First, it was incredibly encouraging to see the more than 400 attendees come together and share their work, and to hear all of the ways in which they are trying to improve and extend the lives of young people affected by cancer.
Second, I learned that there is an International Charter of Rights for Young People with Cancer. Considering I’ve been reviewing resources and research around AYA cancer and survivorship for years, and now work in psycho-oncology research, I was shocked that I hadn’t seen or heard of this Charter before. More importantly, I figured if my over-involved self hadn’t heard of it, there was no way newly diagnosed AYAs would be able to find out about it.
I’d like to change that. While the Charter as it exists does have limitations, like it doesn’t cover pretty much anything about AYA cancer survivorship, which is a huge problem, I think it does have a lot of valuable information for someone who’s just been diagnosed. I feel like if 13 year old me had heard of this Charter when my relapse happened, some things could have gone much differently, and much better.
So I’ll share it now. It’s close to 10 years old, so as I said, it isn’t perfect, but it can be helpful. Take home message is: know you have rights and use them. I would have taken this whole article in with me to my first appointments and kept it with me during those first few months of treatment when I was inpatient all the time, so I had a better understanding of what I could and should ask for.
In one of the first few weeks inpatient, I told doctors I was feeling dizzy even though my latest red blood cell count seemed high enough that I wouldn’t need a transfusion, so they told me I didn’t need to get a transfusion. I subsequently passed out in the bathroom and could have cracked my head open had my mom not caught me before I hit the floor. After that fainting episode, the rapid response team informed my oncology team that, as a tall person (much larger than the tiny children they typically dealt with), the red blood cell count was actually not quite high enough for someone of my height, and that was likely why I ended up passing out. I could have avoided traumatizing my mother and having to have her call the rapid response team, had someone taken me and my report of dizziness seriously, and had I known I could have demanded to be taken seriously.
Had I known I should have been empowered by my medical team to make decisions after receiving a full and detailed explanation of options and long-term effects, someone may have been able to schedule my consult with the onco-fertility specialist at a time when I wasn’t drugged out on Benedryl and overcome by some of the worst chemo-induced nausea of my treatment. Fortunately my mother was able to make the decisions on my behalf, and so far I think I'll be ok fertility-wise, but I will always hold it against my healthcare team that they didn’t take it more seriously to have this consult and conversation weeks earlier, at a time when I could have coherently been part of it.
I could go on and on. AYA cancer and survivorship care has come a long way, but it still has a long way to go. Medical training is only just beginning to combine training of adolescent and young adult health with specialist training like oncology, so doctors can learn how to communicate with our specific age group before we are affected by any lack of such communication training in actual care interactions. Until more progress is made, know your rights and use them.
The Congress ended with a panel of 5 AYA survivors from 5 different countries, who spoke about the importance of this Charter, but also the need to improve it. I can't thank these AYAs enough for sharing their stories on behalf of all of us patients and survivors. CanTeen, the Teenage Cancer Trust, and Teen Cancer America, have agreed to revisit the Charter as part of their new Global Accord efforts (basically they've teamed up to address important AYA cancer issues globally) and they plan to revise it to include more rights, especially those related to survivorship. Stay tuned and watch this space, because you may see a new version of this document coming out in the next couple of years. I'll be sure to share it as soon as I hear about it.