Is this cancer, or not.......? (phyllodes tumour)

Hi,

I have been recently diagnosed with having a Phyllodes Tumour, found on histology after a lumpectomy for what was thought to be a fibroadenoma.

Since diagnosis I have been reading a fair bit about the conditon, both here and on other internet sites. From what I’ve found out it’s a rare condition and hard to treat, early detection and surgery being the only option.

I’ve also read this:

“Even though the tumor may be benign, it is still considered a type of breast cancer, because it has the potential to become malignant.”

  • is this correct? Has anyone else with benign Phyllodes Tumour been told this in such clear terms by a breast specialist?

I am slowly getting my head around what my diagnosis means. But, I’m finding it hard to know what to say to people when they ask how I am. It’s good to say that the tumour was benign, but that’s not the whole story. I know that there is still cause for concern… But, if I say I have breast cancer, that can conjure up all sorts of images or months of treatment, me becoming increasingly ill with treatments etc.

I’m just not sure where I stand at the present time…

Hi there shoshana66

I am sure others will be along soon to advise and support you. However, in the meantime, here’s the link to our factsheet on phyllodes tumours. It may answer some of your questions on the subject?

breastcancercare.org.uk/healthcare-professionals/publications/benign-breast-conditions/*/changeTemplate/PublicationDisplay/publicationId/60/

Hope you find this helpful. You may also find it helpful to chat to someone about your concerns. Please feel free to give the helpline a call, they’re on 0808 800 6000.

Best wishes.

Louise
Facilitator

Yeah, I’ve read the fact sheet on this site and it doesn’t answer my question.

The quote I gave is from another site on the internet. Here: breastcancer.about.com/od/types/p/phyllodes_sa.htm

As for the helpline, I may give them a call next week when my boys are back at school.

Thanks.

Hi Shoshana66

Welcome to the wonderful world of Phyllodes! I was diagnosed with malignant Phyllodes (cystosarcoma phyllodes or sometimes spelt phylloides) in September 2009 so can fully understand your frustration and angst at not being able to find good sources of information… I searched and eventually found quite a lot about it via different sources, most of which I have linked on the reference page of my site www annawallace co uk

However Phyllodes is a rare cancer, a soft tissue sarcoma to be exact. We are however treated surgically in the same way as many breast cancer operations and therefore get grouped with breast cancer and indeed can be found loitering in most of the breast cancer forums and charity websites looking for answers, support and fellow Phyllodes people.

As Phyllodes is extremely rare there isn’t much accurate data or clinical trials, drugs or treatments that are/have been tested on enough people to say accurately that it’s right or wrong. However that having been said, we do know that it doesn’t respond to chemotherapy. Surgery is the most effective (I believe) course of treatment and that is removal of the tumour AND clear margins - clear margins are critical and I understand should be 0.4 cm of clear tissue surrounding the excised tumour.

Radiation is treated differently in the UK for Phyllodes compared with the US. The US do carry out some radiation for malignant phyllodes however in the UK I was told that this should be only given when no further surgery is possible or the clear margins were unobtainable.

I would suggest that you speak with your consultant and also ask to be referred to a sarcoma specialist for any further advice.

Oooh couple of other answers.

“Even though the tumor may be benign, it is still considered a type of breast cancer, because it has the potential to become malignant.”

Not if you get the whole tumour and clear margins… risk of any recurrence is substantially reduced.

"But, if I say I have breast cancer, that can conjure up all sorts of images or months of treatment, me becoming increasingly ill with treatments etc. "

For the most part, those diagnosed with Phyllodes will have two operations - one to remove the tumour (and then discover it’s phyllodes) and the second to obtain clear margins. Nothing more and certainly no chemo.

I hope the above helps and do have a look at the reference page on my site as I’ve tried to put lots of links to different information up there as I know the struggle to find some!

Hugs

AnnaGoAnna
xxx