Post Chemo Tinnitus

[grosel]

Last week I felt like someone had given me a heavy slap. I saw my new Cancer consultant, really nice man, very caring and very different to the one who did my surgery for breast cancer. I told him how I was not coping with the tinnitus and hyperacusis, that I had lost 60% of my hearing and regretted having had surgery and then the 4 months chemo drugs, even though I refused to continue with the rest of the treatment, I now just wanted to die, my quality of life was not worth surviving the cancer for.

In the discussion he printed out, on my request, my prognosis in not having further drugs and what it would have been with just surgery.

It was a shock to find out that the chemo only gave me 1% advantage on my survival rate for 5, 10, or 15 years, but the reality is, that 1% has deprived me of a good quality of life. If I had been given this information before the chemo, I would never have had any drugs, I thought I'd done so much research, but tinnitus was the lowest risk, it should be the highest.

My GP, Tina the tinnitus therapist and my husband are trying so hard to support and help me, but I have always been a quiet person and my enjoyment of peace was my greatest treasure, it has been stolen.

I think every patient who is diagnosed with cancer and offered chemo should be warned about these side effects, because even though the surgeon may remove the cancer, the oncologist can destroy your quality of life by causing more harm than good and Tinnitus is far worse for me than living with cancer.

[Ruud1boy]

Really tough situation and you have my utmost sympathy.

The figures your new consultant gave you are shocking - they can't be right surely? Enduring chemo improves your chances of recovering from the cancer by 1%??

I've often thought I would rather have an illness that's going to account for me, rather than having to face the never-ending torture of lifelong tinnitus - but I'm biased. Maybe I'd change my mind if I were to fall victim to something terminal.

[grosel in reply to Ruud1boy]

Thanks for your post.

Yes it's true, printed in black and white, 88% with just surgery, 89% with chemo, 1% has made all difference to my life and not for the better.

If I'd continued with the other drugs I would have stood a high chance of developing neuropathy, which would have totally tipped me over the edge as I do a lot of sewing and craft work, so pleased I stood my ground and refused them. But I have to say, I am getting support, so maybe in time I will be able to adjust.

[Ingrid-p in reply to grosel]

I really feel for you. I've been through breast cancer treatment (3 years in), but I only had surgery and radiotherapy. I've had t for 38 years, but if they'd warned me my t would worsen with chemo there's no way I would have had it.

My journey with t started with an ear infection at age 23, I'm now 61, it hasn't been easy. I can go for months even years without it bothering me (although it's still there). I wear 2 hearing aids with inbuilt maskers.

At the moment it's bad, probably due to my recent audiology appointment when my aids were turned down instead of up 😡 I know it's a phase that will pass, but it's so debilitating.

My best advice is to try and carry on as normal and gradually the brain will tune it out (habituation), easier said than done tho. I've probably habituated 7 or 8 times in my journey with t and each time it gets bad I think I'll never be ok again, but each time I am.

Take care

Ingrid xx