Living with PASH and family history



My Mum was diagnosed with BC back in 2007 - she had a very aggressive inflammatory type and had a mascetomy, 6 lots of chemo and 6 weeks of radiotherapy. It came back 5 years later in her lungs and bones and I nursed her through both bouts to the end. We discovered during this time that her paternal aunt and grandmother had also had BC so I went for genetic screening and have been having annual mammograms and MRI on NHS ( for which I am very, very grateful). 


I found a long, ridged feeling lump on my r breast that came and went with monthly cycle and was accompanied by hot, shooting pains, like hot wires running through the tissue and soreness about 10 years ago now and wen for testing. They said it was just hormonal and to ‘keep an eye on it’. After about 5 years of annual screening, I was called back due to this area for a biopsy and diagnosed with PASH pseudoangiomatous stromal hyperplasia. 


I have been offered a mascetomy, a double mascetomy, removal of ovaries and reconstructive surgery etc… by consultants which I haven’t yet taken due to major concerns about an early menopause, leaking implants, impact of surgery with a young family and whether I could continue with my job in an art gallery wjhich necessitate heavy lifting and raising arms above my head! quite a worry with concerns over scar tissue, lymphodema, weakened muscles etc…


I try and live with the condition but its hard to put it out of mind between check-ups because when you get a shooting pain or feel the lump it brings back all the fear and memories of what my poor mum went through and results in sleepless nights and anxiety about leaving my children early and the possibility of passing genes to my daughter etc…


My mums cancer was very rare ( about 5 %) have infammatory BC and not eostrogen positive and I have my screening which gives me some measure of reassurance but I would love to hear from other women with this condition and their experience of living with it and what medical suport they have recieved.