I received a letter from the hospital this morning ( well, it was addressed to my GP…) telling me I didn’t need to take Letrozole any more as I’ve completed 5 years. No phone call, no explanation, no advising of risk assessment when recent research suggests up to 10 years may be recommended. I know I should be ecstatic but some consultation would have been nice! What happens now? Are there side effects in stopping treatment? Will my cholesterol,BP and weight reduce- as they all went up on taking it! ( I may expecting miracles here…!). Can I now take menopause supplements? I suspect not as my BC was estrogen receptive. Honestly, I know the NHS does
a brilliant job but communication isn’t their strength. I’d welcome input from anyone else in a similar position. Just feel all my safely nets have been removed all at once- no Open Access, back on 3 year mammograms and now no drugs. I have requested a call and will await their response.
Hello, I know exactly how you feel. I was on tamoxifen for 11 years. My GP contacted the breast team and they decided that I no longer needed it. I was 55 and the risks outweighed the benefits.
There was no discussion, debate or consultation.
There is little, if any, research on coming off these drugs. They don’t know what the impact is or the risks of a recurrence or new primary. Based on my experience there is no follow up care, understandably all resources go into support during diagnosis and treatment. Once active treatment is complete we are set adrift, and left to deal with it on our own.
My advice would be to push them for alternatives, for an annual mammogram, be a pain, keep at them, speak to the breast care team.
That was 2years ago, in March I was diagnosed with a new primary in the same breast. I was lucky that my routine mammogram was in Feb, another year and the prognosis may have been different.
I challenged the decision, but eventually followed medical advice, I wish I had fought harder. It may not have changed anything, but at least I wouldn’t feel like I am partly responsible for my new diagnosis.
Good luck, keep fighting, challenge, push back.
I have been taking letrozole for 7 years. Is it that the treatment is not working. You need to ask the question and what is now available. Good luck x
I completely empathise with how you feel. They’ve only given me Letrozole for 3 years after 2 years Tamoxifen. I’m six months in and am going to beg them to let me stay on it for 5 years. I was diagnosed at 55 so I’ll only be 60 when it finishes currently. Then what, just wait to become stage 4 and it popping up somewhere else? It’s just terrifying. I’ve had a mastectomy but no chemo or radiotherapy. Hormone therapy is all I have.
All the best x
I was due to come off anastrozol after 7 years. New research shows it’s beneficial to stay on it for 10. I went to see my GP and explained mentally I need to stay on anastrozol for 10 years. They wrote to my oncologist and he agreed to allow me to stop on it.
Like you say it’s a safety net and there is no extra care after treatment.
Hope all goes well for you.
I was started on Letrozole in October 2021 and was originally told it would for five years but by my follow up at the end of radiotherapy in Sheffield in January 2022 ( ie 3 months later) was told recent research had shown it should be taken for 10 years and thus my treatment plan was changed to 10 years of Letrozole.
Thank you for your support - and very sorry to hear of your new struggles. I will keep you posted and wish you luck with your treatment.
The treatment is working in the sense that there has been no recurrence! My issue is that they have discontinued treatment at 5 years with absolutely no consultation with me, the patient!
That is exactly my point!
Update: so I’ve now left 3 phone messages for someone to call me back ( last Weds, Monday and today, weds). Still nothing. I will wait until tomorrow lunchtime then contact te PALS team. I think their lack of communication is very poor, given their message says they will call back by the end of the next working day. I think I’ve been patient enough…
Update 2: pleased to report that the hospital called me, finally, this week. Lovely understanding nurse who was able to explain the rather blunt letter I’d received stopping my Letrozole. It seems my CTS score puts me at ‘low risk’, although I am only just under the threshold, but this, combined with my slightly higher risk of developing osteoporosis and being 5 years clear is what led them to this decision. I’ve slept on it for a few days and an now content with the decision but it is with mixed feelings, though increasingly happy ones!
What she wasn’t able to tell me was what happens to my body/ hormones when I stop? ( I’m going to finish my supply). Seems there’s been no research on this so I’m fully expecting withdrawal effects!
I’d be very interested to hear of others’ experience of this.
Looking forwards I will remain vigilant, keep my fingers crossed and wish you all well for your continued treatments.
Dear TW142,
My thoughts are with you, breast cancer is the strangest thing, we all want to move along, however we need our comfort blanket, for me I couldn’t tolerate Letrazole so after 3.5 years decided to stop taking with the respect from my oncologist.
I do wish you, health and happiness with lots of luck going forward. Please keep posting to let’s us know how you are getting on.
With the biggest hugs Tili 
