I have posted this for new user Kim.
I’m new to this site and would appreciate any information that anyone can supply. I will start by giving you a brief history of myself. I am 48 years old and a mother of an Autistic 17 year od son. Back in 2005 I found a small lump in my left breast which turned out to be a cyst which I had drained. Back in December last year I found another lump in the same breast which again turned out to be a cyst and was drained. The specialist I saw at the time alerted me to the fact that there was a secondary lump in the same breast which he could surgically remove, he said not to worry he was pretty sure it was a Fibroidema. I was unaware of the lump and it had caused me no problems so I opted to leave things (taking the attitude if it ain’t broke it don’t need fixing).
Well back in March this year this so called secondary lump surfaced in my breast. It measures approx 5cm (this is just my doctors visual interpretation). My doctor has referred me back to the breast clinic at my local hospital and has told me he is pretty sure I have a phyllodes tumour due to it’s rapid growth and current size. And that although not diagnosed as malignant yet to be prepared that all phyllodes tumours are treated as malignant due to their potential to grow into cancer and that it will more than likely be removed. I am very worried I know little or nothing of a phyllodes tumour or just what to expect can anyone please advise me?
Hi Kim, just wanted to say hi really as can’t offer any advise re your particular type of tumour. Am sure someone will be along soon though.
Hi, sorry that you have had to join us on this site, but welcome, i´m sure you will find it a pretty positive place to be.
I am no expert, but this type of tumour can be belign or malignant, they can sometimes tell by the shape of it via a mammogram, but normally will follow this up with a biopsy, this is not painful, but strangely uncomfortable.
I´m afraid the worst part is the “waiting Game” waiting on results, this can play havoc with your nerves…
Good luck, positive thoughts and whatever the outcome it is doable, and we are all here for you…
Love Teresa xxx
Posted for Kim,
Hi Hurdy Gurdy and thanks for introducing yourself it’s comforting to know that someone is at least reading my post. xx
Hi Kim, the waiting game of the unknown is defo the worst part, keeping my fingers and toes crossed for you, it turns out to be benign
sorry I cant be of any more help, please let us know how you get on
Hi Kim, no help here either, but just to say I also have a autistic son, nearly 16, he wasn’t sure how to react when we told him, last nov, but now after surgery he calls it my war wound and tells me to get some sleep to make myself better, bless him.
I can offer you some advice! I was diagnosed with a malignant phyllodes tumour in September of last year and I totally understand that there’s very little information available about phyllodes tumours and the need to search for info. I’ll try to help with as much information as I can.
Tumours can be benign, borderline or malignant. Can also be referred to as cystosarcoma phyllodes or phylloides. It is a soft tissue sarcoma which usually presents itself in the breast tissue. They are often misdiagnosed at the time of biopsy as they are so rare. Phyllodes are treated in the same way, surgically, as breast cancer. School is out as to if radiation works as part of the treatment (US and UK differ widely). Phyllodes does NOT respond to chemotherapy.
My story - I was diagnosed as a benign fibroadenema and histology after lumpectomy to remove lump showed it as being a malignant phyllodes. I had a second surgery to obtain clear margins (absolutely ESSENTIAL for phyllodes).
I found information in a number of places. Rare Cancer Alliance (rare-cancer.org/) - site has some information and there’s very active forums with other phyllodes survivors. Facebook groups (‘Phyllodes Support Group’ AND also ‘Phyllodes Tumors, CystoSarcoma Phyllodes, whatever it’s called…’) - two groups with good discussions and notes about each of our journeys but also supporting eachother. answers.com/topic/phyllodes-tumor
I also put a website together of my story and I’ve added as many reference sources as possible as I have found them. annawallace.co.uk.
I was treated by the Royal Marsden in Kingston. Where are you based? Do you have a date for surgery?
Please do post other questions and I’ll help answer whatever I can. I can remember being so relieved when I found someone who actually knew what this was and could relate to my need to answers or share their research with me so that I can take some control over my health.
Hugs - you’re not alone
Hi Kim, and Welcome. Im guessing you should have had a result by now, or if not then very soon? I had to wait an extra week for my diagnosis despite having a one-stop clinic, and it was awful waitng, but once you know for sure what sort of monster you are dealing with, things get clearer and you can choose your weapons accordingly, Don’t forget HOPE and HUMOUR. (and chocolate!)
Phyloids (sp?) tumours were mentioned as a possibility during my diagnosis stage but in the end after a core biopsy my surgeon decided it wasn’t a phyloides, it was a low grade mucinous lump which can also get quite large because of the mucus they contain.
He was surprised because they’re meant to grow slowly (mine came up pretty fast) and mostly affect older (not me) postmenopausal (no) ladies (okay i grant him that one!) But they did find that it hadn’t spread, and i’m only doing radiotherapy now to miminise the recurrence risk becasue im classed as young (ahhhh) if i was ten years older i wouldn’t be doing it.
Good luck Kim and let us know ho you get on - lots of people here will understand even if your diagnosis is not exactly the same, we have many issues in common at various stages: rads, chemo, surgery, what to wear, reconstructions, getting back to work, family reactions…not everyone does every stage, but we can all offer help and support. We will listen when you want to yell, and someone will turn up with the facts or experience you need.