Log in to post a reply
Jun 1, 2016 11:54AM
Thanks again for being so available to answer questions and support us on this board.
I'm sorry to hear about all you had to go through, but on the same note I'm happy to hear you are well and thriving.
I'm not sure anymore, but I could swear I read about at least one case where non-malignant recurred as malignant later... but I might be mistaken. Sorry about that.
As for my docs. it seems they were not interested in further analyze the tumor or else, meaning, I have no idea about any studies made, or blood tests, besides the biopsies before and after surgery that confirmed malignancy. Is there anything I should ask about it this time?
What I know so far, is that this time the results came back positive again and my lumpectomy it's scheduled for June 17th.
I had an ultra-sound back in Feb which revealed 2 spots which they believed were trapped fluid from surgery.
But in end of March I felt a small hard lump at the same spot of the 1st one, and of course, couldn't believe it as it hasn't being 1 year yet...I waited to see if it would change (as you know Phyllodes grows fast), maybe a mistake, but the fact is by April I thought it has doubled, made an appointment and asked to have a biopsy right away, which she agreed. That day she ordered a new ultra-sound and mammogram before results, which showed it is sitting on the muscle this time.
She had said I would have to remove either way, but by being malignant again, I was told she will have to remove part of the muscle to make sure I have enough margins taken out for a better chance to be clear.
No lymph has been affected, but I still have a CT scan to go (chest and pelvis), to check if it has spread (rare but possible)
About the Oncologist. On my first visit she showed me a webpage for the our County Medical Association and their recommended therapy for Phyllodes or the lack of it, before my case was presented to the Medical Board for rare cases/cancer... in it, was stated that "records showed" in the past that no benefit was observed in patients who had gone through Chemo, or Radiation compared to ones who didn't. Furthermore, there was trials where "localized radiation" had not shown any difference either...
This time my Breast Specialist already contact her, and will further discuss my case, depending on results of the margins, but she said that chances are I will have to go through radiation, but I'd have to wait for an appointment with Oncologist to discuss the course of treatment. I really hope that somehow I can skip it again... but we shall see.
It seems to be the nature of Phyllode to recur.
I feel in good spirits and positive that it shall be just another curve ball and that I will, as well as all of us dealing with this, that we can move on and have relatively normal lives and count our blessing along the way.
Much love to you, and everyone,
Thanks for listening,