how important is hormone therapy after a double mastectomy?

I have had breast cancer 3 times. twice in left 20 years ago in my 30s when i had a mastectomy. 3rd time was 4 years ago in right where i opted for another mastectomy and DIEP reconstruction for both breasts. I have tried letrozole and gave up after 14 months and was put on exemestane. I suffer badly with muscle pains that at times leave me unable to walk for a few days. They can be in my legs, feet or recently an upper leg muscle.  Mentally I am having a problem forcing myself to take it and i am currently taking it on alternate days.  Exercise has been severely restricted due to the pain. 

No one has an answer as to how to help with the pain but how important is it to take the tablets? I did not have a skin saving reconstruction so the skin on my breasts and the fat is from my tummy.  There can’t be much in the way of breast tissue for breast cancer to exist in.  I had chemo too.

I am not sure if the fact i have an extremely rare double mutation in the CHEK2 gene which means i had an 80% chance of breast cancer before the age of 40 but I am not sure this is a factor now either.

Any advice would be gratefully received.   

Hello Christine

I agree that after doing 10 years of tamoxifen and anastrozole that it isn’t easy but oestrogen receptor cells are also found in fat tissue throughout our bodies particularly around our middles so oestrogen is made there as well as ovaries which is why hormone therapy is important.I also have no breasts and also considered not taking the dreaded pills until I was reminded of that fact.

Best wishes

Elaine

 and ti’s was one

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