Mastectomy scar and lymphodema

Hi all

i had a total mastectomy in December 2019(I know nice Christmas present!) and already have lymphodema in the affected arm following my original lumpectomy and all lymph nodes removed. My scar is still really swollen and painful to the point it stops me getting to sleep at night. It is red and warm to touch and felt like the scar was going to pop open due to the amount of pressure. As you can imagine the scar is very unattractive. It’s just so painful. I have spoken to my team and they said my margins were clear so not to worry. Spoken to my lymphodema team and they have suggested taping and has referred me to the pain team. 
just wondering if anyone else has experienced this or experiencing. Just feeling very down about this. Husband is afraid to touch me and I can’t lye on the affected side as it’s too painful. 
does anyone have any suggestions? Just have different hair following chemo and now only one breast and an unsightly scar Frowning2

  • Morning 

    Noticed as yet you have unusually had no replies - You may want to post this question in the Main Breast Group you joined as it is a lot more active.

    How is the pain now and have you had further contact about it ?

    Please don't beat yourself up about your appearance post treatment, it takes quite a while for hair to recover and straighten out post chemo and to coming to terms with your 'new normal'   I'm sure your husband is still getting over the shock of what just happened as well ?

    Hope you aren't offended by the image - but 8 years on this is now how we both feel about life after breast cancer.

    Hugs, G n' J

  • Not offended at all. I shall post it where you suggested. Just newish still to the forum and never sure where to post. 

    thanks again xx