Newly diagnosed

Hi Tennelle, my tumor was diagnosed as benign with a core biopsy but once I had the lumpectomy the pathology came back as borderline. A core biopsy only takes a sample of the tissue and it isn't until the whole tumor is taken out  that they can completely determine the type. My best advice is make sure you insist they get at least 1cm clear margins around the entire tumour. All the best for tomorrow. Xx Katie.

Hi shiney 50, I have added you to the phyllodes tumor group. You will have access to all the posts in the group and there is also an article that I have added. Please feel free to ask questions and post your experiences when you feel ready. If you put phyllodes tumor into the search bar on this website you will also find other blogs that have been written on the main site like the one you have posted here. Thanks too to all our wonderful members for the great support. Best wishes xx Katie.

Hi Shiney 50,

Sorry to hear you have phyllodes tumour. I suppose the bright side is that we are not a common variety group! The good news is that with surgery hopefully we all will go on to lead long fullfilled lives. We wont have to go through chemotherapy or radiotherapy. I am post mastectomy and reconstruction surgery of seven weeks. It has been along and hard road with lots of complications and I still have more surgery to go through but at the end I will be still alive and be able to live my life with my family. So good luck and just dont put it off for too long as the tumours only get bigger. Good luck!! Lozza

Hello lovely PT ladies

I am having my 3cm PT removed tomorrow. I am very anxious!

I've been told it is borderline, but then read that this is unable to be diagnosed before removal? I get very confused with the different information I read.

What were your experience, if you were diagnosed with a PT prior to you lumpectomy did they tell you it was benign, borderline or malignant or did you only get this information after?

How did your breast look after? My tumour is quite large and with the additional 1cm + margin I am wondering whether I am going to be extremely lopsided. Not that I am that concerned with the aesthetics, I just want to be rid of this. But I do want to prepare myself as best I can.

Wish me luck x

Hello lovely PT ladies

I am having my 3cm PT removed tomorrow. I am very anxious!

I've been told it is borderline, but then read that this is unable to be diagnosed before removal? I get very confused with the different information I read.

What were your experience, if you were diagnosed with a PT prior to you lumpectomy did they tell you it was benign, borderline or malignant or did you only get this information after?

How did your breast look after? My tumour is quite large and with the additional 1cm + margin I am wondering whether I am going to be extremely lopsided. Not that I am that concerned with the aesthetics, I just want to be rid of this. But I do want to prepare myself as best I can.

Wish me luck x

Hi, Shiney!

Nice to meet you, although sorry you're here.

They know very little about phyllodes, but do not believe it is hereditary. It will not respong to diet changes. Surgical removal with wide margins is the only known effective treatment, although some people undergo radiotion therapy with successful results if the tumour has spread.

I have had two surgeries. The first time, I had two phyllodes tumours removed. The margins (the amount of tissue taken from around the tumour) weren't wide enough that first time, so ones of the tumours grew back about a year and a half later. Since having that one removed almost two years ago now with wide margins, I haven't had any problems.

Hope this helps!

Beth

Hi, Shiney!

Nice to meet you, although sorry you're here.

They know very little about phyllodes, but do not believe it is hereditary. It will not respong to diet changes. Surgical removal with wide margins is the only known effective treatment, although some people undergo radiotion therapy with successful results if the tumour has spread.

I have had two surgeries. The first time, I had two phyllodes tumours removed. The margins (the amount of tissue taken from around the tumour) weren't wide enough that first time, so ones of the tumours grew back about a year and a half later. Since having that one removed almost two years ago now with wide margins, I haven't had any problems.

Hope this helps!

Beth

Hi Trena

Thank you for the reply. I found the lump Saturday before last. Knew instantly it was not going to be a good outcome. Having said that did not expect the size or type of cancer I had not heard of. The size of mine is 44mm x 33mm x 29mm when I found it a week ago. I am told the doctor is very good and I hope so. I will post how I get on with the specialist on Thursday. Thanks for the support

Sheena

Hello Louie

Thank you for the support. I am getting a bit lost on the site as I do not quite know how to read posts

however I am stumbling across them. I will keep in touch I see the surgeon on Thursday so feeling okay however apprehensive as it is all new to me

Thanks again

Sheena

Hello Sheena

I'm so sorry to hear your news.

I was diagnosed with a malignant Phyllodes Tumor in my right breast last September. Since then I have had a lumpectomy, then a full mastectomy and reconsrtuction surgery.

My tumor was very agressive and grew very quickly.  From the day I found the lump, it felt like about the size of a pea to six weeks later when I had the lumpectomy, it was actually poking out the side of my breast and when removed was 4cm x 5 cm x 1.5cm in a triangle shape.  It was disected into 15 pieces and 14 of them were malignant.

That is why they decided a full mastectomy would be best option, to ensure good margins were taken with a smaller risk of it returning.

Phyllodes is not hereditory which is a blessing.  It's a rare form of breast cancer that is less than 3% of breast cancer diagnosis.

From what I was told and what I could find on-line, the sepecialists say that chemo or radiation do not have any affect on this type of cancer, so removal was the only option.  That is just what I was told and what I read.  Your specialists may have different information.  You will have to wait and see.

The recovery from the lumpectomy and mastectomy was quite good.  I was suprised how well I got over them.  The reconstruction took me longer to get over but I am back to normal now, 7 weeks post reconstruction.  I was back at work after 2 1/2 weeks.

My thoughts are with you moving forward, I hope your specialist appointment goes well.  Please do not hesitate to contact me with any further queries.  Please join the Phyllodes specific group, it will be a great support for you.

Kind regards

Trena