Newly diagnosed...help???

Nice to hear back from you Meredith and it is good that you got what you wanted even if you were made to feel it was unnecessary.  The bleed must have been uncomfortable and glad to hear that is all sorted too.

I suspect the reason for doctors trying to play the condition down is because many dont know that much about it and are used to dealing with common breast cancer and we offer a challenge!

My surgeon tells me that a reoccurrence of Phyllodes means instantaneous mastectomy but I am also questioning the sense in this too because once Phyllodes has returned it has already sent cells to the bones, liver and lungs.  I am wondering now whether I would be bothered putting myself through a mastectomy when there are 3 other areas of the body on the way.  I will decide when and if I am told it is all that can be done. I dont really see the point at my age of 65 now of  prolonging the course of full blown cancer as a result of Phyllodes returning.

For younger women it would extend their lives and I can see the point of that but prolonging what is an awful cancer medley for the sake of how long?? is cause for rethinking on this. 

An interesting factor is that my mother's two sisters died of breast cancer and one began with breast cancer at about the age of 65 and then developed bone, liver and lung cancer and this was at least 30 odd years ago so her diagnosis was breast cancer.  Strange I say and unsure about the other sister and now my Mum is deceased so no further info available.  I suspect it was Phyllodes but maybe then it was treated as all the same thing.  They were not even caring how they told her, simply said 'its terminal'!

Shoulder pain and neck pain could also be something to do with the awkward position we are put in for breast surgery.  I still have a lot of discomfort in the shoulder blade underside whether its muscular or another Phyllodes time will tell.  This discomfort and pain wakes me and this is how it was prior to diagnosis and its back.  Another thing I used to do prior to knowing what was wrong is carry on with whatever I was trying to do in the way of chores saying 'I wonder if you can get cancer of the shoulder blades'?!!!  So in my case before and after pain and still have it now all these months later.  It will be 2 yr check up in June so it will be interesting to see whether I have developed anything or not and because I also have Systemic Lupus and Scleroderma both auto immune diseases of the connective tissue my pain might take longer to go.  Phyllodes is in the connective strata of the breast and not in the ducts etc .

We girls are blind leading the blind I think but it is good to have this forum to discuss what we think our own findings on this are.

Good Luck to you and fingers crossed that no further problems arise for you.

Cheers to better times ahead

Colleen