Saturday, September 7, 2013

P1: My Breast Cancer Journey - Phyllodes Tumour

I have really struggled whether or not to share my story.  But if it helps one woman / friend / family member to through an experience, it's worth it!

Not only that, I have found writing email updates to my friends and family through this journey has been extremely cathartic.  So blogging about will help even more!

Overview of my Story

Three years ago I found a lump, which they diagnosed as a common benign fluid-filled tumour.  It then grew to the size of an egg. 

They took it out February this year and they discovered it was this rare type of breast cancer called a Phyllodes Tumour. 

They went back in to excise area to get clear margins in May.  Unsuccessful. 

They wanted to do the same again, but I asked for mastectomy.  I received it a week later in June (on the last day of my kid's school).  I enjoyed the summer and recovered.  Sure glad I asked for mastectomy - the tumour grew throughout the breast!  I have clear margins of 0.4 cm on the chest wall. 

Now I'm in the reconstruction stage, with a spacer and two more surgeries to go.

What is a Phyllodes Tumor?  A really rare form of breast cancer.

Phyllodes tumours account for <1% of breast tumours and effect like 1 in 2 million women.  Rare. 

It's a tumor of the connective tissue versus the ducts (the majority of breast cancer) and is classified in three ways - benign, borderline or malignant. 

In fact it was shown under the category of benign tumours on the breast cancer poster in my doctor's office.  That's because only about 30% of phyllodes tumours are borderline or malignant -- like mine.

It grows extremely fast (some women had massive tumours within 2 weeks) and will return within a couple of years if not all the cells are removed.  Borderline tumours are likely to turn malignant.

Chemo doesn't work on this type of tumour and there is still some discussion on whether, and when, radiation is successful. 

Surgical removal is the solution in most cases, with possible radiation if clear margins are not obtained on the chest wall.

Coming Up

I will write in more detail about each stage in later postings.  Hopefully this will help those in similar circumstance. 

Please note this is my experience, and I am not a medical professional.  Please seek the guidance of your doctor for your situation.


  1. well done Chris - I'm sure it will be most helpful to others - you are a trooper!

  2. Thanks for sharing your journey Chris. You have triggered me to be proactive in my own health and along with regular breast exams that I now do, I'm visiting a dermatologist in November to get a few moles checked out.

  3. Hi Chris, thanks so much for sharing your story. I was diagnosed with a borderline phyllodes tumour last April. I have had two surgeries and now have clear margins. I will be sending positive thoughts your way while you continue your journey. Take care