SECOND OPINION?
Sara has been very lucky to have Aunts in the US who have been very active in their search to find out about DSRCT and in their belief that Sara should get the best treatment possible.
Nancy (Taylor) Mason and Michael Mason have been doing a lot of internet research and came across a few articles and a few WWW-sites that discuss DSRCT. What was found out was that pretty much everything we would be and have been told by our doctor at the British Columbia Cancer Agency (BCCA) was what was known and researched in the clinics in the US that have been treating and researching DSRCT. One of the foremost was the Memorial Sloan-Kettering Cancer Centre, New York and the contact doctor there was a Dr. Kushner who had written an article for the Journal of Clinical Oncology (1996 May;14(5):1526-1531).
Our BCCA doctor is Dr. Meg Knowling (she has treated 3 people already with DSRCT (in all of North America there have been probably only a few dozen cases total since 1986 ).
When we received a lot of information from Nancy and Michael. Lee, Sara's dad, passed that information on to Dr. Knowling. In the meantime Nancy contacted Dr. Kushner who said that he would be willing to consult with Dr. Knowling if she so desired.
At this point we felt (and still do feel) quite confident with Dr. Knowling and the BCCA. At our initial consult with Dr. Knowling the information we received seemed to corroborate what we had researched, including the chemotherapy protocol's (except the possible use of Ifosfomide - because it could possibly interact with Sara's Paxil).
We received a call from Dr. Knowling and when we met her she said that she had been in contact with Dr. Kushner at Sloan-Kettering and that she had also contacted her usual consult Dr. Jim Miser Chief of Paediatric Oncology at City of Hope in Los Angeles (Dr. Miser is Mayo trained as was the pathologist Dr. O'Connell at BCCA).
Dr. Kushner suggested surgery then chemotherapy and then more surgery. But Meg said that two anaesthetics close together; the fact that the surgery would take a long time to heal and push the start of the chemotherapy later; and that there could be post-op infection and later complications that would be problematic with the chemo, were reasons not to go this way - in Sara's case.
Dr. Miser on the other hand suggested that it would be best to first see if Sara responds to the chemotherapy. If she doesn't then why make her suffer a surgery. If she does then the surgery will be easier because the tumour will be smaller, and the edges of the tumour will be smoother and the surgeon would be able to get at and excise the tumour(s) with greater ease and certainty.
What I have come to realise is that each person, each case is very different. There are many ways of approaching a cancer but, especially with DSRCT, each person is a new set of discoveries and requires a fresh look. It is all well and good to look at other results because they give guidelines, but it is the first hand experience, the immediate person and their immediate problem that must be looked at and treated. I do not say this as a reflection upon Dr. Kushner or Sloan-Kettering, but I will state that the British Columbia Cancer Agency is an exceptional facility and I feel that Sara will receive the best treatment that she can get here - with the support of our Health Care system which, despite its faults and reputation, is still what is making it possible for Sara to get this treatment - regardless of cost.