Draft NICE guidance on using tamoxifen to try to prevent breast cancer

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This story has been all over the news this morning, so thought I’d post about it here.

Here’s the BBC story bbc.co.uk/news/health-21016553 and the first paragraph reads:

"Women in England and Wales with a strong family history of breast cancer could be offered medication on the NHS to try to prevent the disease.

"The National Institute of Health and Clinical Excellence has launched a consultation on whether tamoxifen could be given for up to five years.

“If approved later this year, the draft guidelines would be the first of their kind in the UK.”

~ ~ ~

Our clinical nurse specialist on family history issues, Jackie Harris, had this to say:

"This proposed new guidance is very good news for people with hereditary breast and a family history of breast cancer which greatly increases the risk of getting the disease.

"The guidance will potentially allow those women who are moderate and high risk breast cancer gene-carriers to take Tamoxifen or Raloxifene where appropriate for 5 years with an aim to prevent breast cancer which would be a great step forward. This has been happening in other countries but not the UK to date.

"Increased screening with mammography for longer for both women at an increased risk (moderate, high risk and BRCA carriers) and for those after a diagnosis of breast cancer who are high risk or confirmed BRCA 1 and 2 gene carriers is something that we would also welcome. Many of those affected tell us how much they would appreciate this.

"It could mean more people whose BRCA 1 and 2 mutation carrier probability risk is between 5 and 10% may have the opportunity to consider the possibility of genetic testing for the first time. And genetic testing could also be considered in those whose first degree relative who has had breast cancer (with a carrier probability of 10-20%) is unavailable for genetic testing.

Women under 40 newly diagnosed with ‘triple negative breast cancers’ could be referred to a genetic team for further assessment for the first time.

We are also pleased to see that the guidance encourages the additional use of computer calculation models alongside family history when making a risk assessment, allowing for greater accuracy and potentially better tailored treatments.

“We will be responding in detail to these proposals after full consideration. What we must ensure is that anyone offered or informed about any of these options is given the support and information they need and that support organisations like Breast Cancer Care are signposted every step of the way.”

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I may have missed the point here but I don’t understand how Tamoxifen will help. I thought that the majority of breast cancers in younger (pre-menopausal) women which are directly related to genetic factors are triple negative. Therefore what’s the point of taking Tamoxifen when any potential cancer is not fed by oestrogen anyway?

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my question is… when there are so 3 women in one family who have all developed BC due to the gene do they all get the same type… ie TN or Er+

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PuffyWhiteClouds, I don’t think it’s as simple as that. Genetic factors are more common than just BRCA1 and BRCA2. I think a lot of cancers have a genetic factor. My gynaecologist always thought I’d get BC, because my mother had it (when she was 70), and mine was 100% oestrogen-positive. I am sure I didn’t have an 80% chance of getting it, especially at a young age (I was 60, my moter was 70 when she got it). I think I might have been put on Tamoxifen in the UK. Not sure how I’d have felt, but as long as it was Tamoxifen and not aromatase inhibitors, I suppose I could have tolerated it.

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If i understand correctly a number of BRCA1 cancers are triple negative. So if that is the case they wont respond to hormone therapy…i am also confused as to how these will be handled… where does it leave our TNBC ladies?

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Hmm - I think it leaves them no worse off and no better off than they were before. Is this confusing?

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Ah, sorry - I see what you mean - until the cancer develops, no one knows if it is oestrogen-positive or not.

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Dear All, I am posting this on behalf of the Nursing Team

Hello,

We thought it might be helpful to clarify a few points here. Overall, trials have shown that women at an increased risk of developing breast cancer can reduce their risk by taking tamoxifen (if they are premenopausal) or tamoxifen or raloxifene (if they are post menopausal). Because these drugs work by blocking the effect of oestrogen on the breast tissue, you are right to say that these drugs are not though to reduce the risk of developing oestrogen receptive negative breast cancer.

Women who are BRCA carriers, particularly those who are BRCA 1, are more likely to develop oestrogen receptor negative breast cancer (and also triple negative breast cancer), but they can develop oestrogen receptor positive breast cancer so drugs such as tamoxifen or raloxifene can still offer benefit in reducing their overall risk.

And as you say, Zeppa, there are many genetic factors that affect your risk: you can have a high risk of breast cancer without being a carrier for BRCA1 or 2.

The guidance recommends that women at high or moderately increased risk should discuss the use of these drugs with their doctors and that they should be given information on the risks and benefits to using these drugs based on their individual risk.

Women at high risk of developing breast cancer (this includes women who are carriers of BRCA 1 or 2) should also have discussions with their genetic team about other risk-reducing options that include mastectomy (which reduces the risk of developing any type of breast cancer) and removal of the ovaries.

Finally, Charlotte, to answer your question, women in the same family who all carry the same gene that increases their risk of breast cancer do not necessarily all develop the same type of breast cancer. For example they do not all have to be triple negative.

I hope this makes things clearer. It’s a complicated area with different implications depending on your own situation. Please feel free to call the Helplineon 0808 800 6000 if you would like to talk about it in more detail, or you can email our Ask the nurse email service on breastcancercare.org.uk/breast-cancer-services/ask-us-your-questions/ask-nurse

Kind regards

Nursing Team