The Adolescent & Young Adult Cancer Journey
Don’t you just love it? No evidence of disease or NED. (Also the name of this cool rock band started gynecologic oncology surgeons.) The cancer is gone… but you are now under “surveillance”. It’s okay if Men in Black comes to mind. That’s totally what it sounds like.
But as awesome as it would be to have Tommy Lee Jones and Will Smith beating back cancer, your oncology team is in the same place as you are: wait and see. It is more like that gross stake out where no one in the car has showered in at least four days and the dash is covered in take-out wrappers.
Just because there isn’t any evidence of the disease, doesn’t mean your care ends. In fact, this might be the most important time in your cancer care. You are no longer a full-time cancer patient and your oncology team will depend on what you tell them to determine any and all next steps.
Critical Mass: The Young Adult Cancer Alliance has worked up a list of questions that you can ask your oncology team before you are sent back into your “normal” routine. (But let’s be honest, what is normal after a cancer diagnosis?)
What are the next steps now that my treatment is over? When can I go back to work or school?
Be very clear with your oncology team about your expectations now that cancer treatment isn’t your full-time job. Also be a good listener because your oncology team has one job right now: prevent relapse. What they tell you might feel restrictive at first but they are outlining what in their experience are the necessary steps to ensure your cancer never comes back.
What is the likelihood of relapse, secondary cancers, and a new chronic disease like heart disease? When will they present? How are you monitoring?
Relapse. Secondary cancers. Chronic disease. These are all part of the unique adolescent and young adult cancer experience. Some side effects of treatment will not appear for 10–20 years. Like everything, catching them early is the key to managing or treating these new symptoms.
What symptoms and side effects are more likely to present at this stage? (i.e. PTSD, anemia) Do I speak with you or someone else about these needs?
Symptoms and side-effects — short and long-term — are different for everyone. They can be connected to your diagnosis as well as an individual drug used during treatment. But one thing we know for sure: see a therapist. It is pretty easy to get a list of drug side effects but most adolescents and young adults are never referred to a specialist who is focused on your mental and emotional health. Fighting cancer isn’t just physical. Now is the time to take stock and ensure that your entire self is healing from a very difficult and challenging time in your life.
Who is managing my follow-up care? Can I be monitored closer to my school or work and have the tests sent to you? If so, who can you refer me to?
Don’t think that you have to be chained to your hospital or clinic forever. You may want to see your oncology team until the end of time and that is totally cool but as an adolescent or young adult, you may also want to get back to living which means going back to school or work. Now that we are almost two decades into the 21st century there are these things called email and the internet. Your doctor can totally get test results sent to them electronically. However, don’t take that as us telling you to leave behind your oncology team. You better stay in touch. They know more about your treatment and what to expect than anyone else and you both may decide that it is better to continue your follow-up care directly.
Are there any specialists or preventative tests needed to monitor long-term effects? (i.e. dentists, dermatologists)
So as badass as your oncologist is, chances are they probably don’t know much about that toothache or in-grown toenail. Welcome to the world of post-cancer follow-up care where you can literally find a doctor for every single organ in your body (and then some.) The best place to start is by asking your oncology team for a list of physicians they recommend you begin to establish a relationship with close to home, work, or school. This will ease the transition later when you are no longer under the care of a oncologist full-time.
Is there anything I should avoid? (i.e. certain foods, alcohol, pregnancy, lifting heavy objects, sexual activity)
Of course there are things you should avoid or enjoy in moderation. You will be surprised to learn that it is pretty much what everyone has told you since the beginning of time: don’t do drugs (well except the ones prescribed to you), you can drink but in moderation (sorry under 21ers, we really wish cancer could give you a pass on the legal drinking limit but that’s a big, fat no) and exercise is great (although you may have a different definition because your doctor is all about those lovely walks and yoga, not so much into you running a marathon next month.)
What is the balance between being careful and living in a bubble? Pain that is normal and pain that needs to be reported to my oncology team?
We know that every time you used to sneeze it was an emergency (we’re looking at you parents) but surveillance is not just about monitoring for relapse and side effects. It is also about getting back to living your life. There are boundaries and you will need to discuss what those are with your physicians. It might mean you wait until your platelets reach a certain number before you start rock climbing again. You may even need to wear a mask in crowed areas like airports or at concerts. We’re sorry to say that isn’t the coolest but it is about ensuring your are well on your way to recovery. And seriously, who needs to be rushed to the emergency room. At this point, you’ve already done that a few times too many.
After you check in with your oncology team, you may find it helpful to review our next guide — Survivorship — 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.