IP

Any cancer is scarey when you first are told you have it.  BUT I found that you need to have contact with people who are in your same situation.  The BCNA has a Phyllodes Tumor support Grouop....There are about 60 of us and we talk about how we feel most of the time. 

My lump was in the right  at about 1 oclock if you can imagine that on a clock face.  I found it in a routine check in the shower and it was the size of a golf ball.  Oh yes...they grow quick as I hadn't noticed this one much before.  As I had had some busy times in my life before my diagnosis I hadn't noticed pain in my breast before the surgery...but it may have been there and I ignored it. AND I had been slack with getting routine mammograms and even doing my own breast checks.... Silly  me!!!!  Sometimes I get that pain from the armpit to where my lump was before they took it away.  My surgeon tells me its nerve pain.

My surgeon ask me how I wanted the lump removed and I chose a lumpectomy.  It was personally what I wanted as there was no evidence of any other lumps in the right or left breast. 

There is wonderful support available to you especially with your Breast Care Nurse, this web site, The Phyllodes Tumor Group on this web site and as your journey to health starts...you can link into support groups who meet in your area as well as a huge amount of information.  If you feel comfortable on the BCNA web site go to the home page and order a package called "Your Journey".  It's a free information package with lots of info and resources for you. 

I won't bombard you with too much info but I hope what I have given you helps. My diagnosis and surgery was only in May and again in June this year and I have learnt so much along the way.  The greatest thing I have learnt is to take one day at a time.  Decide what way you feel is right for you with your surgery and put trust in your Doctor/Surgeon.  That's step one.  Recover from that.  Then take the next step.  You are like all of us ...we don't always know what happens next but we are all here to support each other.  Believe that you will be alright. 

You are welcome to talk to me on line whenever you want.  I don't have all the answers but I will listen and help where I can.  I am back at work so if there is any delay in my reply it's due to other commitments

:) IP

Trust me to be the one who gets a rare cancer .... that is even more rare when its malignant.....doesn't respond to any treatment other than surgery .... this is scarey stuff and I am on my own.  Sure I have friends and very few family around ...but even though I love them to bits...they don't get it.  They think that I can still be how I was before and I'm not.  I have changed so much even in a short space of time.  Some changes are for good...Some I have work on...Does that ring bells to anyone else out there?

Everyone out there in blog land is so amazing!   Your stories of hope,encouragement and inspirational are just wonderful.  The challenges you've all had!  The strength you all show is just mind blowing! Sometimes when its the middle of the night and I am unable to sleep I have sat and read posts that all of you have written and laughed, cried and sympathised with so many and at the same time felt so close to all of you.   Thank you xo

If I can just say as a woman in this world who has had a life changing diagnosis and all that goes with it...Just like all of you... That I am proud of you all. 

Would like to make contact with someone  who has had a diagnosis with the rare malignant phyllodes tumour......Like me.....  I'm slowly healing after having 2 ops removing the lump.  I live in NSW. In a suburb of Sydney.  Please talk to me :)

Would like to make contact with someone  who has had a diagnosis with the rare malignant phyllodes tumour......Like me.....  I'm slowly healing after having 2 ops removing the lump.  I live in NSW. In a suburb of Sydney.  Please talk to me :)