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Pseudo-angiomatous stromal hyperplasia (PASH)

122 REPLIES 122
BoduaB
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

I also had erratic periods that resulted in me going to my PCP to have them looked into. I ended up having bad fibroids in my uterus so they recommended a laporoscopic hysterectomy. When they did the surgery, they had to do an abdominal hysterectomy because of bleeding complications and I was then diagnosed with Pelvic Congestion Syndrome. That was 2 years ago. I started feeling lumps in my left breast a year and a half ago, along with sharp burning pain. My pcp sent me to an obgyn who sent me for an ultrasound, then a mammogram, then an mri, then a biopsy. My local hospital botched the job and couldn't isolate the lesion so suggested I come back in 6 months. I went for a second opinion instead. In the year that I had waited, I went from 1 lesion to 4, all birads cat 4. I had 4 biopsies December 1oth and the results came back as PASH. Come to find out my Mom had PASH and thats why she had a double mastectomy. Now the surgical consult is also recommending mastectomy, but im 8 years younger than my mother was. There has to be some sort of connection between the fibroids, the pain, and the hormones. Has to be. Good luck my friend!

chantalm
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi there, I’ve had a very similar experience.  I developed a large PASH mass in my left breast around the same time my ultrasound showed an uterine fibroid.  My periods are super heavy and long and the mass in my breast is slowly growing.  I believe this is all hormone related.  I’m going for a breast ultrasound on Wednesday to see if anything has changed. 

SaskiaE_BCN
Community Manager

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi belit,

Sorry to read about your recent experience. You may benefit from reaching out to our specialist nurses on 0808 800 6000, they can offer support and information about your situation.

Best wishes,

Saskia 

belit
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi! My name it’s Belit and I had surgery on my left side near my armpit.. I had it done on June 30th and it’s August 19th and I do still have discomfort.. I don’t now how big it was but the doctor decided to remove it. I went for check up last week and she found another one now on my right breast.. I was so overwhelmed that I didn’t ask any questions.. I just don’t now what to do .. should I leave it? Is it better to remove it now that is small? Why everyone talks about mastectomy?? I don’t want to get that done!!! Please give me some orientation. Thank you.

amna ali
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

hey i wanna know that does PASH surgery leaves a mark?

and can pash disappear on its own?

RachaelP
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi all,

 

I know this thread is very old now but wondered if anyone out there may have similar symptoms. For around 2 years now I have had crazy erratic periods which means i bleed around 20 days out of 28 with horrendous period pains too. Had an ultrasound and they found nothing. Doctor mentioned in passing likely to be endometriosis but unless i want an operation they don't want to investigate further. Only suggestion is to have a coil but due to the pains I'm getting I'm reluctant.

A few months ago one of my breasts seemed to slightly enlarge and i felt a discrete ill-defined lump. Had a biopsy last week and was told today it is PASH. I have decided to just leave alone for now. 

My question is, could these be related? It seems likely some sort of hormonal thing going on with my body. For reference I am 30, no kids and very active. My mum passed away when i was a teenager but i remember she had an emergency hysterectomy due to some kind of condition when i was still quite young that my family don't know what it was. 

Feeling rather fed up and fobbed off!

 

Lanz01
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

HI All

I am new here.  I was looking for some information and advice regarding PASH. 

A little back story.

In July I went for my annual mammo/sono.  Was asked to come back a week later for a 2nd screening of my right breast.  I have had no pain or lumps that I could detect from self examinations.

They told me there was something there, but we are going to watch it and come back in 6 months for another set of tests.  Went back early January, and the test show it has grown from 10x5 mm to 13x7mm, and they scheduled me for a sterotactic biopsy.  My doctor also had me schedule a breast surgeon appointment for after the biopsy in the event I needed more testing.  Biopsy results came back yesterday as non cancerous - PASH, and my Doc directed me to go to the surgeon for further discussion/options.  "Usually they want to have these excised".  My appointment is this afternoon.

But reading up on what I can find on the internet, I see that there is a possibility that this can grow back, and create more complications etc.

I do have family history of breast cancer on my mothers side (my grandmother and my aunt) and my father was adopted so we do not have his family history.

Just looking for anyone give me some advice as to what questions I should be asking or should I look for second opinions etc. 

(by the way, after the biopsy, I develop a large hematoma, which was more painful than the biopsy and following mammo text)

Any insight is greatly appreciated.

Thanks

amaew
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Same thing happened to me.  It wasn’t an issue until the biopsy aggravated it.   Watch and wait but the pain was too much so had it taken out... but 10 months later it’s back and painful.  Very hormonal.  After my period there is a week of no pain.  Then it ramps up again. Swollen and sore.  Almost like it’s a huge gland.  Any thoughts on what to do.???

amaew
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

I have the exact same symptoms... had it removed but it was back 10 months later....so painful.  What did you do?

cj76
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Sorry, I know this is a really old post but I was wondering which hospital you went to for the surgery please? Just been diagnosed with a 12cm pash lump and I’m the first patient my consultant has had, so I’m trying to find a hospital with experience of removing pash. Thanks 

cj76
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Cheryl, which hospital did you have your surgery at please? I’m currently trying to find a hospital who have experience of pash as I am the first patient my consultant has had. My lump is about 12cm, which I believe is pretty large for pash. Thanks 

cj76
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Amy, which hospital did you have your pash removed at please? My consultant knows nothing about it and I’m trying to find other hospitals that have experience of pash. Thanks 

cj76
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

I have just been diagnosed with pash and had never heard of it before. I’ve been doing my own investigating and so far I have found only 1 hospital that have experience of pash - the peony breast unit in Llanelli - May be worth you seeing if you can be referred there? 

Vantila1
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello! Another American here with a newly diagnosed PASH (right breast) after high-grade micropapillary DCIS in left breast 3 years ago. Like many others on here, I too am looking for similarities and advice. 

I had almost incessant itchiness on the skin just above the PASH tumor (very tiny...4 mm area of focal enhancement on MRI), have had reproducible and spontaneous bloody nipple discharge, and pain that feel like a deep bruise in the PASH area and also some pain in the shoulder joint and tenderness in the armpit.

For those of you who have had breast cancer and PASH, did your doctors recommend mastectomy? I'm wanting a double mastectomy just because my mental and emotional health over the past 3 years has gotten so bad with first the DCIS and now PASH. Unfortunately, as an American with our messed up health insurances over here, I'm not able to have a prophylactic mastectomy unless I have a new cancer diagnosis. What a mess!

And, if other Americans like me have jumped the proverbial pond and joined the UK breast cancer forums, here's a head's up...the American breast cancer forums for PASH mentioned that the Cleveland Clinic in Cleveland, Ohio is doing some clinical trials and have a dedicated PASH team.

Thank you, for letting Americans join the group. Maybe together we can all make a difference and get better info.

rohrerc
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

According the pathology I have a PASH mass in one breast and Atypical Lobular Hyperplasia (ALH) in the other breast. I was told over the phone my diognosis and that I was being referered to a surgen.  Is there anyone else on here who has also been diognosed with ALH along with PASH?  If so did you have a lumpectomy?

Loubear
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

I’ve had it for almost 16 years. It’s not grown or changed shape at all. I had mastitis after taking my second youngest daughter off the breast. I was able to get most of it gone but still had a few lumps that now I’ve been told is

Pseudoangiomatous Stromal Hyperplasia

I had 6 children that I had breastfed up until about 18 months old. After I had the mastitis from my now 17 year old my nipple would mostly be inverted. I fed my youngest with the lumps ok but she did favour the other side more. I recently had the lumps checked to be told that it was pash...and now am booked in tomorrow to have it removed. I’m really not wanting to do this. I would rather wait and watch...it’s been almost 16 years now and nothing’s changed. I don’t want to have it removed. 

moominm
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

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

Keebler
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Knewman - I have been searching and searching for another person with PASH with the same pain and symptoms - I also get this weird itching sensation on the skin above the tumor spot. 

 

My PASH was a solid tumor far back in my breast on top of the pectoral muscle near my armpit (they thought fibroadenoma), and the pain was alleviated after removal.  However, I am about 6 months out from surgery and there is a hard small spot again, and the pain, itching, and pins and needles down my arm have started back up. 

 

Hopefully you can find a breast specialist who can provide more information, and like others - I suggest removal before a full masectomy is needed.

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Knewman,

 

First, while I have heard of PASH being painful, mine wasn't.  I didn't know I had it until my mammogram, which then was followed by an ultrasound and a MRI.  It's interesting that you said it looked like dark ribbons, because mine was white on the screen.  In fact, the doctor recommended removal (vs. monitoring) since they would be comparing shades of white from test to test which is difficult to do.  If you read my original posts it goes into detail about what my situation was and I tried to put as much information as I could find in it since this is fairly rare and there isn't much out info out there. 

 

Cheryl

(kkisamu)

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Amy,

 

This just came up on my feed and there's no evidence that I replied.  I hope that I did since this is over a year old but if I didn't I apologize!  I don't remember ever seeing this.  Anyway, I know it's too late now, but my indentation was small and filled in naturally in just a few months.  I hope this finds you well.

 

Cheryl

knewman
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi

 

I have PASH too. can I ask what your pain was like? I get dull aches, sharp, stabbing pains and like hot wires in the tissue. I also get tight feeling in the armpit on that side and lots of dead arms and pins and needles which might not be related. Hardly any info from doctor or hospital at all.

knewman
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi, I was diagnosed with PASH several years ago now. I was already on a screening programme and had annual mammograms and MRI scans due to fmaily history. I was offered a double mascetomy as a preventative measure but told that the PASH was beneign and not to worry. I also struggle to find any useful information about PASH and do feel a bit abandoned tbh. I had a five minute talk with a consultant and then just back tot he screening programme. At the moment it is hurting a lot - enough to wake me at night when I lie on that side. The soreness comes and goes through the year with hormonal fluctuations but I get stabbing pains, like hot wires being poked into the tissue, bruised aching pains and can feel a long, hard edged ridge when it is playing up. It also makes my armpit feel tight and uncomfortable. I have told doctors about this but they know next to nothing about it so they just pass it off and suggest pain killers. Can't take those forever! I'd love to hear from other sufferers and also what symptoms you experience. The consultant seemed quite surprised about how much I feel it. When I saw the ultrsound image it looks very large, like long dark ribbons running through the breast tissue on the right side so if they cut it out there wouldn't be much left. 😞

Missamelie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello Cheryl.. Thank you bunches for sharing your experience and helping bring education, awareness and better understanding to this PASH.  I was very recently diagnosed with PASH (found out thru pathology from my breast reduction surgery). 

May I ask, After you had the 1.5 inches of PASH removed (excised, correct?) , what size /depth of indentation did it leave you with? 

**What options are a available, if any, to possibly fill in any indentations post op PASH excision?  I hope I'm making sense.  My mind is quite overwhelmed at moment. I had a breast reduction to help with my spinal cord pain (also have a rare neurological disorder which is when a cyst forms inside the cord). & now PASH comes along?!  But staying position.

Thank you again for sharing & for reading my questions.  Any additional thoughts are greatly appreciated!  Have a blessed day,

. Amy 🙂  

abs44
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

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.
gretabum
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

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?

EllyB
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi,

 

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.

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi 

 

Sorry for the late reply.

The 1st operation was a breeze I was back at work in 4 weeks after surgery, but the second Mastectomy was horrendus i was off work about 8 weeks as i had complications and had to go back into surgery a few days after the initial operation so my recovery was very slow and painful.

I personaly think if I had of had a double Mastectomy the firt time round It would have been much easier and my reconstruction would have been much quicker and would have been more even as now i am very miss shaped but i guess i just have to live with it. 

 

Please fee free to ask any more questions.

 

Sarah xxx

Cf24
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

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
Rula
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi,

can you tell me about surgey experice and how long it took you to recover.

I have no pain and my biospy report show its PASH. I have met 2 surgens and both recomended a surgery.although its a smal lesion 8mm with no pain.

 

Thank you.


@bugie wrote:

Hi Chloe,

 

I also live in the UK and I was diaganosed with PASH 4 years ago and I also had a very large mass and the pain was terrible it really but a stop to normal everyday activities so after loads of tests and going back and forward to the hospital it was decided with my consultant that a mastectomy was the best option as the mass was so large. I was in the same situation as the hospital were very limited with information about PASH as I was the first case in my area so all the information I found was off the internet.

 

Before my Mastectomy I doscvered a lump in my other breat and biopsys were taken but they said it was healty tissue but once they did that it grew very quickly and bacame just as painful as the first mass so 6 months later I went and had the second Mastectomy.

 

People were shocked I was having a Mastectomy as there was no Cancer but after the months of pain and putting my life on hold It was a releife to have the pain gone.

 

If you are struggling to get info please don be afraid to ask any questions.

 

xxx


 

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Chloe,

 

I also live in the UK and I was diaganosed with PASH 4 years ago and I also had a very large mass and the pain was terrible it really but a stop to normal everyday activities so after loads of tests and going back and forward to the hospital it was decided with my consultant that a mastectomy was the best option as the mass was so large. I was in the same situation as the hospital were very limited with information about PASH as I was the first case in my area so all the information I found was off the internet.

 

Before my Mastectomy I doscvered a lump in my other breat and biopsys were taken but they said it was healty tissue but once they did that it grew very quickly and bacame just as painful as the first mass so 6 months later I went and had the second Mastectomy.

 

People were shocked I was having a Mastectomy as there was no Cancer but after the months of pain and putting my life on hold It was a releife to have the pain gone.

 

If you are struggling to get info please don be afraid to ask any questions.

 

xxx

Rula
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello everyone,

I have been diagnosed with PASH , my doctor recomeended a surgery to remove it.

can you please tell me about your experience wth suregery and recovery time.

Thank you

Cf24
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi I am Chloe 

 

i live in the UK and have been seen by a consultant about my breast that has grown in size and is very painful,  the biopsy has determined PASH in the beast but the consultant has said they can not remove anything as it is a mass rather than a lump. 

 

I am am still in a lot of pain but I feel like there is no knowledge of it for the hospital to suggest anything apart from wearing a sports bra and taking pain killers. 

 

I honestly feel stuck.

leah06
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Janet -

 

If you get this, I've just been diagnosed with PASH - beats the heck out of the cancer they thought they'd find - but am looking at second opinions including Mayo. I know your sister is getting MRIs every six months, but did they excise? If your family hadn't a cancer history, did they seem inclined to put her on Tamoxifen? You know,  have a small child. I look at her and am reminded how much I wish to make effective and smart decisions around my health

 

Thanks,

Leah

bugie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Everyone,

 

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

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Sorry to hear that your daughter is going through this Gigi.  First of all, unfortunately, it is not all that uncommon for the PASH to grow back.  However, if the testing showed signs of auto immune deficiency, I'm wondering where the PASH diagnosis came from.  Was it just a Dr. saying he thought it was PASH, or was it a pathology report actually stating it was PASH?  I'm not aware of a link between PASH and auto immune but I'm not a Dr. so I don't want to speak on that.  But if the pathology report states it's auto immune and not PASH, I think she needs to see a doctor who specializes in auto immune diseases, and not necessarily an oncologist, for a full work up.  Good luck!

-Cheryl (kkisamu)

gigi_lewis
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

kkisamu, my daughter had a lump removed in July 2014 that was diagnosed as PASH. since then she has had another lump to pop up that the oncologist said was probably the same thing. he told her to watch it and keep doing her self exams and if it seemed to grow to come back, otherwise he would see her in a year. she is now 18 but was 16 when the first lump was found. the lump was sent to Vanderbilt university the report came back that it could be the signs of an early auto immune deficiency. as a parent of course i want to know what the heck that means? in the future is my daughter going to be diagnosed with lupus MS, what??? this is driving me insane especially since, ITS BACK!
Aliooop1
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Everyone,

First of all, thank you all for the excellent personal informal you have provided on this topic. I am 41 from southern California, and I was formally diagnosed with PASH yesterday. I had no idea what it was, and like most of you, had a difficult time finding much information on the topic.  I also found it odd that I was sent to a breast surgeon before I was told what my results were, so I knew something was up. I am told that I will be having surgery to remove it in a few weeks.  Again, thank you all for the information, it's nice to know there are others out there with a similar situation, as I had no one to really talk to about it!

 

Alice (Aliooop1)

 

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Dobie,

 

Scroll down to pg 2 of this thread.  My posts start on Nov. 13, 2014 (my screen name is kkisamu and it's a green soccer ball pic).  Start at that one and read up through all of mine and you'll get a detailed account of what I've learned through the process.  I think it might help you.  If you have more questions after that, please let me know.  I'm not an expert but I have been through it. 

 

Cheryl (kkisamu)

Dobie
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

I am 45 and was just diagnosed today with Pash. Biopsy confirmed . All the nurse said was this is rare and we can take it out if you want. Or we can get you back in 90 days to see if it grows.  Seemed like NO BIG DEAL>.

 

Now after coming home and doing the research, most everyone has had their mass removed. My grandmother has had 2 boughts of breast cancer. So I am high risk.... don't know where to go from here....

 

God Bless and Thank you in advance   

david2156
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello janet123!

First of all, thank you very much for replying!  It helps a lot!

I also have a family history of breast cancer (my two sisters). We were tested for BRCA1 and BRCA2, for all of us they were negative.

How old is your sister with PASH? Does she have it in both breasts? how many lumps does she have in total? How was she diagnosed? Why didn't she remove it? Are the lumps big? Is she able to feel them?

You mentioned hormonal therapy, did you mean tamoxifen?

How can the doctors know if PASH tumor is not hiding some other things?

I've already heard three  different opinions, I'm confused.

Anyway, thanks once again!

Best regards,

Eti.

janet123
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Whitewolf 1,

 

I was wondering what complications if any that you had with the mastectomy.  I know in some people that they can experience chronic phantom pain or lymphedema years later.  After the mastectomy, what are the chances of the pash returning to surrounding tissue?  Thank you in advance.  Warmest regards and Best wishes!

janet123
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi,

 

My sister was tested for BRCA 1 and BRCA 2.  She tested positive for BRCA 2.  We have a family history of breast (grandmother), endometrial (mother), and colon cancer (mother's sister.)  My grandmother was diagnosed with a benign tumor in her 40's, which she had removed.  It was not identified as Pash at the time, but this was 40 years ago.  She was later diagnosed in her 80's with a common type of lobular breast cancer in the same location as the original benign tumor.

 

My sister with pash receives an MRI every 6 months to see if the pash tumor is growing.  Thank goodness, It seems to have stopped growing.  She also has another rare condition called fox fordyce disease, which is also related to her hormone imbalance like Pash.  Due to our strong history of cancer, hormone therapy was not recommended.  Her doctor's feel that she may reach menopause without needing surgery.  If this occurs, the tumors would shrink upon menopause.  They are avoiding using a drug which would put her in menopause early to avoid increased risk of osteoporsis and heart disease.

 

I know how overwhelming it can be upon the initial diagnosis especially with the limited research out there.  I believe in the last year in the United States....it is nolonger listed on the rare disease list.  It is being identified more frequently, which will lead to a greater understanding.  I recommend seeking several physicians opinions who are familiar with pash before making a decision on treatment.  The most important thing is for all of us to be diligent on our check-ups.  I would have the blood test done as well.  I hope this is helpful.  Warmest regards and best wishes.

david2156
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello!

I was diagnosed with PASH only a few months ago. I was so happy the answer of biopsy was not cancer, but later I started to read about this "benign" disease and now I wonder, maybe sometimes cancer is better than PASH?

I have so many questions, but first of all I wanna be sure it's Ok with you that I'll ask you them.

I prefer to start with these two questions:

Did you have a family history of breast cancer? Did anyone ask you about having BRCA1/2 blood test?

Best wishes and thanks a lot in advance!

Eti.

whitewolf1
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi all,

 

I just joined this site because I was interested in hearing other people's experiences with PASH. I was diagnosed at the age of 11 years old and struggled the past 15 years with a lot of reconstructive surgeries. I had PASH in both breats and had multiple removals before getting a bilateral masdecomy when I was 12 years old. I guess it's my claim to fame for being the youngest person for a masdectomy? Anyway, it is really is nice to know I am not alone dealing with this condition so after being through all the hoops PASH brings, I am definitely an expert and would love to offer any advice I can. 🙂

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Kelly,

The options are monitoring or removal. I imagine if it's growing that fast they will want to remove it. Ask your Dr about what the plan is if it grows back as I understand they can. I had mine removed in January and my follow up mammogram is in July. The procedure was not as bad as I imagined it was going to be. Good luck!

Cheryl
Lucy_BCC
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Kelly and welcome to the BCC forums

Along with the support here please also feel free to call our helpliners to talk any concerns over, lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

Take care
Lucy BCC

kelbel73
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hello, my name is Kelly and I was just diagnosed today withy PASH.  Of course, the first thing I do is look to the internet.  I had an ultrsound 2 months ago and the lump was 5 cm in size and then on Monday I had a follow up with a biopsy and now 9 cm in size, so it is growing rapidly.  I go in on Monday for my "options"  the nurse alread mentioned having it removed,  so I guess I'm confused about the option part?  

 

 

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi Anna,

 

I didn't have a partial mastectomy when my PASH was removed.  It was an excisional biopsy.  Still, I as told not to lift anything more than 5 lbs (weigh your purse!) for at least a week.  I missed about a week of work for my procedure and I believe your procedure would take longer.  Good luck!

 

Cheryl

asinapi
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Hi I'm have a partial mastectony next week to remove a  13 cm PASH tumor. Can anyone tell me what the recovery time is?  I know its different for everyone but I just wanted to an idea of how long I will need to be off work.

 

Thanks.

 

Anna

kkisamu
Member

Re: Pseudo-angiomatous stromal hyperplasia (PASH)

Bren,

 

How has your recovery from the surgery gone?  I hope all is well and you are back to a regular routine.

 

Cheryl