We were trying to play around with a few different ways of looking at cancer. After reading a highlight in the Harvard Business Review on data visualization by Jeff Clark at Neoformix (http://neoformix.com/), we thought we give it a go.

First is a stream graph. We thought we check out to see how #cancer performs and its frequency found as a search term for the last 1,000 tweets.

Next was a Twitter Spectrum. As Berinato from HBR describes, it compares two search terms and shows which words are associated with each term and which words are most commonly used in tweets with both terms. Here we used #cancer and #breast.

Finally, we looked at the TwitterVenn. This Venn diagram looks at the frequency of use of each term and frequency of overlap of the terms in a single tweet. We compared the top killers of adolescent and young adults: #cancer, #heartdisease and #suicide.

Alex (part 3):

If you could travel to anywhere in the world, where would that be and why?: “I travel for a living, so there haven’t been many places I wanted to go and haven’t already. I would say Sardinia. It’s an island off the coast of Italy. It’s very nice and relaxing.” – Alex

Four years ago, Alex was involved in a serious car accident, after which he saw a pain management doctor. With time, Alex continued to experience pain, which prompted his pain management doctor to suggest a full body CT scan to check for any non-visible abnormalities. The CT scan revealed a nodule in Alex’s right lung, and he was referred to an oncologist. The initial biopsy of the tumor was inconclusive as to whether the tumor was malignant or benign, and it was three months later that Alex had the lower right side of his lung removed. After several biopsies and CT and PET scans, it was finally determined that Alex had Adenocarcinoma, a cancer that originates from glandular tissue. Alex was a non-smoker and did not surround himself with second hand smoke, and so his diagnosis came to him as a surprise.

Following his lobectomy, the removal of a lobe of his lung, Alex experienced physical changes such as lower energy levels and difficulty breathing. He had to take time off from work, which required much traveling and would therefore take a toll on his body. Luckily for Alex, he did not have many issues with receiving insurance and maintaining his coverage while away from work.

Like many other young adults diagnosed with cancer, Alex found that the majority of cancer patients he encountered at the hospital to be elderly patients, and that there were few people who understood the idea of being young and supposedly healthy and then being diagnosed with cancer. Alex sought out SeventyK, which supports adolescent and young adult cancer patients, in hopes of meeting and speaking with other young adult cancer survivors. It is also Alex’s hope that SeventyK spread the word and inform the public that there are adolescents and young adults (AYA) battling cancer that need support from family, friends, physicians, and other health care professionals. Through personal experience, Alex dealt with his cancer diagnosis through the support of his family and not much from his friends.

In the end, Alex said that were it not for the car accident, he might not have discovered his tumor until much later. He feels very lucky to be alive today.

SeventyK’s take and its Bill of Rights:

Alex, like countless of other AYA cancer patients, did not have adequate psychosocial support from other cancer patients, friends, or family of the same generation or age range, from 15 to 39 years of age. SeventyK’s 7^th Right wants to ensure that AYA patients have the help and resources to receive the necessary psychosocial support during and after the patients’ treatment of cancer. Contrary to what many may believe, the battle with cancer lasts long after the cancer has been removed and treated, and for some patients, it is after the completion of their cancer treatment that the most psychosocial support is needed.

Written by Stacy Tsai

Posted by Stacy Tsai

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/

It was all coming too fast. Three weeks ago J had gone to her GP (General Practitioner) to complain about the swelling of her arm that had not subsided. She had recently graduated from Yale—at the top of her class—and was preparing to go to Harvard Law School. She was home for the summer living with her parents in New York. J had two younger brothers and a young sister in London. The only thing that mattered to her was her post-graduation trip to sunny California. It was when J had been packing and had gone to reach for her shirt on the top of the dresser that the chair she was standing on lost its grip and J fell a couple feet to the ground, landing on her arm. As she only had some swelling and slight pain, her GP simply recommended to ice it and she would be fine.

When as young adults we complain of a problem to a GP we are not always taken seriously, which can result in late diagnosis or misdiagnosis. In fact, there are many explanations for late diagnosis and according to Dr. Archie Bleyer, these include delaying to seek medical care and obtaining a correct diagnosis, lack of routine medical care, poor training or an unwillingness to care for young adults among GPs, under-recognition by medical professionals of certain diseases or its symptoms and signs in J’s age group, and lack of health insurance (US).

J’s persistence to meet with her GP and to tell him that her swelling and pain around her right arm was not a result of her fall saved her life. J actually had osteosarcoma, one of the most common bone cancers in adolescents and young adults. The treatment for it calls for a combination of chemotherapy followed up with a surgery to remove the tumour and follow up chemotherapy to improve any chances for removing the cancer cells. Generally, radiation is only used when surgery is impossible. If J had waited any longer, the chances of metastasis of the tumour would have increased, most likely going to her lungs. Although the causes are unknown, the symptoms of osteosarcoma include tenderness, swelling and pain when lifting. All these are common symptoms usually also experienced after a fall so it can be seen how J’s GP could have overlooked a serious bone cancer for just a slight irritation. Yet, are GPs doing everything they can? to be continued…

By Ali Ansary, SeventyK Co-Founder

From an excellent article by Thomas Goetz posted in Wired Magazine this month: