Will anyone ever understand Phyllodes?

When I was first diagnosed with a Phyllodes tumour, all the information I could find related to the tumours affecting the breast tissue.  Indeed the association is that Cystosarcoma Phyllodes is a breast cancer – it isn’t it’s a soft tissue sarcoma.  However there was always some comfort in the belief it was a breast cancer, surgeons know how to operate, support networks know how to relate, friends and family can compute what this means etc etc.  And for me, I believed the ‘rumours’ that it would only ever be in my breast tissue and therefore could be treated surgically.

As you will know from posts earlier this year, my comfort blanket of information was shattered when a friend from the US (Lynda) passed away when a new Phyllodes tumour grew in her brain.  My knowledge of phyllodes told me this was impossible but there was another part of me that knew that due to the rarity of Phyllodes, no one really knows.

This week another dear friend (again from the US and again whom I met in Atlanta) has had surgery to remove a Phyllodes tumour from her mouth.  She has undergone an 8 hour surgery to her mouth and jaw. She has just been woken and has a tracheotomy and will remain in hospital for 10 days or more.  She is unable to talk or walk and will be sent home with a feeding tube.  All this for someone who is 24 years of age and was told when she first saw the doctor that she was too young to have cancer.

Jolene is an incredible lady who has endured so many surgeries, treatments, drugs and trials but somehow always manages to laugh or joke around – Jolene’s tumour humour is legendary!  It’s rare that Jolene isn’t smiling broadly.

I tell you this for two reasons:

1/  Please keep Jolene in your thoughts and prayers.  She’s a fighter and the first thing she did when she woke from the operation was to ‘give cancer the bird’.  Feel free to shout out the war cry “Phuck Phyllodes“!
2/  The conference/event in London is for breast cancer survivors, not Phyllodes.  However as the surgeries, support and emotional and physical affects are the same, I would love the conference to also be a source of new friendships and support networks for my fellow rare Phyllodes survivors.  If it is at all possible, I also aim to have a keynote speaker at a workshop discussing Phyllodes.

I am reminded at times like this however that I’m blessed to have found such a wonderful support network of people affected by Phyllodes and whom support each other through our journeys.  As you know they were so terribly important to me during my difficult times and I’m now able to help others through theirs.  This website has been found whilst trawling the internet, by a number of newly diagnosed ladies and I’m so proud that I put it together to help, even just one.  On the other hand I am always saddened when I receive an email from someone else newly diagnosed.  The most common things I hear are that their doctors haven’t taken them seriously; have told them their too young to have cancer (sometimes sending them home previously); that Phyllodes isn’t Cancer; that they don’t know about Phyllodes; that they can wait for surgery despite the tumour’s quick growth; and more… Sadly the stories are often the same and incredibly hard to equate when newly diagnosed.

If you get the chance to ever mention Phyllodes, please do so… I’d love to think that sometime soon, someone will be newly diagnosed and hear the doctor say ‘I know about Phyllodes’.

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