Survivorship & Advocacy

Now that cancer has entered your life, things will definitely be different. Survivorship can mean a lot of different things to different people, but for many AYAs survivorship starts at diagnosis. At Stupid Cancer, when we talk about survivorship, we mean everything that comes after cancer: coping with treatment, navigating your “old” life with lots of new challenges, redefining your identity after going through profound changes, and advocating for yourself in others over the rest of your life.

But it’s deeply personal: what you make of your survivorship is up to you.

Survivorship Care Planning & Long-term Survivorship

Unfortunately, life-saving cancer treatment can create other health risks later in life. It’s important that at the end of your treatment, you ask for a documented Survivorship Care Plan that lists your full treatment history. Share this document with your primary care physician and future medical providers so they can be informed about your risks of recurrence, secondary cancers, or late-term effects. Talk with your health care team to get accurate information about the risk of recurrence for your type and stage of cancer or any secondary cancers that may be associated with your type of treatment.

Moving from active treatment to survivorship can be a difficult transition. Many find it strange to go from the regimented experience of treatment to being left “on your own.” And if you’re on ongoing or maintenance therapies, the transition to “survivorship” isn’t clear cut. No matter your cancer experience, prioritizing your mental health in survivorship is key.

Fears of recurrence are normal and it’s common to experience “scanxiety” (anxiety and fear that occurs before routine scans) even many years after treatment ends. You cannot directly control recurrence, but you can control how fear of recurrence affects your life. Talking about your fears can lessen their impact. Knowing your risks and taking charge of your medical records can help provide a sense of control. A strong social support system of other survivors is really helpful in normalizing your experience. That’s where Stupid Cancer comes in! This community is here to support you for the full cancer journey, which includes readjusting to “regular life” and moving forward into long-term survivorship.

Questions for your provider...

Can I get a copy of my Survivorship Care Plan?

What are my specific long-term risks, and what symptoms should I look out for?

What long-term resources are available to me through the cancer center?

More on Survivorship...

Survivorship Care Planning

Advocacy

Advocacy comes in many forms, all of which can be important as an adolescent or young adult patient and survivor. If you’ve ever had to ask for a second opinion or decided to switch to a new provider, you were advocating for yourself.

Unfortunately, many AYAs find that they need to hone their self-advocacy skills in order to receive the best care – and it doesn’t always come naturally. While it might feel daunting to speak up to medical professionals, you should have a voice in your care and be a part of all decision-making. The Stupid Cancer’s AYA Bill of Rights lays out the kind of experience all patients deserve – and can provide a baseline of what you should be advocating for. By educating yourself, going into appointments with a list of prepared questions, taking thorough notes, and not being afraid to follow up with more questions – you can be a more empowered patient.

Sharing your story with others is another powerful form of advocacy – whether that’s through creative expression, talking with people in your community, or getting involved in legislative advocacy to make sure our laws support AYA patients.

More on Advocacy...

Muddling Through the Medical System: The Importance of Patient Self Advocacy

Self Advocacy & Shared Decision Making for Metastatic Patients

Advocacy Matters

Additional Resources

Learn about the research

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