HELLO FROM OXFORD

[PanP]

Hi Verity. Thanks for posting your story.

Who was it that came up with the idea of having proton therapy for your son? George had radiotherapy for his rhabdomyosarcoma and that was almost certainly the cause of his basal cell carcinoma 11 years later. We also think it might have been a cause of the osteosarcoma that he had as well, but as you know you can never be sure of these things. It’s great that you managed to get it done on the NHS too.

And it sounds like you’ve got a very active surveillance program going on too – this is a big topic and I know that other people on this forum are concerned about getting more than just a ‘wait and see’ approach from their doctors. Did you genetics team suggest it?

[pennysophia]

Hi Verity,

Thank you for sharing your story. I’m so sorry to hear about your brother, your mother and your son. I am so glad to hear you are cancer free so far and so vigilant with your health and the health of your children. It sounds like you are a warrior like my Uncle Pan! Having lost six relatives to the disease and all of them having genetic mutations, I know that it is a constant battle to receive good care and vital information and I applaud you for fighting so hard.

I hope the trust and my Uncle Pan can help you in any way we can and I really do wish the best for you and your family x

[Verity]

Thank you pennysophia. I am already VERY pleased that your uncle decided to set this support forum up. Once the news gets around about it, hopefully we will get a few more members (not that we really want that, but you know what I mean).

[Verity]

Pan, would it be worth me starting a new discussion to mention about Proton Therapy and to talk about my surveillance program?

[PanP]

Yes, definitely. Alternatives to radiotherapy are worth knowing about!

[Author]

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