PASH

ml8

Hi everyone. I'm new to breast issues but a veteran in health issues. I am 27 years old and have an undiagnosed type of connective tissue disorder so now I get to add PASH to my list of rare genetic conditions. I was just diagnosed with a 2cm benign PASH. The doctor is having me see a surgeon next due to their fact that it's palpable. However, with the connective tissue problems and controversial topic of whether or not to extract the PASH, I'm not sure what to do. I've been told not to have surgery unless absolutely necessary. I've seen people say that they waited and it grew wishing they just took it out when it was small. Anyone have suggestions? I want to make the most informed decision I can.

Chemistry91

I am sorry that you were diagnosed with PASH. I also have this rare disease. I am not sure of your other health concerns, but it is my understanding that PASH can be left alone with a wait and see approach. I just read a study in PUb Med regarding this. I had mine out because it had grown extremely large.

ml8

Thank you for your reply. I see the surgeon in two days. I'm hoping the appointment steers me in the right direction.

JRHannah

Im new to this so please bare with me I'm just looking for some support and trying to get some answers . I found a lump on my breast in early August I have gone through and have had 2 Ultra sounds, a mammogram and a biopsy. Which came back with the results that I have Pash and the tumour is 4cm. I am in alot of pain with it I have 3 small children and it hurts to have them touch me the wrong way or wear a fully supported bra. Since August I feel it has got harder and larger. I met with a general surgeon yesterday who did not seem to helpful at all. Didn't let me speak to much .when I told him I was in quite alot of pain with it he didn't seem to care to much. And said they would look at it again in a year's time. I'm looking for some advice as to what others would do in this situation. I also don't feel comfortable leaving it inside me while I already feel it getting bigger and like I said before in alot of pain. Thank you!

Lindsay18

Hi there

I was just diagnosed with PASH today...it’s pretty darn big...about the size of a medium Apple...and it grows significantly with my monthly hormones.

The DR basically told me not to worry about it...but it’s huge...and I never even heard of PASH until today!

Moderators

Welcome, Lindsay18 and JRHannah! We just wanted to welcome you to our community. We're sorry for what brings you here, but we hope this can be a supportive place for you!

The Mods

Sasu

Hello-I just wanted to give you my two cents worth-you n ever deal with a doctor or surgeon who doesn’t listen to you and address your concerns. If it hurts, they need to find out why. If you don’t want to wait a year and “see what happens”, don’t. Second opinions are a reasonable request. Never deal with a doctor or surgeon that doesn’t listen to you! Ok. I am off the soapbox-for now

DG10004

I don't want to scare you ladies too much, but I do want people to hear this as a cautionary tale about my experience with PASH...

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. So ladies, again, 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!!!❤

Lacs93

There is a chance it can grow back as mine did.

CarlaLea

Hi all, nice to find this as I have just been diagnosed with PASH and not much info out there so thank you

My left breast suddenly looked big 5 weeks ago! I thought it was hormonal as period and recent removal of a Mirena IUD. Anyway looked really big so went doctors week later. Had mammogram, ultra sound and biopsy which say PASH and lots of cysts. No malignancy. I see a surgeon tomorrow.

My tumour is 10.4cm x 9.5cm by 4.1cm. So it's big. But it came sudden. One boob just looked suddenly bigger! They said I had busy boobs as both breasts have lots of cysts too. The discomfort is getting worse so I fear it's getting bigger as 2 weeks since measurements. The weird pains are in various places within my boob but I ache around my side and back frequently. When I lie down my sternum hurts and last night my spine.

Does anyone else get this discomfort? I hope my surgeon appointment tomo is ok, I think I just want it removing asap

Moderators

Dear CarlaLea,

Welcome to the BCO community. We are sorry for your diagnosis but glad that you reached out to other members who are confronting the same situation. If you don't hear back from anyone in a timely way you can also do a search for "PASH" using the blue tool bar and it will reveal other threads that have been started on this topic and other members for you to reach out to and to connect with. You can always send a private message to a member to whom you have questions. Let us know if we can be of more help. Good luck with your appointment tomorrow and keep us posted on what you learn.

The Mods

Chemistry91

My PASH tumor hurt as well. More so at various times of the month. If it is growing rapidly it is likely to cause pain. I had mine out and this far it hasn’t come back.

CarlaLea

Thanks glad all good for u now. my tumour is due to be removed on the 20th June

CarlaLea

Thanks for this. My tumour is hard and appeared very quick. Now 10.4cm by95 by 41. Its being removed on the 20th june. My last period seemed to aggravate it and not sure if its grown more. Glad to be having it removed

Chemistry91

Good luck with your surgery! I’m sure it will go fine and you will be happy to be rid of the tumor.

Lacs93

There is definitely not enough information out there about PASH and not many specialist's who truly understand or can empathize the rare severity it can have.

I was diagnosed in 2012 and have battled with bilateral tumorous pash ever since. It took several months, 3 hospital stays, 3 months of antibiotics and finally a complete lumpectomy (which grew back) sent to Boston to get the diagnosis. I have only found maybe 30 documented cases world wide of this severity. The only treatment that worked was Tamoxifen. Without it my breasts would grow rapidly, multiple lumps, complex cysts, hardness in certain areas and SEVERE, life altering pain in which I was taken out of work because of on several occasions. I stopped the Tamoxifen after a year and a half and 3 months later everything came back. I was put back on Tamoxifen until last year when I started having TIA's. The specialist in Boston felt the TIA's was caused by the Tamoxifen and had me stop it immediately. I was terrified it would come back which it started to. By coincidence I was having a hysterectomy and asked to have my ovaries removed also to prove it was hormone related and it definitely is! Being put into surgical menopause and having psychological symptoms after several months I started the HRT. Now it's all coming back again, the rapid swelling, pain and nodules. At this point I don't know what to do. I need an experienced specialist that has a true understanding of my condition! Any recommendations?

NoskiChar

Hi there, was just diagnosed with PASH. My history includes a tubular adenoma first diagnosed by biopsy in 2017. This year, I went to my mammo in June. They said everything was normal, THREE days later, I have a large (for me) lump show up on my left breast. Takes a month to get me in for another mammo and on 7/5, I had another biopsy which gave me the diagnosis of:

PERIDUCTAL FIBROSIS AND FOCAL PSEUDOANGIOMATOUS STROMAL HYPERPLASIA

No talk of my TA at all. 3 samples were taken and my lump is now the size of a golf ball. It does not move freely as others have mentioned. I am 39, have been on no hormones since I had my last child 5 years ago.

I am seeing the surgeon for a consult to get this removed, as my doctor, who had no idea what this was, said biopsy doesn't see everything and this could be hiding malignancy. Can anyone give me advice on questions to ask? How do I get referred to a breast specialist within the American healthcare system?

Chemistry91

Hi NoskiChar,

Sorry that you are dealing with PASH. While benign it is stressful since many doctors are unfamiliar with it and unsure of how to treat it. I am not sure how to go about getting referred to a breast specialist. Does your insurance require you to do so? When I was diagnosed I began seeing a breast doctor, breast surgeon etc. and it made a difference in my treatment. They were aware of PASH and reassuring that it could be treated. PASH that grows quickly should be removed. However PASH itself is not malignant and as of now does not increase your risk of developing breast cancer. You should ask how they will know they got clean margins once it’s removed and how it will be monitored in the future.

NoskiChar

Thank you for the reply! I actually saw the surgeon today. Thankfully I lucked out and was sent to one of the #1 breast surgeons in Sacramento.

She said both my biopsies were done in the margins, no one ever biopsied the middle of the tumor. She said from what she can see on my images, she is worried.

I have tentacle feelers coming from the tumor and the rapid growth plus the irregular shape all point to cancer for her. We are taking it out next week. She said she is coming up with a plan on where to place the scar in case I need a mastectomy afterwards. Her nurse told me that if the doctor says it doesn't look good, it generally isn't. So now we play the waiting game.

Chemistry91

I’m glad you found a good breast specialist and that it is coming out. PASH can be weird and grow quickly. I hope that is what it turns out to be. Prayers for you.

NoskiChar

Thank you. I will post my update once I know what is going on, in hopes of helping anyone else out.