Resources for young adult cancer survivors
There is no good time to be diagnosed with cancer. Every stage of life is a big deal full of learning opportunities and so many possibilities. Being diagnosed with bone cancer at 21 was especially startling to me. Young adults are often ‘lost’ in the between stage of teens and adults. When I was diagnosed 25 years ago, resources for young adult cancer survivors were scarce. There’s still room for improvement, but thankfully awareness has increased resources available for this audience.
A new path after cancer
When I first heard ‘you have cancer,’ I was three months shy of graduating from college, on the cusp of adulthood. So many plans spanned before me, from career, relationship, children, horses, travel and more. My diagnosis set a new course for my life (life often has a way of doing that). It also made me feel a bit isolated from people, especially my college friends.
While my friends were thinking of careers, marriage, children and other adventures, I was focused on not throwing up, watching my hair fall out (and accepting a bald head for over a year), learning to walk after surgery, and adjusting to life as a cancer survivor. The side effects of that treatment sometimes still keep me on the sidelines when I don’t want to be. It at times made dating/relationships and even career ambitions challenging.
As I think of my life journey, I often see a path that winds in all directions, with some steep hill climbs and sharp drops, and some flat road in between. Some of the road is smooth, other parts are full of annoying potholes. But there is always a ray of sunshine. I am alive. [Read my ‘Life tips from a young adult cancer survivor’ blog post]
Cancer’s great divide
When I was diagnosed at 21, my oncology surgeon thought I should be treated through pediatric oncology. Even though I was the oldest patient at every hospital stay and doctor visit, I am forever grateful for where I was treated. The pediatric patients always made me laugh and my care team had a special kindness for me and my family. I had stark reminders of being an adult, though, when I had to legally be the one to make my medical decisions and sign paperwork (thankfully, my parents were beside me every day and I was able to stay on their insurance through my treatment).
Once I finished treatment, reality kicked in on the next path in my journey. I had a college degree in journalism. But no idea what I wanted in life anymore. I felt different and didn’t know what to do with this ‘new me.’ Cancer made me grow up really, freakin’ fast. I felt alone. Thankfully, I slowly started learning of programs, services and other resources for young adult cancer survivors. So many more are available now. The following list is not exhaustive but I wanted to share some to help others through this journey.
Resources for young adult cancer survivors
More than 150,000 people of reproductive age are diagnosed with cancer each year. Many cancers and treatments cause infertility issues in women and men. And many survivors face side effects, additional surgeries and more treatment after the initial treatment ends. 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 promoting 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.
Young adult survivors’ conference
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.
In this blog post, I share several organizations providing financial assistance to cancer survivors.
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. Having support is so important. 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).
Cold cap therapy (scalp cooling therapy)
I’m grateful that I could cold cap during breast cancer treatment a few years ago to save most of my hair. This wasn’t available during bone cancer treatment. While more insurance payers are finally starting to cover costs for this amazing resource, many patients still pay high out of pocket costs. I share a lot of information on cold capping in previous blog posts (search cold capping and/or cold cap therapy in the search bar at the top). [Read ‘4 cold capping facts to save your hair during chemo’]
Supporting cancer survivors
These are just a few of the resources for young adult cancer survivors. Please feel free to share others in the comments.