Today, there are over 70,000 adolescents and young adults diagnosed with cancer per year in the US alone. For over two decades there has been little or no improvement in survival in cancer patients between the ages of 15-39, as defined by the US National Cancer Institute. Cancer is the most common fatal disease in adolescents and young adults.

Traditionally, cancer has had two schools of thought: paediatric oncology and adult oncology. Today, however, oncology (the study and treatment of cancer) can be thought to consist of four distinct divisions: paediatric, adolescent and young adult, adult, and geriatric cancer. What makes adolescent and young adult cancer patients different are the unique diseases that affect this age group. Paediatrics suffers from cancers such as leukaemia, and adults suffer from diseases  such as lung, prostate, gastrointestinal tract, and urinary system cancer, which are identified as older people’s diseases. Comparatively, almost 90% of all invasive cancers in the adolescent and young adult group are accounted for by ten groups. [See box]

Box [2]:
1.    Breast cancer
2.    Lymphomas
3.    Melanoma
4.    Female genital tract tumours (ovary and uterine cervix)
5.    Thyroid carcinoma
6.    Sarcomas
7.    Testicular cancer
8.    Colorectal carcinoma
9.    Leukaemias
10.    Brain tumours

[5]

Being an adolescent or young adult is the biggest risk factor for delayed treatment, even though there is some overlap in diseases between the different age groups, . Moreover, in the US, young adults have the highest percentage of uninsured or under-insured individuals of any age group. In 2004, 13.7 million young adults aged 19 to 29 lacked coverage, an increase of 2.5 million since 2000 [1].

People in the age range 15–39 have different risk factors for cancer. Cervical cancer occurs most frequently in females infected with human papillomavirus. Risk factors for Hodgkin’s lymphoma (cancer originating from a white blood cell) include a history of autoimmune disorder, a family history of malignancy or hematopoietic disorder (abnormal formation of blood cells), and being of Jewish descent [3]. Skin cancer risk factors can be contributed to a combination of events such as high UV exposure, having a mole and a history of skin cancer in the family [3]. Melanoma (a type of skin cancer) is the most common cancer in women ages 20-29, and the biggest cause of cancer deaths in women ages 25-30 [3]. Ironically, more than 9,500 cases of malignant melanoma were diagnosed in the UK in 2005, and while Australia may have a high rate of melanoma (9,722 new cases in 2004), the death rate is lower because of early detection (1,600 deaths in 2005 compared to 1,852 deaths in the UK in 2006) [4,12,].

Adolescents and young adults have different physiology (e.g. hormones) and pharmacology (e.g. drug clearance, side effects) to other age groups with respect to cancer susceptibility and treatment [7]. To fully comprehend these differences, scientists need more people of this age range to participate in medical trials. In addition to adolescents and young adults being under represented, there are far fewer men than women who have participated in clinical trials between the ages of 20 and 40 [2]. Poor clinical trial participation is one reason why there is a lack of progress on cancer treatment for young adults and older adolescents.

Today, cancer survival in paediatric and older adult age groups continue to improve, all while progress on treatment of adolescents and young adults remains lagging behind. That is why there are organisations that are creating a community for this age group through health education, survivorship events, conferences and policy making; as well as providing psychosocial support through support groups, social networks and blogs.

Organisations, such as the Teenage Cancer Trust (TCT) in the UK, are building units in NHS hospitals specifically for teenagers with cancer. The newest one is opening at the Addenbrooke’s Hospital in Cambridge at the end of 2009. In the US, organizations such as I’m Too Young For This! Cancer Foundation (i[2]y) and Planet Cancer have created grassroots movements to raise awareness and improve young patients’ prospects. ‘Spot a Spot’ is an educational outreach program in the US that is educating more than 10,000 students every year on the key risk factors for skin cancer using their “Spot a Spot. Save a Life” campaign. Finally, SeventyK is an adolescent and young adult advocacy organization that has proposed a new patient’s bill of rights specifically for young cancer patients, which has over 7,000 signature supporters globally. They have teamed up with other international organizations to help create a international charter that will set the precedence for treatment of adolescent and young adult cancer patients throughout the world.

Long-term survival and health is also important for young cancer survivors, which is why many organisations are emphasizing psychosocial support, as well as addressing other issues such as fertility[1,8]. Going through, for example, a round of radiation or chemotherapy increases an individual’s risk of infertility and of developing secondary cancers later on. The primary concern when dealing with cancer is survivorship as well as secondary concerns such as fertility treatment. Yet, a GP’s level of knowledge about preserving fertility, their attitude and their comfort level with the topic can vary [6].  That is why it is important for GPs to be up to date with the fertility options available, and to offer sperm banking and ovarian cryopreservation (freezing of parts of the ovary containing immature eggs) to adolescents and young adults; who may have not been given clear explanations of long-term side effects of their cancer treatment [9,10].

In order to increase survivorship for a generation who have fallen through the gaps of medical practise, there needs to be stronger science, improvement in the way psychosocial issues are addressed, and self-empowerment. The medical community needs to increase their understanding of the adolescent and young adult age group and their high risk factors for cancer. Along with continued education, clinical and epidemiological research needs to improve in order for the medical community to understand what makes this age group so unique.

A healthcare provider’s responsibilities need to go beyond the clinic and they should help to develop age appropriate programmes in order to ensure the survival of cancer patients from paediatrics to adolescents and through to young adults. Finally, there needs to be a sense of ownership from adolescent and young adult cancer patients, so that their voice is not blurred by misdiagnosis or delayed treatment. Ownership beginning with patients taking control of their health and supporting policy initiatives introduced by advocacy groups such as SeventyK [11] . It is important for young people to know as much as they can about their cancer and its effects; enabling them to make sure they receive the correct treatment and seek out the appropriate and specific help and care they deserve.

By Ali Ansary, SeventyK Co-Founder,  originally printed in The Triple Helix. Special thank you to Dr. Leonard Sender & the SeventyK team.

References:
1.    Adolescent and Young Adult Oncology Progress Review Group. Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. Department of Health and Human Services, National Institutes of Health, National Cancer Institute, and the LiveStrong Young Adult Alliance.
2.    Bleyer, A., et al. (2008) The distinctive biology of cancer in adolescents and young adults, Nature Reviews Cancer, April, vol. 8, pp. 288-298.
3.    Bleyer A, O’Leary M, Barr R, Ries LAG (eds): Cancer Epidemiology in Older Adolescents and Young Adults 15 to 29 Years of Age, Including SEER Incidence and Survival: 1975-2000. National Cancer Institute, NIH Pub. No. 06-5767. Bethesda, MD 2006.
4.    Skin Cancer. Cancer Research UK. http://info.cancerresearchuk.org
5.    Bleyer A. (2007) Young Adult Oncology: The Patients and Their Survival Challenges, CA Cancer J Clin, vol. 57, pp. 242-255.
6.    Quinn, G., et al. (2008) Patient–physician communication barriers regarding fertility preservation among newly diagnosed cancer patients, Social Science & Medicine, pp. 784–789.
7.    Wu, X., et al. (2005) Cancer incidence patterns among adolescents and young adults in the United States, Cancer Causes and Control, vol 16, pp. 309–320.
8.    Schover, L, et al. (2002) Knowledge and Experience Regarding Cancer, Infertility, and Sperm Banking in Younger Male Survivors. Journal of Clinical Oncology, April vol 20, 1880-1880.
9.    Soliman, H. and Agresta, S. (2008) Current Issues in Adolescent and Young Adult Cancer Survivorship, Cancer Control, Vol 15, pp 55-62.
10.     Jeruss, J. and Woodruff, T. (2009) Preservation of Fertility in Patients with Cancer, N Engl J Med 2009, vol: 360, pp. 902-911.
11.    SeventyK [homepage on the Internet]. [(www.SeventyK.org)
12.    Australian Government. Department of Health and Aging. Skin Cancer. http://www.skincancer.gov.au/

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

“It feels like a gamble with his health” reads a quote from today’s LA Times news article on how physcians in California will be accepting less patients who are insured with Medi-Cal.

For some of you non-california residents, Medi-Cal is medicaid in California and now the reimbursment rates for physicians are decreasing yet again.  Thus, less physicians are willing to accept to see Medi-Cal patients.

What does this mean for being an adolescent or young adult (age 15-39)-you’re in between a rock and a hard place. Currently, Medi-Cal provides health coverage for over 6.5 million low-incomed individuals and familes. Medi-Cal covers 26% of the 10 million children under 19 in California.

In 1965  President Johnson signed Medicaid into law on July 30, creating Title XIX of the Social Security Act, almost 43 years later, have we made the impact that we had hoped to make? I would say yes of course we have in terms of treatments, but when the general population (40+ million uninsured), lack that access or cannot afford health care, then we must go back and assess how we can build a strong country that values the health of its citizens and their education before anything else.

Thomas Jefferson observed that without health there is no happiness, and called for the government to give highest priority to the health of citizenry. I believe that against the back drop of potentially exciting prospect for health gains, there still exist disparities. Such inequities prevent reassurances that the advancement we strive to discover extend throughout the entire population.

The question I pose is, what would you do to change it?

Ali Ansary is an AYA Cancer Advocate. He is a co-author for the SeventyK Adolescent and Young Adult Cancer Patient’s Bill of Rights.

One of the primary roles of cancer prevention strategies in adolescents and young adults stated by Dr. Archie Bleyer in an article in CA Journal, has been to prevent cancer in later adulthood by instilling lifestyles and preventive practices during formative years. This preventative tactic is already difficult enough to tackle among young adults, let alone reaching minority groups that might not have the same access to care as other communities. As we look at prevention in young adults, how do we reach these smaller groups?

“Prevention in minority populations has been met with challenges unique not only to each group’s cultural beliefs, but also to language, socioeconomic status, and other factors,” states Cure Magazine.

At UC Berkeley, looking for volunteer opportunities, I stumbled across the Women’s Cancer Resource Center (WCRC), which to me contains many of the components towards a solution. Taking the Latina population and breast cancer, this center offered a completely different outlook, a personal and cultural center that was the answer for many women initially seeking answers to questions about their breasts and cancer.

Entering the Women’s Cancer Resource center you see that the walls are covered in local artist’s paintings and immense woven tapestries fusing vivid colors. There are countless shelves of literature all categorized for easy use and a smaller room hidden off to the side. The sign at the top of the door reads, “Latinas con Cáncer,” and is an area designated especially for Latina women. Resources are bilingual and this helps to break down the Spanish language barriers that exist to really embrace the idea of cultural competency in the realm of health education and prevention. One might ask why such a program is so important specifically to Latinas. It is part of the solution to the paradox plaguing Latina women where breast cancer is the leading cause of cancer deaths even though they have lower incidence rates. This increased death rate is due to late diagnosis in part from the lack of cancer education, early prevention techniques employed, language compensations, all intertwined with cultural attitudes and misconceptions within the Latina community.

Even though there is a lower incidence rate for Latinas, they are still more likely to have large tumors and metastatic cancer, causing breast cancer to be the leading source of death among Latina women. The difference is that 70 per 100,000 Hispanic women develop breast cancer a year but only 40% of the women are utilizing mammography.

Within some of the culture breasts are viewed to be maternal, rather sexual, and something private that isn’t shared often with a doctor. There are even some Latina women that believe that if they talk about cancer, it is more likely to happen. With that we see a definite barrier to prevention seeded within a culture that maintains privacy around a woman’s body and experiences.

Ysabel Duron, Director of Latinas Contra Cancer, an organization that has developed creative ways to reach and educate the Latino community about cancer says, “One of our major goals is to try and educate the community that meets their needs and meets them where they live, work, and worship, instead of waiting for them to come to us.”

More educational outlets need to be created as one of the ten essential public health services include the ability to inform, educate, and empower people regarding health issues. It is also an essential service to link people to needed personal health services, to get them to the appropriate cancer centers in the area. The issue with intervention strategies, regardless of the type, is that they must struggle to demonstrate that they are offering something of local and personal value to community members. All of these tactics must be implemented creatively, in order to draw on the qualities of the Hispanic community.

Understanding and applying these cultural factors is the key in designing a program that tries to curb late diagnosis of breast cancer through increasing education of the disease as well as promoting cancer screening. Their peers could even recruit from women within the community so the more respected women would be chosen to bring in a sense of familiarity to the program. There needs to be a network of females reaching out with their own knowledge to other women to create friendships and increase available outlets such as Latinas Contra Cancer which impart health initiatives targeting Latinas at mother-daughter events. Once that personal bond is created, the flow of knowledge back and forth in limitless, and the silence of cancer can be broken not only within the Latina community but countless other communities as well.

Finally, the article interestingly states future prospects, “To the extent that minority populations don’t either avail themselves or get access to some of the early diagnosis and screening programs that currently exist, one might anticipate that the impact [of prevention strategies] would be even larger [than in the white population].”

Sarah Sharaf is an AYA Cancer Advocate. She is a co-author for the SeventyK Adolescent and Young Adult Cancer Patient’s Bill of Rights.