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Early Stage Breast Cancer and Scleroderma

RobynKayRobynKay Member Posts: 2 New Member
edited November 2020 in Newly diagnosed
I'm 53 and I have just been diagnosed with Stage 1 breast cancer.  Unfortunately due to having Scleroderma, a connective tissue -  autoimmune disease, I cannot have radiotherapy, which would be the usual course after excision of the lesion.   It has been recommended that I have a mastectomy and possibly breast reconstruction.  I'm still waiting for a Plastic Surgery opinion on reconstruction and, again, Scleroderma may make that decision for me.   

I was wondering if there is anyone else with Scleroderma who has had a mastectomy and breast reconstruction, and how did it all go?  


  • AllyJayAllyJay Member Posts: 870
    Hi there @RobynKay
    . I have scleroderma, started out as C.R.E.S.T., but now the opinion is that it may now be systemic. I also have antiphospholipid antigen syndrome and Sjogren's. I had a bilateral mastectomy in 2017 and was also told that radiation was off the table due to interstitial lung disease, from the scleroderma). My surgeon said that the wound would have to be closed in a different manner to the usual way, with different layers having the tension going in opposite directions. I also had a vacuum dressing with an attached pump which gave the wound negative pressure. I never pushed for reconstruction as there was a general consensus that the healing would not likely be straightforward due to the connective tissue being abnormal. My scar goes from armpit to armpit and has healed well although I do feel a considerable amount of tightness across my chest. Feels like wearing a very tight bra.
  • RobynKayRobynKay Member Posts: 2 New Member
    Thanks so much for your reply.  I have CREST too, which is now known as Limited Scleroderma.  Thanks for the details about your surgery.   My Surgeon hasn't gone into detail about how she would approach the surgery, as I am still sorting out my options.  
  • AllyJayAllyJay Member Posts: 870
    Mine was originally Limited, but now along with the other two autoimmune connective tissue diseases, seems to have morphed over to Mixed Connective Tissue Disease or Overlap Mixed Tissue Disease, which is systemic rather than limited. However, back in 2017 I was still classed as Limited. My surgeon and oncologist worked very closely with my rheumatology team and worked out amongst themselves, which path to take, and I'm still here NED so hopefully all will be okay into the future. Good luck with your treatment, and remember, we are all here for you, and our "hive mind" covers most eventualities.
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