest to me to go on Tamoxifen for prevention due to the staying family history . I have an appointment with her next week to discuss this .
I am concerned about the side effects of the drug and just wondered if anyone has been in the same situation as me , as the side effects do not sound to good
I have 2 children ages 2 & 4 And have servers endometriosis also
I would suggest to you that you give it a try. Side effects vary enormously from one person to the next. Some sail through without any, some get them so severe they give up taking it. Most muddle through somewhere in between. Remember that people only usually post on forums when they are having problems, so you are getting a skewed view from that. Those who have no problems don’t tend to report it. You can always give up if you don’t like it. If you get side effects you don’t like, then you will have to weigh up those against the risk of getting breast cancer - not any easy thing to do I know.
Hi roadrunner
Thank you so much for for your reply
It’s so true about people only posting the bad side effects , I suppose the ones who get on ok have no need to report anything
Xx
Hi Olive tree, I’m answering your query because I struggled to find advice about tamoxifen when I was starting out on it. I’ve been on it for five months. Yes of course there are side effects as with many drugs and to be honest everyone reacts differently. I take it as I don’t want cancer in ANY form back. I had no chemo which isn’t up for discussion as everyone is different! and I have also struggled to find other stories of people who looked at the facts and didn’t opt for this, I need to meet more people like me! ‘I have never found anyone on the ‘someone like me’ option on the site. I have altering my lifestyle, diet and continuing with Tamoxifen, it is my life line.
Your predicament is very different to mine. I had no history in the family and you do, I’ve obviously had it and you as yet have not. I take it as it is my extra form of ‘control’ coinciding with my diet and lifestyle change.
Everyone is different I can’t stress this enough. I was 36. Vegetarian. Hadn’t drunk alcohol for ten years until two years ago, but had begun to become overweight, which is now GOING DOWN! Whooo.
There are so many theories as to why it develops, and people always say ‘If I was in your boat…’ - but they’re not, and no one can ever understand your decisions until they’re in your ‘boat’ and when they are, hey might make different choices to those they think they would make. If you’re asking is the Tamoxifen worth it, then I feel yes, it is. Any method other than Chemo which I didn’t have I consider worth the effort (for me) you’re to make up your own mind and it must be yours, let no one else tell you what ‘they’ feel you ‘should’ do.
Personally, constipation, aching muscles and joints and headaches were my side effects and more recently the odd hot flush. They are in no way so bad that I wouldn’t take it… I’m an incredibly anxious person and have suffered with mental health anxieties for years so to have the operation, radiotherapy and to tollerate those side effects, knowing I’ll be on the drug for ten years (and my decision not to have children is now permanent owing to the drug) is a miracle. If I can do it, I’m sure you can. Love to you.
I started tamoxifen aged 48…a bit older than you…all I would say is maybe give it a try…it’s better to prevent I would say as much as is possible. Side effects for me haven’t been too bad…hot flushes…a bit of aching but that’s about it. Some people tolerate it more than others…why not give it a try. You have the option of stopping if side effects are bad.
Jane
Yes the side effects are there as with any drug, but having gone through breast cancer myself and taking tamoxifen as a preventative for it returning I would recommend it. It’s obviously not an ideal scenario to be in, because noone wants to take a drug they don’t need to, but in reality the side effects arent so bad that I wouldnt want to take it.
Hot flushes - they settle down after a while and you tend to find a brand that works for you eventually. I know I cant take the Mylan brand for example.
Periods - mine have got heavier and they last longer, but my cycle also got a lot longer too. Not all women have this though.
Ovarian Cysts - I am definitely someone who suffers with these continuously on tamoxifen, but not everyone does.
They are about the only side effects I get. And in truth, regardless, I still think it’s worth taking.
Thank you for your replies everyone .
I had an appointment with a consultant who wanted to prescribe the Tamoxifen but couldn’t as I don’t have periods due to being on the mini pill ( apparently you have to have periods to take tamoxifen ) She has wrote to my Gynaecologist consultant to see what I can do about this as I have servere endometriosis periods for me are so bad . Hopefully they will come up with a solution together . I hope you can all see my reply as I’m new to This forum I’m not sure how it works .
I thank you all for your informative replies to my post and wish you all health and happiness , thanks for listening and all of your advise xx
Ladies. Does anyone know. With ostrogen positive type… are the ovaries at risk? Is a hysterectomy an option? I’ve just been diagnosed last Friday. And my mind is all over the place. Can’t think straight and full of questions and worries. ?
I can only talk about me. I had oestrogen +…i had 3 areas so had mastectomy. I have had two years of hormone therepy…zolodex to stop ovaries working and stop production of oestrogen …hope that helps…good luck x
Magsta I asked about having a hysterectomy but my Oncologist said there was no point as oestrogen is in our fat as well so can’t be eliminated by removing our ovaries plus I was 46 at diagnosis and my levels would naturally be reducing, they do tend to do more to suppress oestrogen in younger ladies who are diagnosed.
Hi there.
I am 35 years old and in the same situation. My mum died from breast cancer 13 years ago and my sister has terminal breast cancer. My sister does not have the BRCA gene. Taking tamoxifen has been suggested to me also, but I am very scared about the side effects. I start having yearly mamograms in January.