Hi
I can’t answer your questions about liver mets but I can perhaps address a couple of other issues you touched on. My first piece of advice would be to forget all the old 20thC tropes we have of SBC. There has been so much research, new treatments, new drugs, that the idea of SBC as a death sentence is very very outdated, even for the most aggressive forms of breast cancer. I remember someone posted in the SBC forum that she’d lived with it for 22 years so far. There are plenty of positive stories that I’ve read. And remember, the people who post are usually those needing support, experiencing difficulties. How many are just too busy with life to visit places like these forums? A LOT.
Second, and this is something I had to learn, every diagnosis is unique. Biopsy samples are sent world-wide to be tested for various mutations, genes, proteins, whatever. The existence of one protein can give you access to one new treatment or exclude you from it. The treatment plan will be very specific - and tweaked. So one person with liver mets may have a treatment you expected but actually it wouldn’t work for you. Equally, you might have access to something like immunotherapy which I wouldn’t. I hope that makes sense.
This must be very distressing for you too. You just need to remain vigilant, as you were advised, and never ignore the slightest suspicious symptom. This isn’t just in your breast/breasts but anywhere really. My tumour is behind my nose, poking into my eye socket! However, it isn’t inevitable, just a possibility, so stay vigilant. Also, look after your emotions. Don’t bat them aside because your sister-in-law is more important - it doesn’t work.
I hope this won’t offend you: This is your sister-in-law’s illness. It’s great that you are reaching out while she is still reeling with shock but please allow her to follow her own path. You can add signposts (NEVER Google) like to here, to a Maggie’s Centre and various wonderful charities that offer online sessions and face to face support. Please also allow her to experience her own emotions. I think a lot of women are told they must be positive. When we’re feeling shit, we don’t want to hear that - it makes us feel we’re failing. We can only do the best we can. We also need to decide for ourselves just how much information we want and that must be respected. Some need every scientific detail to feel a sense of control; others just go with the flow and don’t want to know the ins and outs. That’s certainly my path - I have never asked for my prognosis. It’s only statistics after all, and I’m a person, not a statistic. I don’t see the point of wasting emotions on things I can’t change. What will be will be.
There will be many treatments available; even for triple negative patients like me, the menu is growing. She is likely to be on one treatment or another for good - but that doesn’t stop travelling, activities etc. You work round everything. I wish you all the very best as you all adapt to a new way of living, not always easy for her but manageable. Take care.
Jan (17 months since starting first treatment and still on it!) xx
