Member
Posts: 2
Registered: ‎22-11-2018

Re: Tamoxifen for Prevention Help Please

Thanks Jo for your comment... I have alot of thinking to do!
Community Champion
Posts: 3,064
Registered: ‎08-03-2015

Re: Tamoxifen for Prevention Help Please

Hi Sharon , I'm sorry to hear how your family has been affected by this vile disease, I lost my mum too it in 2003 and I was diagnosed in 2015, so far thankfully both my sisters remain clear but have annual mammograms. We have not been tested as I was told it was highly unlikely to be genetic as mine was a rarer Tubular BC although both mum and I were oestrogen positive so took Tamoxifen.

 

As you have discovered a family history doesn't automatically mean there is a genetic fault, often it's just sheer bad luck. My sisters have not been offered Tamoxifen as a prevention but I know some to do take it for this reason. It does have side effects but often they are minor and in your shoes I would most likely take it and see how you get on. It caused me to have painful joints to the point where I had to stop after 2.5 years but not everyone suffers like this so don't let that put you off trying. 

Xx Jo 

 

 

 

Member
Posts: 2
Registered: ‎22-11-2018

Re: Tamoxifen for Prevention Help Please

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.
Member
Posts: 3
Registered: ‎15-08-2018

Re: Tamoxifen for Prevention Help Please

#The following is based on my personal research and experience as a family member of a breast cancer patient - please consult your doctors/specialists before making any decision#

 

If you have had family history of breast cancer - or other cancer - on your mother's side (aunts, grandmother etc.) you can benefit from genetic testing for the BRAC1/2 genes. If I understood right you have checked and that's not a problem, so you are trying to deal with future uncertainty given that you are of higher risk than the 'average' woman.

 

A few things to note:

Tamoxifen is very good at protecting against ER+ breast cancers only. It will not address any endometriosis problems you have, and while it works for the overwhelming majority of women, there is no way of actually _knowing_ it works as intended. The side effects are usually tolerated so given the risk/rewards it may be a good idea to discuss it with your doctors. You do not need to have a period to be on tamoxifen, that is incorrect. You need to be aware that tamoxifen increases your blood clots risks and endometrial cancer risk.

 

A more heavy handed solution to address the risk of ER+ breast cancer would be to shut down your ovaries, either medically (e.g. Zoladex injections every month) or through oophorectomy (someone mentioned hysterectomy - that would be unecessary, an oophorectomy will do). Of course, you'd need to consider whether you still plan on having children and whether you are ready to enter menopause with all it's side effects. Shutting down your ovaries in any way will trigger immediate menopausal symptoms. They do get better over time (a few months down the line), but they can be hard to tolerate initially. The benefit of medically induced menopause (i.e. zoladex injections) is that you can stop at any time and will usually return back to normal after a couple months. Again, it's an option to discuss with your doctor(s).

 

However, besides any medical treatments you need to ensure you have the right screening in place. That can be mammograms and/or ultrasounds. Depending on your breast tissue density you will be directed to have one or the other, usually annually based on current NHS protocol. You can always opt to have both, every six months - if you can afford it privately. The most conclusive screening method remains an MRI with contrast, which again you could opt to do privately if you are very concerned, once a year. Physical examination by hand is also highly recommended as often as you can - many breast cancers start as lumps you can physically feel. Most times a lump is nothing of concern, but the earlier you go check it the better you will feel.

 

You mentioned family history of breast cancer but did not mention what type - that can have substantial impact on how high the risk you are in is. It would be a very different case if the history is that of ER+ cancer compared to it being triple negative.

 

Finally, with regard to the comment about estrogen produced through body fat. That is accurate. Around 10% of estrogen is produced by body fat, which is the reason post-menopausal women are given additional medication (e..g letrozole) to reduce that part of estrogen production even further. In pre-menopausaul you will usually get tamoxifen and some ovarian suppression (e..g zoladex).

 

I hope it helps, but again, make a list of questions and speak to your doctors. Do not take no for an answer and do your own research on whatever they tell you. Ask others but make sure your information is factual from research sources.

 

 

Community Champion
Posts: 9,659
Registered: ‎16-11-2016

Re: Tamoxifen for Prevention Help Please

Magsta

 

It is very natural to have lots of questions and fears at this time, everything is new, there is a lot of strange terminology. 

 

When I was diagnosed I got myself a little notebook in which I wrote all my fears and questions down, so that when I next saw someone I had them there and would talk them through with my team, even after my op and rads, every time I thought of something I would write it down.  It enabled me to get them out of my head and on to paper so that I would not forget them.

 

As with Jo, I was told the same that we hold some oestrogen in the fat in our bodies, because I questioned why I had to have them as I am very definitely post menopausal as I was 58 at the time of diagnosis.

 

Sending you hugs and we are all here for you my dear

 

Helena xxx

Community Champion
Posts: 3,064
Registered: ‎08-03-2015

Re: Tamoxifen for Prevention Help Please

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. 

Xx Jo 

Member
Posts: 21
Registered: ‎27-03-2018

Re: Tamoxifen for Prevention Help Please

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
Member
Posts: 23
Registered: ‎07-05-2018

Re: Tamoxifen for Prevention Help Please

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. 😢
Member
Posts: 3
Registered: ‎15-02-2018

Re: Tamoxifen for Prevention Help Please

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
Member
Posts: 7
Registered: ‎02-03-2014

Re: Tamoxifen for Prevention Help Please

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. 

Member
Posts: 21
Registered: ‎27-03-2018

Re: Tamoxifen for Prevention Help Please

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
Member
Posts: 1
Registered: ‎14-09-2017

Re: Tamoxifen for Prevention Help Please

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.
Member
Posts: 3
Registered: ‎15-02-2018

Re: Tamoxifen for Prevention Help Please

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
Member
Posts: 1,475
Registered: ‎01-05-2012

Re: Tamoxifen for Prevention Help Please

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.

Member
Posts: 3
Registered: ‎15-02-2018

Tamoxifen for Prevention Help Please

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

Thank you for reading x