Any advice?

Just when I thought ataxia was the worst thing that could happen to me I get diagnosed with breast cancer. I will be having a double mastectomy and reconstruction and possibly chemo. Has anyone gone through surgery and pain meds and chemo? How does it affect ataxia? My neuro says chemo may destroy nerves in my feet making my balance worse. I'm more worried about pain meds making my balance and nystagmus worse and falling while I'm healing. Any advice would be appreciated.



Dee hope you feel better

Well Dee 13 years ago I had surgery for testicular cancer.The Docs removed my left testicle and told me they would check my blood every month to see if the cancer came back.Two months later it did.So I had 4 rounds of Chemotherapy and that resolved the problem.Just so you know when I went for my Chemo almost everyone else there was a female going for breast cancer. Look I know it sucks but my best suggestion is to talk the nurses where you go for your meds to see what they suggest,they are the ones who deal with cancer patients day in and out.Good Luck Tommy.

I’m sorry you are going through this. Best wishes for as smooth and complete a recovery as possible. I don’t have experience with chemo. But have had two major abdominal surgeries ( recovering from one right now ) since my ataxia began. And have chronic pain, so take pain medication.

My advice would be to make sure to look around your home and have everything set up so that you have to do minimal reaching, twisting, etc. Make sure you are stocked up on easy to eat foods, water etc. and that it is all within reach. Arrange for as much help as possible, and don’t be afraid to ask for it. It is much easier to fall following surgery, and all the little unconscious tricks your body uses to help you balance, hold on to things, etc are thrown off by your body adapting to the healing surgical site. And falling/ twisting wrong after surgery is the worst.

I don’t know your level of functioning now, but to be on the safe side I would try to project where you would be at if your ataxia was a few levels worse than currently and plan around that for your immediate recovery. So, for example, if you currently get by without a walker and just grab on to furniture to steady yourself - get a walker just in case. Stock up on lots of quiet activities to do.

Good luck.

Hi Dee:-)

Last year I found a lump in my breast. I had a lumpectomy, 6 rounds of chemo and 15 sessions of radiotherapy. The last radiotherapy was in April this year. The cancer was grade 3 but hadn’t spread to lymph nodes.

My Oncologist hadn’t had anyone else with SCA, so I was prescribed the regular chemo. After a couple of sessions he removed one of the medications because it was known to have a neurological effect, and it did.

By day three after the chemo infusion, I was literally sofa bound, that’s how it affected my ataxia. I just wanted to zone out completely and sleep. I had less energy than usual but apart from ‘feeling spaced out’ it didn’t greatly make my balance worse. As far as I recall nystagmus wasn’t made much worse.

I was worried about swallowing/choking issues, so extra anti sickness medication was prescribed. I recall being nauseous, and having little interest in food but I never vomited. Unfortunately there was no weight loss:-( I was weighed before every chemo session, prior to the infusion being made up. They did prescribe pain meds but I tried to take the minimum.

The biggest problem with radiotherapy is the need to lie down flat. I suffer from vertigo. Usually once I’m up in the morning, I try not to lie down for the rest of the day. There was a certain amount of redness but creams were prescribed and I managed ok.

There seems to be very little known about the effect chemo has on SCA, I volunteer at an ataxia clinic and was surprised that I couldn’t get any information there. To be honest, it was apparent that there was no interest.

Bear in mind everyone reacts differently, go with the flow:-)xB

Wouldn't it be lovely if we only had to deal with one disease in our lives? As if one disease isn't enough to deal with, life throws another one along ...

its almost too much.

I am sending you very warm thoughts for your treatment and all the very best to all ataxians who have more than one illness to deal with.

Caz x

Hi Dee:-)

I hope you’re managing ok. Let us know how things are.


Thanks for asking. I had a bilateral mastectomy with the first step in reconstruction. They put in tissue expander at the same time. It went well, but these expander are horribly uncomfortable. I had my first round of chemo yesterday. Not fun, but not as bad as I expected. My oncologist and pharmacist are working with the neurologist and the neuro pharmacist. So far the drugs aren't changing the ataxia at all thankfully. I won't need radiation at all. So far it's going pretty well. You would think ataxia is enough for one person. At least that is what I hear from everyone. I will have 6 months of chemo. The bright side...I won't have to blow dry my hair or shave my legs.

Beryl Park said:

Hi Dee:-)

I hope you're managing ok. Let us know how things are.


I thought I’d miss my long hair but it is a bonus having it short :slight_smile:

Make sure you get plenty of rest, we all wish you well :-)xB