I neglected to tell you something… a friend sent me a link to an article written in The Independent newsletter about one of the journalists’ journey with breast cancer and the important role that Facebook took in her ‘sanity’. Independent’s article – 18/11/09
I’ve also been prompted that there is a trial being undertaken in the UK (Cancer Research Trial) and I have written for information about how my data/case can be included in this trial. I am adamant that research is conducted and awareness heightened to this type of rare cancer. Yes I’m aware that the numbers are small but it’s real and it’s happening to me (and my fellow phyllodes survivors) and is in our minds every day and if I can do anything to ensure that anyone else diagnosed is able to find answers and that the medical teams who are faced with this are able to advise their patients with honest factual information, therefore whatever I can do to share my data and experience, the better.
Another few gems that I’ve discovered:
Clear margins in regards to a phyllodes tumour are a clear 2cm margin – much larger than a normal breast cancer.
Regular breast cancer travels via the lympthatic system -v- phyllodes travels via the blood vessels. (question – by carrying out tissue reconstruction could this mean that the phyllodes tumours set up new network of blood vessels for any rogue spindle cells to travel to and metastase)
The mitotic count is imperative to get from pathology/histology to establish how active the tumour is/was. The hore active the tumour the higher chance of recurrence.
Check also whether it had hormone positive receptors. Some believe that phyllodes are hormone negative but often they turn out to be ER+/PR+.
Radiation thereapy is generally carried out only once the wounds have healed – radiation can slow down the healing process.
Obviously this is only from my enquiries of others and research I have carried out and I’m not medically qualified so should I be accepted on the UK trial, will ask these questions of the medical experts!
Oh and the hair is red again… I needed some more colour this morning and I was feeling a little faded!!
Oh, oh and one final point for today.. apart from wishing you all a wonderful weekend.. less pain last night so will keep up with the paracetemol for a while longer. Yippeee!