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Pseudo-angiomatous stromal hyperplasia (PASH)

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Rochelle,

 

See my replies to Bren...and if you scroll down, you should find a posting by me with a link to a medical journal article on PASH.  Let me know if you have questions after reading my other posts.

 

Cheryl (kkisamu)

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Bren,

 

Just saw this today.  My procedure to remove the PASH was an excisional biopsy, not a partial mastectomy.  My procedure had a much easier recovery period.  The pathology came back within 2 days of the procedure (which was entirely benign PASH...thanks for asking!).  Remember, PASH is always a benign diagnosis.  The concern about PASH is that it sometimes resembles an angiosarcoma cancer and to be sure it's not they do a sterotactic biopsy.  In my case, that biopsy showed it was PASH.  My concern was that the PASH can also  hide a tumor that can grow behind it.  I was given the options to either follow it with 6 month mammograms or remove it.  Mine had grown and changed in the past year and my doctor recommended its removal.  The follow up mammos would have required the radiologist to not only compare the size and shape, but also the color.  So now I would be relying on a radiologist's interpretation of different shades of white...I didn't want to rely on that. So I had it taken out. But it was a very minor procedure.  Better than the sterotactic biopsy, in fact.

 

The PASH itself won't harm you.  In fact, women with PASH have a slightly lesser chance of developing breast cancer...however, it can hide cancer that may develop. 

 

You need to do what makes you comfortable.  But don't be too afraid of the PASH.  It is benign.  Good luck and let me know what you end up doing.

 

Cheryl

RochelleMcC
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi! I got diagnosed with an 8 cm pash tumor in my right breast 2 years ago. It has grown and my bs doesn't believe it needs to be removed. I go this week for my diagnostic mammogram and ultrasound to see if there are any more changes. She doesn't seem to care about it and I'm wondering if I need to get a second opinion. Since there is not much known on pash tumors, I would like peace of mind. Thanking u in advance!
Rochelle
Bren711
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

hi Cheryl..did you get your path report yet? hoping all is great!
Bren711
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

I am having surgery Tuesday feb 5th for a partial masectomy. I saw a new Dr on Monday and she didnt seem to concerned..I guess thats not a bad thing. she said there is "FOCI" in the lump which means a little pash and has no chance to grow, (which I did not understand because it has since Oct) and she would not remove it if there was no "pash" in the lump. shes basically doing it for my peace of mind.

I just want it out....yes, peace of mind.. are they ever 100% sure its nothing else?? no....

 

not sure if Im going to like this dr but maybe I am over reacting about PASH

Jo_BCC
Member
Moved:

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Bren711
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

hi Cheryl

glad its over for you. My pash is located around 12:00 ABOVE my right breast, not even in it. Its more in my chest. I just got all my records from my breast dr to bring to new one and in it said "2012" this patient has such dense breast an MRI is recommended.. she never told me and I never had one. unreal.

Also, when I pointed out  the lump to her she did ultrasound said it might be pash and report said she only did biopsy because I had anxiety over it.. what dr doesnt do a biopsy on a big lump? so glad to be done with her.

thank you for taking the time to inform me. this is all very new.

 

Brenda

 

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Bren,

 

I have very dense breasts too.  Strangely, the PASH only showed on mammogram...not really in the Ultrasound (which I always have due to the density).  I also had an MRI but still, it was the mammogram with the most info.  After that testing, I underwent a stereotactic biopsy (which is done while you are in the mammography machine...you are given local anesthetic so after the initial discomfort of the continual mammogram and prick of the shots, you are really numb and don't feel the biopsy part of it.)  The recovery from that biopsy was harder I think that from the surgery itself (2 months later).  I had some bleeding and hematomas formed after the stereotactic biopsy which didn't happen following the surgery.  During the stereotactic biopsy, 6 core samples were taken and all 6 showed PASH so we were pretty comfortable going into the surgery that it was benign. They also put a metal clip in the spot where the PASH was for easy identification later.  After healing for 4 weeks (no lifting items over 5lbs. for 1 week...harder than you think! Gallons of milk, laundry, big pocketbooks are all out!) we scheduled the surgery for earlier this month which gave me about 2 months of recovery time between procedures.  The surgery is called an excisional biopsy and is 2 steps.  First, they put me back in the mammography machine and did the local anesthetic again followed by inserting a very thin wire to hook onto the metal clip left in during the first biopsy.  The surgeon follows the wire in during surgery to find the right spot easily.  That was an easy procedure.  Then I was immediately wheeled to the operating room and was under general anesthesia.  The excisional biopsy only took 45 minutes. Recovery time for me was easier for the surgery...still no lifting over 5lbs for a week, but I bounced back pretty quickly and felt completely myself in a little over a week.  I have a 2 inch scar, but I think it's going to fade quite a bit.  The PASH that was removed was about 1.5 inches. 

 

I have to say I was very worked up about the surgery part, but it was easier than I thought it would be.  I'm glad to have it out.  I would tell you what my path report said, but I don't have it with me.  But it was definitely PASH, so all benign.  Good luck on Monday, and keep me posted. 

 

Cheryl (kkisamu)

Bren711
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

hi cheryl

thanks for responding! I feel like I needed to changed doctors as of this morning believe it or not. I kept feeling a nudge to do so after having the same breast dr for 10 plus years. after talking to the nurse at the new Dr's (whom I have know for many years) she even agreed PASH should come out. 

may I ask how the surgery was and recovery?

I see the new dr Monday Feb 2 and bringing all my records. My breast are very very dense, even my mammo results said breast are too dense for sensitivity imaging. this new place does imaging with contrast.

So I feel better about my decision..

my path report said the fibrocystic changes consist of mild to moderate duct dilatation and moderate stromal fibrosis. within the stromal fibrosis there are foci of increased cellularity consisant with pseudoangiomatous stromal hyperplasia.

 

This dr believes in removing the pash, so Im sure I will know monday what is going on.

I will update then.

Hope you are doing better!

janet123
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Cheryl,

 

Thank you, I will pass this along to my sister.  My sister is in her 40's and in Perimenopause.  She has multiple lumps and would need a mastectomy due to the size and locations.  She did have a biopsy as well.   I am so glad that your surgery was easy and painless.  Warmest regards!

janet123
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Bren,

 

Thank you for the information.  She is scheduled for another MRI and will be seen by a team of doctors in the Mayo breast clinic after the scan.  I guess we will waite to see what the doctors think this time.  It is hard to decide what to do when there is little research out there.  Keep me posted... I know the waiting can be stressful and difficult. 

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Janet,

 

Your sister needs to get a second opinion.  I had my PASH surgically removed earlier this month.  It never caused me pain, but I was advised to have it removed for several reasons.  First, the PASH looks similar to an angiosarcoma (cancer) but it's benign.  The only way to be sure though is to biopsy it.  In my case, a sterotactic biopsy took 6 core samples, and all findings indicated PASH, but they can't be sure that it isn't hiding an angiosarcoma until they remove it.  The problem with PASH, is that its presence can hide a cancerous tumor and it can provide cancer a friendly environment in which to thrive.  The surgery (an excisional biopsy) was very quick and the recovery has been quite easy.  With your sister's family history and BRCA gene, I strongly recommend a second opinion.  I can't imagine a scenario that a Dr. wouldn't want to take that out.  If you look below, I posted a link to the only real study that's been done on PASH. Btw, I am 48 and not menopausal, so I can't answer your question about how menopause might affect the PASH.  Good luck to your sister.

 

Cheryl (kkisamu)

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Bren,

 

I just went back in this thread and didn't see a prior post from you.  Could you repost your question?  I just had my PASH surgically removed earlier this month.  I don't know if I can answer your question but I'll try.  I posted a link to the only real study that's been done on this...you can see it on my prior post.

 

Cheryl (kkisamu)

Bren711
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

hi I have been waiting for a reply to my thread for awhile. I guess this isnt the place to get a response on PASH. I was diagnoised last month with it and Im seeing my breast surgeon Tues the 3rd of Feb for another ultrasound and asking her to excise it out. there is a lot of info on the web but it all says the same thing. I guess if I was your sister I would get a second opinion seeing she is in pain, there is no reason why a DR would not take that out..

Hope you find out more info

janet123
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi everyone,

My older sister last year found out that she has PASH.  She is going to one of the best/ top hospitals in the United States; but they seem somewhat clueless.  PASH has now spread into the second breast.  She is in terrible pain and cannot sleep at night.  She cannot drive in the care for more then 20 minutes and has to rotate between standing, lying, and seating positions to avoid severe pain.  She wants to avoid taking narcatoics.  Any suggestions? The over-the-counter pain medication has not provided much relief and upsets her gerd (reflux) caused by the pain medication use.  The litocane patches don't seem to help as well. 

 

We have a family history of breast, endometrial, and colon cancer among the women.  She has also tested positive for the BRCA gene.  I have yet to be tested and haven't had my mammogram.  Her doctors have told her that it is best to avoid surgery because....  In many cases, the pain does not go away and in 25% of cases can get worse.  What is your experience?  Also, I was wondering if any expierienced a reduction in tumor size once past menopause or if the tumor stopped growing for a short or long period of time.  Warmest regards and best wishes!

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi louise I have sent you a private message xxx
bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Louise,

I totally understand how you feel i still very embarrassed;by my breasts as the second mastectomy didn't go to plan and I have had nothing but problems and my breasts now are so disfigured;Im just hoping I get a date soon for my expander to be replaced with my permanent silicone implants but I keep phoning the hospital and speaking to the consultants secretary but I keep being pushed further down the list as im not an urgent case but to me its very urgent!!!!

I live in Co Durham so I am under at Durham University Hospital but I have now asked for a second opinion as im sick of waiting so I have asked to go to a hospital in Newcastle so we will see!!!

It would be lovely to get in touch so please feel free to email me at


Speak Soon

xx
kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Louise,

 

I have small breasts...A/B cup size.  I am told the PASH is about 1.5 inches long plus they also remove clear margins to be sure there's nothing else there.  At the moment my breasts are the same size, but I'm afraid that won't be the case after the surgery.  I am in the US so I can't answer your Nhs question.  There are so few boards out there with PASH info, I ended up on this UK site.  Sorry!  But I'd be happy to try to help...I'm in the same boat you are.

Louise21
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello bugie

 

It's so confusing....just wish there was more information.  I am 35 so like you its not the Menopause yet! 

 

My pash is in my left breast....I was an equal 32g but now my left breast is a 32hh / 32j. So I am now 3/4 cups difference. Its so heavy and I feel so achy after any type of exercise.  Buying bra and clothes is such a stressful situation and I get really self conscious.  Its hard to describe how I feel but im not myself....

 

Where are you based in the uk? Can I ask who your consultant is? 

 

Louise x

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi louise,

 

I can understand your confused I was and still to this day I feel like I still dont have all the answers.

 

My Pash was so large Ive had to have two mastectomy to remove it all, When I first found the lump i was a 36DD on both sides but over a short period the right breast grew very quickly to probably two sizes bigger and the pain was unbearably so this is when the decision was made to remove the breast then 6 months later the other breast did the exact same thing so the I had this on removed also, but I think I was an extreme case.

 

I am only 34 years old so I know its not linked to the menopause and the NHS have funded my treatment.

 

Please fee free to ask me any questions and I can I will try to help.

 

xxx 

Louise21
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello kkisamu
How are you? I had my follow up appointment today and I am still confused. Can I ask you a couple of questions?
What size are you...ie cup size and difference between your breasts
Is the Nhs funding your treatment?
Louise
Natmand
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi everyone, I was diagnosed three weeks ago with PASH from a core needle biopsy. This was performed after irregular findings on a ultrasound regular check up....nothing showered on the mammogram. I have seen a breast surgeon last week and he is going to remove it next Friday. Has anyone has it surgically removed? What are outcomes I can expect? Anything you can tell me would be great, it seems there is not enough info out there.
kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

After reading through these posts, and having recently been diagnosed with PASH (which is being surgically removed in January 2015) I have done some research I wanted to share.  It's a 2010 medical journal article, which can be found here:

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2953577/

 

The most interesting findings are that women with PASH actually have a lower incidence of breast cancer (5.9% vs. 9.3% in the general population) HOWEVER, if breast cancer does develop, it is likely to develop on the side which has the PASH and for some yet unknown reason, the presence of the PASH provides the cancer cells with a friendly environment in which to progress.  It is my understanding from my doctor, that the PASH itself is a benign thing...it will not transform into cancer.  It can, however, hide a cancerous tumor, and as noted in the journal article, can provide a happy place for cancer to thrive. 

chrissy6302
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Just found this site and joined. I was diagnosed with PASH a few months ago and cant seem to find any information on it. I have had many ultrasounds of lumps in my breast and started having discharge from the nipple. I had a mammogram and untrasound done in June and then a core biopsy which resulted in the diagnoses.

They are rechecking it with a mammogam and ultrasound on December 26th and if the mass has changed or grown they want to remove it. I have a lot of pain in that breast at times. It comes on suddenly and will stay for a few days then goes away.

Im just glad i found this site and and have others who know what its like.

 

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Maryann,

 

Im sorry to hear your news, I am in a similar situation i have been under the breast consultant for nearly 2 years now after going back and too to appointments with Pash, after I was diagnosed I was so fed up and in so much pain i was given my option's of tablets to stop all hormones or a Masectomy. I chose the Masectomy option as I was so fed up and so fed up of being in pain. At the time of the operation back in September 2013 I had imidiate re construction and had expander implants so then had to start the prosess of in flation after several months of recovery time. At the time of my Mastectomy I asked the surgen to do a double Masectomy but he refused saying the othe breast was healty but it clearly wasnt as I had already decected a painful lump but was still told no. 

9 months later I went back into to hopsital for my second masectomy as it was then agreed it was pash in the other breast so again i had the expander implant so I am now at the point were both breast are fuly inflated and I am awaiting another operation to have them replaced with silicone implants but im just keep getting pushed futher down the list, I was initialy told it would be 3/4 months after the last inflation but after speaking to the hospital last week i have been told it could now be 7 months!

I am totally fed up as my life has been on hold for 2 years we want to start a family but I cant start anything untill this is over and i can close the page and start a new chapter in my life.

 

I feel im totaly pushed to the side by the hospital as it not a urgent case to them but to me its the world as i feel like a freak as my breasts are so different in shape and size and its really getting me down i just want this nightmare to end now.

 

I feel with Pash the is no real suppoort as no one really knows enough about it, I have like so many woman been through so much but just get pushed to the way side as its just Pash but to me it has devistated my life.

 

 

I totaly understand how you are feeling xxxx 

moominm
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Louise

 

I don't have any information and can't really be of much help but just to say that I'm in a similar boat.

 

Found the lump last year, had ultrasound and biopsy and have been uneven since.  I went back this summer after a nightmare episode trying to get a new bra where it was clear one side was bigger than the other.  Was told that the mix of pash and fibrocystic meant that it was normal, probably linked to monthly changes and being on the pill and as it wasn't *that* much bigger (at least one cup size) than the other no further action was needed except to keep an eye on it.

 

Hope the appointment goes well.  Might be worth reading up on the limited info available and taking some questions with you on paper.  If you're anything like me they'll all fly out of your head when you're in there!  I'm kicking myself that I didn't make more of a stand last time.

 

Good luck 🙂 x

Maryann1970
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello

My name is Maryann. I recently had major breast surgery for PASH. I'm wondering if there is anyone out there who also has had surgery? It's been a long, long process!

Thanks!

Jo_BCC
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Louise

 

Welcome to the BCC discusssion forums, you've come to the right place for some good, honest support from the many informed users of this site.

 

While you are waiting for replies, could I suggest that you give our helpline team a ring and talk to them about your condition, they are here to support you both practically and emotionally.  Calls are free 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2.

 

Take care,

Jo, Moderator

Louise21
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello

New to this forum, although I have been reading the posts. I am 35 and have recently been diagnosed with PASH. I noticed back in January this year that my left breast was swollen and not fitting in my bra correctly. Didnt think much of it and thought it was reduce on its own. It continued to grow and I felt a large lump. Finally went to see my doctor in march. Was referred to hospital. I had an ultra sound done and due to my age was told it was just my menstrual circle causing the lump and told to take evening primrose tablets. I went away feeling like I had wasted the consultants time. Another month passed and my left breast was still growing. My right breast is a 32g and my left breast is was a 32h, I feel lopsided.  I went back to my doctors and asked to be referred again....this time the consultant was more understanding. I had a further ultrasound....then I was booked for a MRI scan. All the ultra sounds and MRI scans were clear as they were looking for cancerous cells. I was then asked back for a core biopsy.  It was

at this stage when PASH was diagnosed.  When I got my results the consultant said it was rare and that she would have to do some more research on the condition.  I cant seem to find much information on the condition and not sure what happens now. I am hoping to get more information from this site. My next appointment isnt until November but I want to know what is the next step. My breast has grown  again I am now a 32hh. I am feeling extremely self conscious.  I have always had large breasts but I really dont want my left breast to continue to grow.

 

Any information would be greatly appreciated. 

 

Louise 

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Kathy, 

 

Just wanted to wish you luck with your opertaion I hope all goes well xx

meoc
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Maryann
Hope all is good and I learned that just living one day at a time and making the best of each day helps. Not sure what the future holds but all is good today. Surround yourself with positive.
Kathy12
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi I just signed up and I also have PASH. But with my age dense breast and strong family history of breast cancer they did an MRI. Positive for dcsi in the other with a fast growing PASH in the other They wanted to do six more MRI core guided biopsies I opted out. Have a double masectomy scheduled for sept 17. Not sure if PASH is a precursor to breast cancer
Maryann1970
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

I have what you have! Ugh!

Maryann1970
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello

THis is my first time on the forum. How are you doing?

Spoiler
 
Maryann1970
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi

Just wondering how you made out. I'm scheduled for surgery as well.

MP

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Meoc,

 

Im so sorry to hear about your situation i understand how stressful this has been for you its the waiting to see if it is cancer that is the worst.

 

My lumps started small but grew quickly over a six month period and the pain i suffered was terrible the were so sore to the point where i would have to hold my self while in the car due to the bumps in the road it was horrendus, they were also itchy and as hard as bone it was horrible.

 

I am only 34 so I dont think it is connected to the menopause, but dont quote me im as in the dark as everyone else as there is just not enough information about Pash available.

 

Its been hard having the double mastectomomy but at least i know the pain is gone and my life can move forward as it was on hold for such a long time.

 

I am in the UK so im very lucky that my traetment is covered on the NHS.

 

Good luck I hope you get the answers you want to hear xx 

meoc
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi

I was diagnosed with PASH just a couple of weeks ago. Waiting for the test results was very stressfull. Having to put our future vacation time on hold as suggested by my family doctor, was very stressfull. But I still managed to put on a straight face at work. Not knowing if I had cancer or not was still an experience enough to start thinking in a different way. I have family members who did have breast cancer and you never know right? So not sure what PASH is all about. As described by the specialist, it is still unkown if this PASH leads to cancer in future years. I have more than one lump on my left breast. I was given the option of taking them out or wait. I am to return in 6 months to see if they are getting bigger. Is this something I can  just let it be or do they eventually have to take them out anyway? Do the lumps do anything? Do they go away after menopause? I am 48. They are somewhat itchy and sore at times. Yes I would like to know more about it. I am also from Canada. Not sure what my healthcare plans will cover. Do need to inquire about that also. 

June_BCC
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello Sunshine0663

 

Welcome to the forums, this must be a very difficult time for you. As well as the support you will receive on the forums we also have a free helpline where you can talk things through with a member of staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

Best wishes

June, moderator

Sunshine0663
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

At the beginning of July after my regular mammogram I received a call advising I needed additional views done and probably an ultrasound. After the second mammogram and ultrasound I was advised I needed a core needle biopsy. I had two done which showed PASH. I never heard of this and tried to do some reading online about it as suggested by the surgeon I saw. On August 8 I had a quadrectomy done to remove the rest of the PASH and to verify there was no cancer. Thankfully there was no cancer just more of the PASH and I am still recovering. The mass was not papable. It was extremely painful but I had no idea the pain I was having was from the PASH. I was in the ER twice to be checked for a heart attack because I was having such pain in my chest in my left breast where the PASH was located. My heart is great but none of the doctors ever suggested it might be something in my breast causing the pain. Makes me wonder. From the comments here it sounds like this is something that can reoccur and could affect both breasts over time. My surgeon seem to suggest the same thing. I have to have another mammogram done in December. After this I have made a promise to myself to be diligent about my screenings, which at my age (51) are done annually. If the PASH does start growing again I want it caught early, if possible. I feel for those of you who have had to go through mastectomies because of this condition.

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi All,

 

Im finally on the road to recovery after my second Mastectomoy on the 16th June, unfortunatly it didnt go as smooth as the first and i ended up having to go back in to theatre just over a week after my initial operation to loosen some of the muscle holding the expander implant, but im finally starting to feel better and have had my first inflation today and so far so good!

Im sorry to hear you ladies are strugling to find help I was in the same situation after being diagnosed with PASH but all I can say is keep going to back to your doctor if your not happy, I was told on numerouse occasions that it was just a lump and nothing to worrie about! but i was so fed up of being in so much pain all the time and i couldnt sleep as I couldnt get comfy and I could feel the lump getting bigger and bigger and eventually I was so low and fed up I just broke down in the consultants room and said I cant go on like this its effecting my day to day life! It was at this point I feel they took me seriously and was sent for yet another core biopsy.

When the results came back this is when they finally gave me a name for the condition I now know is PASH my options were limited I was offered drugs to stop all my hormones forever but this was not an option as we want a family so the other option was the Mastectomy as the PASH was so large so I said YES straight away as I know that would end the pain and suffering and it has!!!!

I still have one more operation to go to remove the expander implants and replace with silicone but then thats it we can carry on with life pain free and start our family as it feels ur lives have been on hold for so long.

 

If any of you ladies have any questions please do not hesitate to ask me I might not have the answer but dont be afraid to ask! I know how hard it is to find information about PASH even my doctors dont have that much info as I am the only case they have had!

 

Good luck ladies and dont suffer in silence xxxx 

Sealwood
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

I was diagnosed last week with PASH, painful unfortunatly.  I am struggling to find information.  My oncologist recommended a complete hystarectomy to begin with, then the tamaxafin treatment.  There are too many tumors to be removed without total mastectomy.  No one here had any idea of how to proceed, the doctors are leaving the decisions to me and I have not a clue.  I live in rural USA, not exactly a medical mecca... Any help would be great, I wish there was someone to call...Sealwood

Jo_BCC
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Moomin

 

Good to see that you've come back to the forums for some support, and I'm sure your fellow users will be along soon.  In the meantime if you need to talk, do give our helpline a ring, they're here to support you through this.  Calls are free 0808 800 6000 lines open weekdays 9-5 and Sat 10-2.

 

Take care,

Jo, Moderator

moominm
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi all.

 

I disappeared for a bit after my original posts last year.  My biopsy came back with a B2 and the consultant stated categorically that it was a just a benign lump and normal breast changes so nothing to worry about at all.  I'm of course happy it's benign but I'm still wondering if it is pash as I think it may be growing. I am getting pain in that boob when I take my bra off and have taken to lying in positions at night which prevent putting any weight on it.

 

The biopsy report states "fibrocystic changes with prominent stromal fibrosis (focally with pash-type features) and ephithelial columnar cell alteration". It also mentions four different possibilities including two atypical lumps, phyllodes or Pash.

 

Does any of this ring bells with any of you? I'm struggling to put this to bed in the way the consultant thought I should be doing! x

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi lindziraye,

 

How did it go with the doctor?? I hope you got the answers you hoped for??

 

I had my second mastectomy the same day you wrote on here the 16th!!

The operation went OK but I was n agony afterwards so I went back into theatre on Friday and they had a good look and repositioned the expander implant and I'm much more comfortable now and I'm at home recovering.

 

Please let me know how it went with you xx

lindziraye
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello again. I'm sitting at the drs office now waiting for her to come in.I'm in the US. Is it difficult to talk drs into removing it because they know so little about it i wonder?. Like I've told my mom and i will tell the dr "I'm 25. Im still young, so why should i have to live in pain when it could be removed and i could be done with it..." Ready to be done with this part of .
bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Lindziraye,

 

I totaly understand where you are coming from I got so fed up before they decided to do surgery I just wanted it all taken away to stop the pain! so after a 12 month battle they decided to give me a Masectomomy back in September 2013, at the time I pleaded with them to do both but they refused even though I found a lump on the other side they said it was healty tissue.

But here I am 6 months down the line and the lump they said was healty has grown 3cm and has been confirmed as PASH so Im going in next Monday 16th June for my second Masectomomy.

Im having the same reconstruction using the expander implant so once my second impland is fully expanded they will both be removed and replaced with silicone and fingers crossed that me done!!!!

You have to stay strong and be stong with your consultant as to the route you want to go dowwn I really had to push to get answers because I realy dont think there is enough known about this condition.

Are you in the UK or else where?? I am in the Uk.

 

Good luck and please let me know how you get on!

lindziraye
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hey everyone. I just found this forum today. I've been searching for somebody that also has this. I was diagnosed with it back in October.I was 24. I have my 6 month evaluation coming up next week. It's gotten bigger and it hurts like hell. Pardon my French. But seriously.and last week a found an area on the opposite breast. So im just impatiently waiting for my appt. When i was diagnosed on my first breast they told me i had to wait 6 months before they would even think about surgery. Im completely miserable. I just want them to remove all of it, give me implants and let me get on with my life. I'm done having children between my fiancé and I we have 4. 3 from previous relationships. 1 together. 4 is enough for me.. So i hope they will do surgery.
bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

 

 

Hi Abs44,

 

Im sorry to hear you have PASH. Its very hard to find information on this condition no one really knows much about it, I am in the UK and have been lucky to the top breast surgen in the North East and to have the top plastic surgen but I still dont think they fully undrstand PASH.

 

I have been suffering with this condition for nearly 2 years now I had my first Masectomy 7 months ago as my Pash was so large and uncomfortable I was strugging with day to day life i was so down and fed up my options were very limited it suggested i take tablets to stop all my hormones forever which is not a option as we want a family and the other option was a masectomy so i choose the masectomy as i was just so fed up and to be honest its the best thing I did im no longer in pain.

 

Unfortunatly 2 months ago i discovered a lump in my other breast and after core biopsey it was confirmed as Pash so myself and my breast surgen decided it was best to go straight for the secomd masectomy so i have recently been give a date so in 8 weeks time i will under go my second maectomy and I just cant wait for it to be all over and hopefuly about 4/5 months after surgery i will have the final reconstruction priocidure so by christams i will be pain free and have my new breast's!

 

I hope you get the answers you want I dont think Pash will just go away if anthing mine got worse over time but i will keep everything crossed for you.

 

Sarah xxx

abs44
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

I am 25 and was diagnosed with PASH about 3 months ago. I saw a general surgeon who didn't tell me much so I decided to get a second opinion and saw the Medical Director of the Breast Center at a prestigious academic hospital in my region (I am in the U.S.). She stated that PASH almost always goes away on its own and that she would not do surgery even though she believes my PASH is spreading and growing. I asked her what I would do if I continued to get more lopsided and she said I was welcome to see a plastic surgeon if that bothered me. 

 

All of this seems like completely different advice than I've seen in anything I've read. What have your experiences been and has anyone else gotten this advice (or lackthereof)? I just don't know what to do.]

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

HI

 

Im so sorry to hear your news I know how frustrated you must, I was exacally the same the second time round i was preying the pash would show on the biopsy so I can have the second mastectomy.

 

I did have reconstruction at the same time but I had an expander implant which is inserted under the new muscle an is inflated gradually after surgery to stretch the new muscle to form a new breast then once its expanded to full capacity they remove it and replace it with a silicone implant. I think it depends which type of reconstruction you have depending on the size you are.

 

I have an appointment with my plastic surgeon on Wednesday so I have everything crossed to get a date asap!

 

I think they will leave the expander implant in until my other breast is at the same place then remove both at the same time for the silicone implant then the final with be my nipple tattoo and I can't wait for this day to come as my life is on hold for now!

 

Please let me know how you have got on.

 

Take care 

 

Sarah