I found out I had BC (grade 3) with spread to lymph nodes last month. CT and bone scans came back clear so I was starting to feel more positive about things but then two days ago I had a meeting with the oncologist who told me I was triple negative. That really knocked me back. I’m due to start chemo the week after next followed by surgery and rads. I’m going to get gene testing done too. With the triple negative diagnosis all my hopes are on chemo, but I was told that in some (admittedly rare) cases that does not work. From my first appointment when I was told that cancer was highly likely, I was told that this was treatable, but now everything feels like its unravelling. There’s so much uncertainty and I don’t think I’ll ever get peace of mind again. How does everyone cope with this?
hi alicat! I remember you from another thread where I was having a wobble. I am also triple neg and also with lymph nodes. From the moment I was told to prepare myself I thought “please at least let it not be in the nodes, and at least not triple neg”. So I did not take the diagnosis well! These past few weeks I have been for every scan under the sun and at one stage it was looking like it had spread to three other places. But it turned out those were random findings so here I am back at square 1, but now feeling much calmer because now I know it could have been worse if that makes sense? I fixated on triple neg from what I’d read online but actually when I thought about it, my team had never even mentioned it, just said this is curative treatment. So I’m trying to focus on that. I’m speaking to a counsellor which helps a lot, especially processing things like being told initially it was nothing to worry about… I have also had a genetic test done and waiting for results to inform surgical options. Sitting in the oncology suite rn waiting for my first chemo! I won’t pretend I’m happy and relaxed about it all the time, but the best thing my counsellor has said so far is to concentrate on things you have control over eg for me this is healthy eating, exercising, or whatever other hobbies you enjoy really. It is all so unfair and I’m still *beep* off about it, but we can beat this, the odds are honestly in our favour. Don’t Google stats - they’re all out of date, maybe especially for triple neg because the docs now know to treat it differently from other bc, with better results. Sending strength!xxxx
Hi alicat45 - you have already had some lovely helpful replies, but I didn’t want to read and not stop by without giving you a big hug at the very least. ?
You might want to look at the various chats about triple negative BC, or even start one with that specific heading if you have particular questions and want to get attention from those with TNBC.
When you do read don’t forget that by its very nature a forum like this tends to lean towards more negative stories, those who are well and getting on with life don’t always come back on here - that’s not a criticism, just a fact. I have one dear friend who was diagnosed with triple negative about 15 years ago and touch wood all is going well for her.
Do feel free to ask your team any questions you have, and from my experience teams tend to be very conservative so they wouldn’t have told you it was treatable if it isn’t - they don’t want to give false hope.
Your comment about anxiety could have been written by almost everyone on here. It’s very normal to feel as you do, not good but normal. I found the waiting the hardest, and I hope you will feel even a bit better once treatment starts and you feel like you are getting rid of it. You might want to look into counselling, or the Someone Like Me service on here, or even just continue chatting on here - whatever works best for you.
My very best wishes to you as you go forward. Evie xx