Living with PASH

I have PASH also and just recently had it removed. The location of your tumor is the EXACT location of mine. Interesting right? Mine always hurt more towards my cycle. I could feel the pressure from it growing. I have read that it is hormonal driven but they are unsure of the exact cause at this point. They are sure that it is benign however but it has a high density so it can interfere with your mammogram being read properly.

Mine had gotten significantly larger since 2013 and so it was time for it to be removed. It was biopsied 3 times so they were pretty confident in the diagnosis but due to its growth wanted it removed. While they were doing the wire localization the breast radiologist kept saying oh my gosh this is so big! Kind of freaked me out.

I had the tumor removed from my left and my right side reduced to match the size of my left breast. Hoping this works and it doesn’t come back. Won’t know for another year because they won’t mammogram me until next year.

Try not to worry but make sure you see a breast doctor that is familiar with PASH. It will give you peace of mind.

1) Yes I have been diagnosed with PASH. Mine was already a palpable mass when I found it with self breast exam. I had seen OB for routine check a few months before and nothing was found then. Mine was obviously fast growing.

2) I had a core biopsy to determine diagnosis, then surgery to remove tissue, followed by two more surgeries as mine came back. I see a breast specialst every 6 months to monitor it.

3) Mine is the left breast also, but more towards my armpit. Mine has never been very painful. It has been mostly tender and achy. The most pain I have had was about a month or two after my last surgery but looking back I think the pain was from nerves healing because it only lasted a short while and has not been that way since. Outside of surgery pain, I have never hurt enough to need so much as even Tylenol for pain.

4) As far as hormones triggering it- it is hormone related but I don't know of anything we can do to change it. My doctor says as I get closer to menopause (I'm 39) it should start slowing down. She also said when I do start menopause that I will not be able to use hormone replacements to ease symptoms. I have noticed that caffeine has a definite impact on how tender I am, so I limit it a lot.

Chemistry- I'm glad you said you could feel it growing! I thought I could too and wondered if that really could be what I was feeling. It was a different sort of ache than normal fibro-cystic ache.

What has you worried chis?

No need to worry just follow this symptom, you will some lump like structure at your breast that is sign of chance.

I was just diagnosed with PASH today. The mass is about 1cm x 2cm, palpable, right-sided, near the nipple. It is painful near my period. I honestly think it’s always been there, but I don’t have a clear mental map of every lump in my breasts (there are many).

The hospital is recommending a six month follow up ultrasound. The mass was not visible in mammogram. I’m not keen on surgery, but I will discuss options with my primary care doc.

I was pretty much resigned to accepting a cancer diagnosis based on the ultrasound report. This is a relief, but it’s been a frustrating and stressful six weeks

Monique,

My Dx was PASH as well. From my perspective waiting 6 months is a very viable option because, like what happened with me, PASH can go away.

For some women, it grows. By waiting 6 months you may have a better idea of what your lesion will do, and then can make a decision. There is no hurry to make a decision with PASH. So, unless it really bothers you, as in painful, you may want to really consider waiting.

Just another perspective

I have had Nodular PASH in both breasts since 2012 and I am now 46. I have been followed by Brigham ans Womens in Boston. It was a long process before they found a diagnosis, 3 hospital stays and 3 months of antibiotics. My breasts both grew from B to DDD left bigger than my right within a couple of weeks and it was unbelievably painful. I begged the specialist for a double mastectomy but she wanted me to try Tamoxifen. It controlled my symptoms but that is it. The one lump that was totally removed grew back. I stopped taking it in April of last year. In June they did a follow up mammo and ultrasound then sent me for a MRI. Again, everything was stable but all the lumps were still there. In July all the swelling and pain came back so fast that I got a 2nd opinion. For being a breast specialist she was totally clueless and recommended a breast reduction and she would remove the lumps then. They did a ultrasound and both breasts have multiple lumps, complex cysts among other benign diagnoses. That Dr ended up apologizing and recommended a total mastectomy as it would be impossible to remove all of them. I went back to Noston and restarted the Tamoxifen. My symptoms are back under control. My family life has been crazy since last July but I plan on going back to Boston in the next couple of months to see the new chief surgeon. Hopefully I can get her to do a study on me. The Specialist I have been seeing told me she rarely sees a case of one breast but has never seen it in both to my extreme.

I have been hoping someone would write with the similar situation as mine.

I am being followed by Brigham and Women's in Boston Massachusetts. The specialist I see has just retired and I will be seeing their new Head Surgeon in August. I have been on Tamoxifen since 2014 but that just is like a bandaid. I had stopped the Tamoxifen in April of last year and had a ultrasound and MRI which were both stable in June but in July all the symptoms returned in full force. The growth and pain was unbelievable. The sad part of it is that no one specializes in the severe cases and I feel like I know more about it now than the specialists do.I had to go back on the Tamoxifen. There is just not enough studies that have been done and a double mastectomy is my only alternative to Tamoxifen. I am trying to be hopeful that this new Head Surgeon will have more experience and some advice.

PASH can be extremely frustrating because it is so rare in tumor form and not many doctors are familiar with it. I would not hesitate to get a second opinion regarding removal and treatment. Is it wide spread throughout your breasts and that’s why they would only remove via a mastectomy?

Lace93...I am so sorry for what you are going through and know how frustrating PASH can be. I am hoping your appointment on August 15th gives you some better options.

The Cleveland Clinic does have an online program where you can chose a radiologist and they will review your images and provide you with a second opinion. I have found them to be competent and they are familiar with PASH as well. I think it costs around 300 dolllars, but it might be worth it to see what they have to say.

just so you know you are not alone.....I have bilateral pash all over breasts. I have had 3 surgeries and it all grows back within 6 months. Inhave had at least 10 removed with approx 7-8 more now. I jus monitor as all surgeons I have seen think mastectomy is extreme for now. If you have questions, pls ask!

I have my one year check up for having my PASH removed next week. I am so worried it has come back, as I don’t know what the next course of treatment will be.

I am now 5 weeks s/p a complete hysterectomy. I was put on a HRT patch but was cutting it in half every week when I would put a new one on. This past Wednesday I stopped the patch altogether. The bilateral multiple Tumorous lumps and swelling have all been subsiding. Not completely gone but feel confident that within a couple months there will be no more pain, swelling or lumps and bumps! The direction this is going could be the proof that the Dr's needed the it IS driven by hormones and not "maybe".

As nonsymptomatic PASH is relatively common, Bilateral, Tumorous PASH is not. With the bilateral pain, swelling and massive amount of PASH tumors and complex cysts I can say these symptoms were/are life altering. I am keeping my fingers crossed all of this will become a part of my past.