Low benefits to taking endocrine therapies


I had a lumpectomy with 50cms grade 3 DCIS and 2 mm invasive. Stage 1. Oestrogen and progesterone positive. Hadn’t spread to the lymph so I had radiotherapy and am now considering whether to take Tamoxifen or Letrozole or neither.

I have been told the benefits of taking the meds in my case would be 0.1-0.3 after 5 years and 0.5-0.7 after 10 years.

Has anyone else been in a similar situation and what decision did you take?

Thank you.

You will get a huge varience in your reply to this. It is really a personal choice. For me I wanted to do everything I could to reduce the risks, however small. I took tamoxifen for 5 years, with no side effects. I am here many years later, with no regrets. Best wishes with you choice, it is really hard.

Have your treatment team given any recommendations ? My surgeon actually told me and wrote in a letter to my GP that if I didn’t get on with endocrine therapy it would be reasonable for me to stop . I tried for 5 months and then stopped due to side effects - but many women don’t get those at all or only at a low level that they feel they can manage.

If you get on with your BCN team then you could make an appointment with them to discuss it .

My family and personal medical history also played a part in me stopping as did my DEXA scan result which showed secondary osteoporosis . Osteoporosis has been a problem for all the women on my Mum’s side of the family so this was a concern for me.

There are a lot of things to weigh up - your recurrence risk is really low on the score but if it is really 50 cm ( did you mean mm? ) that’s a large area of DCIS . Also I think you may be younger than me so potentially more to lose .

I’m glad that I at least tried it . Wishing you well whatever you decide . Xx

Hi @rosab first off I think you must mean 50mm as 50 cm is over a foot and a half! When you say you’ve been told, who have you been told by?

To answer your direct question, I had a 14mm Grade 1 (as opposed to your Grade 3) Er+ PR+ HER2- tumour which was also Stage 1 so no lymph node involvement and no LVI. I had surgery, 5 days of rads and my oncologist was keen for me to take Letrozole (an AI) for 5 years despite my Predict scores showing a survival benefit of 0.4% over 5 years, 0.9% over 10 years and 1.2% over 15 years. That is because of my Er+ score of 8/8 and also because they follow the NICE recommendations.

I did take it for 15 months but am on a break at the moment sanctioned by the breast cancer nurse. She agrees, having looked at my Predict and NPI scores (<2.4), that if I chose to give it up completely, she would support me in that. As it is, the jury is still out for me. The reason for that is that I have congenitally high cholesterol as have all my family so I have been taking 40mg of atorvastatin for 12 years. I have far worse side effects from the statin than I do the AI but if I was to reduce the statin or give up completely AND take Letrozole, my already high cholesterol could become a direct threat to my heart health as AIs can cause cholesterol and blood pressure to increase. So we are working through it at the moment. If it was just the Letrozole, I would probably continue with it for the remainder of the 5 years as my side effects are manageable and breast cancer is a tricky blighter and whilst it looks like nothing has spread in me, it just takes one microscopic cell to have escaped to cause big issues down the line. At other times I do think I’d give it up and take my chances. I was diagnosed at 66 am now 68 but have a family history of stroke and vascular dementia caused by blood circulation issues so it’s not straight forward.

You will get some forthright opinion on this but ultimately only you can decide but, as I am having to do, look at it in the round and make sure you have considered every angle before taking the decision.

Thank you.

Thanks Tigress and good luck!

Thanks. I mean 50mm! Appreciate your thoughts. I’m seeing the oncology consultant next week. He said when we last met that it’s entirely up to me as the benefit of taking Tamoxifen or Letrozole are very low.

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Thanks for your thoughts.

If they think it’s reasonable not to take it get them to put it in writing just in case you decide not to take it or to stop . I recently had a trip abroad and decided to get travel insurance and one of the questions I was asked in relation to BC was if I had refused any treatment and I felt justified in saying no as my surgical Consultant had documented that it would be reasonable for me to stop it. Xx

That’s an interesting take on it, thank you!

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Interesting indeed; thanks for the heads-up, Joanne.

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I was so worried about taking letrozole due to everything I’d heard about it but I’m a year in now and absolutely fine on it.

Everyone is different, for me I’m prepared to do whatever to prevent a reoccurrence however small that would be. Of course my opinion would change should I have suffered any side effects.

There’s no harm in trying it to see how you get on.

Big hugs to you x