phyllodes tumors

ch75

I have had 2 phyllodes tumors removed and have experienced pain in my breast, sternum, shoulder and ribs. I also experienced a lot of pain when tumors were growing. Has anyone experienced any such pain with phyllodes tumors and upon their removal?

I am currently taking neurotin and it helps greatly. Before taking neurotin the pain was debilitating!

I am very interested in hearing from anyone who has had phyllodes tumors since there isnt a lot of information avaliable.

chrissyb

Hi ch75. I have no experience with Phyllodes Tumors I just wanted to let you know that someone read your post.

I do hope the pain subsides quickly and in the mean time meds are keeping it in check.

Love n hugs.   Chrissy

ch75

Thank you for reading my post.

Best wishes to you:)

annagoanna

Hi ch75, I had two malignant Phyllodes removed by lumpectomy (and 2nd op for clear margins) in 2009.  The pain initially was excruciating at different intervals.  Shooting pains that would take my breath away and some dull pain too.  My surgeon explained it that often breast tissue remembers pain (some people experience sensation of breast feeding many years later)... BUT it does dissipate and get better.  I do still sometimes have pain but bearable pain and very irregularly (mostly during my period).  I am part of a face book group Phyllodes Support Group where there are over 500 people who have been affected by Phyllodes... feel free to join us and ask others for assistance/advice too.  AnnaGoAnna x

ch75

Annagoanna,

Thanks for giving me some hope that the pains will dissapate over time. Also, thanks for the info about the support group on facebook...I will have to join.

Best regards