Been on treatment since 2020 triple positive . Anyway tdm1 or kafcyla for life in a nutshell till it stops working. Now thing is I don’t know where I belong as a forum . I have also inflammatory arthritis since very young .. while other story lol . But as regards life long treatment I’m still unsure as I thought metastatic was bones liver lungs brain however mine progressed to neck nodes on herceptin so descision to keep kadcyla . However I had really bad dose of inflammatory arthritis last dec I was in hospital etc and they sent pain specialist who said we will sort a management for this etc and you not metastatic so hope I won’t see you for years … they sent a for rant of right words a metastatic pain specialist my jaw dropped but since then thought we’ll why am I still on chemo what’s going on. I know I had lung nodules they were not too sure about . I feel I’m a grey area and there’s no forum for that . I’m not terminal but I’ll never walk away . I wish I could have a reply from someone like me. I tried secondary forum but I’m not sure I fit in and I don’t fit in to early stage and no one had said treatable but not curable …. Have had the whole lot of treatment since 2020 and still in active treatment . Sorry long post but every time I go … every three weeks three month scans it’s like they don’t bat an eyelid really nice and just accept I’m long term patient and oncologist said just keep fighting I feel .. fine but how can I find right people to engage with when I don’t know where I fit on. I’m thinking this is going to become more common in the future . It’s a wierd place to be in … any advice welcome … sorry
