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

Good news for cancer survivors:

Most female and male childhood cancer survivors have normal pregnancies and healthy children, according to two U.S. studies…

read more here:

http://news.yahoo.com/s/hsn/20091007/hl_hsn/mostchildhoodcancersurvivorshavehealthybabies

Ever feel like you are just having the worst day ever and no matter whom you talk to, they just don’t understand you? It’s like, going through your first break up while the rest of your friends have no idea what it’s like to go through one. You know, the feelings of why me…why now? Well, imagine being a senior in high school with nothing but the senior prom on your mind when all of a sudden you are diagnosed with cancer. Well, not only will you now be spending most of your time at the hospital and with your parents, but you will probably feel too sick to make it to prom, hang out with friends, etc. When all of your friends are leading “normal” lives, getting ready for prom, playing sports, and just doing normal teenager things, you are in a hospital bed after rounds of radiation or chemotherapy. Your friends are sitting around each other at lunch and you are sitting around doctors and nurses.

Who do you talk to? How are you friends supposed to really understand how you are feeling if they aren’t going through what you are going through? Many young cancer patients wish to lead normal lives but find it difficult to do so. Throughout adolescence, we are always consumed with what our peers think of us and our friends are probably the first ones we turn to when something goes wrong. For cancer patients, it seems as though the stresses of adolescence are exacerbated. They go through many physical and emotional changes—most of which they cannot control—and there is no doubt that they need a steady source of support from their peers.

Although few studies have focused on the effects of peer support groups on young cancer patients, I think it is important to shed light on the matter. With the few studies that have been conducted, it has been concluded, and it seems like an obvious truth, that peer groups provide a major source of support for adolescent cancer patients. It provides them with normal interactions that adolescents experience in their daily lives and gives them a chance to experience life as a teenager and not a cancer patient. Moreover, these support groups provide them with the opportunity to interact with people that have been on the same cancer journey. Bringing the social realm to them—providing them with opportunities to have someone to talk to that can understand what they are feeling or giving them a chance to share their thoughts and communicate with other people in general (YouTube, Facebook, Twitter)—these are all very simple yet HUGE ideas that can really do some good. Adolescence is probably when we feel the MOST uncomfortable, confused, and the list goes on. And I think that doctors, nurses, and other healthcare providers really have the ability make a difference and provide the kind of care that makes these young patients feel comfortable and cared for. I think it’s really important that others take into consideration that because adolescence is a battle on its own, we SHOULD and NEED TO  provide the kinds of support they need when they need it most—not just as a cancer patient but also as a normal teenager.

Written by Tanvi Bhakta, a seventyk advocate