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.
Breast cancer screening rates have increased in unison with the introduction of Tamoxifen and AI treatment. Public health campaigns and access to early Breast cancer detection have contributed to the outcomes. It would be interesting to see these historical statistics side by side.
I had primary breast cancer 22 years ago and was diagnosed June, 2024 with metastatic lobular breast cancer. I’m on Aromasin and Palbociclib, a CDK 4/6 inhibitor. I had nausea the first month or so on the Palbo and have lost about half my hair. Also lowered WBC and RBC but other than those I’m doing pretty well. I am NED (No evidence of disease) since mid October. I question how long I should stay on the palbo since it is so toxic? I know it will eventually stop working so I wonder if it wouldn’t be better to take a drug holiday after 10 or 12 months on the drug, assuming no progression, and allow my body to detoxify? I’m trying to do as much research as I can but there isn’t much information out there that I have found about this. Do you, or anyone else have any thoughts on this? Thank you so much.
I am very sorry to hear you have been so unlucky to get secondary cancer after 22
years cancer free.
This disease is just baffling. I got another non related primary breast cancer 19 years after my first diagnosis and it’s still annoying me so much but annoyed or not I have to accept it or go mad.
In fact I am mad as a hatter. In the olden days people who made hats did go mad due to the processing they did to make the hats.
I have a hatter and glover in my family tree who lived in Fleet Street in the 29th century. I blame him entirely. Henry Hogg of 74 Fleet Street I point the finger at you!
This thread has been a bit terrifying! I am due to start letrozole and zoladex next week (I’m premenopausal). I’ve been of the mindset that I just take everything they offer me - my mother died of BC aged 38 and I always wonder if she’d still be here if she had the same treatment options I have. I suppose I am scared of the side effects, but for me, the fear of recurrence or metastasis is greater.
I do wonder if I would make the same choices had I been 76 at diagnosis and not 46. I apologise if that sounds ageist! - I don’t mean it in a bad way, I just think that stage of life inevitably plays a part in decision making.
Hello, interesting comment about age. I think it plays a part, but also every one is so different. I was diagnosed age 36, my Mum aged 80. We took (Mum still taking, nearly 84) hormone blocking treatment as prescribed, with minimal side effects. For us any increased outcome was worth seeking. I do understand if we had more side effects, that could have been a different decision. Best wishes all goes well for you.
I’ve been on Tamoxifen for 3 months, no significant side effects. Just changed to Zoladex and exemestane for other reasons, plus zoledronic acid is in the pipeline . During my adulthood I’ve had issues with PCOS, and the concept of going into menopause brings me some elements of relief. The zoledronic acid I see as a benefit, when it comes to bone loss and reducing chance of bone spread. But most importantly for me, I’m 50 and I want to reduce high risk recurrence for my hormone fed breast cancer.
I intend to give it a good go. I’ve read the worse side effects are when you start the treatments, so will try to ride it out. As for long term side effects….well, I wish I had a crystal ball (don’t we all ).
).