My journey begins

Hi Ladies,

Firstly my appologies for not posting an update earlier. It has been 6 weeks since my surgery and I feel good. My surgeon found another 2 smaller lumps in my margins during the operation, which she removed. Just as well as one turned out to be another phllyodes, the other a fibroadenoma. The larger phllyodes mass that was removed measured a whopping 115mm x 58mm x 45mm but luckily everything was benign. WHEW!!! However I am forever cautious of something else turning up, or worse still something happening that goes undetected, so I am thinking of having the genetic test for the BRCA mutations. Has anyone in the phyllodes group had this test? How much does it cost? If I carry any of the mutations I know I would have a double masectomy and full historectomy, as I would not wish to worry about cancer for years to come.

On a good note, my PhD research proposal was accepted and I am about to embark on a 3 year long, full time commitment to complete my PhD. Im excited and nervous all at the same time.

I wish all of the wonderful ladies here on this network all the very best with their personal journeys. I will continue to share mine as it evolves :)

Luv

Tania

xx

Tania you are being well informed by the sound of things and no guessing game going on.  I did not have an MRI, just core biopsy and surgery and my Phyllodes tumour was the size of a guinea pig which I discovered myself.  Being big busted and the PT being well back to the chest wall it was pure chance one day in the shower that I found my surprise!  I remember thinking gosh with a lump this big I should be near death etc and I looked perfectly well.  I had had a lot of discomfort in the back right shoulder blade area beneath it really.  I actually used to say I wonder if you can get cancer of the shoulder blades!  Still have a lot of discomfort in the same area so wondering?!

Like you I believe your Nana had the same as my Aunt and back then when they were misdiagnosed as we suspect everyone was thrown into the same category as the more common breast cancer.  It is also my belief that this is still happening depending on who you get to see. 

Phyllodes Group has grown to 35 members while the Breast Cancer support group is only 28 which I attend.  Lynn kindly invited me to join them since they local so I hope that you find similar in your area.  I dont believe PT is as rare as they first thought, just mis diagnosed as fibroadonema and then bingo later on its recognised as something different and on further investigation they discover Phyllodes.

All the best Tania and keep us posted and I sincerely hope that your surgery once decided is over and done with quickly and then the healing begins.  I dont know if my stinging that took place for 6 mths afterwards is just because I have other connective tissue diseases and my Phyllodes was in the connective tissue or that some others endure this too.  On my 6mth check up my surgeon seemed a bit surprised that I was still reporting this stinging and he suggested Evening Primrose Capsules.  After a week on these I had a noticeable difference but had to use the whole of a very large tub, no quantity on the empty tub but measures 4" x 4" approx before I was game to stop taking them and this did the trick.  Just thought if you suffer this post surgery that you might like to know what worked for someone else.

Cheers to a speedy recovery and no nasty surprises!

Colleen