Mega sexist comment but can’t help thinking that if men had to do without hormones. They would have found an alternative by now! Oh the days of HRT which I took for granted. No side effects, just bliss. Letrozole - where shall I start? Crippling bone pain preventing me from getting out of bed without codeine. Pain through the day and night and so sweaty I had to change nightclothes every day. Energy down the drain: watching daytime television the equivalent of a polar expedition in terms of getting washed and dressed. Overwhelming depression constantly fuelled by weight gain. And they call that living…….?
I worry when I read it’s “only a small %” so of no significant benefit. Let’s use 3% as an example (which mine is at 10 years on Predict). That doesn’t mean I am 3% less likely to get a recurrence, it means an extra 3% of people survive 10 years because of hormone therapy. That’s 3 more survivors out of 100 and not insignificant. Those blue dots representing an extra person certainly put it in perspective for me.
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How did you get free prescriptions?
Men do have to have testosterone blocked when they are diagnosed with prostate cancer. It is super hard and life changing for those men too, who don’t often have any other option to reduce prostate cancer progression. It is heartbreaking for those men too.
You are quite right to point that ou
Hello ladies,
Thought I’d add my two penneth 
I was diagnosed in 25 with IDC grade 2 ER 8 PR8 Her 2 neg. 15mm tumour removed via lumpectomy SNB showed no lymph involvement. Clear margins after 1st surgery. I had 2nd surgery to sort out a huge hematoma and infected wound. But if a shit show tbh and I’m still trying to come to terms with it all.
My hb was diagnosed with prostate cancer 6 mnths prior to mine and so he is on testosterone blockers and, yes, it’s not fun for men either! Endocrin suppression sucks! - for all of us.
I opted for the radiotherapy and it wasn’t too bad. I did get some peeling skin and a bit of tiredness but it didn’t last too long. I did end up with a change in skin colour and I believe that is likely permanent. My own treatment path did not include chemo.
My oncologist put me on anastrozole for five years. I really struggled in perimenopause and found HRT very effective, so having to ‘cold turkey’ without it was scary once I was diagnosed. However, I have to say, I didn’t seem to struggle - until I started the anastrozole. Caveat: I am autoimmune, so this becomes a tricky balance for ME.
Within a couple of months I could hardly move!! My BP shot through the roof and I had mouth ulcers, itchy skin, night sweats, migraines, insomnia was just insane! And my mood tanked…
I tried different brands- no significant change.
Life was starting to look bleak! My husband was struggling with hot flushes, muscle weakness and fatigue and I was just a wreck, I couldn’t function. Bone/muscle pain was a big issue for me and I developed what they thought was tendinitis in my affected arm.
Spoke to onc who told me to immediately stop and give my body at least 6 weeks to recover. That was last Dec.
My predict scores for recurrence are good, with or without the AI’s. I gained the most protection from the surgery and radiotherapy. And infact over 5 years AI’s only afford me an other 1% protection on what is already a low risk.
I talked this through with the oncologist, who was initially pretty bullish about staying on AI’s. But, as I said to her “ your remit is to keep me cancer free for the next five years (she nods)” but I pointed out to her that “MY remit is to keep me healthy and functioning for as long as possible, as well as trying to keep me cancer free” . HRT was doing that for me before my diagnosis. AI’s weren’t going to help me to carry on protecting my bones, my heart, dementia risk. Yes, they give me a slight (1%) advantage for my cancer risk for 5 years. But, if those meds strip me of everything that a woman needs to live a long, strong life- are they worth it for ME?
I had a terrible reaction to anastrozole. I refused to try Letrozole as it’s known to be more agressive. I can’t take tamoxifen because of family history of endometrial cancers. So, exemestane is on the table for if I want to try again.
That won’t happen any time soon. I’m still under an orthopaedic surgeon for my affected shoulder. What is now known to be adhesive capsulitis, was very likely caused by the treatment. I have had to fight to be heard and it has taken months to get my range of movement back- I’m still not 100% but doing everything I can to help myself.
I was also diagnosed with hyperthyroidism. Again- question marks over whether or not it’s all connected.
Onc said nit to do anything else until that’s stabilised and that could take 12/18mnths!
So, here I am ladies. No AI’s have brought my bp back within normal range. Bone pain gone, insomnia gone, eyesight improved, mood improved and I am stronger now. I’m doing strength training and my thyroid is on the way to normal range (bit more to go yet, but it’s well on the way). It has taken months, and months, to feel better. I feel well now. I’m reluctant to do anything that is likely to jeopardise that.
I’ve got until August to decide on exemestane but I will see what my next mammogram shows before I decide.
We all want to get our lives back but the reality is that we are all different. I, personally, don’t want to struggle for the next five years on this stuff and have my husband have to watch me disintegrate and struggle. That’s MY situation. His prognosis is good, thank god, but we have both been through the wringer. Normal is vastly underrated! Normal is what we aspire to- it’s that simple.
We all have to make our own way through this. No one else can make that decision for you. It ain’t easy. It’s risk versus quality of life for me and, at this juncture, quality of life is winning. I’m married to a wonderful man but he’s older than me and this next five years may be our last years together- do I want to spend them in pain and feeling crap?… hell no. I won’t do that to him- not on a 1% advantage for an already low recurrence risk 
That’s my story. I hope it helps. Love to all xx
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