Extreme density , new lumps and multiple yearly biopsies

Evie10

I’m at a complete loss and was wondering if anyone can help. I have extremely dense breasts, fibroadenomas and am very vascular (Last MRI report said it was difficult to see clearly). Last year I had 6 biopsies and 8 the year before. This has been going on about 8 year. I’m now on anxiety meds as I collapsed when I heard they found more lumps last year - I end up in hospital after a panic attack. 2 weeks ago I felt a sting in my left breast and a lump. I am finding this hard to deal with. I’m lost. I can’t face going through it all again. I switched to a new specialist last year who said he would remove my breasts. Im scared of both options.

I would really appreciate hearing from anyone going though or having been through the same.

Thanks

Evi

BlueGirlRedState

Evie, I am sorry you are going through this. I also had a very dense lumpy left breast, normal right. Even though I grew up hearing about how important it was to do daily checks, I never did, because I felt to frustrated by the lumpiness. Has the Oncologist suggested 3-D mamography or other detection methods?. Have you ever done any testing to see if you are genetically more at risk for cancer ? I know they want to be sure of diagnosis before treatment, it sounds like you are getting a lot of biopsies. During all the checkups by DRs. I only had a biopsy once, it and came back positive. I had a lumpectomy the first time I've wondered if diagnosis/detection was more difficult because of the density/lumpiness, when cancer was detected again, 7 years later in the left breast, and was too big for another lumpectomy. The bi-lateral was my decision, and the surgeon counseled that it was medically unnecessary for a healthy breast, but that many women opt to do this. I hope you find a solution that works for you.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. – 1. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

Lacs93

Hi Evie. I can totally relate to your concerns. I have bilateral tumorous pash. It was a nightmare for anyone to figure out what was wrong as both breasts grew rapidly and were extremely painful. I was originally misdiagnosed with fibroadenomas until a complete lumpectomy was performed and sent to Brigham and Women's. I would recommend having that done looking specifically PASH.

This condition can be life altering. I went on medical leave twice and hospitalized 3 times. The only treatment other than a double mastectomy was to take Tamoxifen which controlled the severity of the symptoms. After a year and a half I stopped the Tamoxifen and my symptoms came back within 2 months with swelling and multiple lumps and complex cysts. I could literally feel the lumps growing. I had to restart the Tamoxifen.

I have since had side effects to the Tamoxifen and had no choice but to stop it. The fear of it reoccurring was unbelievable. Luckily, due to another condition I had a complete hysterectomy in which I asked to also have my ovaries removed as there is a connection to PASH and Estrogen. Prior to surgery the symptoms were coming back for the third time. A few months after surgery symptoms decreased.

The density and lumps will always be there but in a shrunken state. Hang in there.

Softballmom04

I went through everything you have explained starting my senior year of high school (1998) with lumpectomies and biopsies. Due to that, combined with history of breast cancer in my family (mom and 2 maternal aunts), I had a preventative double mastectomy 2 years ago. While it was a long recovery process, no longer having to deal with waiting for test results multiple times a year was definitely worth it to me! It is not an easy decision (either way), ultimately you have to do what is best for your physical and mental health! Good luck, and if I can answer any specific questions please let me know

srm1979

Can anyone suggest a doctor or hospital that is familiar with treating this condition? I have been dealing with PASH in the right breast for over 15 years. I had 5 breast reductions and the size and pain still increased. I had a mastectomy in 2017, but I am beginning to feel the same "pain" and see changes in size in the right breast. An MRI last year did show tissue had begun to come back in the right breast. I need to find someone that understands this disease and will take on the challenge of another surgery in hopes of getting rid of the PASH tissue once and for all. I am interested in a hysterectomy at this point... to try and reduce the estrogen that seems to be feeding the PASH. Any information or suggestions is greatly appreciated.

Moderators

So sorry, srm1979 to hear what you are going through! Y ou may want to look at this topic as well: https://community.breastcancer.org/forum/148/topic...

and you may want to do a Search in the community for PASH. There are many people discussing. Where are you located?

srm1979

Thank you, I am in Dallas, TX.

MelissaDallas

srm1979, UTSW would have a great high-risk breast center, and they are the only NCI designated comprehensive cancer center in our area.