Tamoxifen - to take or not take? (I'm new here)

[Alice115]

Hello

I'm 41 and was diagnosed with bilateral breast cancer in May and have just had bilateral lumpectomies and sentinel node biopsy with just two lymph nodes removed from each armpit. I will be starting radiotherapy shortly.

I have been advised to start taking Tamoxifen, but told it is my choice whether to take it or not. The predict tool cannot be used accurately for me, as it assumes one breast cancer, I have cancer in both breasts.

Can anyone please give me any advice or their experiences of tamoxifen, and would you recommend starting immediately or letting my body heal from surgery and radiotherapy before starting?

I would really appreciate any thoughts you have on this to help me make a decision.

Thanks in advance Alice

[trix70]

Hi Alice, I see you have not had any replies, I think that's because you are on the wrong forum.

This is all ovarian cancer and yours is breast. I think if you search again on Healthunlocked you will find the breast cancer one, and then hopefully gets loads of replies with experiences of tamoxifen.

Wishing you all the best, Trix

[Alice115 in reply to trix70]

Hi Trix, thanks, I thought Penny Brohn was all cancers, but not to worry I've had a couple of replies and I've also posted on Breast Cancer Haven. Thanks for looking out for me and all the best to you.

[trix70 in reply to Alice115]

H, yes I think Penny Brohn is all cancers, whoops did not see it was a pub post.

[trix70 in reply to trix70]

Should read pb post.

[4Michele11]

Hello Alice115

I was also diagnosed with bilateral breast cancer in November 2015 and had a bilateral lumpectomy and sentinel node biopsy and with just two lymph nodes removed from one armpit.

I had a course of radiotherapy and in that time started to take tamoxifen. I have had no adverse reactions to taking them apart from the occassional hot flush. My periods have stopped but I am slightly older than you at 51 years.

Tamoxifen helps with the oestrogen level in your body. I'm on it now and it certainly hasn't done me any harm.

Take care.

[Alice115 in reply to 4Michele11]

Hello Michele, wow are stories are so similar, I have not met anyone else who has been diagnosed with bilateral breast cancer, I thought having cancer in one breast was bad enough, before finding out about the other breast three weeks later. Anyhow moving forward now, I'm through surgery and about to start radiotherapy. The forums have been great and given me lots to think about, but I still can't decided whether to start taking it now or after radiotherapy. Do you think you would have know if the side effects were from radiotherapy or Tamoxifen having done both at the same time?

Good to hear you haven't had any adverse reactions, best of luck to you.

[4Michele11 in reply to Alice115]

Hi Alice

Great to hear from you. As I mentioned in my previous message I had already started taking Tamoxifen before my radiotherapy. You certainly would know the different side effects between radiotherapy and taking Tamoxifen. While having radiotherapy I was fine, did get a little tired though but after treatment my skin started to get a sunburn feeling and skin began to peel.

Now after all that I am feeling the best i've ever felt and my skin has now cleared up.

I do hope that helps and please keep in touch.

Michele

[Mrs1971 in reply to 4Michele11]

Please check if you're not a lady who's had a hysterectomy and have been on these tamoxifen tablets for more than five years. I wish you continued good health.

[joan52]

I had breast cancer in one breast 15years ago. I had a mastectomy followed by chemotherapy then radiotherapy. I was then prescribed tamoxifen for 5years. The side affects for me were hot sweats due to all treatment bringing me early menopause. Gained a little weight. I have no regrets taking tamoxifen. I would definitely recommend taking.

I

[Alice115 in reply to joan52]

Hi Joan, thanks for your reply, and your positive recommendation, well done being 15 years on.

[Sophieb]

Dear Alice,

I see you have had lots of responses, but also wanted to let you know you we have a wide range of support here at Penny Brohn UK including one to one sessions with a doctor where you could talk about your questions regarding Tamoxifen.

Our Doctors are all GPs with a wide range of experience of working with cancer treatments and their side effects.

If you would like to find out more about how to access our services, please go to our website pennybrohn.org.uk or call our Helpline on 0303 3000 118.

sending all good wishes to you

Sophie

[Alice115 in reply to Sophieb]

Hello Sophie, thank you for your reply, you're right I had a lot of replies, this forum is so useful and has some great people on it who are wiling to share their experiences. I'm booked on the Approach course at Penny Brohn, so hope to speak to one of your GPs on this course. Thanks for the info Alice

[Sophieb]

That is good to hear. Hope you find the Approach course useful and I may even see you when you're in the building. Best wishes

Sophie

[Mrs1971]

I have just read this and had to say something. My mam had her breast removed due to aggressive cancer and was given tamoxifen. She was on them for several years when one day she was ta her hairdressers when a nurse who she knew came in. After chit chat she told mam how lucky she was to have had a hysterectomy as they were finding links between long term use of tamoxifen and uterine and cervical cancers. My mam had not had a hysterectomy and did indeed go on to discover the nagging pain and discomfort she had was cancer. So please,before taking these or if you are already,check with your cancer specialist and ask. The nurse told my mam the recommended time limit for women without a hysterectomy to be on those pills was 5 yrs. I wish we'd been told sooner. She would still have taken them as they worked for the breast cancer,just not for as long as she did 😞. I don't mean to scare anyone I just wish someone had told me and my mam this.

[Hidden in reply to Mrs1971]

I too have had changes to my womb lining due to tamoxifen, and may need further treatment.

[Sandypatsy]

I had 5 years of Tamoxifen after having both breasts amputated. It's a belt and braces drug and it is proven to help negate the breast cancer cells.

Go ahead and take it, after all you having to lose.

Good luck.

[Hidden]

Hi my mum has had breast cancer 7 times now and is some still hanging on in there, she has been on tamoxifen for many years but insists on the original which is still availabl in Ireland,( your prescriptions are valid over there)

As she does a lot of reading a found the generic one are not as good,also please look a a site called cancer active by Chris woolams most up today site out there,

Best of luck

Andy