Ataxia UK
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Double mastectomy!

Hi, apart from having idiopathic Cerebellar ataxia I am about to have a double mastectomy as I have breast cancer inboth breasts. I have had a recurrence after 18 years when I had a lumpectomy on my right breast. I am worrying about not being able to use my upper body after the op to balance myself. At the moment I hold onto a lot of walls! I use my upper body a lot to keep my balance. Has anyone else gone through this and have you any advice?

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Hi Wobblymum :-)

I'm so sorry to hear you've had this diagnosis.

I have Idiopathic SCA, and have just finished a course of chemo

following on from a lumpectomy.

Personally I feel that the chemo emphasized my Ataxia symptoms,

particularly fatigue, I would literally pass out and sleep for a couple

of hours in the early evening. Tiredness and weakness has made

my balance worse too. Like you I'm a wall hugger :-)

Obviously you need to feel safe as you move around the house, the

last thing you want is to lose your balance and bump sensitive areas.

If you don't already use a walking stick outdoors, perhaps this might

give you some confidence in the house.

I know you'll have to be very careful when lifting/stretching/reaching,

so you may feel that putting all your weight on a walking stick might

not be a good idea.

Other than that, an indoor rollator might be a better solution short

term. You would probably feel better balanced ( like pushing a trolley)

and not so tense.

Best wishes :-) xB

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Something I would add to my previous reply :-)

The chemotherapy was called 'FEC' and comprised of 3 different

drugs.

After the second session the consultant decided to omit the F drug.

I was the first person he had treated with SCA.

It's known to have a neurological effect and I felt Ataxia was becoming

more challenging.

Not everyone is prescribed the same chemotherapy, so this may not

apply in your case.

As always, best wishes :-) xB

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thanks for this info

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