21 years old, phyllodes tumor/fibroadenomas.

Djw96

I'm 21 years old and discovered a lump in my breast when I was 18. (Might've been there a year before I discovered it). After many different opinions, many thought it was simply a lump or a cyst. It turned out to be a benign phyllodes tumor which is rare in women my age, and in general, really. So I had it removed, March 2016. A month after , i had a second procedure to remove a bit of tissue so that the lump would have a "low chance" of returning. Then, with a May 2017 follow up, they discoved another lump, growing back in the same spot which was alarming to the examiners. So, I had a biopsy, determined it to be a fibroadenoma, which was followed by another surgery, my 3rd, in June of 2017 for removal. Yet again, I got a follow up sonogram in December of 2017. I got my results in a few days, turns out I have another lump yet again after just having had one removed 6mos prior, and this one is growing quicker, if im not mistaking, it's bigger than my first fibroadenoma. I had a biopsy as well as a mammogram within the next 2 weeks of hearing those results. The biopsy determined it to be another fibroadenoma and my mammogram was completely pointless (they told me it can not determine anything whatsoever because of my age and it's density, so I'm not sure why they made me get it squished for nothing). I felt relief hearing that my results came back normal, then completely upset once she told me the mammo couldn't read anything, (even if something was there). Because it's benign, the surgery is completely my decision. I'm not sure if to get it or not. It gives me anxiety just knowing that its there, and I rather it be gone. However I think about yet again another scar. It isn't painful nor huge to where I can even feel it, however it is a more sensitive breast and I sometimes do feel strain coming from that area. Even though they are benign, I always think of the fact that the first one was a phyllodes tumor, something that had a chance of being malignant.

Anyone share this experience? Should I have it removed?

Moderators

These are really great questions for you doctor (surgeon, med oncologist, etc.) We are here for you, and hope you find answers soon.

ps0705

I had a benign phylloydes tumor at 21 (golf ball size) which the surgeon did not get clear margins on. It returned and grew to golf ball size again. I had it removed again along with ADH. Later in my 30's had biopsy for complex cyst and then fibroadenoma. I have an aunt who died of breast cancer at 34 years of age with 5 kids. I was high risk and still all of that was benign. I would get it biopsied for peace of mind but odds are it they just didn't get clear margins. It could continue to grow until it is cleanly taken out.

Best wishes for whatever you decide.

Djw96

Well the last biopsy I had said it was a fibroadenoma, so because of that the decision for removal is for me to make. Not sure if to do it or not, but they did tell me it was growing quickly.

Giselle20

If it was me i would just have a double mastectomy in a heart beat. Because in my mind i would think that my body is prone to developing tumors and at some point one of those may be cancerous. And you have probably already read that women who have had benign findings are at a slightly higher risk. But like ps0705 said it might never come back or develop into cancer.

Also the mastectomy wouldn't take away the risk 100% but would lower it drastically, like all procedures it has possible side effects. Also if/when you have children you wouldn't be able to breast feed and that might be important to you, or maybe you value having breast because it defines your womanhood and femininity. But personally I would go for the mastectomy because i would hate having that constant threat looming over me and all the back and forth and if it ever did turn into something i don't know how well i would handle it. But that,s for you to decide, make a list weigh the pros and cons, talk to your doctor, research online, do whatever you need to do.

If you did choose to get on then on the plus side you could get a boob job. Also there are different types of mastectomies, some nipple sparing( with a slightly increased risk as opposed to a full mastectomy), skin sparring mastectomy, radical mastectomy, modified radical mastectomy, and a regular mastectomy.