phyllodeTumor Information

Ajmcgarrh

okay so I am 29 and in January I noticed a lump went through the steps of ultra sound, biopsy , and the results it's a phyllodeTumor. I had it removed in Feb. Now it's June and I recently saw my doctor again for another lump in the same breast. While I was there getting lump number two checked out they also looked at where my phyllodes was removed and it's back! In less than 5 months of having it removed it came back ! I go next week to have lump number 2 biopsied. My questions is how long have you all been fighting with phyllode tumors ? Anyone decided to have a mastectomy and reconstruction? Anyone ever had more than one phyllode in the same breast ?

Ajmcgarrh

also my phyllode Tumor was

jmjlori84

I'm sorry I can't be of help, but I'm anxiously waiting to see if my 4 cm lump I just had biopsied an hour ago is a phyllodes tumor. I would like to follow this thread.

Please post whatever you learn. :-)

~~Lori

MahtaMouse

I am so sorry and hope that things are progressing well with your treatment. I was 20 when I accidentally discovered a lump. Long story short, I had a "needle biopsy", followed 2 months later by a lumpectomy. This was cutting edge back in 1973; done in Europe, but considered to be too risky here (a second opinion recommended a mastectomy). Fortunately I was going to a teaching hospital and had a great surgeon who specialized in breast cancer. Unfortunately, three months after my lumpectomy the tumor returned in the same spot. I had a second lumpectomy with more tissue removed (wider margins). Three months later the tumor returned; again in the same spot. A third lumpectomy was performed with a much greater amount of tissue removed. On top of that, I was told that he had to peel the tumor off my chest wall. This time I was left with a huge dent the size of my fist in my breast that can only be described as a lump of bread dough that someone has punched down. My breast was/is also a full size smaller and I was left with a "star gazing" nipple. Needless to say, at 20 I was nearly catatonic with shock over what I'd been going through over the previous 11 months. Then, one month after my third lumpectomy I wanted to have a break down when it was discovered it had come back a fourth time. Another surgeon was called into the room and I heard them in back of me discussing radiation, but then decided it wouldn't "work" for this type of tumor. My surgeon decided instead to monitor me closely. For the next 5 years I went in monthly for exams and measurements before finally being told I was ok to continue my care with a yearly checkup with a gynecologist as long as I also had a yearly mammogram. It's been 41 years now and every once in awhile the tumor feels like it becomes larger as well as painful... and stupidly I never go in to have it checked, out of massive fear. Now my daughter is terrified because of some localized breast pain she's started experiencing and all I can do is try and come up with some benign reasons for it until she gets to her own doctor in another week, while trying not to let her know that I'm worrying myself sick as well.

I'm sorry, I know this isn't exactly what your were asking... fingers crossed and wishing you luck!

Moderators

Hi MahtaMouse, and welcome to Breastcancer.org!

Thank you for sharing your story on the boards, we're sure it will be of help to others! Hope your daughters pain is nothing but a benign condition. Please let us know the appointment goes!

If you need any assistance, please don't hesitate to reach out to us. We hope to see you again on the boards!

The Mods