Category: News/Articles

Mind the Gap: Cancer in Adolescents and Young Adults (Part II)…

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

Picture 4

[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/

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Best Concert for a Cancer Patient? Looking for tickets?

Our fellow supporters at the Teenage Cancer Trust will be hosting their 10th annual concert at the Royal Albert Hall in London from February through March. Tickets go on sale tomorrow, Feb 5th!!!
Here is a sneak preview:

Line up is confirmed, and supporting acts are yet to be announced.

Depeche Mode – supported by The Horrors

Wednesday 17 February – SOLD OUT
Depeche Mode have spent most of the year on their acclaimed worldwide ‘Sounds Of The Universe Tour’, which was one of the biggest of 2009 and sold over 2 million tickets in Europe alone.

Them Crooked Vultures

Monday 22 March
A rock supergroup that was formed in Los Angeles in 2009 by John Paul Jones, Dave Grohl and Josh Homme. The group also features Alain Johannes in live performances. The band began recording in July 2009, and performed their first gig on August 9, 2009 in Chicago, followed by a European debut on August 19. On October 1 the group embarked on a worldwide tour titled Deserve the Future with dates going into 2010.

Comedy night: Jimmy Carr, Noel Fielding and Rhod Gilbert

Tuesday 23 March
Jimmy Carr is one of the most original, well known and distinctive stars on television, radio and the stage.

Noel Fielding has written and appeared in three highly acclaimed series of The Mighty Boosh for BBC2 and BBC3 and a sell-out UK tour of the show.

Welsh comedy sensation Rhod Gilbert, one of the leading comedy talents in the country.

Suede

Wednesday 24 March
Brett Anderson, Mat Osman, Simon Gilbert, Richard Oakes and Neil Codling will regroup onstage for the first time in almost a decade to play an extraordinary one- off gig benefitting Teenage Cancer Trust. Brett Anderson said: “Everyone has been touched by cancer. Suede have supported cancer charities since 1993 when we donated the Mercury Prize money to cancer research. We’re delighted to be playing the Royal Albert Hall this year and helping the Teenage Cancer Trust.”

Noel Gallagher

Thursday 25 March and Friday 26 March
Noel is a long-time supporter of Teenage Cancer Trust, playing at the very first Royal Albert Hall show in 2000 alongside Roger Daltrey and appearing again in 2002, 2003 and 2007. In 2009 Noel released an exclusive collection of recordings from his standout acoustic performance for Teenage Cancer Trust at the Royal Albert Hall on 27 March 2007. Titled ‘THE DREAMS WE HAVE AS CHILDREN’ (Live for Teenage Cancer Trust).

Arctic Monkeys

Saturday 27 March
Arctic Monkeys achieved chart success with their second single, I Bet You Look Good on the Dancefloor, which reached number one in the UK Singles Chart. Their debut album Whatever People Say I Am, That’s What I’m Not, released in January 2006, became the fastest-selling debut album in British music history.

JLS

Sunday 28 March
JLS, Britain’s favourite new boyband in a generation, were runners-up in the fifth series of The X Factor. Aston Merrygold, Marvin Humes, Jonathan “JB” Gill, and Oritsé Williams signed to Epic Records at the beginning of 2009 and enjoyed continued chart success throughout the year.

The Specials

Monday 29 March
An English two-tone ska revival band which was formed in 1977. Featuring songwriter/keyboardist Jerry Dammers, Terry Hall on vocals, Lynval Golding on guitar and vocals as well as a rhythm section, the band helped pave the way for groups such as Madness and The Selector. The band achieved two number ones with Ghost Town and Too Much Too Young and after seven consecutive UK Top 10 singles between 1979 and 1981, the band broke up.

The Who

Tuesday 30 March
Wrapping up the 10-night spectacular in style with a performance of Quadrophenia. Roger Daltrey CBE, Patron of Teenage Cancer Trust said: “When The Who first got together in 2000 to raise money for this brilliant charity, I had no idea we’d achieve so much from these shows. In the last ten years we’ve raised over £8.7 million and counting. Teenage Cancer Trust has come such a long way since our first gig and I’m extremely proud of this event.”

For more information check out: http://www.teenagecancertrust.org/what-we-do/royal-albert-hall/2010/

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World Cancer Day

According to the World Health Organization, today is World Cancer Day.

Cancer is a leading cause of death around the world. WHO estimates that 84 million people will die of cancer between 2005 and 2015 without intervention.

Each year on 4 February, WHO supports International Union Against Cancer to promote ways to ease the global burden of cancer. Preventing cancer and raising quality of life for cancer patients are recurring themes.

This year’s theme, “Cancer can be prevented too”, focusses on simple measures to prevent cancer such as:

  • no tobacco use
  • a healthy diet and regular exercise
  • limited alcohol use
  • protection against cancer-causing infections.

http://www.who.int/mediacentre/events/annual/world_cancer_day/en/index.html

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Most Childhood Cancer Survivors Have Healthy Babies

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

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What’s a recent college graduate to do about health insurance?

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.

ziggy insurance

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/

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UCI Young Adult Cancer Awareness Week

img_83651UCI’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

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Study into Mobile Phone Health Risks for Adolescents

mobile brainProfessor 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

Dr. Devra Davis

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.

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Dansette