What a beautiful post and and one I can really identify with. I’ve taken a photo of it and when my brain goes to the what if area I will read it again and reassure myself that I am doing the best I can for myself and my body. After a six month nightmare journey with Letrozole I’ve come off it to make sure it is that that’s causing the problems. Will I go back on it, I doubt it, it is so good to feel like me again. But I will be following up with my onco. Plus at 78 quality of life is important and has obviously influenced my decisions.
Good nutrition, exercise, yoga, meditation, tai chi, journalling, paper crafts, knitting, crochet. These are my secret weapons. Thank you for posting and to all on this journey may the road ahead be navigable and peaceful.
Hi I like your story as I have just had my lumpectomy and now waiting radiotherapy. I have to make a decision about Letrazole. So hard because of the side effects.
I’m seriously looking into the helpfulness of tamoxifen for my situation- 1 in 100 alive after 15 years. Im thinking I may have done my part with having lots of radiotherapy, but am weighing up if tamoxifen is worth it due to side effects. Been on it 3 months so far, I’m thinking if it gets in the way of coping with my job when I go back, I’m going to stop taking it. The other thing is that being her2 and hormone positive, there is a cross-linked pathway and the cells can use either receptor to grow, so the ideal would be to have hormone treatment and immunotherapy. Due to low grade, I’ve only been offered hormone therapy, so if there are cells left, they can just switch to using her2 to grow despite the tamoxifen, making it pretty pointless.
Hormone treatments are just automatically given to anyone ER+, probably as tamoxifen has been around for 40 years and is a cheap drug now that has no patent anymore. But to me its using a sledgehammer to crack a nut, I’m only moderately ER5 out of 8, so against being Her 2 +++, whats the point of putting up with missery of side-effects? Always lots to consider, I think I’ve done my due diligence.
Hi, can you tell me exactly what side effects you’ve had? I haven’t a clue how high my risk of cancer coming back is, & to be honest, after the really anxious couple of months I’ve just gone through, I don’t think taking the Tamoxifen will stop the cancer coming back either, if it’s going to it will & I seriously don’t want to put up with any side effects. I’m fit & healthy at the moment, so am going to try & take each day as it comes.
Like a lot of people say you only hear about the negatives and rarely the positives about side effects. You don’t have to stay on them if you do get any bad side effects. Whatever decision you come to will be the right one for you. Good luck with the rest of your journey.
I’d always say give tamoxifen a go, everyone is different. There’s no point in fearing what might never happen. I had worries about side-effects when first given the box at my MDT biopsy result meeting, asked if I could delay that for a bit ( while getting head around having cancer). The breast care nurse advised no longer than a couple of weeks, however, I actually started it a couple of days later as I knew after that would be the run up to ovulation when oestrogen is on the rise, so was keen not to have hormones feeding it in the month gap between biopsy and surgery. I’ve had a lot of radiotherapy since - during which time its hard to tell what symptoms are due to radio as opposed to tamoxifen.
I think you should always try it. You can’t make a balanced decision until you know.
…Also, if you have no idea of your cancer risk, you need to find out before making a decision, otherwise its not a rational decision. Start with any lymph node involvement, thats a big difference. Then there is grade and speed of proliferation.
I stopped taking Letrozole after only 9 days due to severe debilitating joint and muscle pain. I was told effects would wear off in a few weeks but 14 weeks on and I am still crippled with pain and fatigue. Oncologists is pressing me to take tamoxifen but share all concerns I have read here about how our symptoms are Often dismissed as “discomfort” by oncologists.
I am glad it works for most of you, but for those of us affected by this pain this is truly life diminishing. I do not feel I was given enough information up front and whilst we all must make our own choices I urge you all to get as much info as possible.
I’m sorry that you are still suffering these side effects even after having stopped taking it and hope that you get some improvement. Personally I noticed a difference very quickly once I came off though I’m not sure that my knees have ever been the same . Maybe you should go back to your GP just to make sure there isn’t another cause.
Hi @MistyK . I met a woman who had refused AIs in favour of homeopathy and who was convinced her medical team had washed their hands of her and refused to give her further attention or treatment. I don’t know if she was right, or not.
I chose not to take any drugs after my lumpectomy. But I am 76 and saw a dimple in my breast having seen a posting on Facebook re dimples and go see doctor. And so my lump was removed very quickly and it was very small and nothing had gone into my lymph nodes. So I chose to take nothing.
Welcome to the forum, wishing you both well going forward, as we all know this can be a difficult decision to make, but feel sure you have both giving this a lot of thought and made the right choice.
