Thanks for your experiences. Im 31, was diagnosed with nodular-PASH at 29 and had a deck of cards sized tumor removed. Since then its been smooth sailing up until this week. Discovered another lump, had a mammogram this morning, I go in in 1/2 hour to get the results.
I appreciate that you advocated for a mastectomy. I had asked for a bilateral mastectomy upon finding my first PASH as I was planning a preventitive one in the next few years anyhow as I am extreme risk for breast cancer. It was denied and of course here I am hoping that the PASH id severe enough to make them listen to what I want. Is there a reason they didnt do the reconstruction at the same time as the mastectomy?
Just to keep you all posted I had a scan two weeks ago and straight away they said its PASH so my consultant said we will go straight for the surgery and no biopsy is needed but after speaking to my Macmillan nurse after the weekly case meetings I was told I would need a biopsy as they need to confirm for legality reasons it is defiantly pash before the do the Mastectomy. So a week last Friday I had my 4th core biopsy and surprise surprise its pash!!!!! So I'm now waiting for an appointment to see my plastic surges and then hopefully I will get a date for my operation.
Im really upset I have to go through this all again as I'm desperate to start a family but want this all behind me before we start, but because I'm not a priority as it benign I feel I might have to wait a while but I really just want it all done ASAP so I can get on with my life!!!
I will keep you all posted on my progress and thanks for everyone's input as there isn't many of us out there!
Good luck everyone and I will be in touch.
Bugie, I'm very sorry you have to go through the process again. After reading this thread and other related threads, it appears a mastectomy is a very real consideration. Shortly after I posted, I discussed it with my partner, warning him that if my breast history continues on the path it's going, I would be inclined to seriously consider that option.
Irenebru62, I had my mammogram on Friday. And a thorough ultrasound. There was lots of collaboration going on, between the pancake lady (the mammogram) and the ultrasound tech and one of the doctors at the clinic. They said I have busy breasts, and there is a lot going on in them. Basically, they are very dense and very lumpy, making conclusions tricky. They carefully compared all of my past scans and film. This clinic was wonderful, no sarcasm there. The doctor ultimately said, you can have the lump biopsied, or you can wait and watch it carefully and re-examine in six months. She left it up to me.
I decided to wait. I feel better knowing there is something there, likely more pash, but I just don't want to keep invading that side of my right breast. It would be my third strike on that side. If it starts to grow out of control, and that's what pash tends to do, then I'll re-evaluate when the time comes. But for now, I'm just going to deal with it. In the meantime, I'm taking vitamin D, which is supposed to be very good for breast tissue and where I live, we don't get a lot of sun. I've started the vitamins a couple weeks ago, so if nothing happens with the pash, it will be interesting to see if vitamin D makes a difference on film.
Good luck to everyone else, and thank you all for sharing. Our combined knowledge and experiences are our own research for PASH. I'll be in touch. Hopefully, no sooner than my scheduled six month mammogram.
Lovely to finally see more people popping up on here with PASH its nice to have people to speak to.
You will see I have given my history below but as I write this new post Im waiting to go back to the breast clinic as I hve found a lump on other side so my doctor has sent me straight back to my breast specialist.
Im so upset as when I was first diagnosed with Pash and the Masectomony was reccomended I pleaded with the doctors to do a double Masectomoy as I didnt feel they knew enough about the deseise to say I wouldnt get it in the other breast and I thought If im going through this massive operation I would much rather do it once than possibly have to go throught it in the future, I even said I would sing a dissclaimer to say it was my decidion to remove a healthy breast as a precausion.
But all the breat team decided they would NOT remove a healthy breast so suprise suprise Im now starting the process all over again on the other side.
I just feel as it was my choice they should have done the double masectomomy as surely the NHS budget would have been in less of a strain if i had have had it all done in one go rather than taking up valuble appointments to start this process all over again!!!!
Im just very upset and annoyed as my husbamd and I have had to put our life on hold and now it feels like its starting all over again, Im going to the hospital this Thursday so I will keep you posted!
Hello ladies. I see most of you in this forum are just about in the same boat. I happened across this forum because my right breast (Thelma, as I call her) seems to be acting up again, this time enough for me to start googling it again.
Backstory: In Jan 2010, freshly 27 years old, my first lump was discovered by a regular annual gyno visit, and referred for a ultrasound. I had a mammotome biopsy by the end of the month (where they stick a straw like tube to chop the lump up and suck it out through a very tiny incision under local anesthesia). The results came back Atypical Ductal Hyperplasia. I was recommended to go off of the pill birth control by my gynecologist in order to reduce the amount of hormones that could incite the ducts.
Fast forward a year (Feb 22, 2011), discovered by my required 6 month mammogram, the breast specialist hinted at PASH and suggested surgery due to its size being near a lime. It had rapidly grown in just a short year. The doctor mentioned I could leave it, but he said the odds of it getting bigger are pretty good, and it certainly wasn't going to get any smaller. Yes, it was painful, but more of an exaggerated "that time of the month" breast tenderness. Tolerable, but since it was near my armpit, the lump was hardly discrete in its presence. I couldn't forget about it because my arm would constantly knock it around, and we all know how comfortable underwire bras are...
Fortunately, my doctor was very compassionate and kind about all this. Perhaps because he was a specialist. Either way, he left the decision up to me to remove or leave the lump in Thelma. He did say that because of the size and nature of the lump, he needed to have me knocked completely out and make a larger incision to get all the PASH. Due to the now hospital operation to remove this thing and lapsing insurance issues, I opted to have the lump removed. The results confirmed the doctor's inclination to PASH. He said he believes he got it all, but there's a chance it could come back.
And here I sit, with my bicep knocking about my tender Thelma. Louise (the left breast) is tender too, but there are obvious differences in the two's behavior. Over the past few days, it seems particularly angry. I can definitely feel another lump, but with the scar tissue, it's tough to know for sure. My breast are somewhat large for my frame, so although they've removed quite a bit from the same breast and area, it's not really visually noticeable. I am chalking the flare-up to hormonal, but it's tough to say since I have the Mirena IUD (because it offers birth control with an extremely low dose of hormones) and I don't bleed when with my cycle. Due to moving cross country, I haven't managed to get a mammogram lately. I did get permission on my last one to go a year in-between rather than every six months, but I am over-due.
I realize I've now written a full novel, but I read through all the comments and it unfortunately is still a unresearched topic. All the literature about PASH is fairly outdated, and there hasn't been many scientific updates since. So my contribution is my story, and I would like to express my fears as well. Is this going to be a life long of should I/ shouldn't I get this mass removed annually, or as many of you have also brought up, an eventual mastectomy? Not to mention the "small" chance of growth being cancerous. I believe I read a comment from someone in the medical community on this thread who rated the risk at 30%, which seems shockingly higher than I recalled. (Not suggesting she is wrong at all, rather I am known to suppress scary details for mental protection, lol.)
After reading and writing all of this tonight, my priority next week will be scheduling some appointments to have a look at Thelma. I appreciate everyone sharing their own story, and I hope mine might offer some insight to another case. I will be sure to come back with an update when I have anymore news. Thanks for listening!
Great to hear from you!
It nice to finaly speak to some one who has gone through the same thing.
I hope you are doing ok after your operation?
I totaly agree with you when you say you must push if your not happy with the answers you get, I finaly found a consultant who would listen and he has been great I have seen him since my Masectomy and he says he has got all the PASH and the % are good and I should just keep an eye on the other side but so far so good!!!!
Im still back and too to the hospital and you meet some really amazing people but its hard to find someone to relate to when talking about PASH, but the nurses have been great.
Are you on face book?? if not it would be good to keep intouch via email if you are ok with that??
Great to speak to you, please keep intouch
I have recently been diagnosed with PASH. I have had fibrocystic disease for years and most doctors pay no attention to any masses i had. Radiologists would dismiss masses that showed up during screening becuase of the disease. I had an unusual lump appear several months ago and finally had a doctor that paid attention when i said it wasn't the same as my normal lumps. He sent me for a mammogram and ultrasound and told me not to tell them about the fibrocystic disease and you would be amazed by the difference in attitude. After i recieved the results i was sent for fine needle and two core biopsys' when showed hyperplasia and sent to a specialist. Within weeks i was in having the mass removed results showing PASH. I have a brilliant specialist she has recommended regular mammograms, having my doctor do manual check ups and if anything is found i am to go straight back to her to deal with it. If you have not recieved the treatment by your specialist that you deserve then go somewhere else. We are entitled to ask questions and recieve acceptable answers. One piece of information that i have found from reading medical research papers is that yes the disease is rare but there is currently no clear link between PASH and breast cancer. Finding a good specialist is the key you get the answers and the care that you deserve.
I was recently diagnosed with PASH after 2 core biopsy's over a period of 12 months.
I noticed a small lump and went to the doctors who referred me to hospital as they thought it was a cyst as it was to painful to the touch this went on for months in and out of breast clinics until the final biopsy confirmed PASH.
I was so fed up after suffering so much pain and the odvious difference in the size of my breasts as the one with PASH was considerably bigger than the normal breast, my consultant suggested a full mastectomy as the PASH was so large and hard it was like bone to the touch, the other option was tablets to stop all my hormones forever and this was not a option as we want a family.
On the 30th of September 2013 I had a full mastectomy and a expander implant inserted, I have currently had two expansions and already I can see my new breast developing, I still have around four expansions to go then in around 6 months time I will have a silicone implant inserted and my normal breast will uplifted to match my new breast, then the icing on the cake will be my nipple tattoo!!
Its been a long road and we still have a way to go but I don't regret my mastectomy one bit in fact it was the best thing I did as after the initial pain of the operation I'm finally pain free and Im looking forward to my new pert boobs!!!
I searched lots of internet sites looking of other people with PASH but its so rare there is hardly any information available, so If any one who is going thorough PASH or has just been diagnosed pleased do not hesitate to get in touch I would love to speak to other suffers to share experiences.
Aware this is an old thread but I can't find much else!
My core biopsy seems to indicate PASH and was wondering how you all got on?
Did you have it removed? Did it come back?
Hello. I was diagnosed in July with PASH. I have a 6 inch tumor in my left breast, that appears to have grown very quickly. My doctors are recommending removing the tumor and immediate reconstruction with implants on both breast. Could anyone offer me any follow-up info since your last posts? leedani, did you have your tumor removed without having reconstruction? I am in the US, and I know things are sometimes done differently, but this is the only forum I can find for PASH. I would appreciate any help you can offer. Thanks!
Hi everyone. I have had PASH for four years now and it is nice to talk to other women who have it. My problem started when I was 25 years old. I have had two surgeries and countless mammograms, ultrasounds, MRIs and biopsies. It is in my left breast. Since my first surgery I have also had problems with my arm. I get pain and numbness from my armpit straight to my hand. I know there is a nerve pocket near where my lump was removed. I also get itching where the lump is. I am in pain all of the time. Different types of pain. Burning, stabbing, throbbing, swelling, etc. And the worst part is that it never ends. I go to the breast surgeon every three months. I get ultrasounds every three months, MRIs twice a year and mammograms once a year. After my first surgery the lump came back in a week. After the second surgery, the lump came back in three weeks. They are the size of an egg and can be see when I lie down. Unfortunately there isn't much literature about the condition. You can google pash condition and look under books. There is a breast surgery manual that is pretty recent that has a couple of pages online that you can read.
Leedani, thank you.
Your advice has been really helpful. I also spoke with a friend last night and it turns out she used to work for the lovely consultant we're going to see in two weeks' time. (She also knows the horrid one who we were dealing with previously and apparently his awful behaviour is nothing new!)
I am going to ask the lady consultant to remove it. I have tried really hard to settle and to get my head around the idea of just living with it. But it's not working. I am worried about it being there, worried about the possibility of it masking something more sinister (either now or in the future) and the pain, although not excrutiating most of the time, is bad enough at times to warrant further work.
As to where that leaves me once they've removed it (if she agrees to do it) I'm really not sure. She said at Christmas when she decided just to take a biopsy that it was extensive and would be damaging to remove it but it may be that any damage can be mitigated by the fact that I need them to be refashioned anyway as they're so saggy now (just empty skin really, other than this 'thing' on one side).
Can I ask how extensive yours was and what follow-up treatment/reconstruction you needed?
I too was treated for PASH. If you haven't done so, I would recommend you get it removed. I had my removed and had no problems. My has grown from 3 cm to 9cm in a few years. My first surgeon said I could leave it and it may grow. I didn't want surgery so I feft it. After I could tell a size change I went to another surgeon. My 2nd surgeon said to take it out b/c it could still grow and it would be hard to read mamograms in the future. Wish I would have had it taken out soon
Thank you so much everyone.
I have a further update. I seem to have a new 'lump' on the same breast. I say 'lump' but it's more a 'mass' than anything distinguishable. And the affected breast (the one with PASH) aches pretty much all the time but at certain times is very tender to touch. I think these times may be associated with a hormonal cycle but having had a hysterectomy (though my ovaries remain) I'm not certain of when and what this cycle might be. At its worst, I cannot lay on that side but with an injured shoulder the other side, sleeping becomes quite difficult. And often when I take off my bra at the end of the day, I get a shooting pain through the middle of the breast. Not sure if any of this is connected but it became so painful recently that I decided I may need some more advice.
This has come about in a slightly roundabout way now but I wrote to the original (and horrid) consultant to ask for more info. When he didn't respond (and given that the GP had not received a response to their earlier letter either) I submitted a formal complaint to the Trust. Two days later, a letter arrived from the consultant dated (would you believe) the day before my complaint letter! Not sure if that's just coincidence or not but I have a letter anyway. But they have also offered me an appointment with the other (much nicer) consultant who actually performed the biopsy and took the decision not to remove the offending lump. That appointment is next week.
The letter from the original consultant talks about removal causing a change to the shape of the breast. However, after my massive weight loss, I was looking at having to have a mastopexy anyway so I'm wondering now if it might be possible to combine the two - remove the offending lump(s) and reconstruct/make smaller at the same time. He does, however, caution that removal may not resolve the pain issues and may make it worse! Confused.com!!!!
Any thoughts on how I should handle this further consultation? Should I really push for removal, given that all published advice I can find states that removal with wide margins is the appropriate treatment. Or am I being ridiculous in considering this, particularly in view of the much more serious conditions other people are deaing with?
Your advice would be much appreciated.
Hi pheonix and Malbane
As well as the support you receive from the other forums users, as Tina has mentioned please do give the BCC helpline call on 0808 800 6000. Here you can talk through your diagnosis with someone who will be able to offer you a listening ear as well as support and information. The lines are open weekdays 9 to 5pm and Saturdays 9 to 2pm.
I hope this helpful.
Best wishes Sam, Facilitator
i dont have a lot of dealings with PASH but have come across it a couple of times in patients and i know at our unit they are quite keen to ensure there is no cancer as PASH has a high frequency of occuring along with a tumour rather than on its own.... one of the patients i saw with it was found at diagnosis through screening, the other was longer ago and i cannot remember the exact scenario just that thyey were wanting to do further biopsy to rule out cancer as they were worried about the association... apparently around 30% of PASH cases are related to BC.
i think if you were very keen to have surgery then you could potentially argue your case... but from this article it seems that even if you dont have surgery some form of screening may be relevant.
you are entitled to request a second opinion.
i know thats all a bit wishy washy and not really giving you much more info than you already have but it may warrant some further investigation of the area.
PS also found this article from the UK from 2009 saying the normal treatment is excision if its an actual mass....
"Local excision is the usual treatment of choice for PASH mass lesions, although treatment with tamoxifen has also been advocated.41 Excision is usually curative but recurrence of similarly benign lesions is possible. One study has also noted the possibility of conservative management in lesions which remain clinically and radiologically stable following diagnosis by core biopsy"
I was just diagnosed with this on 1/13/11 after an excision biopsy. There is very little info that I can find on the matter. I am wondering if anyone else had itching as a symptom?
Hiya. We hadn't found that one so thank you for sharing. Interestingly, there is very little info on there either and it does say that treatment is surgical excision, which they've opted not to do.
Frustratingly confusing huh?!
http://en.wikipedia.org/wiki/Pseudoangiomatous_stromal_hyperplasia not sure if you have seen this? x
A good start maybe to use the BCC "Ask a Nurse" facility or call the helpline! How awful of your consultant to treat you that way. I think we all deserve to be treated with respect, especially at a time that is very emotional and unsettling. Good Luck. Tinax
I have just been diagnosed with this condition and I understand that it is actually quite rare.
As such, I am struggling to find any 'plain english' info about it.
The consultant we saw is unfortunately a very ignorant and arrogant man who, after a two hour wait and having offered not even a token apology, pronounced that my diagnosis was 'fine' and tried to usher me back out of the door without even an explanation of what the diagnosis was! I managed to get him to write it down for me (he was rude enough to suggest I wouldn't manage it myself!!!!) and he has decided that, having removed a tiny portion of it for testing (which was done pre-Xmas) he is going to leave the rest as it is because it would be too invasive to remove the rest of it.
We are left with no idea as to the size and spread of it, prognosis for the future (ie, am I at increased risk of b/c, will it grow bigger again, what should I look out for, etc) and was equally dismissive of the even bigger lump which has appeared since the surgery and the pain under my arm (he says it's not a seroma, as we first thought, but 'probably just bruising and lymph nodes reacting'.
I should be thrilled and excited but instead am left feeling rattled and unsure. I am relieved of course that the condition is benign but the attitude and lack of information has left with me more questions than answers and no sense of reassurance about his management of my case. (He had earlier pronounced that he takes the view 'if you can see it, remove it' when it comes to lumps etc.)
Has anyone any information on this condition? Should I be pushing for removal? What should I do about the continued pain, discomfort, swelling, etc - how long should I leave it before assuming it should have settled. How should I feel about this 'thing' which is now being left in me but will react at least twice a month to hormonal changes and may/may not increase my chances of developing something more sinister.
The full diagnosis he gave (but only when pushed) was:
1. Columnar cell changes
2. Pseudo-angiomatous stromal hyperplasia
Your advice, as ever, would be much appreciated.