Navigating life as a young adult cancer survivor

Imagine being a young adult navigating major milestones of life – attending school, starting a career, dating/relationships, buying a home, starting a family and more. Now imagine navigating all that with a cancer diagnosis. Over 85,000 young adults face these circumstances in the United States each year. I was one of them. During Adolescent & Young Adult Cancer Awareness Week, I want to share tips for navigating life as a young adult cancer survivor.

Facing cancer in life as a young adult cancer survivor

Having support can help navigate life as a young adult cancer survivor

Life in general can be overwhelming. Add a cancer diagnosis, treatment, side effects and more to that mix and life just got way more complicated. While there is no good time to be diagnosed with cancer, being a young adult can be especially challenging.

The medical community refers ‘young adults’ as anyone from age 15 through to 39. This is a significant range including multiple stages of human development. Young adult cancer survivors face unique challenges with side effects, coping with their diagnosis and aftermath, and even the ability to receive treatment (uninsured rates are higher in this age range). Young adults may also experience delayed diagnoses because clinical providers too often continue to say ‘you’re too young for cancer’ and look for some other explanation for symptoms. But as we know, cancer doesn’t care how old you are.

Healthcare is still too slow to catch up with the gap in care for this age group. There is an age gap in treating young adults and young adults are rarely included in clinical trials and research. Some patients will be treated in pediatrics and some in adult practices. You are either the oldest or youngest patient, which can be a lonely place. More pediatric oncology clinics are finally starting to treat patients through age 26 (coinciding with when they ‘age out’ of being on a parent’s health insurance, per the Affordable Care Act rules).

My journey navigating life as a young adult cancer survivor

Imagine being 21, three months from college graduation, and walking into a clinic with mild knee pain. And walking out learning that you have a tumor in your knee. That was me 26 years ago when I was diagnosed with osteosarcoma. I was thankfully treated in pediatric oncology but at that time, it wasn’t a common occurrence (I write thankfully because my care team was the BEST).

Being diagnosed with cancer as a young adult impacted every part of my adult life since then, from career to relationships to infertility and more. It’s been at times a very challenging and lonely road.

Heather Hall

Cancer’s impact on all areas of my life has brought many challenges in my adult life. Even if I didn’t want to think about cancer every day (I do not), I still get daily reminders. From the morning ache in my left leg with the titanium femur/knee to not being able to have children to managing other side effects to ongoing doctor appointments and more.

There are thankfully many more resources to help navigate life as a young adult cancer survivor now than when I was first diagnosed. I’m proud that I’ve worked with many organizations to help develop these resources and mentored numerous young adults in navigating the wild world of cancer survivorship.

Resources for young adult cancer survivors

Fertility assistance:

Many cancers, treatments, surgeries and side effects cause infertility issues in women and men. This is what I faced, leading to fertility issues [Read ‘Facing infertility after cancer‘ for my story]. Unfortunately for me, most of the current fertility preservation options weren’t available when I went through my first cancer, thus my push to raise awareness of these now for others.

Two organizations that I’m passionate about due to their commitment to providing options for a family are: Livestrong Fertility provides reproductive information, access to discounted fertility preservation services, and free medications to survivors whose cancer and its treatment could risk to their fertility. The SAMFund focuses on supporting young adult cancer survivors on a variety of areas, including fertility assistance. Support includes grants to help with fertility treatment (and other stuff), assistance with medical bills and more.

Mental and emotional support

A cancer diagnosis rocks your world. Mental and emotional support are as critical to cancer care as physical/medical treatment. Hearing a diagnosis, going through treatment, finishing treatment, adjusting to life after treatment, side effects….the list keeps going of what you may face. Many cancer centers now offer support groups, as do local nonprofits. Two that helped me are: Cancer Support Community has hundreds of locations worldwide and online support; Imerman Angels provides one on one support connecting people at various stages of their cancer treatment with someone who has completed treatment (ideally same cancer, age range and treatment). The Ulman Foundation also provides wonderful support for young adults.

Financial resources

In this blog post, I share several organizations providing financial assistance to cancer survivors.

Young adult conferences and retreats

I attended a young adult survivors conference shortly after bone cancer treatment ended. In the mountains of Montana, I met some amazing fellow survivors who understood me so well. We bonded, laughed, cried, hiked, danced, created art and made lifelong memories and friendships. My soul healed, my heart soared and my body felt refreshed. Camp Mak-A-Dream welcomes those in treatment too (there is a medical center and volunteer clinical staff on site).

Stupid Cancer provides a LOT of resources for young adult cancer survivors (their mission is focused on this audience). CancerCon is a conference offering education, opportunities to meet other young adult survivors and more. There are also fun outdoor retreats, such as First Descents (many of my friends attended this one).

Navigating life together

If you’re navigating life as a young adult cancer survivor, you’re not alone. Please don’t hesitate to get support. And if you know a young adult facing these challenges, please step up and offer your support. We’re always better together.

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