Wednesday, August 29, 2007

The War on Cancer - Part 2

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Part 2 of this three-part series called the “War on Cancer,” looks at the political response to this nationwide epidemic.

What is the state of this nation’s War on Cancer?

Given that only 6 of the 16 candidates for President of the United States showed up for the Presidential Cancer Forum, you might think it’s AWOL.

Of the eight Democratic contenders, four showed up, including two of the front-runners - Senator Hillary Clinton (NY) and former Senator John Edwards (NC) – as well as Governor Bill Richardson (NM) and Representative Dennis Kucinich (OH).

Of the eight Republican candidates, only two showed up: Former Governor Mike Huckabee (AR) and Senator Sam Brownback (OK).

Neither one of the Republican front-runners - former Mayor Rudy Giuliani (NY) or former Governor Mitt Romney (MA) - bothered to attend. Even Senator John McCain (AZ), a two-time skin melanoma survivor, whose story is posted on the Lance Armstrong's Livestrong website, was a no-show.

The Democratic forum was substantially interrupted by the breaking news of Attorney General Alberto Gonzalez’s resignation from the Department of Justice. The Republican forum wasn’t even televised.

The Democratic attendees said that as President, they would:

* make the War on Cancer a national priority
* ban smoking in public places and require the FDA to regulate tobacco products
* make the cervical cancer vaccine Gardasil available to all girls
* support electronic medical records so that we can have a “seamless health care system”
* accelerate the drug-approval process – especially for experimental therapies
* expand clinical drug trials
* implement a comprehensive national health care system

Co-moderator, Lance Armstrong said that costs and lost productivity due to cancer costs this country $200 billion a year. However, we only spend $5 billion a year on all cancer funding.

The four Democratic candidates advocated a “surge” in the War on Cancer. John Edwards said that the Iraq War had already cost $500 billion, money that Hillary Clinton said could instead be funding the NIH and NCI. She said we need to “win the War on Cancer in the 21st century.”

No questions directly relating to the challenges facing eye cancer patients (choroidal melanoma, eye melanoma, uveal melanoma, ocular melanoma, intraocular melanoma, and ciliary body melanoma), were addressed on either day.

Until the next Presidential Cancer Forum, we need to get our cancer in the public eye by telling our story - to our local media, in blogs, in religious gatherings, in social settings, and in our workplaces.

And make sure you write, e-mail or call the six presidential candidates who had the courage and conviction to make the War on Cancer a war they want to win for the American people.

Next Up: The War on Cancer - Part 3: Eye Cancer

The Presidential Cancer Forum was co-sponsored by the Lance Armstrong Foundation and MSNBC. It was co-moderated by Lance Armstrong and Hardball host, Chris Matthews. It was held before a live audience in Cedar Rapids, Iowa.

It’s your sight.

It’s your life.

Friday, August 24, 2007

The War on Cancer - Part 1

Why do some cancers see dramatic improvements in screening, diagnosing and treatment therapies while other cancers continue to present formidable clinical challenges?

Part 1 of this three-part series called the “War on Cancer,” charts the milestones in the war on breast, prostate, testicular, cervical and AIDS cancers. This is not an exhaustive list. But it does provide an interesting overview of how, since President Nixon signed the National Cancer Act 1971, these patients have seen a better quality of life and improving survival rates for their cancers.

Part 2 focuses on eye cancer (also called choroidal melanoma, uveal melanoma, intraocular melanoma, eye melanoma, ocular melanoma and ciliary body melanoma), which has not seen a change in incidence or mortality rates in the past 25 years, despite considerable and expensive research, diagnosing and treatment advances.

Cancer "cures" seem to have four historical patterns in common:
* breakthrough research
* political action
* patient advocacy
* personal stories

When all four factors come together, life-altering changes in the cancer landscape happen.


January 1971 – President Nixon declares a War on Cancer during his State of the Union address. Cancer is the second-leading cause of death (after heart disease) in the US. He requests that Congress add $100 million dollars to the National Cancer Institute (NCI) budget for cancer research.

December 1971 - Nixon signs the National Cancer Act to make the “conquest of cancer a national crusade.” The Act funds 15 cancer research centers and its mandate is research to “reduce the incidence, morbidity and mortality from cancer.”

1973 - Between 1973 and 1978, about 280,000 women take part in the NCI-ACS (American Cancer Society) mammography screening project at 27 cancer centers around the country.

September 28, 1974First Lady Betty Ford discloses her breast cancer diagnosis and talks openly about her resulting mastectomy.

1976 – Journalist Betty Rollin writes, First You Cry, a ground-breaking book on her breast cancer journey.

1978 – Gay men start showing signs of what will become known as AIDS, which is caused by the human immunodeficiency virus (HIV).

1978 – The FDA approves the anticancer drug cisplatin which revolutionizes the treatment of testicular cancer, a lethal cancer of young men. Patients now have one of the highest cancer cure rates – even in metastatic cases.

1983 - The Susan G. Komen Foundation holds its first Race for the Cure in Dallas, Texas. The Foundation has invested over $1 billion dollars in breast cancer programs in its 25 years of operation. Breast cancer survival rates have steadily increased in the past 30 years and have been attributed to smaller tumors at the time of diagnosis.

February 1985 – The FDA approves the first HIV antibody test which allows at-risk people to be screened prior to the onset of symptoms.

March 1987ACT UP is formed to “demand greater access to experimental AIDS drugs and for a coordinated national policy to fight the disease.”

March 1987 – The FDA approves the AIDS antiretroviral drug AZT which delays the progression of the disease and the replication of virus.

October 11, 1987 – The AIDS Memorial Quilt is displayed on the National Mall in Washington, DC.

November 1987 – San Francisco journalist Randy Shilts publishes, And the Band Played On, the first book to document the exploding AIDS crisis.

October 1991 – Basketball star Magic Johnson announces he has AIDS.

1993 – “Junk Bond King” Michael Milken founds CaPCURE, the Association for the Cure of Cancer of the Prostate, (now called the Prostate Cancer Foundation), following his diagnosis with the disease.

1994 - The FDA approves the PSA test which provides early detection of prostate cancer. Advances in prostate diagnosis and treatment have been dramatic: Overall, 99% of men diagnosed with prostate cancer survive at least five years. Further, 92% survive at least 10 years, and 61% survive at least 15 years. These are impressive statistics in a disease in which 2 out of 3 cases are found in men 65 years and older.

1994 – The BRCA1 gene is found, that, if damaged, can predispose women to breast cancer and ovarian cancer.

1995 – The BRCA2 gene is found.

1995 - Julia Sweeney, who gained notoriety as the androgynous Pat on Saturday Night Live, annnounces that she has cervical cancer.

1996 - Sweeney writes and performs her one-woman hit Broadway monologue, God Said, Ha!, in which she addressed her experience of surviving cervical cancer.

October 1996 – Clinical launch of the BRCA1 and BRCA2 test which can determine an at-risk woman’s chance of developing breast cancer and ovarian cancer.

October 1996 – Cycling champion Lance Armstrong is diagnosed with testicular cancer.

1997 – Armstrong launches the Lance Armstrong Foundation which has raised $181 million dollars for cancer programs.

2000 – Armstrong publishes his best-selling book about his cancer story called, It’s Not About the Bike.

May 2004 – Armstrong launches the Livestrong bracelets with 70 million bands sold to date.

June 2006 – The FDA approves the Gardasil vaccine against the human papillomavirus (HPV) infection that causes virtually all cases of cervical cancer. The cervical cancer death rate declined by 74% between 1955 and 1992 due to the increased use of the Pap screening test. Rates continue to decline 4% each year. Vaccines like Gardasil may eventually eradicate cervical cancer.

August 27-28, 2007 - The Lance Armstrong Foundation announces the first ever Presidential Cancer Forum in which candidates will "detail their respective policy plans for fighting cancer, a disease that kills nearly 1,500 Americans every day."

Next Up: The War on Cancer - Part 2: The Presidential Debates

It’s your sight.

It’s your life.

Monday, August 20, 2007

Eye Cancer Vision

In 1985, Beverly Zakarian was a wife, a mother to a 15-year old girl, and a newly diagnosed patient with Stage 3 ovarian cancer. She lost her uterus to surgery and her hair to chemotherapy, but she found her passion for patient empowerment.

Zakarian learned the hard way a lesson that has now become a touchstone in most successful cancer treatments – that patients must take an active role in their cancer care. Her experience with the “don’t ask, don’t tell” medical establishment, confusing federal bureaucracies and unresponsive insurance companies, led her to found the Cancer Patients Action Alliance.

Instead of being a care-based patient group - providing access to services, emotional support and other important but reactive resources - Zakarian and CAN-ACT advocated direct patient action via a political, social and personal agenda.

Her book, published one year before her death in 1997, still speaks with the fire of an evangelist's belief in the transformative power of information.

Zakarian’s most enduring vision – and what keeps this book relevant today - is that life and death decisions belong to the community most impacted by the disease. And by organizing, cancer patients can be a voice not only in the conversation but in their outcome.

It's a vision for the eye cancer (aka choroidal melanoma, eye melanoma, uveal melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma) community. The majority of the eye cancer medical establishment, incuding all five of the doctor-founded eye cancer nonprofits, continues to fund treatment research of a disease which has not seen a change in the incidence or mortality rates in the past 25 years.

Extensive and expensive treatment research has not resulted in a change in eye cancer survival rates. Clearly, a radically different approach is needed that involves multidisciplinary participation, including that of a patient advocacy group.

In the meantime, you can honor Beverly Zakarian's message and memory by becoming an "activist cancer patient." Request copies of your medical records, understand your disease, and share your eye cancer story (see the Eye Cancer News - People links on this site).

It’s your sight.

It’s your life.

Wednesday, July 11, 2007

Inside Eye Cancer

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Eye Melanoma.
Uveal Melanoma.
Choroidal Melanoma.
Ocular Melanoma.
Intraocular Melanoma.
Eye Cancer.
Ciliary Body Melanoma

Each year, 2,000 adults in the U.S. are given the frightening diagnosis of “eye cancer”.

But not all eye cancers are created equal. In fact, all the terms listed above are broadly used to describe a melanoma located in the uveal layer of the inner eye, the only eye cancer that is still deadly.

Cancers in other parts of the eye, such as iris (represents only 10% of the uveal cancers), conjunctival and eyelid cancers, are generally not as lethal. Even retinoblastoma, a childhood eye cancer of the retina, enjoys a 95% cure rate.

Adult eye cancer is usually first noticed by the patient, who experiences defects in or a changing visual field.

Bottom line: Get your eyes checked by an ophthalmologist, a medical doctor who is licensed to perform dilated eye exams and who is trained to recognize developing cancers inside the eye.

The smaller the lesion and the sooner it is treated by an ocular oncologist, the better the outcome visually and perhaps prognostically.

See your way to a healthy future with regular (if you have symptoms, be seen immediately) dilated eye exams.

It’s your sight.

It’s your life.

Saturday, May 26, 2007

See A Cure

William Steig, a famous children’s book author, wrote the classic CDC?, a word puzzle book, which used letters to say something in code such as:

C D C ? = See the sea?

E-R I M! = Here I am!

I N-V U = I envy you

Using Steig’s letter code, say the letters below slowly and out loud.


The word “cancer” is just another way of saying, “see a(n) answer.”

Cancer, like life, is how you look at it.

The purpose of this site is to raise awareness about a rare and rarely-mentioned disease called eye cancer that is diagnosed in over 2,000 people in the U.S. each year.

Read the blogs, click through the links, and learn more about eye cancer, what it is and how it’s diagnosed and treated, and what we can do about it.

It’s your sight.

It’s your life.

Together, we can see a cure.™