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A Note from an AYA

“Just wait and see if it goes away.” I had gone to the doctor for a sinus infection, and in the process casually asked about a small lump I found in my breast. My doctor wasn’t concerned. I was too young. I was healthy (outside of that sinus infection), and even with a family history of breast cancer, she still wrote it off as being dense tissue and told me to wait and see if it went away.  

Unfortunately, my story is not unique. Because of assumptions similar to the ones I faced, AYAs are more likely to be diagnosed at a late stage because of delays in diagnosis due to the rarity of cancer in this age group, higher uninsured rates, and higher prevalence of aggressive disease. As an AYA, you immediately have to learn to advocate for yourself and keep pushing until you get what you need. 

At this point you may be asking, “What’s an AYA?” AYA stands for Adolescents and Young Adults – those aged 15-39 years who are impacted by cancer. There are many unique aspects of care to consider in this population that may influence outcomes both during and after cancer treatment. 

“In 2020, there were approximately 89,500 new cancer cases and 9,270 cancer deaths in adolescents and young adults (AYAs) in the United States. These patients are often grouped with younger or older patient populations, which masks important differences in cancer distribution, tumor biology, and survivorship. AYA patients also have an elevated risk of long-term and late effects, including infertility, sexual dysfunction, heart problems, and future cancers.”— Special Section: Cancer in Adolescents and Young Adults

Fast forward a couple of weeks and I was seeing my gynecologist for an annual visit, and again, casually mentioned the lump. This time, she immediately wanted me to get an ultrasound. 

When my doctor asked me to come in for my biopsy results, I knew the news wasn’t going to be good. I think that the first thoughts that went through my head when she told me it was cancer are a good first look at what it means to be an AYA. The first thing that came out of my mouth in the exam room was, “I don’t want to die,” closely followed by, “Work is going to be so mad,” and then, “I cannot afford (financially) to have cancer.” 

It was the week of my 29th birthday.  I was newly single and living four hours from my nearest family member.  I was suddenly forced to make decisions that I was in no way prepared to make. Who should my doctors be? Should I get 43 second opinions or trust the first one? How do I tell my job? Should I do genetic testing and how will that impact my family? INSURANCE? Do I want to do fertility treatments for egg preservation? Can I even afford to do that financially if I want to? INSURANCE?! 

One of the biggest hurdles for me was admitting that I was going to need help and support. I had been taking care of myself for so long that I couldn’t handle the idea of needing to rely on another human. I did a masterful job of pushing away my family (sorry, mom!) and friends, and “I’m fine” became my most used phrase when someone would ask me how I was doing. The reality was, however, that I did and still do need help. Navigating life pre, during, and post treatment have all thrown varying challenges my way, but what I do know is that I couldn’t and can’t do it alone.

“During the critical developmental transition from childhood to adulthood, older adolescents and young adults, in particular, have typical concerns with establishing identity, developing a positive body image and sexual identity, separating from parents, increasing involvement with peers and dating, and beginning to make decisions about careers or employment, higher education, and/or family.”— Special Section: Cancer in Adolescents and Young Adults

At my first appointment, my surgeon told me to find someone around my age who had a similar experience or treatment path to the one on which I was about to embark. Studies have found that almost one-third of AYA patients with cancer experience increased depressive symptoms. AYA patients express a need for improved mental health and support group services.  

In searching for someone with a similar diagnosis and treatment plan, I found an entire community. I found a friend who I could text every day with every little worry, complaint, or dark joke, who would understand. AND – not only did I find one incredible friend – I also gained many.  We aren’t a formal or professionally-led group (although we probably should be), but we are, for all intents and purposes, a support group. These friends have seen me at my darkest moments. As much as I love my friends and family who have not had cancer, no one understands what I went through better than my friends who did have cancer. I cannot iterate enough the importance of having a community to turn to, and I do not know where I would be now if I had not found these friends.

And that’s where Gilda’s Club – and I can now say, “we” — come in. We get it, and if we personally don’t, we know someone who does. The AYAs we support are those who have a cancer diagnosis themselves, are grieving the loss of a loved one, or who have a family member or friend with a cancer diagnosis.  At GCMTN we have consistently offered a group for young adults with cancer because we recognize the need of AYAs to be able to connect with other AYAs who get it, whether that is in the form of a formal support group, a social event, educational workshops about topics specifically relevant to young adults (sexual health, insurance, navigating the healthcare system, and relationships with family and peers), or connecting young adults individually if they’re looking for someone with a similar diagnosis or experience. 

I was told about Gilda’s Club when I was first diagnosed. I was given a monthly calendar of programs and events and pushed it aside with the 400 other pamphlets of information I was receiving at the time.  I love my group of ‘Cancerinos’ (thanks, My Favorite Murder!) more than I can possibly say, but I also wish I would have taken advantage of the Gilda’s Club community and resources. Being separated from my own family during this time, I desperately needed that and didn’t know that it was right here, in Nashville, for FREE.  Did I mention FREE? 

AYA cancer survivors have more financial hardship and out-of-pocket medical costs than the general population. As a result, young adult survivors have higher rates of bankruptcy and more frequently forgo needed medical care due to cost compared to older survivors. Financial distress among AYA survivors is often compounded by nonmedical costs, such as student loans and raising children.— Special Section: Cancer in Adolescents and Young Adults

There are countless things I have been surprised by since my diagnosis. Many of those stemming from the fact that I am an AYA.  I was not prepared for the long-term side effects of treatment.  Years out from chemo and I still have serious ‘chemo brain’ at times. I wasn’t prepared to make decisions regarding a hypothetical family that I might have someday. I didn’t know the extent that I would be grieving. Grieving my old self, my future self, seeing all of my friends getting married and having babies or going on vacations while I was hooked up to a chemo bag.  

“AYA’s report worse overall psychosocial functioning than other cancer survivors as well as their cancer-free peers which may reflect difficulty in coping with treatment and recovery during early life transitions. Problems with fertility, sexual dysfunction, and body image, particularly among women, are also common in AYA cancer survivors.”— Special Section: Cancer in Adolescents and Young Adults

No one tells you that survivorship is going to be harder than you ever imagined. Your loved ones are so happy you’re ‘better’ that they quickly move on, but they don’t know that it stays with you.  The way your constant fear of recurrence drains you. The way you constantly are feeling every little pain and headache and wondering if your cancer is back. I do consider myself lucky to be able to have this worry, but it has drastically impacted my day-to-day, my relationships, and every aspect of my life. I was not prepared for the number of people in my life that I would lose because of cancer, including friends who could not handle the diagnosis and now, the pain of losing friends to cancer because we don’t all get good news. 

For the Big Payback 2022 we will be shining a spotlight on AYAs, drawing attention to how this unique group of people is different from others living with cancer.  We’re giving voice to AYA’s impacted by cancer, their caregivers, those diagnosed at an early age, and those navigating AYA survivorship. 

Over the years these unique issues stay the same, but we know that the way we meet the needs of AYAs needs to shift with changing times. Not only because of the recent changes the pandemic has forced onto us, but our hope is also to offer even more to this population and their unique experience with cancer.  One thing will not change, with your support during the Big Payback, Gilda’s Club will be here for Adolescents and Young Adults impacted by cancer. 

Learn more about the ways we are supporting AYAs here: http://zh7.679.myftpupload.com/membership/aya/