I was diagnosed at 42 Stage IV de novo in late September 2019, to bones only, located in sacrum and my lower three lumbar vertebrae, and a 4-5 cm primary breast tumor. Diagnosis was chaotic and treatment didnt start until three months later, at which point my sacrum had fractured and I was on crutches. So they zapped me with some radiation to the pelvis and gave me some pills and off I went.
It took 7 months to rehab myself and get my strength back, but in that time the drugs (palbociclib, denosumab, zoladex, letrozole) have held my bones stable/healed some of them and my primary is now reduced almost 2cm. Once I found a generic brand of letrozole I liked (and stuck with it) I have no joint pain or aches or anything. I am not on any painkillers, and for the most part feel good, maybe a few days a month of fatigue. I look absolutely normal, you would never guess I have cancer. I continued to work throughout (probably the one positive of Covid is the WFH so in those early months I could go lay down if needed), do all my hobbies, moved house and lifted boxes, and workout about 3 or 4 times a week on the bike/lift light weights, and walk nightly for an hour or so.
I switched hospitals in September and went private and it was suggested I do a genetic test because of my age. It came back a surprise BRCA1 - we can’t find anyone on either side with breast or ovarian cancer, but its there and it allowed me to tell my much younger sister so she can go get tested, and hopefully be spared if she is positive. To the OP, your age and original hormone profile suggests you could have a genetic driver behind this - has anyone spoken to you about being tested?
As I am highly ER/PR+ (which is not common for BRCA1, but nothing about this dumb cancer has been common) and on ovarian suppression (the zoladex) to enable the drugs to work, between the BRCA result and my age, I asked to have my ovaries removed (MO preference as well). MO referred me, with an aim to getting the surgery date set up so its ready to go when we come out of Covid.
Bone only is a good spot to be in, I know of someone on another forum who went 5 and a half years on the same drug cocktail, bone only, and has only just now progressed slightly, still in her bones. There are some women from the original trial for palbociclib who are still taking it - 8 years later. I know a few women who have brain involvement who are trucking along 8 years after diagnosis, and a woman who has had liver involvement from the start who is still here - 20 years after her initial diagnosis. If you are still TN for this recurrence, there are quite a few immunotherapy trials run in London. If its switched to triple positive well, between the Herceptin and Perjeta and the new therapies coming out, thats a good spot to be in. BC is not (yet) a chronic condition, I dont care what they say, but its edging along.
Its a totally crap situation to be in, especially in your early 40s, and when you see friends doing “normal person” things like worry about kids school or work promotions. In a way its almost been freeing to not give a **bleep** about any of that anymore, to have had the rug pulled out so completely shows how much an illusion of control and safety we have over anything in life. I control what I can and leave what I can’t and don’t let it bother me too much.
Good luck and come back and let us know what your plans are!
