Cancer has taught me a lot. A lot about myself. A lot about subtypes. A lot about treatments and all the options. But most importantly, a lot about the importance of relationships, specifically with others like us who are going through the same things. Because every person, of every race, sexuality, stage, and age has a specific story to tell.
Luckily for me, I found SHARE, a group that has made building these relationships their priority for cancer patients and survivors. In fact, they value this so much they are letting me facilitate a monthly Zoom group for a much-underserved population of breast cancer patients, young adults.
A “young adult cancer patient” is anyone who is diagnosed with cancer between the ages of 18-40. The young adult patient is often grouped with adolescents and collectively the group is called AYAs, or Adolescents & Young Adults. I became an AYA in January of 2021 when, at the age of 32, I was diagnosed with stage 3, hormone positive, HER2 negative, inflammatory breast cancer.
Even though I was seeking care at two different treatment facilities in the 50th largest city in the nation, Omaha, Neb., there were no local peer groups meeting monthly to offer support for any breast cancer patients, regardless of age. This led me to do what most millennials do when faced with a problem and Google it. My Google search quickly led me to SHARE.
In March of 2021 (when I was just starting chemo), I joined SHARE’s Tuesday night support group for breast cancer patients. It was here where I received much needed support and camaraderie, throughout every stage of my active treatment, (including all throughout chemotherapy), surgery (which included a double mastectomy, oophorectomy, and lymphovenous bypass), and then all during radiation. I heard stories like mine and got tips about how to manage all the side effects.
While I felt a deep sense of belonging, there was also still a deep need. These women are all 10 to 30 years my senior and don’t share much of the same life challenges brought from being diagnosed so young. I’m unsure of how to save for retirement or a home, while also paying for treatment. I’ve lost my fertility and am unsure how to build my family, or if I even want to. I don’t know how to connect with my peers who are announcing babies or job promotions while I’m still stuck in cancer-land just hoping to announce clear scans and another year to live.
Again, I took to Google. This time hoping to find an AYA group for breast cancer patients. I found a few groups based out of the West coast, but I’ve always been an early riser and thus an early sleeper. It didn’t really fit my lifestyle to stay up until 8 or 9 PM to attend a group, when I was getting up at 4:30 AM for work. I needed something that met earlier like my friends on the East coast at SHARE.
Again, like most things millennials do, full of imposter syndrome and anxiety, I very nervously sent an email to the Tuesday night group facilitator and told her my idea. Let's start an AYA peer lead group for breast cancer patients that meets monthly. She worked the idea up the ladder, and the next thing I knew they were asking me to be a facilitator! Imposter no more, I am bringing my skills to the main stage of Zoom. I, along with two of my first AYA breasties (or “breast cancer friends”), will be hosting a monthly Zoom for any AYA breast cancer patients to join.
We come with a wide range of experiences, subtypes and careers in science. From myself being flat, without children or fertility preservation, and currently working as a nurse to Elena, who has had DIEP flap and is getting married soon, and Alex who’s recently married and rejoining the workforce now post treatment. I can guarantee we have somebody in the group who has either done it or knows someone who has. All three of us are very active in the AYA world and have attended multiple camps, conferences and groups. We’ve met a lot of people and seen a lot of things, all the while returning to each other and the relationships we built early on, back when we were cancer babies.
Our collective goal for the group is simple: to provide AYA breast cancer patients a safe place to meet up and talk about it all. Nothing is off limits except suggesting pseudo-science. Chat about the hot therapist, dry lady bits, or go deep with fears for the future and recurrence. It’s an open and safe space for us. We’re here for you because we get you. We are you. We hope to see you on the last Wednesday of the month at 6 PM ET to help you find your own breasties and build relationships within SHARE.