Bilateral Mastectomy

Julia you have had a lot of surgery for your PT and your outcome now you seem happy with thankfully but I have to wonder why you did not have a double Mastectomy first up once the diagnosis was malignant.

I am under Professor Ung here in Brisbane and my PT was borderline malignant and I had the wide lesion excision removing a very large tumour the size of a small guinea pig.  My margins are not 1cm as everyone seems to be saying is the accepted margin but 10mm, 1mm and 3mm and yet I have had my 2 yr check up recently with mamo and ultrasound and all is well for another 12 months.  Should PT return Prof. Ung says it is an instantaneous mastectomy and no options.

It seems to me that this diagnosis is left to the surgeon concerned so if they dont know much about it they treat it as lumpectomy when it should be otherwise and so on.

Prof Ung did say to me when I asked a few questions at my last check up that since I am post menopausal that my diagnosis was easier than in a younger woman.  PT can appear to be fibroadonema and more likely to be than a PT but when you read our thread of posts on here there are quite a few young women with a PT diagnosis.  I said that there seems to be many cases of misdiagnosis initially and after a couple of surgical invasions they decide oh no its PT.  Lets hope they improve how they decide who has what surgery for this diagnosis because all our stories differ and while I understand that we are individual cases and would vary, there should be a set system of when to go for mastectomy and be safe  etc.  Once PT has been diagnosed a second time it  has already sent cells to the liver, lung and bones.  While it is a Sarcoma and not a cancer initially it becomes cancer and not only in the breast but liver, lung and bones which I have said before.  I had an Aunt die of breast, liver,lung and bone cancer years ago and no doubt she had Phyllodes to begin with as it was the breast cancer that was her initial diagnosis.  The medical fraternity would not have been aware of PT in the 60's or 70's.   The general understanding is that PT is rare but how rare I ask is it when we have 48 members in our group and when I joined a couple of years ago there were only 10.

PT does not respond to chemo or radiation and because I also have scleroderma which is another connective tissue disease I could not have radiation anyway.  My PT was in the connective tissue of the breast.

You have a wonderful MUM and what fantastic support she has been to you and all the best to you and Mum and all those relatives suffering cancer of one type or another. 

Best wishes

Colleen