I have been on letrozole for 8 years 7 months . I am 71, my questions are … can I safely stop for 2 months to see how i feel ? What happens side effect wise if i restart? …would taking every other day be a start to giving up ?
I have never been told how long to take them. There was no node involvement, 4cm tumour, had chemo , radiotherapy and zolendronic acid , last infusion 3 years ago.
I am no longer under any consultant or breast cancer care, just GP .
I have osteopaenia and am starting to worry about the long term side effects …bones, heart, brain fog etc .
I recently broke my fibula above my ankle .
I would love to feel brighter and more energetic and lose the roll of belly fat which i dont feel is due to diet or lack of exercise.
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Hi - I see the nurse at BCN is going to respond to your questions, so I’ll just address the belly fat and osteopaenia. I’m 73 and have been on Anastrozole for 3 years. I had lobular BC which is usually highly oestrogen receptive. I assume I’ll be on some sort of endocrine therapy for the rest of my life. I am not overweight but my belly is fat and nothing I’ve tried works completely. Counting calories on the NHS Weight loss app works up to a point, and I walk, swim and do Pilates to stay fit mentally and physically. I too have osteopaenia but I have 6 monthly Denosumab injections and my last Dexxa scan was normal. I’ll prob be on that for the rest of my life too. I have some days when I’m tired, I have some night sweats too. After 8 years I may get fed up with it all but for now it’s bearable. There is a risk/benefit to any intervention and the decision is very personal. The nurse will, I am sure, help you to work out the risk of stopping Letrazole so you can decide. Good luck 
Thank you so much for your reply 
.
Hi there
Just a brief history to compare .
My WLE was Dec 2018 aged 52. I had letrozole for a year combined with zolodex as hadn’t gone through menopause. Horrendous. Such weak ankles and low mood, lack of sex drive etc etc.
After a year the onco allows me to change yo just Tamoxifen.
Now aged 57 I am through menopause so change of meds back to Letrozole. Said I’d give it another go. 6 months later couldn’t bear it, could hardly walk. So on Extamasene ( excuse spelling!) More bearable. But here’s the light for you……… latest research says no advantage over 7 years to 10. So originally they said 10 years but now I can come off it after 7 (1.5 years left!!)
So I hope this gives you some reassurance, maybe you could quote that to GP if no longer under an Onco.
The other thing they started me on after menopause together with hormone treatment was Adcal D3. Are you on a calcium tablet? If not I think you should def ask for it. Take care x
Thank you.
I did the predict tool thingy…I believe with the info I put in it showed that it made 0 per cent difference to me to carry on letrozole.
I am going to dig out my old oncologist letters to ensure i put in the correct details and do it again.
If that is the case, as you say it makes me feel better with my decision.
Yes, I have been on adcal all the time .
Hi Happyboobs2,
Thank you for posting. It is understandable that you have questions about continuing with your letrozole when you have been taking it for over 8 years and ask if you can safely stop for 2 months.
Clinical trials have demonstrated that some women who have been through the menopause may benefit from taking an aromatase inhibitor (AI) for up to 10 years. Trial results have shown that letrozole and anastrozole may reduce the risk of breast cancer coming back (recurrence) or a new cancer developing in the other breast, if hormone therapy is taken longer than five years. Current guidelines recommend that extended therapy with an aromatase inhibitor can be considered for, postmenopausal women with breast cancer depending on their risk of disease.
Extending hormone therapy for breast cancer beyond five years is appropriate for some women, but as @Mumbakes says the optimal duration is unclear. The benefit for you will depend on the features of your individual cancer and is important to balance your benefit against any side effects that you are experiencing.
As @The_Wink says, balancing the risks and benefits of any treatment is a personal decision, so it is important to have fully informed discussion with your GP. You can discuss your concerns about bone health. If you are not on vitamin D or calcium supplements already, as @Mumbakes suggests, do ask about this. You can also let them know about the brain fog, heart health and other side effects of letrozole you are experiencing and discuss about the possible benefits and disadvantages for continuing with treatment in your situation.
I wonder if your original treatment team is aware you have osteopenia and have experienced a recent fracture. If not, you can also ask your GP to refer you to a breast oncologist to discuss the benefits of continuing hormone treatment for a further 2 years measured against your current quality of life.
You can also ask about stopping for 2 months to see how you feel and about the side effects if you were to restart. They may first suggest switching to an alternative hormone therapy. It is not usually recommended to reduce your dose or to take letrozole on alternate days before stopping. The benefit of taking a reduced dose is unclear.
Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to more support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks. The number is 0808 800 6000, (Relay UK -prefix 18001).
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Katy
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