David (part 2):

What is your dream job for the future and why?: “Outside of marrying rich, right? That I could study forever….yay. I haven’t really given much thought to a dream job. I will be studying for my PhD in English… but I suppose I would rather be the next Jon Stewart (and I am referring to him starring in really bad movies, not the next daily show host) or save the world, but I haven’t figured out that one yet. Although… I do keep putting on a red cape and jumping off my bed… then again… maybe I am just insane.” – David

David was at his parents’ home one night when he suddenly collapsed. The next morning, he was brought to the Emergency Department at Irvine Medical Center where he received a CT scan. His films showed a mass in his brain, and he was rushed immediately to St. Joseph to remove the tumor. A few weeks after his surgery, David was diagnosed with a frontal lobe tumor.

David felt that his oncologist, who he saw following the removal of his brain tumor, was purely a clinician who lacked the sensitivity needed from a health care provider. He did not know what questions to ask his physician in regards to his cancer and its effect on his life, and the physician likewise did not offer such information on behalf of his cancer patient. Five years after being diagnosed with cancer, David looks back at his past encounters with his physician and realizes the importance of having doctors that are advocates for their patients, particularly adolescent and young adult patients who have barely begun to live out their lives. He noted that many physicians believe their adolescent and young adult cancer patients to be young and therefore healthier and stronger than their patients who are children and the elderly. Because of this belief, physicians offer less support to their adolescent and young adult cancer patients.

A major issue for David throughout his battle with cancer was retaining his health insurance coverage. When first diagnosed, David was a student at the University of California, Irvine, and therefore had student health insurance coverage. However, after his diagnosis, David had to commit much of his time to receiving the cancer treatment, and had to take time off from school. He was no longer covered through the university and he struggled to be approved for health insurance. Initially denied coverage from Blue Cross, David was covered first under Medi-cal, California’s Medicaid program, for some time. His coverage under Medi-cal was limited, and so David continued to struggle with paying for his care. Some time later, David was covered under Medicare until Blue Cross finally accepted him after a resubmission of his application to Blue Cross for a separate program. David emphasized that a young adult is at a point in his or her life either pursuing graduate school, beginning to pursue a career, or still figuring out the next step of his or her life. It is a time in a person’s life when he or she has not necessarily reached financial stability, and health insurance coverage is a big issue, as young patients cannot yet pay for their treatments.

Although finished with his chemotherapy and radiation treatment, David must continue to receive MRI scans every 3 months to check whether cancerous growth has returned in his brain. When his life begins to resume to where he left off prior to his cancer diagnosis, he is reminded once again of the uncertainty of his future health status when he receives the MRI scan. However, David does admit that even with such constant reminders, he is a cancer patient who beat his odds of surviving.

SeventyK’s take and its Bill of Rights:

David struggled to find health insurance coverage that was affordable and that would allow him to continue to finance his cancer treatments, a right supported in SeventyK’s 2nd Right. While a student at the University of California, Irvine, David had insurance coverage from his school, but during the time he had to take off from school to receive his rigorous regiments of chemotherapy and radiation treatment, David lost that coverage. Unemployed, David had no sources of health insurance coverage. SeventyK’s 8th Right draws attention to this common issue for AYA patients, those that are still finishing school and not yet employed that have no access to health insurance. The 8th Right believes that students or employees should have the right to have their insurance and position protected by law while being treated for cancer.

SeventyK’s 9th Right, “the right to clear explanations regarding the long-term side effects of…disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options,” is another right that patients like David would benefit immensely from. David’s physician failed to address the various potential long-term side effects to his cancer treatment, the effects that chemotherapy and radiation would have on David’s physical as well as emotional well-being. What are the chances that the MRI scans that David receives every three months will indicate the regrowth of cancer in David’s brain? According to the 10th Right, AYA patients should have “the right to have their treatment options explained in full detail, to have…questions answered, and to receive clarification when requested.” David found his oncologist unapproachable when he had questions in regards to the possibility of his cancer returning. The 10th Right emphasizes that a physician, the communicator and middleman between the patient and his or her health care, must facilitate the patient’s understanding of his or her condition.

Written by: Stacy Tsai

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

Our son, Anthony, was 3 months shy of his 19th birthday when he was diagnosed on April 19, 2007 with Stage 4 Esophageal Cancer. Due to Anthony’s age, we found many gaps in his treatment. While there were many support groups for Pediatric’s (as there should be), we found no emotional or financial support for Anthony’s age group. To summarize the gaps, I would have to begin with the fact that Anthony was told up front that he had only 9-12 months to live. At that moment, he lost hope and without hope, there is no fight, and without the will to fight, it brings terrible anxiety and depression, both of which Anthony suffered daily. The anxiety that he experienced before, during and after treatment were inhumane. It is impossible for me to comprehend that his hospital did not have a properly trained Psychiatrist who deals with his age group and could provide medicine for his depression. The only Psychiatrist on staff told him, “you know you’ll succumb to this disease.” He may have been an “adult” to the world, but at 18, a young adults brain isn’t even fully developed, let alone to be expected to handle that kind of diagnosis. I cannot drive home enough how this lack of emotional support affected Anthony and all of us.

Another gap was there wasn’t any nutritional support or guidance on how best to deal with the side affects from the chemotherapy. While the nurses were helpful, it would have been extremely beneficial to have a nutrionist on staff to help me with his side affects such as his lack of appetitue, nausea and other physical issues that developed. The lack of a support group of young adults Anthony’s age was very apparent. There simply wasn’t anyone or anywhere he could turn to for conversation or to share his experience with. Fertility issues were another gap. They weren’t even brought up, until after his chemotherapy. When he was told he may be sterile, it added to his anxiety and depression. I don’t ever want to see another young adult and their family suffer as we did.

I feel so strongly that this age group “falls under the radar” for help. It is our mission to bring attention to this, as a way to help others and honor our son’s legacy.

Cindy is Anthony’s mother, and has dedicated her time to bringing awareness and education to the issues surrounding adolescent and young adult cancer.

Something is not right with this. It seems like 1/2 the young survivors I meet online get really sick or have passed. I’ve been a “survivor”/”mAss Kicker” for 2 1/2 years now. I find this very disturbing because over the past 30 years there has been no improvement in the survival rates in young adult age group (15-39) while the survival rates in the pediatric and geriatric population have improved. But more importantly this is disturbing to me because this group of young adult patients were the people who I preferred to turn to when I needed support. My friends were there, but it is nice to talk to or email someone that understands what you are up against. For me, most of the brain tumor patients that I could find were older women my mom’s age. Now don’t get me wrong, hanging out with other survivors was great, but finding young people closer to my age that could speak my “language” was something that I missed. My friends and family were great, but it was so nice to meet someone like me that was walking or had walked a similar path.There are many reasons there has been no improvement in young adult survival rates:

• Lack of research – Young people often are not eligible for studies (too old for pediatric studies or to young for traditional studies) and there are few studies geared towards the 15-39 age group.
• Entry level jobs with poor healthcare – young people are just starting out so the costs of healthcare are not a priority. Education about warning signs could really help.
• Doctors don’t take us seriously because we are not in the typical demographic for cancer, brain tumors, or whatever
• “Superman” complex – Belief that nothing can happen to us until it’s too late. We think we are invincible!

I’m tired of learning about people I’ve met getting sick again. I have made many friends on MySpace and facebook, but the fact remains that this demographic is often ignored. Organizations likeI’m Too Young for This or Planet Cancer do a great job providing support for the neglected young adult demographic, but people need to be aware of this fact. Because people generally don’t know about this please spread the word.

-Eric Galvez

Eric Galvez is a brain turmor survivor living in San Diego, California. He is the author of Reversal: When a Therapist Becomes a Patient.

http://www.ericgalvezdpt.com/

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