That sounds very disconcerting, especially when you are generally feeling so good. Although your oncologists said the tinnitus is just something you’d have to learn to live with (and I believe that’s the case in many circumstances) I would encourage you to get back to your breastcare nurse and explain the fuller picture. I finished treatment 17 months ago and I’m a mess of side- and after-effects. One referral I’ve been waiting for since last year is to Neurology. Nothing has improved over time but I’ve noticed a newer development - my brain is occasionally misinterpreting signals. One worrying incident was when I ducked while driving as my brain perceived a tree falling on the car. It’s only happened the once but I am ultra-careful driving right now. If it happens again, maybe I’ll consider I’m not safe to drive till I’m cleared by Neurology.
The brain is an extraordinary organ but it’s not immune from the onslaught of chemo. Your hearing was affected but maybe it goes a bit further than that and needs to be checked out. Yes, it’s inconvenient and might mean a day off work for the appointment but better that than make assumptions and worry about hallucinations.
I hope you continue to feel well. I guess it must be harder to seek help when you don’t actually feel ill but, if you hadn’t had cancer, would you have ignored it for long? Probably not. All the best, Jan x
I've completed treatment, mastectomy, lymph node clearance, chemo, refused radiation treatment and bone infusions, now on tamoxifen and for the most part feeling fine. I'm back at work, more or less full movement on my mastectomy side, most of the side effects of tamoxifen seem to just be that my peri-menopause symptoms have just been heightened, which makes sense really, and I'm just getting on with it.
Problem now seems to be worsening tinnitus - it started with the chemo and has never gone away, if anything it's getting worse and I'm now hearing other noises including voices. The voices seem to just make occasional comments, I turn around expecting someone to be there and they're not, it took me a while to realise I was hallucinating these voices to be honest.
I hear alarms, sirens and bells regularly and this seems to be an extension to the tinnitus, so I'm also assuming the voices are similar, I am at a complete loss as to what to do next though, the last thing I want right now is more time off work and doctors and hassles, especially in todays world, I'm feeling pretty good in myself otherwise. When I initially got the tinnitus with my chemo my oncologist just said it was something I had to learn to live with and that it may improve over time, but that it could get worse, is this what she meant?