Asking Questions and Challenging the Status Quo

Thursday, May 29, 2014

What Exactly Are They Looking for in Follow Up?

Those of us lucky enough to get past cancer treatment and to be declared NED (No Evidence of Disease) are put on a course of follow up from our oncologists. This can start out as every three months, then over time, progress to every six months, then yearly.

As far as I know, once you've had cancer, you'll always check in with an oncologist at some interval for the rest of your life. So, my question is: just what are they looking for?

Actually, I've never met an oncologist who explains this, which I think is odd. The follow up appointments themselves don't amount to much, in my experience. It's a quick physical along with general bloodwork. I think the idea is if there were anything really serious going on, like a cancer recurrence or new cancer, it would be very obvious to everyone. In my opinion, they aren't looking for little things, just big things.

It makes me wonder what those big things would be eight years out. I actually did a little research on this, since like I said, no oncologist tells you. I also looked into it because I have been feeling crappy lately--dead tired, constant headache, dizzy, etc.

I discovered that the risk for a blood cancer brought on by having received both chemo and radiation peaks 5-10 years past treatment. I'm 8 years out. I also discovered that there's a much greater risk for me to get MDS, a precursor to AML and/or AML.

This is because I was younger than 40 when I got treatment, which ups the risk considerably. So, too, does receiving two of the chemo agents I did--the A and the C of my ACT treatment. Getting these drugs in a dose-dense fashion also doesn't help. The usual dosing regimen is a dose every three weeks; I, like most young people getting cancer treatment, received my dose every two weeks. It also turns out that getting radiation boosts as I did, which means a few days of intensely stronger radiation, increases my risk.

I'm all about assuming I'm healthy until proven otherwise and still think this is the case, but I also believe oncologists and all doctors should be entirely up front and educational even about what they are looking for at what point so the patient can help with the monitoring.

Let's remember that I found my cancerous growths myself; if I had waited around for medical intervention to come to the rescue, I'd already be dead.


  1. I just have to tell you that your blog title is by FAR the best I have ever run across. Priceless. I mean seriously. only in cancer survivorship would this statement ever be uttered. I am on year out this week. I just graduated to the every six month visits to my onc. He actually gave me a choice between every 3 or 6. I picked six because I just need some time to breath and at least assume that I am "probably cured". . .

  2. Congrats on the milestone. May we have many more cancerfree years! Thanks for reading.