GapMinder is a nonprofit based out of Sweden and was acquired by Google recently. Its main spokes person has been Professor Hans Rosling who has been able to demonstrate the beauty of GapMinder in looking at statistics to tell us about the past, present and future.

Although some of the data can be sparse, we wanted to take a minute and compare the GDP (wealth) of a country to the cancer deaths per 100,000 women. We looked at five cancers: cervical, breast, colon/rectum, liver and lung.

Quick analysis: the interesting part is that you can  see which diseases have a higher burden in different parts of the world. Cervical cancer appears to have a greater death rate in developing countries (here an HPV vaccine would be most beneficial). Then you have diseases such as breast and lung cancer which has similar death rates across all countries. Finally, you have diseases such as colon, rectum and lung cancers which appear to affect more developed countries.

Hope you enjoy-

Yellow = Americas (large bubble is the US)

Dark blue = Africa

Green = Middle East & North Africa

Orange = Eurasia

Red = Southeast Asia & Australia (large bubble is China)

Light Blue = South Asia (large bubble is India)

*size of the bubble represents country population

Cervical Cancer

According to GLOBOCAN 2002, an international World Health Organization database, there were 381,033 cases of cervical cancer world wide per year.

Breast Cancer

According to GLOBOCAN, there were 1,060,042 cases of breast cancer world wide per year.

Liver

According to GLOBOCAN, there were 46,521 cancer of liver cancer world wide per year.

Colon & Rectum

According to GLOBOCAN, there were 36,2911 cancer of colon and rectum cancer world wide per year.

Lung

According to GLOBOCAN, there were 162,377 cases of lung cancer world wide per year.

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.

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:

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

Should Teri Smieja have preemptive surgery to protect against breast and ovarian cancers?

Teri Smieja
Portrait: Alexandra Compain-Tissier

Teri Smieja had a choice to make. A mother of two living in the small town of Ridgecrest, California, she learned in February 2009 that she has a much higher risk of developing breast and ovarian cancers than the typical American woman. And she needed to figure out what to do about it.

It had happened very fast. In late 2008, her aunt went on a trip to Israel. When she came back to the States, she explained to Smieja that Ashkenazi Jews like themselves were more likely to have mutations in two genes known as BRCA1 and BRCA2. Those mutations put women at a much higher risk for breast and ovarian cancers. Sixty percent of women who have mutations in one or both of the genes will develop breast cancer, and up to 40 percent will develop ovarian cancer. (The average American female has about a 12 percent risk of breast cancer, and a 1.4 percent chance of ovarian cancer.) For Smieja, who didn’t really identify as Jewish, this was all new. “I had never heard of Ashkenazi anything before,” she says, let alone BRCA genes. But she did know that ovarian cancer ran in her family — her grandmother had it, her aunt had it, her mother has it. “I always figured I had a higher chance of getting cancer,” she says, but she hadn’t known there was a way to measure that risk.

So Smieja took a genetic test and learned that she was positive for the BRCA1 mutation. That finding, combined with her family history, made it more than a possibility that she would develop breast or ovarian cancer — it became a likelihood. In a term that reflects the age we live in, women like Smieja are known as previvors — they don’t have a cancer yet, but they surely have something. The question now was what to do next. “I had this paper in my hand that said I have up to an 87 percent risk of getting cancer by age 70. And, of course, I started crying; I was really upset. But then it hit me: It didn’t say I had cancer; it said I could get cancer. So I said, ‘Stop feeling sorry for yourself. This is good news. I can do something about this.’”

Slowly, her decision tree began to emerge. Estrogen promotes cell division in women and therefore spurs the proliferation of cancer cells. Since the ovaries produce most of the estrogen in the female body, it’s often recommended that women with an increased risk have their ovaries and uteruses removed. An oophorectomy and hysterectomy, then, not only brings the risk of ovarian cancer close to zero but also reduces the breast-cancer risk by about 50 percent. After spending a lot of time on the Internet and visiting a genetic counselor (”They said I did it wrong. I was supposed to go to the counselor first,” she recalls), Smieja decided to have the oophorectomy and hysterectomy.

As far as surgeries go, oophorectomy with hysterectomy is relatively straightforward and can be performed laparoscopically in just a few hours. One downside was that she wouldn’t be able to have any more children, but Smieja wasn’t planning to anyway.

The next choice facing her was whether to have a preemptive double mastectomy (also known as a bilateral prophylactic mastectomy). This one was more difficult. Some women with high risk opt for this procedure because estrogen receptors in the breasts make them susceptible to cancer. But it is a more traumatic procedure, both in terms of recovering from the wounds and for social and psychological reasons. (For Smieja, it meant she could no longer breast-feed her second child.) And while it would further reduce the risk of breast cancer — by about 90 percent — the benefits were not as pronounced as with the oophorectomy.

For Smieja, the decision was traumatic to navigate. But ultimately it came down to her desire to reduce her risk through all available means. That meant waiting a few months to wean her baby, then having the procedures. “I’m done with that decision,” she says. “This is what I need to do. I need to be around for my kids. I am not my ovaries. I am not my breasts.”