22 year old with PASH

ljgs

Hi, ladies. I'm the concerned mother of a 22 year old who was diagnosed with PASH last year at 21. She has been on and off the pill since her mid-teens for polycystic ovary syndrome, and about a month before finding the lump she had taken the morning-after pill. I don't know if her PASH is hormone related. She saw a breast specialist over Thanksgiving and again over Xmas when she was home from college because she thinks it's getting bigger. He is urging watchful waiting. If the lump is enlarging, I fear she may need surgery--although she won't be back in NJ till late June. Right now, I plan to schedule a second opinion appointment with a specialist at Sloan Kettering here in NJ, but I'm a little scared by all the talk of mastectomy as a result of PASH. Please help put my mind at ease. There is no history of breast cancer in our immediate family, and I do not have the BRCA gene. Thanks.

DG10004

Hi there! I know you are looking for something to ease your mind, but I cannot stress the importance of an abundance of caution when it comes to this sort of thing. Many doctors will tell you that your daughter is so young that there's nothing to worry about, or that a PASH diagnosis is 'good news' in comparison to what could be, but I was diagnosed at age 24 with PASH and I feel as though doctor after doctor let me down. I did in fact have PASH, but in all the screening and imaging that was done, everyone still failed to detect my cancer!! I've shared my story with many young women (and lots of times on this site) because I want to help others who are in decision mode choose the best options and treatment possible. I got lucky in my diagnosis. The way things played out literally makes it feel like shear luck saved my life. I know that it wasn't just luck though... I trusted my gut feeling and did what I thought was right and that's ultimately what saved me. I wish the very best for your daughter and I hope that hearing my story helps you make the best informed decisions you can!

During the summer of 2018, I found a lump in my breast. By October 2018 I had been convinced by friends and family to bring it to my gyno's attention. I had an ultrasound and was given a BI-RADS 4 classification (suspicious findings) by the radiologist, but was told by my gyno they were just being overly cautious. Since the findings were recorded as suspicious, I had an MRI. From there, I was told by several doctors the mass is "likely a fibroadenoma" which is both common in young women and benign. At this point, the mass felt, acted, and looked benign but I still needed a biopsy. I had the biopsy in November 2018 and from this, I was diagnosed with PASH. My surgeon didn't seem to know a lot about PASH but she really encouraged me to get it taken out (which I later learned is not the approach often taken) despite it being benign and only 2.5cm. She said it could continue to grow, become an nuisance, and ultimately require a larger surgery in the future. Best to nip it in the bud, I thought. I already dealt with one rare, benign tumor disease and had 5 surgeries to get that one removed for good! So even though PASH is benign, I just wanted this thing out and over with. Let me say this: I'M SO GLAD I OPTED FOR THE LUMPECTOMY. It turns out the surgeon hadn't collected a large enough sample size and beside the PASH, I had breast cancer!! I couldn't believe the diagnosis. I was 24 years old at the time and was reassured by doctor after doctor I had nothing to worry about. I even got a second opinion on the PASH diagnosis because I was suspicious of the mass and the possibility of it being connected somehow to the aggressive fibromatosis mass I had in my leg as a teenager. That breast surgeon too said everything pointed to PASH. It's mind boggling to me that what I really had was invasive ductal carcinoma... stage 2B, HER 2 +/ ER, PR - with lymph node inclusion.. fortunatrly. I'm done with my treatments now and doing well, but I simply can't imagine what would have happened if I had chosen the "wait and watch" approach to my PASH... 6 months from the biopsy, having been stage 2B already... who knows where I'd be today. I'm sure I am the exception rather than the rule, but when it comes to PASH always keep an eye on it. Most doctors will insist PASH does not cause cancer, but it's still up for debate as to whether it is correlated to cancer. I also heard from my new (much better IMO) breast surgeon that PASH shouldn't form a hard, solid mass as it did in my case and that if it does, that should be considered a red flag. So please... Trust your gut, don't become complacent, and always follow up!!!❤

Chemistry91

I also have PASH and I have suspicions that it was hormone related. The second opinion is a good idea and if it’s tumerous pash they will likely recommend removal of the lump. I hadn’t mine removed and they removed quite a bit of tissue but adjusted the other breast to match. Hope you’re daughter get an good news!

Mherk

are you in NJ can you let me know what doctor you used?

MinusTwo

Mherk - you may not get an answer since this thread has not been active for more than a year.

ljgs

Yes. We used Dr. William Diehl at Summit Medical Group.

Mherk

Thank you so much. I’m using RWJ Rutgers right now and I have diffuse pash in both breasts. I’ve had a core needle biopsy, and two excisional biopsies. I’m getting ready to go in for a third. I am very concerned because my breasts keep growing and they are very heavy and hurting. My doctor wants to put me on tamoxifen to see if it will help and I’ve asked her for a double mastectomy and she keeps steering away from that.