recurrent phyllodes tumor

[katie285]

I am 21 years old and have already had 2 phyllodes tumors removed (one right breast, and one left)  They were both benign, but the second one recurred just a year after the first.  I have also had two other lumpectomies that turned out to just be fibroadenomas.  My doctor performs ultrasounds on me every three months, and a new tumor was just found that he wants to remove due to my history with phyllodes.  My question is what are my other options?  I am only 21 and am already suffering breast deformation due to all of these surgeries.  Should I get a second opinion or continue having surgeries every six or so months?

[AnnaGoAnna]

Hi Both,

Sadly you're not alone in being diagnosed with phyllodes at such a young age, in a group on Facebook we have some younger than you and even one diagnosed at 16!

However there are over 100 of us in the group, diagnosed at different times, ages, benign/malignant and had different treatments plus been from different geographical locations... but what we all have in common is that we've searched and researched for help, answers and support.  

Feel free to join the group and look through the info and discussion pages of the group but also ask questions - we all understand and will be able to support you - although none of us are doctors or nurses so only from our own experiences.

I also have a blog of my journey with Phyllodes www.**********.co.uk and a reference page on the site where I have tried to save information as I find it (although time has been against me and I need to spend time updating it).

Hugs

Anna

[Nobtschic]

Hi Katie, I recently had a lumpectomy to remove several fibroadenomas and one large mass which came back as a benign phyllodes tumor. I am also 21 and I am probably scaring myself reading all of this research. I just want to be as informed and cautious as possible. Can you share anything about your experience? My doctor is taking the wait and see approach for now and I'm not very comfortable with that. All in all I've had close to five masses on each breast. I'm afraid I'll be dealing with this for a long time. As you said, surgery gets to be frustrating. I wonder if there are any experimental treatments coming available?

Please share what you know! Thank you!!

[Bridget A. Hewitt, RN]

Hi and thanks for using the forum.

Phyllodes tumors are uncommon in your age group (they are typically seen in women in their 40's or older).  So if you have never had a second opinion, then you should do so.  As far as I can find, the only cure for these types of tumors is surgery, so I don't know if you have other options besides that.  You should try and see someone who specializes in this area if possible.  Good luck.

Bridget