We had a skype consult with her on Friday night. She used to be half of the Gawler Foundation in Australia but says it has changed a lot since she was part of it. She comes strongly recommended by a family cousin who found her to be an intergral part of her own journey through breast cancer. She seems to be an advocate and liason and information vault for people with cancer. She seems to have an extraordinary amount of knowledge, experience and contacts.
The first thing she said was that she was not happy with the FEC-T treatment. What a surprise, neither are we! She also asked what our results from our CEA test were - I had never heard of this and she seemed to think it was very remiss of the onco to not have done one as it is a standard marker of disease, even in NZ.
She is very very confident in the CTC test, and her advise was to start with a new oncologist, continuity of care and care tailored to our particular situation. She is going to try to find an oncologist who is aware of CTC testing in NZ (she has access to who attends their conferences) and if that shows nothing we may have the option of going to the gold coast and seeing an onco there.
She was more than helpful and had lots to offer. So our road now is CTC, and finding another specialist (who is not a tight lipped, power tripper) and getting more info on GnRH. It's frankly fairly exhausting but we have found ourselves well supported by friends and family and people we don't yet know :-)
I'm so sorry you have to go through all of this! I am glad that you feel well supported by friends & family, though.
ReplyDeleteSending you good vibes & such...
Don't discount the Gawler Foundation, we went there in February and it was WONDERFUL, can't rate it highly enough.
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ReplyDeleteHoward packer