Phyllodes tumors and birth control?

luckykitkat09

I was diagnosed with phyllodes tumors back in 2011 when I was 20, and had a double mastectomy a year later. Now I'm 24.
I don't have a family history of breast cancer and wasn't on birth control.
My breast doctor and surgeon then told me that phyllodes tumors aren't estrogen related though. However, I've tried to do online reaserch and I'm not so sure about it.

However has anyone with phyllodes tumors able to go on oral birth control after their surgery and treatments? I was denied even though I was told by my surgeon that it was okay.

caybarbe

I have had a mirena iud for a while now. I had it put in about a month after diagnosis. Had it through my surgery and radiation. I have two oncologists, both said no problems with it. Mirena the hormones stay in the uterus. I know there are certain  cases where phyllodes also can increase the chances of other cancers though, as long as they didn't say there was a chance of that (it's a rare genetic disorder)  you're good to go! Also was diagnosed at 21, rare before 40 so I'm in a similar boat! They did just discover another mass growing in the same breast, crossing my fingers it's nothing though. How was the double mastectomy at your age? They tried to save the breast tissue, but it's honestly painful, and now I just worry all the time about a regrowth. How has dating been since? They are looking at it for me, so any help would be appreciated.  

luckykitkat09

I'm on the copper IUD so no hormones..they (my gyno clinic not the oncologist) are afraid of giving me hormones mostly since they don't know much about Phyllodes and all. I didn't know that phyllodes were genetic....I'm the first to have it in my family. Probably should've made an appt with the oncologist but I haven't seen them since my mastectomy 3 yrs ago.

I had a lumpectomy at age 19, double mastectomy at 20 and reconstruction at 21. (I'm redoing my reconstruction with tissue expanders again cause I wasn't happy with the implants) but I haven't had any problems with a tumor since the mastectomy.
The mastectomy was horrible, it took me a month to move my arms freely and drive again (it varies for everyone but I guess because I am petite and didn't have much tissue it was a long recovery).

I wouldn't worry about regrowth so much. Are you or did you have nipple sparring? I had nipple sparring so I have a tiny miniscule % of regrowth. I didn't have radiation or chemo either. I trusted my surgeon and she took care of me when I had the lumpecomy and the double mastectomy.

Dating....well non-existent? haha! How about yours?
I don't have many friends who know of my surgeries, so i makes it hard to talk to them about it but ...I have 3 guy friends who know. They don't seem to mind it actually and would joke about feeling my implants (when I had them) cause lost of nerve endings. But I haven't had a boyfriend since the mastectomy and honestly I wouldn't know how to start that conversation with a guy I would date.

devonc

I had a lumpectomy at 15 for a 8cm+ phyllodes tumour (benign). None of my doctors have mentioned anything about hormonal birth control, but I worry if it's just because I was so young that they weren't concerned. I can't find any information about whether or not phyllodes are hormone sensitive and I'm going in for an IUD insertion later in the month. Does anyone know if they are hormone sensitive?

Moderators

Hello devonc and welcome to our community.

We're glad that you've found us and hope that the boards will be as helpful to you as they have been to others.

This thread hasn't been active in over a year so you may not get responses but we hope you don't get discouraged.

You can also post in the Lumpectomy Lounge and the Phyllodes Tumour: Newly Diagnosed thread to connect with others.

We hope this helps,

Best wishes,

The Moderators.

luckykitkat09

Devonc I was told it isn't. But the obgyn clinic I go to still won't let me take birth control with estrogen so my only options were the paraguard IUD or the mirena IUD.