Finding a doctor for follow up care

Jules10K

Hello. I was dx WT at age 3 in remission for more than 30 years. I knew I had some lingering problems due to the cancer and treatment. Other problems I've discovered one at a time. As I get older I'd like to avoid more Cancer Surprises or at least be prepared for them. So I'm looking for a doctor who focuses on treatment of cancer survivors.

I located a couple of clinics for LTFUC in my area but they require records of my treatment. I understand this requirement because the incision scar doesn't prove anything, but it is rather frustrating since those records went to the incinerator 30 years ago.

Should I start with a visit to an oncologist? Or does someone know of a clinic in the D.C. area that doesn't require records?

Thanks!

Tethys41

Naturopath
I have worked with naturopaths throughout my journey. They seem to know a whole lot more about how the human body works that oncologists do. Oncologitst treat cancer...that is all they do. Naturopaths get the body healthy. I'm sure you could find a good one in the D.C. area. Good luck.

cathyp

What was your original dx?
Have you called the clinics and spoken with them directly re your records. I go to a clinic at Memorial Sloan Kettering Cancer Cener in NYC. I almost can't imagine they would turn you away without records. Have you been seeing doctors/specialists at all in the last 30 years? You could gather all those records up, at least 7 years worth. I believe MR's are to be retained for at least 7 years. Seeing this doctor has given me a greater sense of security considering all of the long term effects we survivors could encounter. Good Luck! Cathy

Jules10K

cathyp said:

What was your original dx?
Have you called the clinics and spoken with them directly re your records. I go to a clinic at Memorial Sloan Kettering Cancer Cener in NYC. I almost can't imagine they would turn you away without records. Have you been seeing doctors/specialists at all in the last 30 years? You could gather all those records up, at least 7 years worth. I believe MR's are to be retained for at least 7 years. Seeing this doctor has given me a greater sense of security considering all of the long term effects we survivors could encounter. Good Luck! Cathy

dx = Wilms'
Thanks. One clinic has turned me down because I couldn't get my treatment records. Really, after I turned 18 the attitude was "Well, you're still alive and your WBC is normal. Don't smoke, drink lots of water, bye!" But that was medical knowledge then. And for several years I didn't have insurance. Long story short, my current doctor (general practitioner) is the only one who has any records for me and aside from my health history, the records only contains the usual stuff, and little enough of that.

So I've been lucky but I don't want to push my luck. That's why I thought a practitioner who is aware of the long term effects would be a good idea.

cathyp

Jules10K said:

dx = Wilms'
Thanks. One clinic has turned me down because I couldn't get my treatment records. Really, after I turned 18 the attitude was "Well, you're still alive and your WBC is normal. Don't smoke, drink lots of water, bye!" But that was medical knowledge then. And for several years I didn't have insurance. Long story short, my current doctor (general practitioner) is the only one who has any records for me and aside from my health history, the records only contains the usual stuff, and little enough of that.

So I've been lucky but I don't want to push my luck. That's why I thought a practitioner who is aware of the long term effects would be a good idea.

I have come to know of other
I have come to know of other WT survivors on the ACOR website for Long Term Survivors. I can't recall if they see a LTFU specialist but they do discuss their management of the LT effects. Don't give up, keep trying to find a clinic that will accept you.

nfu

Post Cancer Care

My cancer came back and I refused treatment in December. Today, PCP's are supposed to do it. Make sure you get a good one.