Letrozole for 5 or 10 years

[Clyde12]

I’ve just heard that there is a possibility that I might be prescribed tamoxifen for 5 yrs instead of continuing with letrozole which I’ve been on for 5 yrs. I think that in spite of letrozole side effects I’d rather stay on it than change. What do others think?

[Jennymary]

I was put on Tamoxifen in 2013, after 5yrs I went to oncology, I'd already worked out my choices would be stay on it, come off it, change to something else, I've opted to stay on it for another 5 yrs which oncology were happy with. 6 months ago I was diagnosed with osteoporosis in my spine and the rhumeatology consultant has changed me to Raloxifene which is similar to Tamoxifen but will help my spine.

[Clyde12 in reply to Jennymary]

Thank you for your reply. I too have been diagnosed with osteoporosis and atrial fibrillation.....both quite possibly from letrozole. Tried alendronic acid but got a tummy ulcer (not great with warfarin!) so at the moment I’m not on anything for osteoporosis, except adcal d3.

[Jennymary in reply to Clyde12]

HU have got a bone health forum, so might be worth following that one, you can always unfollow if no one can give you any advice

[Clyde12 in reply to Jennymary]

Thank you for your reply. I’m in the bone health forum.....it’s actually due to reading advice on osteoporosis treatments that has made me not to have treatment at the moment!

[bulldogbyrne]

I was the other way round. I was prescribed tamoxifen...then told as I was post menopausal I would now have to have letrozole. I am hoping to finish it this year I am not sure 🤔🤔 I dont remember side effects as bad as these on letrozole

[PeepBo]

I have had breast cancer twice, fortunately both primaries. For the 1st I was on tamoxifen for 2 & a half years and had the full blown menopause symptoms. I was then put on Anatrorozole & all problems disappeared. The second time ( 15 years later) I was put on Letrozole which was tolerable but not good. I have since been put on anastrozole again with much better results. The main disadvantage is the effect on bone density. Are you on Alendronic acid? If so there will be possible serious (and expensive) problems with dental care. For myself my past history was a no no for tamoxifen, but everyone is different. You will have to have a serious discussion with your oncologist . Hope this helps, but remember the edge he are different for each person. Best wishes.

[Clyde12 in reply to PeepBo]

Thanks for replying. I was on Alendronic acid but ended up with a tummy ulcer. Was then given risondrate (? Spelling) but have refused it as being on warfarin isn’t good if you might get gastric problems. My dexa score is only -2.6 so I’m not particularly concerned. I do loads of walking, Zumba and keep fit (for older people!) As you say everyone is different. Letrozole has kept the cancer away for nearly 6 yrs. Research is varied on whether letrozole is ‘better’ than tamoxifen.......just thought I’d ask the forum. Good wishes to you too.

[2020tired]

Hello Clyde12,

I took Anastrozole for five years for all five years I had awful joint pain, vaginal dryness, bone density changing year by year to show osteopenia. Emotional upsets too.

Switched to Tamoxifen after the five years on Anastrozole and my word it’s so much easier! Vaginal dryness gone! Joint pain gone! Feel much happier in myself! Bone density now normal.

Both Anastrozole and Tamoxifen do the same thing just in different ways. Good luck.

[Clyde12]

That sounds wonderful and gives me hope that changing to tamoxifen might suit. Vaginal dryness with splits is a big problem to me! Thank you for your reply.

[Aquapuss]

I had experience of three different AI drugs over the past 5 years after surgery for ductal invasive stage 2 in one breast, was offered chemo but as it only very marginally improved life chances I stuck with surgery, radio and hormone treatment. Letrozole was dreadful, first one I tried, felt I had aged 20 years as my feet hurt so much I hobbled about, bones ached, menopause symptoms went wild, also made my mood very low, was swapped after 4 months to Exemastane which was so much better- no pain, no apparent side effects other than the odd hot flush until I had been on it 18 months or so, began having sleepless nights ( literally all night) which inevitably affected my functioning- docs took me off them as soon as I mentioned it- it’s apparently an unusual side effect in some. Couldn’t do tamoxifen because of blood clotting gene I have, so have been on anastrozole since then, its now 5 years post surgery. Its the best! Feel normal, no side effects. Just my experience but hopefully useful. Good luck!

[Clyde12 in reply to Aquapuss]

Thanks ......lots to think about. My appointment is next week and they may say to stay on the letrozole though like you my feet after sitting and every morning feel like I’m walking on tiny wee pebbles....my back is achy and sore most of the time too. Anastrozole sounds great! Thanks again.

[mkmo]

I’ve had breast cancer 2X ... both primary! First time I Took Letrozole for 5 years and was so glad when that ended due to hip joint pain/discomfort the entire time! 10 years later and cancer in opposite breast! Was put on Tamoxifen and I have no side effects whatsoever! It has been a breeze! Bone scans showing all is good so far! Good luck to you!

[Clyde12 in reply to mkmo]

Thank you. I’ve to remain on letrozole at the moment. Told yesterday. Best wishes to you.

[sandylo]

I came off letrozole 4 days ago after 10 years of agony. im hoping now for some relief as im now using a walking stick as my right hip gives way. i was tried on all 3 arimidex to start with after 3 days i couldnt hold the kettle but persevered. after 9 months was put on exemerstane which wasnt much different i was on that for 18 months then letrozole for the rest of the time. Ive not slept all through the night wake every hour got a trigger finger itch all over and all joints bad and leg swelling and weight gain been an horrendous10 years. All the best to you x