What does it mean and what does it entail to be in the prime years of your life and to have the big C, Cancer, come crashing down on you? Holly, Alex, and David share the gravity of their situation and what it means to be diagnosed with cancer.

Holly (part 1):

What do you like to do on your free time and who do you usually spend it with?: “In my spare time I really just like to be with friends and take each day in, and live life to its fullest. Life is too short and I try to live by that. I am also hoping to be doing some mentoring at CHOC hospital soon… Anything I can volunteer to help, and living life to it’s fullest!!” – Holly

Holly’s story began in October 2008 when she visited her primary care doctor for what she believed was a bladder infection. Three different antibiotics and four weeks later, the pain she experienced had not subsided. It wasn’t until Holly saw her gynecologist for an annual check-up that her gynecologist suggested having an ultrasound test. A tumor at Holly’s right ovary, believed to be benign, was spotted, and in late December of that year, Holly had surgery to remove the tumor. It was then that she was diagnosed with Nonhodgkin’s lymphoma, a rare cancer derived from lymphocytes, a type of white blood cell.

And thus began Holly’s difficult journey and battle with cancer. While sitting in the waiting room to be seen by her oncologist, Holly noticed that she was the youngest patient there. There was no one to relate to, no one else who understood how out of place she felt to be in that waiting room sitting among elderly patients much older than herself.

Holly’s physician recommended four cycles of chemotherapy and radiation treatment for her cancer. What her doctor had failed to discuss with her were her fertility options after receiving the treatment, as the radiation would compromise the function of her remaining ovary. With one ovary already removed, it was important for Holly to maintain the function of her only ovary so that she could still have the chance of conceiving. Holly wanted a chance to have children. Without much support or information from her oncologist, she did her own research into fertility treatments and looked at the option of freezing her eggs. Unfortunately, the procedure was too expensive to consider. Eventually she rejected the radiation treatment and proceeded with six cycles of chemotherapy, which allowed her to retain the function of her remaining ovary.

When contacting her health insurance provider, Holly requested that she have a case manager, someone who knew her diagnosis, treatment history, and story, someone who could answer her questions and from which she could receive authorizations should she require it. The case manager helped Holly’s communication with her health insurance provider tremendously.

Although Holly completed her chemotherapy treatment in June 2009 and her physical health has returned, she has been changed forever. She shared that having cancer changed her outlook on life and allowed her to appreciate the smaller things. Having been diagnosed with cancer put things in perspective for Holly. At the same time, her diagnosis isolated her and forced her to confront the strength of her existing relationships with her friends. Holly explained that having cancer made her a more vulnerable person as she saw first hand just how easily life could be taken away. Yet because she was able to survive cancer, Holly realized that her challenging battle also made her a stronger person.

SeventyK’s take and its Bill of Rights:

SeventyK’s 1st Right, “the right to be taken seriously when seeking medical attention… and entitlement to separate and confidential discussions regarding… care,” can support cancer patients like Holly so that they can be quickly diagnosed by their primary care physician and receive adequate attention from their oncologist, who may not be aware of the many issues that need to be addressed for adolescent and young adult (AYA) cancer patients. Such topics important to AYA cancer patients may include fertility preservation, as highlighted in SeventyK’s 3rd Right, “the right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect…fertility.” Holly’s efforts to maintain the function of her remaining ovary in hopes of being able to have children in the future should have been noticed and addressed by her physician. Furthermore, fertility treatments and options for Holly should have been provided and discussed by her physician. Holly should have had the right to be informed about potential clinical trials that she could have participate in, as explained in the 4th Right.

Holly communicated to her insurance provider that she would like to see Dr. Sender, an AYA cancer specialist at the Children’s Hospital of Orange County and at the University of California, Irvine, the sponsor and creator of SeventyK. Holly’s request was denied because the University of California, Irvine was out of her insurance’s network. SeventyK’s 5th Right, the right to access an AYA cancer specialist, regardless of the patient’s insurance or geographic location, would have allowed Holly to be cared for by Dr. Sender, a physician well versed in AYA concerns, issues, and care. Fortunately, Holly was able to access a caseworker, someone capable of handling the specifics of her case, a right emphasized in SeventyK’s 6th Right.

Written by: Stacy Tsai