So I just read an article about how doctors don’t really know anything about long term cancer survivors and how their treatments affect their health many years after the fact. I kind of already knew that (from being a cancer survivor and dealing with doctors), but still. Awesome.
I was actually going to link to a site listing the long term side affects of the drugs I was given 20+ years ago, but lo and behold… such a site doesn’t seem to actually exist. The information out there refers to side effects while in treatment, not what happens after. So what does that mean?? (Honest question. I really don’t know.)
First of all, let me point out that without treatment, I don’t really know where I’d be today. Or if I’d be today. And let me also point out that one of the long term side affects I could find listed was infertility.
I present to you the evidence of my post chemo fertility:
But the fact remains that there could be mysterious health issues in the future for me. But without guidance on what to look for, how do long term cancer survivors like myself prepare to take care of ourselves? And how do we find doctors who don’t freak the hell out when we give them our medical history?
I believe that those who were already adults when diagnosed and treated (but are still long term survivors) may have fewer challenges in this because they may have already been established in their communities and with their doctors. But those – like me – who were adolescents and younger adults when diagnosed have likely moved away from where they were treated and no longer have the same doctors. My treatment for dysgerminoma was so long ago that the three page medical summary I was given from Arkansas Children’s Hospital was actually typed. Like on a typewriter. And I have moved eight times since then. (That’s just counting states, not residences.)
One thing I’ve found that may end up being a good resource for me is a site called Stupid Cancer. It’s a foundation for young adults with cancer. But you know what? I’m NOT a young adult any more. So I’m not exactly sure where that leaves me.
So for now… I’ll just try to keep myself healthy, I guess. Which means I probably should not have eaten that Reese’s Peanut Butter cup my husband bought me last night for breakfast this morning… Oops.