Square One… why doesn’t someone know about Phyllodes Tumours

Having read more about phyllodes tumours, the outcome and prognosis, available surgeries and recommended procedures but importantly for me at this point, the possibility of recurrence.
 

The reports that I have read and the stories of survivors is that if this type of tumour does recur it is more aggressive in the recurrence and that there are a lot of recurrences. Recurrence can also be within a few months of a complete excision with clear margins. You see that’s the important bit, a complete excision AND clear margins as the first step and, as I said before, some experts recommend adjuvant radiationtherapy after the excision to reduce the risk of recurrence.  The rough statistics are that this may reduce recurrence by 20% which doesn’t sound very much and has to be weighed up with the risks associated with radiationtherapy but I’ve done this and, although I would like to discuss it in more detail with a radiation expert, I believe I’ll take whatever I can get at the moment to increase the odds!

The problem is that as I’ve said before there is little information or research available about phyllodes tumours.  In the US they estimate that there are no more than 500 cases per annum which if the population is 304,059.724, is such tiny numbers… you work out the stats!  In the UK there aren’t any numbers as phyllodes tumours aren’t even coded in the NHS system so you’d be unable to search against the database and find numbers or indeed cases to which to refer!  So I do understand that there is limited information and that the limited resources and research allowances in our medical fields are spent on the more common diseases and illnesses.

Why do I need to tell you all this again, my phone call yesterday from the hospital left me confused and concerned.  My usual nurse is off sick and the call came through from another nurse who said that they had had their group meeting to discuss the DCIS.  They were happy that they had clear margins on

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