Hello there,
I recently found out that I have breast cancer. I also have Myasthenia Gravis, a rare neuromuscular disease.
I had a quick look online in the wee small hours when I couldnt sleep(!), and it seems that radiotherapy and chemotherapy can have a negative impact on MG, which in the case of chemotherapy can be life-threatening.
I feel overwhelmed that this may not be as straightforward as I had hoped. Extra care is also needed with general anaesthesia if you have MG, and I thought that would be the only tricky bit, but now it seems there are even more potential issues.
I have my appointment with the surgeon next week. I’m assuming the team will liaise with my neurologist.
Has anyone else here got Myasthenia? The very lovely breast care nurse had never heard of it, which is pretty standard.
Thank you x
Hello, sorry you find yourself here and with the added complication of MG. I don’t have MG myself but I know a bit about it. Not sure show much information there is out there specifically for MG plus cancer, but have you had a look at the MyAware website?
Also, definitely give your neurologists details to the surgeon/oncologist and explain there are potential side effects you’d like them to discuss, and a list of any medications you’re on for MG if any. But I’d also give your neurologist a heads up incase they have any knowledge of this situation to give you up front / to make sure they are contacted!
Hope it all goes ok for you x
Thank you!
I looked on the Myaware site first, but couldnt find anything. I’ll contact my neurologist’s secretary tomorrow.
Dear @ dilly, I am sorry to hear of your diagnosis and the extra challenges that lie ahead on account of your existing condition. If my own experience is anything to go by (going through treatment with type 1 diabetes) you need to educate your oncologist and yes, do get your two consultants speaking to each other and working together as soon as possible. Ideally your neurologist should be part of the MDT when your case is discussed. Sadly my oncologist refused to consult by diabetes consultant or even copy him into my letters. As a result a number of decisions were made which caused me harm. I would not wish this to happen to anyone else. You will need to be your own advocate and speak up at all times. Your treatment plan should take full account of your existing condition and be tailored accordingly. I wish you well. X
Thank you so much @Tulip29 x
I spoke to my Neurologist’s secretary today, who said the MDT will just be oncology, etc, and they will contact him if necessary 
At my appointment on Wednesday I will give the surgeon my Neurologist’s contact details, the (long) list of contra-indicated drugs for MG and the information regarding anaesthesia and MG.
In case it might be useful for anyone else, the information about drugs/anaesthesia and MG is available on the Myaware website (the UK charity for Myasthenia Gravis).