The Adolescent & Young Adult Cancer Journey
Welcome to the club you don’t want to be in. We get it, we don’t want to be here either. No adolescent or young adult should have to battle for their life during their “invincible” years. Trust me, we would much rather be arguing with you about your political views or rolling our eyes when you tell us sky diving is awesome. (Seriously, that’s crazy.) Go ahead grab the tissues or yell really loud. We know it sucks to have to put your life on hold because of cancer but once you get back, there’s a few things we can help you with…
Critical Mass: The Young Adult Cancer Alliance is a coalition of adolescent and young adult patients, survivors, providers, researchers, advocates, and so many more. We are united for one purpose: to help YOU survive and thrive after a cancer diagnosis. (And make sure you don’t have to choose between Citizen Kane and Beauty and the Beast — the cartoon version — on VHS — that is sort of like a DVD — as your choice of entertainment during chemo.)
We’ve created a list of questions specific to adolescents and young adults who are undergoing treatment after a cancer diagnosis. As treatments progress (and chemo brain sets in) it may be hard to remember the questions you asked or even the answers they spent time going over with you. Write them down and share them with your caregivers. This document can become a good reference tool for the future.
Which drugs and therapies will be used today? What are the most common short and long-term effects of this treatment protocol?
Oh side effects. Everything’s got them. The American Cancer Society actually has a great resource that breaks down all the possible side effects of cancer treatment which you can access HERE. But it is important to know which drugs are being administered, what you can expect while you are in the clinic, and what may happen once you are back home. Some effects are normal, others can be life threatening. Your oncology team is there not only to administer treatments but help you navigate everything from hair loss to explosive diarrhea. (Oh yeah… get ready…)
Do you have resources available specific to adolescents and young adults like a patient navigator or age-appropriate setting?
The worst thing that can happen is you hear no, but typically there is going to be someone or something available to address your needs either in the clinic or virtually (see: Mission Control.) Some hospitals have even invested in lounges that are only available to adolescents and young adults equipped with Netflix and Xbox . (For those people who knew what a VHS was, these are the opposite.)
How can I best prepare for treatment? What should I do immediately after treatment? (i.e. rest, exercise, fast)
If you want to minimize side effects, always ask this question. Your treatment will impact different parts of your body and knowing what you can and cannot do could be the difference between staying at home or getting rushed to the emergency room.
Besides the treatment protocol, what other medicines and therapies will you use? (i.e antibiotics, transfusions)
Chemotherapy and radiation can do a number on your immune system. Your oncology team is going to do everything in their power to keep you as healthy as possible while you are undergoing cancer treatment. Sometimes your body will need a little extra help to fight off an infection or heal from a wound. There are a number of protocols your team will use besides just the standard “cancer drugs.” It is always good to know what they will use to mitigate the impact of certain treatments as well as any possible side effects. Sometimes you could have an intolerance to a medication in pill form that can easily be administered by IV. It is always good to know how you will react to certain “cancer drugs” as well as other medicines and therapies they plan to use in any given protocol.
Are there complimentary medicines I can take advantage of? (i.e. acupuncture) Anything I should avoid? (i.e. certain foods, alcohol, lifting heavy objects, sexual activity)
Here’s the part where we tell you: Not everything you read on the internet is true. Yes, some complimentary medicines have shown to greatly improve cancer care BUT sticking a needle in your body while you have a compromised immune system means that it needs to be performed by a person who understands how to perform the procedure on a cancer patient. That guy down the corner who does it in his garage is not going to improve anything. You can enjoy your life while undergoing cancer therapy but you need to be smart about it. Things you eat (even baked…) can impact your care and oh, please practice safe sex. Yes, you can still get or get someone pregnant while undergoing cancer treatments. Chemo doesn’t replace condoms. Be honest with your oncology team. They have literally heard it all and their goal is to make sure you are healthy both physically and mentally.
How will I/you know if something is a common side effect or a warning sign for a larger problem? Who should I call if I need to discuss symptoms while I’m home or away from the clinic?
So you’ve probably never undergone cancer treatment before and even if you have you body reacts differently at different times in your physical development. Think about the 20 times you got the flu shot and nothing, then one time you got the flu shot and OMG you were DYING…. That’s a kind of loose example (forgive me scientists) but you get it. No one wants to live in a bubble or call their doctor every time they get a pimple. (Can you believe it… acne can still happen even while on chemo… can’t catch a break…) Talk through the side effects with your team as well as the best person to call and when. There is usually a specific phone number at every hospital or clinic designated for cancer patients that fast tracks them to a real live person.
How will you work with my caregivers and support team? Who makes decisions if I am no coherent or able to discuss my wishes with you?
Let’s face it. What 19 year old has a will and/or advanced care directive? That’s totally for old people. Well, old and sick people. Sorry to tell you but you are sick and sometimes your oncology team will need to make decisions with your caregivers on your behalf. What’s unique about adolescents and young adults is that we have a wide variety of caregivers — parents, partners, spouses, best friends — compared to pediatric patients whose care is determined by their parents and older adults who usually have a spouse or older child who is legally able to make health care decisions. It is best to have these conversations early with everyone and work with a member of the hospital or clinic who specializes in legal services to draft up your wishes now so that your entire care team is on the same page.
After you check in with your oncology team, you may find it helpful to review our next guide — Surveillance or End-of-Life Care — as well as Mission Control which has age-appropriate resources just for adolescents and young adults so that you can take back control of your cancer care.