I am a 2x childhood cancer survivor and just celebrated my 34th birthday!

Hi there: Happy Birthday! Aren't birthdays really something to celebrate?! I will be celebrating my 32nd birthday at the end of June. I was diagnosed with Wilms Tumor when I was 2, which metastesized to my lung a year after that. The prognosis was grim, but here I am.

I see you also posted on the late effects discussion group. I have many problems myself. I have just started on a path of discovery to understand exactly what my treatments were and how to deal with this over the long haul.

I, too, was excited about this group and hope the discussion groups flourish. Like you, I have had difficulties finding other adult childhood cancer survivors to relate to. Before very recently I wouldn't have even known where to look.

I must admit that I wish the discussion groups that I am interesed in were more active, but I agree that it's a great service.

How is your health these days?

tom_s said:

Hello, I see you have been looking into the treatment you had when you were ill. I had Leukaemia when I was 9, which is 12 years ago now. About two years ago I too started looking at what had happened while I was ill and about a year ago I asked for and got photocopies of my notes from the hospital where I was treated, which have been interesting to read.
Tom

Hi Tom:

Yes, I am looking into the details of my treatment. There was an article recently in the Journal of the American Medical Assoc. (JAMA) publishing the results of a survey that determined what a sample of childhood cancer survivors remembered about their treatment.

I see that you are living in the Netherlands, so I don't know if you hear much about JAMA-but it's our premier medical journal. At any rate, it showed none of the participants really knew the specifics of their treatment. A few didn't even know they'd had cancer.

That article came across my desk, as I work in the health field. I realized that I couldn't have answered most of the survey questions myself. That was huge motivation for me to order my records. I won't get them for a month or so, as they are so old -- they'll really have to dig them out of deep freeze.

I hope that you what you learned will aid you in getting good medical care and help you to avoid late effects, or at least spot them before they get out of control.

I also hope all is well for you now, Tom, and that you are happy and healthy.

It was nice of you to write. What a great thing to connect with people from so far away.

Take care,
Fran