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 
Just wanted to add, finally, that I am not an advocate for all women ditching AI’s at the first sign of side effects. In fact, if I could tolerate one of them, I would absolutely be taking them for five years- even on a 1% advantage. But given the issues I have had, if I do try exemestane and after 3 months I am struggling again, I know that I have the luxury of being able to step back with less risk that others. I am, however, acutely aware that that is not an option for all of us. Infact my own PT is living with stage 4 BC. She’s awesome! She has HAD to battle with side effects and just push on through because they ARE keeping her alive. That’s her reality and she understands her own risks too. Would she like to just stop? Some days- absolutely. Other days she is more positive and her need to be here for as long as possible,enjoying every single moment, is what keeps her fighting for herself and her family & friends. She is still running marathons (literally) just a wee but slower these days… cancer hasn’t stopped her, she has just adapted to living with this ‘condition’ … long may it remain so. But without those meds, she wouldn’t be here.
I believe that a healthy & happy life is paramount. And although it won’t stop you getting cancer, it can help you fight it, if you do. So, i intend to try my best to stay that way, in every respect and keep helping my husband to do the same. That’s something I CAN control.
Well, That’s my story. I hope it helps. Love to all xx