Anyone with Pseudoangiomatous stromal hyperplasia (PASH)?

Hi @fronterae, I'm tagging fellow members @casa @flowergal and @katnotcat who I think may have experience with seeing pseudoangiomatous stromal hyperplasia (PASH) on a pathology report.

Your appointmet with the breast surgeon's office is coming up soon. Have you started a list of questions? Is the primary reason for the appointment to discuss options?

Hi
Having my second MRI w/wo contrast tomorrow morning (Wed). Original one in March and month later radiologist scheduled a double biopsy on the left breast. Came back positive for PASH. Appointment with surgeon next Tuesday. Limited in respect to obtaining further information and guidance on options. Left side is already larger than right. Also intermittent pain. I’m assuming meeting with surgeon will be to discuss options and all I’m able to find is lumpectomy or possible mastectomy. Would love to find out about others that have had surgery or other options. Thank you

Hi kato902, thanks for your response! In the same breast I have ALH, focal flat epithelial atypia, columnar cell hyperplasia with. Microcalcifications. I’m also with pain in my breast. I went to my appointment with the nurse practitioner and I will have in December a diagnostic mammogram and a second MRI to see if I have any changes. She told me to consider the tamoxifen, but I’m not sure if I’m taking it yet because all the side effects.
Please keep us posted!

Thank you and yes, I will. They approached me with consideration of possible using the tamoxifen and my answer was no-to many side effects. Do take care

I would like to tell you both @fronterae and @kato902 that I took 5 years of tamoxifen and really the only side effects I had were related to the lack of estrogen, not the drug. Hot flashes, dry skin, etc….. there are tens of thousands of women on this drug. Unfortunately the forums are full of those that do have issues, because the ones that don’t have issues also don’t post about it.
The best advice I was given was to try it and see if I could tolerate it because it would lower my risk of dying from breast cancer. You can always revisit this if you do have issues. I am not going to say it was perfect but I believe the cost vs benefit was worth it for me.
I don’t know what all you are dealing with from the diagnosis, but I am praying for a good outcome for you.
You both discussed surgery and tamoxifen, are there other treatment options for you?

Hi
Thank you for the well wishes but what is most difficult is finding information on PASH. Down side is I’ll have to wait to have a discussion with the surgeon and see what options there are. The tamoxifen was mentioned to me prior to being diagnosed with PASH. I’m allergic to so many meds that I carry a list with me plus I had a complete hysterectomy when I was 26 and have been on estrogen ever since and still have issues with hot flashes. I always attempt to educate myself to the fullest and in this respect I’m able to be my own advocate and able to have an educated discussion with my physician but this time I have a minimal education on PASH. I’ll update after I have my visit and results of this morning MRI.

Thank you and truly appreciated.
Still waiting for the MRI results. Did have my visit with the surgeon but unable to discuss new results. At this point she doesn’t plan on doing anything other than an appointment in 6 months with a screening mammogram and MRI w/wo contrast in a year. So it’s a wait and see.

Thank you but I’m truly concerned with the last results of my MRI. The radiologist stated that whatever showed up in the prior two MRI’s plus biopsy, and prior abnormal mammogram no longer exists even though the mass I have, which was diagnosed as PASH, is > 7 cm (i.e. size of a peach) isn’t there any longer. Really - I can feel the mass, all my doc’s can feel the mass - so what gives. I’ve spoken to two nurses and one PA (and he stated don’t worry nothing is wrong - really he was the one that scheduled the first MRI because of the abnormal mammo and felt the mass) and they all tell me - be happy nothing is there and what you feel is just thickness. No one is willing to have the latest MRI re-read by someone else. How can 3 different reading from 3 different radiologist, pathologist be wrong and one be right. The pathology reports had RAD 4 now it’s a RAD 2. I’m obtaining copies of everything and will look for a second opinion. Any suggestions? Thank you

@Kato92 I had PASH show on a biopsy. I was told it is a benign lesion. It seems a lot of the literature out there states it is rare but I have heard of it found on many people's biopsy so not really sure how rare it is. Keep us posted and positive thoughts your way!

Cleveland clinic has a decent article about it:
https://health.clevelandclinic.org/my-biopsy-shows-i-have-pseudoangiomatous-stromal-hyperplasia-pash--now-what

Hi
Thank you so very much and I’ve scheduled an appointment with my internist whom I originally saw for the issue. It took 7 days plus a phone call from the surgeon to obtain results of my MRI w/wo contrast. Still wondering if this new pathologist misread or reviewed someone else’s - how can mammo, two MRI’s and biopsy with RAD 4 now show absolutely zero and RAD 2.
Plus information me that there is no plans of doing anything other than screening mammo. I’ll check out the Cleveland clinic info. Most recent info that I found was a notation that approximately 25% of the women that have been diagnosed with PASH. The original pathologist informed me that the normal MRI showed no indication of any issue, but with the contrast it lite up. Interesting.
Again, thank you and truly appreciated. See my internet’s on the 9th. I’ll follow up at the visit. Obtaining all my MRI’s