Survivorship

The Adolescent & Young Adult Cancer Journey

CONGRATULATIONS! Now you don’t need to focus so much on cancer. You can focus on YOU!

This is an exciting time but it can also be very stressful. Let’s admit it: Nothing was normal about being diagnosed with cancer as an adolescent or young adult and nothing is normal about being an adolescent or young adult survivor.

And here’s a little secret: This is when your care matters the most because unlike older and young older patients, you are going to face some long-term side effects that only you will notice. Most of them don’t quite fall in the oncology bucket anymore. Things like infertility or back pain. Maybe a tooth ache or a weird mole that seemed to appear out of nowhere. Some can be side effects of treatment, other just (dare I say) getting older… raise your hand if you need reading glasses before 40 ugh!

Your body — mentally, physically, emotionally — is figuring out its new normal. Here’s a few questions to ask you oncology team to ensure you stay a cancer survivor for a very, very, very long time.

What’s my survivorship plan? What regular tests do I need to do to monitor my overall health?

Here’s the truth. You have two options. Completely forget that you ever have cancer and never go to the doctor again or embrace this sucky thing that happened to you and take control of you long-term health. We obviously think you should do that latter.

What long-tern effects are you monitoring? Can you direct me to any research about when they may present and courses of action to reduce or eliminate long-term effects?

Many of the issues adolescent and young adult cancer survivors face don’t appear until 10–20 years after you treatment. That’s one of the big reasons for why Critical Mass: The Young Adult Alliance got together. We want to make sure that you aren’t just treated and sent back into the world with no expectations. You and your oncology team need to have an open and honest dialogue about what the next 5, 10, 25, 50 years will looks like because they can be awesome or they can suck. Your call.

How will you monitor and address any pain? Are there complimentary medicines I can take advantage of such as acupuncture?

Pain isn’t something that just happens when you in treatment. It can also also take some time for parts of your body to say: Damn, that was hard and I’m gonna take a little break from working. This could be anything from migraines to stomach cramps; neither of which are very fun. Pain management doesn’t mean you need to take a pill. Maybe you need to establish a workout routine or do a little yoga. But sometimes, you are going to need that pill and that’s why you need to speak to your oncology team about pain management.

How do you/I distinguish between a treatment side-effect and something new?What do I need to communication with you during this stage?

So you know that annoying (but very effective obviously because I’m referencing it) message at airports and in subways: If you see something, say something. Welcome to survivorship land: If something seems new from migraines to weight gain, tell your oncology team. Worst they can do is refer you to a specialist. (Don’t worry, they won’t bring out dogs or robots to inspect you, although that would kinda be awesome!)

What is the timeline from now to being considered “cured”?

Ahhhhh. The C word. Yup, I’m calling it that. Every cancer has a different definition of “cured” but you will likely hear “no evidence of disease” for a very long time. Take heart though. Your oncology team might not use “cure” for a reason. Ask them why. It will better inform your life as a survivor.

Is there anything I should avoid? (i.e. certain foods, alcohol, pregnancy, lifting heaving objects, sexual activity)

The short answer is yes but you will be surprised how short the list really is. Sometimes you oncology team may recommend you not get pregnant for two years after treatment to ensure there is no relapse. Others may have you on a maintenance medication that interacts with certain food like grapefruit (yes, seriously.) While the list might be short, there is going to be a list. Might as well get it down now before that grapefruit ends up sending back to them later.

Are their clinical trials or organizations I can participate in to help others with a similar diagnosis?

Yes! And you a so awesome to ask. You don’t just have to fundraise for a cause. You can also participate in trails after treatment that help inform long-term care plans. Ask your doctor to check in with any researchers in your area who are recruiting adolescents and young adults impacted by cancer. You might be able to participate in something as simple as an interview or donating your tumor samples to a research institution looking to understand the unique biology of adolescent and young adult cancers.

Next steps…

After you check in with your oncology team, you may find it helpful to connect with Mission Control which has age-appropriate resources just for adolescents and young adults so that you can take back control of your cancer care and survivorship.