I havent beenon here for a while as my treatment is all finished but I still like to read information on here.
I was diagnosed with PASH 3 years ago and went though a really rough time as no one knew what to do with me nut in the end after months of pain and tests I had my first Mastectomy and at the tim pleaded with the hospital to do both at the same time as i already had a lump in my other brest but they refused but 6 months doe the like I had to under go my second Masectomy.
I have since had my reconsturction and have slowly gained the strenght back in my arms and are really pleased to be back swimmimg again after a long period.
I know first hand how hard it is to get answers and information so if anyone out here has questions or concerns please feel free to ask away.
I wish everyone suffering with this condition all my thoughts xxx
Thank you so much for your reply it has been really helpful I am currently just monitoring it and recording how painful it is each day until I go back to the consultant! Xx
I’ve just been diagnosed with pash, but didn’t know I had it until yesterday, when I received a copy of the consultant’s letter to my GP.
When I first saw the consultant he was very reassuring and explained things well, but when I returned for my biopsy results, I saw a different doctor, who used medical terms I didn’t understand and when I asked for an explanation he used different medical terms. Once I got that the lump was hyperplasia, and what that meant, he then insisted on reading out stuff from my file that made no sense to me, although it did include the words “breast architecture”! I asked for, but didn’t get, a translation and I gave up trying at that point (totally out of character for me – I blame the stress!) and decided to wait for the consultant’s letter to my GP. The doctor even laughed when I asked if it was likely to become cancerous, which was upsetting, as to me it seemed a perfectly reasonable question in the circumstances. Its been a bit of a shock to now find out that this is pash, not “just a lump”.
I’m very fortunate in that I have a small lump (6mm) which isn’t being treated in any way, but its still concerning. Reading all your experiences and information has been really helpful and I thank you all for sharing them. However, I’m not sure how likely the lump is to grow, whether I’m likely to get more lumps (eg in the other breast), and whether I should be asking for more regular monitoring than the standard three-yearly mammogram, (although being so small this lump only showed on an ultrasound scan).
Sorry this is such a long post – I think I’m off-loading as much as anything.
Hello, I live in North Carolina, USA, and was diagnosed with PASH on Sept 1, 2016. My mammograms had been showing a mass in my right breast for several years will small growth, and the radiologist had been monitoring it without telling me… This year after them noticing significant growth I was asked to come in for a second mammogram, ultrasound, and biopsy of which pathology report diagnosed as PASH. Radiologist recommends that we monitor it for another 6 months, and if any increase in size an excision is recommended. I have found very little information about PASH, and am a little apprehensive about waiting and watching another 6 months, when my radiologist has told me that they have already been watching it for several years. I had no idea the mass was there until it was brought to my attention in August with the request of further testing beyond my normal yearly mammogram. Ever since my biopsy on August 31st, my breast has become more tender, and hurts now on a daily basis. It’s like the biopsy has aggravated the tissue…
Thanks for everyone sharing your experiences, and information. Does anyone on here have any advice for seeking an experienced physician with PASH in the Southeastern United States?
Gretabum, I would find a doctor that will take it out. I was told the exact same thing (we will watch it for 6 months and if it grows we will excise it). After 6 months the doctor told me the PASH was too diffuse to excise now. They told me I’d now have to have a mastectomy if I wanted it removed because that is the only way to get it all. If you can get a lumpectomy now, do it. Also, increased nerve pain after the biopsy is normal. Give that a few weeks.
Has anyone had experience of PASH suddenly doubling in size and being incredibly painful? I was diagnosed 4 ish years ago and things have been fairly stable/predictable until this week. Wondering if it’s possibly cysts within the lump and if anyone else has experienced anything similar? GP appointment made… Many thanks
Hi, new here I was diagnosed with lash last year. It gets larger around my period then smaller as the weeks go on. I just found another tiny lump on the other side of my nipple. First one is on the other side. It’s small but just noticed it. Has anyone had multiple lumps? I’m trying not to freak out but there just isn’t any information on pash. If it’s common to have multiple lumps etc
Hi! I’m in North Carolina US and I was just diagnosed as having a small 3mm PASH.
I have a history of breast cancer on my dad’s side (his sister and mom), uterine and prostate cancer on my mom’s side (herself, brother and father)
My boob doc said I cannot have any hormonal treatment or I will get cancer - that PASH was a warning sign.
The radiologist wants to biopsy the other side of my left breast to make sure all of the PASH is out.
Hormonal treatment because I am 42 and haven’t had a period for a year (IUD gave me ovarian cysts after 10 years)
NIH and Mayo Clinic just say that PASH is a benign thing and won’t turn into cancer… But 2 docs in person confirmed no hormonal treatment for perimenopause.
Hello…
LOL I am 43 and I was diagnosed in 2015 with the pash disease however, it was never discussed with me… I went to Winchester breast Care center and I’ve been going there for over a decade and have had multiple MRIs, mammograms ultrasounds and fine needle aspiration as well as a biopsy. The last time I was in there, the doctor I’ve been dealing with looked at me and told me “there you’ve diagnosed yourself.” When I mentioned that I knew my hormones played a role… I literally wanted to scream… The fact that she could be so unprofessional and gaslight me like that literally made me sick to my stomach. My grandfather had multiple different types of cancer and my grandmother had pre-cancerous polyps as well as other family members including young ones that have died from breast and uterine cancer. To me, it is alarming that they haven’t done the testing further than just the basics and when I read up my pathology report the cell block was incomplete because she didn’t have a big enough sample. So therefore we have no idea what that fluid was and they diagnosed me but never discussed it. So therefore I have been in pain with over a golf ball sized. Fibroid tumor/ cyst in my right breast that has definitely spread further to the right side near my armpit… I even spoke to one of the nurses who tried to tell me I had the procedure done in 2019 LOL and literally was arguing with me about it… I’m like I think I know when I had a procedure done…lol
I have breast implants and have to have multiple mammograms as well in one session so they will do four with and four without the implant… on each breast. I have had blue rain fluid for well over a decade and definitely during the times where you can feel your hormones dipping is where it will be even more sore. Coming here and reading everyone’s responses has really helped me because I just feel so helpless… You read all the literature about pash which literally is the same thing written in a different lingo LOL. But when you look up misdiagnosis sometimes pash can be around the exterior of an actual cancerous or pre-cancerous tumor. So to know that they just stopped any further testing other than the basics while I would come in every 6 months and express my concerns and physically and emotionally be upset because of the fact they won’t do anything for me. One of the nurses thought I’d spilled Coke on myself when it was discharged from my breast after my mammograms… But they gaslighting tell me I don’t have cysts even though I have cyst fluid.
I apologize if I sound very kurt. I Have extreme ADHD and sometimes just trying to stay on topic and have it all make sense. Can sound robotic… lol any more information or follow-up information from you ladies, I would love to hear it!
Yes I have cysts. I’ve had a couple fine needle aspirations and a biopsy back in 2015 where I was diagnosed. However they never told me I was diagnosed with pash… they just said I have very fibrocystic breasts… but I definitely have at least a golf ball if not a lemon in there and it’s starting to spread a little bit towards my armpit area… I go in every 6 months and I’ve even requested an MRI and do for my second one soon. And due for my second one soon . The breast surgeon I was seeing. I recently requested to see a different one because she literally looked at me and told me there you go. You diagnosed yourself. When I mentioned that I knew my hormones obviously had some relation to stuff, but expressing that it wasn’t normal to have a decade of breast pain and a lump that continuously grows and constantly expresses fluid, green, brown and clear. I finally had it this year and let them have it at the office and spoke to one of the nurse practitioners and expressed my displeasure with how I was treated and how I’ve been ignored in regards to my treatment and how they haven’t shared anything with my primary care or OB and that all of my cases should be linked under my health online… literally if you don’t speak up for yourself and demand they will let you sit and Fester in pain unless you just happen to come across a really excellent team… when I get more information I will come back and let you know…
