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?

@Beakerandbungle if you are anywhere near East Anglia then the recommendation would be good.

@HundredMilesAnHour it is heartbreaking. I'll never get over it tbh. Thanks for the hug xx

@ancientgran I'm glad to hear you got the reassurance you needed. I hope I can get it too.

@JazzTheDog really hoping you get good news. Was it NHS?

Let me start by saying that I'm so sorry for your loss .

Here's what I know of genetic counselling. It is usually only used if you have more 2 or more 1st degree relatives who have been diagnosed prior to the onset of menopause. The counsellor gathers up all information in your family tree including checking the cancer register, names of consultants involved in care, ages of onset and types of secondaries etc. After all of that you are sent for the blood test in an attempt to identify any mutant genes. As your Mother has passed and I'm assuming no-one took her profile or samples of her blood for testing then the genetic blood test is like trying to find a needle in a haystack. Oh and you are informed that the results could take 6 months.

HundredMilesAnHour relatives were in their 30's and 40's so her risk is very high. You mentioned that you're 40 next year so I'm assuming your Mother was post menopausal. Your risk will be assessed as moderate to high if other relatives are affected. You can take comfort that you aren't at the highest risk, I realise that that is little comfort. The stress of annual mammograms is not to be sniffed at. I hated going because I always knew I'd be recalled.

I've gone through all of this and the end result for me was a prophylactic bilateral mastectomy. My risk was Mother diagnosed with bilateral breast cancer at 38 - passed away 6 months later. My maternal grandmother was 42.

One thing I can suggest is giving thought to what you expect from the genetic counselling because the chances are you will have no more information than you do now. I see it as you have 4 options.
1- annual mammograms
2- tamoxifen
3- do nothing
4 - genetic counselling with the view of being left with options 1-3 at the end.

Tamoxifen was never even suggested to me but then I had my surgery 8 years old.

Thank you, I hope you do get the result we all want. Having watched my GM and aunts die from this horrible disease I am so thankful these tests are now available.

@EraOfTheGrey that is incredibly useful, thank you. If bilateral mastectomy was an option for me, I would take it in a heartbeat. I feel like a timebomb. I'm sorry that you have been through all this.

My mum was 49 at original diagnosis and I don't know if she was menopausal. I remember there being some questioning about that. I know that the clinic said they would request her medical records but I don't know if she was ever tested for the genes.

Everyone else, as far as I know has been over 60. There are also a couple of male relatives with potentially related cancers (prostate and bowel).

[quote ShitShitSh1t]@Beakerandbungle if you are anywhere near East Anglia then the recommendation would be good.

@HundredMilesAnHour it is heartbreaking. I'll never get over it tbh. Thanks for the hug xx

@ancientgran I'm glad to hear you got the reassurance you needed. I hope I can get it too.

@JazzTheDog really hoping you get good news. Was it NHS?[/quote]
Yes, NHS. I couldn't have the screening whilst my sister was alive as the protocol in my area was that she should be tested (as the one with the cancer). She always refused but now that she has passed they offered testing at my annual screening.

Also - my mum's type was a rare type - papillary breast cancer. I can't find any information on the likelihood of this being genetic.

[quote ShitShitSh1t]@EraOfTheGrey that is incredibly useful, thank you. If bilateral mastectomy was an option for me, I would take it in a heartbeat. I feel like a timebomb. I'm sorry that you have been through all this.

My mum was 49 at original diagnosis and I don't know if she was menopausal. I remember there being some questioning about that. I know that the clinic said they would request her medical records but I don't know if she was ever tested for the genes.

Everyone else, as far as I know has been over 60. There are also a couple of male relatives with potentially related cancers (prostate and bowel).[/quote]
ShitShitSh1t It might be helpful to check to see if your Mothers medical records pertaining to her cancers are available to you. If you are going to move forward then the records will be handy. If your mother was tested for genetic mutations then you would absolutely know about it. They would have told you especially if it was discovered she did have a mutations. One thing you have to know about genetic testing is that they can't find a mutation unless they have the directions. What I mean is they would require your Mothers genetic to find if you both share a mutation. If your Mother wasn't tested then they are unlikely to identify a mutation in you.

The mastectomy was the best thing I've done. Like HundredMilesAnHour I've never paid into a pension because I was told in my teens that I would probably have the same cancers as my Mother. The year I outlived all my female relatives I'd already had my mastectomy. Its not a choice for everyone but it was 100% right for me.

@ShitShitSh1t

Also - my mum's type was a rare type - papillary breast cancer. I can't find any information on the likelihood of this being genetic.

Thats why it would be useful to have her medical notes. You don't have to read them yourself ( I suggest you don't) but the genetic counsellor will find some information useful.

I have been taking tamoxifen for just under 10 years following a breast cancer diagnosis in my 30s. I have been very lucky in that my side effects have been relatively mild. No hot flushes, no weight gain, no loss of libido etc. Brain fog perhaps, but that also might be down to the chemo I had. I don't want to minimise the struggles that some women have on it but some women do fine on it.

@ShitShitSh1t - I’m not near East anglia unfortunately.

I have a first degree relative pre menopause and 3 second degree pre menopause, plus two potential related ( pancreatic) - but tamoxifen was also never offered to me. I wonder what the protocol is that causes it to be offered.

My relatives refused to provide a sample which was why I went private. I know that genetic screening ahs advanced a lot in the past few years. I had screening for the two BRAC genes and also an individual gene screening panel ( which I think is quite new). So I could be tested without a sample. I do agree though that this isn’t an all clear as such and they can only test for what they know now on the individual gene screening ( particularly without a sample). It does look for several hundred genetic mutations they associate with increased breast cancer risk. I was also quite clear in my mind I’d have a bilateral mastectomy if needed. As I mentioned I still have annual mammograms as came out a higher risk overall. One thing I did find really helpful was that I was tested in conjunction with a breast specialist - in some ways I think having him there was the most helpful bit as he was very reassuring and also helpful to talk through options and risks etc.

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)

Apart from the year I reached the same age as my mum was at her diagnosis (had a wobble or two that year!) I found it got easier for me after I’d got the first couple out of the way and I knew what to expect.

I’ve been categorised as high risk but my mum was never tested, so they won’t test me as if it’s positive, that would be forcing a diagnosis on her without her consent (her obviously needing to have the gene to pass onto me). She’s had a bilateral mastectomy and is absolutely fine with me being tested, but they still won’t do it. They’ll test her, but she’d have to go to London for it and for various reasons, that’s absolutely impossible. All other relatives with connected cancers are now dead so that rules them out too. I also have some health issues which would make the option of preventative surgery and taking various medication (including Tamoxifen) difficult and very risky so, for me, annual mammograms are the best option. It sounds odd, but I almost look forward to having it done now because when the results come back clear, I know I’m ok for a bit longer and there’s nothing nasty brewing, which does feel really good not having to think about it, if only for a very short time before it’s at the back of your mind again.

and long, healthy lives to you all. It’s bloody shit.

Thanks for your experiences all. I guess I just need to learn to live with it. I'll add mental health to the list of things that need sorting!

Long healthy lives to you all

@ShitShitSh1t @ ‘ 'll add mental health to the list of things that need sorting!’

This really made me smile ( not that I want you to have mental health problems!)

I have been taking it for two or three years because of family history and haven't noticed any side effects.