I am 44 now, I was diagnosed with Pash in December of 2014 at the age og 43 after finding many lumps that had been biopsied since October 2013. My breast surgeon suggested a bilateral mastectomy because I had so many lumps and my family history of breast cancer was high. I had once sister who died at 37 and another survivedit in her early 40’s. I tested negative fotr BRCA1 and 2. I went into my medical records and found that I had a total of 15 lesions (9 on the lfet and 6 on the right). I went from a 34 b to a 38c, I was bigger on oe side than the other.I immediately decided to have the nipple sparring mastectomy since I have a husband and a 9 and a 19 year old sons. Surgery went well on 3/10/15. I was not able to do direct implant because of the blood supply to the nipple wasn’t doing too well. I have tissue expanders in that have been filled with 60 cc’s on 3 occasions. They feel very tight and hard. I would like to link up with women who have had this very rare disease just to ask questions or just to talk nothing more.
Hi StillSaved2 and welcome to the BCC forums
You may find this recent thread on PASH helpful, please also feel free to call our helpliners for further support and information on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Saturdays
I’m happy to hear that your surgery went well. Do you still have pains?
I was diagnosed with bilateral PASH in March 2015. I also have two sisters who survived cancer in their early 30’s and 40’s. I’m 42 now. My BRCA1 and BRCA2 are negative too. One surgeon told right away I need mastectomy, another one told me: “no way, it’s absolutaly benign. We just monitor it, no one makes mastectomy because of PASH”. WHo is right? I’m a little bit confused.
At this moment I have several lumps in left and only one in right. The radiologist told that if the situation will be stable, then we’ll just monitor. If there will be new lumps or the existed lumps will grow, she will suggest the surgery. The US and mammography weren’t able to found anything, so the needle biopsies were made under MRI. The breast is still painful because of biopsy.
Is PASH disease at all? How monitoring (US and mammography) could help if in my case the lumps are seen only in MRI?
I’ll be happy to know more about PASH, but It is so hard to find some reliable information. Could you tell me more about yourself? about PASH in general?