Newly Diagnosed
The Adolescent & Young Adult Cancer Journey
Yes, you are too young for cancer. It isn’t that you just aren’t mentally and emotionally prepared. Our cancer care and delivery system is designed to treat children and older adults. You are entering a world that isn’t designed to help you figure out how to pay for student loans and chemotherapy… at the same time. The oncology staff isn’t trained to help you speak to your young children about why mommy or daddy can’t hold them right now.
But you aren’t alone. You are one of 70,000 adolescents and young adults between 15 and 39 who are diagnosed with cancer each year in the United States and… Critical Mass: The Young Adult Cancer Alliance is all about helping you survive and thrive after a cancer diagnosis. Yes, we are a community-powered advocacy organization made up of doctors, nurses, researchers, industry leaders, and many more all dedicated to ensuring that adolescents and young adults get the right care and treatment.
Here’s where to start: Ask questions. Many of the providers who treat us don’t handle adolescent and young adult cancer care every day. We are about 7% of all cancer diagnoses and that makes us a minority. But it does not make you invisible. We’ve learned from many patients and survivors. We’ve even created our own society and professional journal to better educate providers about the unique needs of this age group. It is all about collaboration and working together to ensure you get the best care. You are a team and you get to decide who is the quarterback and who is the coach.
Here are a few questions that will help get you started:
(BTW you don’t need to write them down. We put them all into a simple document you can print and take to your next appointment.)
What is the best course of treatment at my age? Am I eligible for any clinical trials or complimentary medicines?
Unfortunately, adolescents & young adults have not benefited from the same care and treatment advances as young children and older adults with the same exact diagnosis. Only 5% saw a pediatric specialist even though research suggests survival improves using a pediatric protocol depending on diagnosis. This age group is also the least likely to be enrolled in clinical trials. Ask your oncology team to research care and treatment plans for both your diagnosis and your age.
When do I need to begin treatment? Is there time to get a second opinion? Do you recommend genetic testing?
Every cancer is different. Some move quickly while others are slow growing. Some feed off hormones and other glucose. Some may be because of a specific mutation and a simple test can determine the best course of treatment. Bottomline, you need a cancer treatment plan that will work.
What are the side effects of this treatment plan? When can they start? How will you manage them?
We can spend all day going through every possible side effect. Unfortunately there no way around them. But there are ways you and your team can manage how side effects will impact your life. There are new drugs that can prevent nausea and vomiting. Did you know fatigue is the most common side effect? And that there are actually exercise programs that can help combat feeling exhausted after treatment?
Will treatment impact my fertility? If so, is there a specialist you recommend I work with?
Here’s what you need to know: Sex and cancer don’t mix. Forget the fact that you feel tired and gross, treatments can make any sexual activity physically uncomfortable and also prevent your reproductive system from functioning properly. I know what you are thinking… I’m nowhere near thinking about having kids! Problem is by the time you do, it might actually be too late. Infertility is a nasty possible side effect of chemotherapy and radiation. You must talk to your care team about any and all options before you begin treatment and there are some great specialists who work specifically in the field of “oncofertility.” (So yeah, maybe there’s one place sex and cancer get together.)
How often will I go through treatment? Do I need to take time off work or school? Can I set my own schedule?
Guess what, you aren’t the normal cancer patient who is close to or in retirement. I bet you are in school or just kicking off an awesome career. One of the reasons Critical Mass came together is because we want to make sure you not only survive but also thrive after a cancer diagnosis. Many clinics will let you schedule appointments on Fridays which gives you the entire weekend to recover. You might even be able to telecommute. Find out what your oncology team recommends and then check in with your human resources or student services representative to learn more about your legal rights to go to work or school while undergoing treatment.
Where will I likely have my treatments? Is there an adolescent and young adult cancer program or patient navigator in staff?
Adolescents and young adults can either be considered “too young” or “too old” for what is standard care. They have no medical “home” and are frequently caught in a gap between pediatric and adult programs. Hospital admission policies are inconsistent; some hospitals prohibit pediatric admissions for patients over the age of 18 while others have set their age limit at 21. Still others may determine the setting based on whether or not the patient presents with a “childhood” or “adult” cancer. Always ask to speak with someone who manages adolescent and young adult cancer care. They can point you in the right direction.
How can I best physically prepare for treatment (i.e. eating, drinking, exercise.)
I’m sorry to tell you but that marathon you’ve got coming up is probably not going to happen right now. Oh and I know it is pretty commonplace to celebrate your birthday with a whole lot of alcohol. If you want to kick cancer, your body needs to be fit and healthy (I know, you have cancer so it isn’t 100% healthy but work with us here…) Check with your team about anything outside of your care plan to make sure they give the okay. Sometimes the best thing you can do is eat Little Debbie’s snack cakes all day. (That is not a joke.)
Next steps…
After you check in with your oncology team, you may find it helpful to review our next guide — In Treatment — 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.
