Hi everyone!
I had a few questions for anyone living with bone and liver mets. I’m 39 years old, ER+, PR- and HER2 negative. Bone mets were found in my spine 12 months after I finished FEC-T chemo, mastectomy and radiotherapy. I was originally on Tamoxifen until the mets were discovered. I was then swapped to Zoladex, Letrozole, Denosumab and Palbociclib in Jan / Feb this year. I already had one collapsed verterbra in my spine which required surgery back in January, followed by radiotherapy to that section of my spine in March.
I’ve just had my 3 month CT scan follow up and the results weren’t as good as I hoped. The Palbociclib had apparently worked really well for the bone mets, however two other of my vertebra are now starting to collapse due to damage already done (apparently my bones turn spongy). So I might need more surgery or procedures done to shore those up and reduce the risk of spinal cord compression. Waiting on Neurology for an opinion.
The CT scan also showed 3 new “unidentified” lesions on my liver, which I’m told are currently only very tiny. I have a complex liver as its been suspected for a while I have poly-cystic liver disease and have always had cysts, lumps and bumps on it. So now the radiologists have to try and work out which ones are benign and which ones might be mets!
My Onc told me that the original radiologist didn’t comment on whether or not mets were suspected in my report, just had the new lesions down as “unidentified”. Onc asked another radiologist who specialises in breast cancer to have a look. He has apparently told her that he is “99% certain” that the new specks will be liver mets.
So my Onc has given me a really difficult choice to make. I can either carry on with the current medication regime, have an MRI scan to double-check the liver and see where things are at in another 3 months’ time. Or I can stop the Palbociclib and Letrozole and go onto Capecitabine. My Onc suggested her opinion would be to swap to Cape now but that ultimately its my choice.
Aside from not even being sure I can have an MRI due to metalwork in my spine, I decided that it wasn’t worth taking the risk with the “unidentified lesions” (as that’s how I got into this situation in the first place. My Onc decided to not worry about the previous “unidentified lesion” on my spine at the point of finishing my FEC-T for my primary last January and it turned out almost 12 months later that this was indeed mets).
So I am due to start Cape next week and wondering what on earth comes next, as Onc has said Cape works differently for everyone, some women need to switch again within 6 months, others can be on it for a year or more. I’m so disappointed the Palbo didn’t work as I was tolerating it so well.
I wondered if anyone had any suggestions for me in terms of what questions I should be asking my Onc next. The thing I am most anxious about is what happens if the Cape doesn’t work. My Onc has gone through the whole talk with me of “you’ll be on it as long as it works or until toxicity levels become too much” and has also suggested I consider early retirement if I can’t work from home on a permanent basis.
I feel like I’m back at the beginning with all of this and I can’t get my head around it. I would love to hear from others who have followed a similar treatment path, as I have read lots of stories on here and am so grateful to all of you who share your journeys. It gives me so much hope. I’m trying not to despair but as I’m sure many of you have also experienced, sometimes the fear gets the better of you!
Lots of love and hugs to all going through this - this forum is really one of the few places that cheers me up no end when things get a bit gloomy xxx