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.

There really is nothing like that special moment, the years it takes to that one day: graduation.  It seems amazing, you have a degree, great friends, proud family, the world at your fingertips.  Then it sets in. The real world.

Adjusting to adulthood, managing the transition back from the safety of the college dorms/campus housing can seem daunting.  Looking for a job, especially in an economy like this is no small task.  You get your diploma and with your age you get the boot from your parent’s insurance or your school’s.  What do you do about paying for the extra frills? Is health insurance considered “extra” now?

How did you manage?
Let us know your thoughts.

http://www.cnn.com/2009/HEALTH/05/21/ep.college.graduate.insurance/

UCI’s Young Adult Program put on a “Young Adult Cancer Awareness Week” with events from March 30th to April 3rd.  Beyond featuring the program itself, the week promoted other young adult cancer related programs such as SeventyK and Spot A Spot (part of the National Melanoma Awareness Project, www.spotaspot.org).

We had a lot of amazing young adults come out to the event to help out and enjoy the festivities.  With chalk art, silk art, a rock wall, photo booth, and informational booths the week was a great success.

Watch the video and read more about it here:

http://www.zotzine.uci.edu/2009_04/sender.php

Professor Sim, from Monash University in Australia, has taken part in an international study to look at the association between mobile phones and brain tumors in young people.  This five-year study will recruit adolescents and young adults ages 10 to 24 who have had cancer, as well as those who have not, to participate.

InterPHONE, a series of multinational case-control studies has investigated this issue in older adults, but this study with Professor Sim will be the first of its kind for this young patient population.

We hope that this study will help shed light on this controversial issue.

Source, and for more information:

http://www.cellular-news.com/story/36270.php

http://www.virtualcancercentre.com/news.asp?artid=13263

Here is a video clip of Dr. Devra Davis regarding the link between cell phone use and brain cancer.  She is the Director of the Center for Environmental Oncology at the University of Pittsburgh.

When we are in our 20′s we think we are indestructible.

The reality is that about a third of young adults between the ages of 20 and 24 lack health insurance.

This article speaks about the situation of young adults as discovered by the Center for Disease Control (CDC):

http://www.cnn.com/2009/HEALTH/02/17/cdc.young.people/

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.