See A Cure ● Uveal Melanoma

Sizing Up Eye Cancer

2008-06-23T06:42:00.000-07:00

The ocular oncology community is divided over when to treat small choroidal lesions: when they present with the risk of growth based on the TFSOM clinical standard or when they actually grow.

The above graphic, (click on image for a larger size), uses everyday images to illustrate the size differences between a choroidal nevus (less than 5 mm) and small, medium and large-sized choroidal melanomas (5-18 mm).

• A choroidal nevus is a lesion that is roughly the size of the end of a small birthday candle or less than 5 mm in diameter.
• Small choroidal melanomas range in diameter from 5 – 10 mm, or from the eraser top of a pencil to the bottom of a AAA battery.
• Medium choroidal melanomas range in diameter from 10 - 15 mm, or from a size slightly smaller than a watch battery to the bottom end of a tube of lip balm.
• Large choroidal melanomas are more than 15 mm in diameter, or at least dime and penny-sized eye cancers.

Eye cancers larger than 18 mm in diameter are usually enucleated (removed). First, the globe cannot tolerate the radiation doses required to successfully treat such a large cancer. Secondly, to prevent recurrences, treatment usually extends 2-3 mm beyond the tumor's edge. Since the COMS plaques range in size from 12 - 20 mm, a safety margin around a 19 mm tumor is not possible raising the risk of recurrence.

A 12 mm (watch battery-sized) tumor will be treated with at least a 14 mm (AA battery-sized) plaque. In contrast, small melanomas of 7 mm (pencil eraser-sized) in diameter will still be treated with the 12 mm plaque - the smallest currently available plaque size. Proton beam (pg. 19) is also a treatment option for choroidal melanomas.

If you have been diagnosed with a small suspicious or a medium to large-sized choroidal melanoma, this graphic can put the size of your lesion/eye cancer into context using everyday examples which are easily found in a utility drawer or change purse.

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A Closer Look - TFSOM

2008-06-19T16:09:00.001-07:00

Cancer is a life-threatening disease in which early detection and treatment is the standard of care.

Yet, the eye cancer community continues to debate the merits of early detection and treatment of small but suspicious choroidal nevi. Some ocular oncologists are diagnosing and treating extremely small lesions. Others advocate a wait-and-see approach in which growth indicates malignancy and therefore treatment.

This conversation is taking place while 50% of the patient population dies at 10 to 15 years, a mortality rate that is unchanged despite treatment advances. Since the incidence rates in both the U.S. and Europe are also unchanged, it raises the question as to whether we are catching and treating this rare cancer in time to save the life of the patient.

Under either the COMS or American Joint Committee on Cancer (AJCC) tumor classifications, small choroidal melanomas - when the threat to life is the lowest - are lesions that are less than 3 mm thick and at least 7 mm in diameter.

The TFSOM clinical standard (click on above graphic to view larger image) found that the risk of malignant growth is 50% when 2 or more factors are present. Therefore, waiting for growth when malignant conditions already exist, is begging the question.

Why does size matter? Genetic research is showing that uveal melanomas may acquire more chromosomal defects as they grow, leading to a higher risk of metastatic death. Currently, there is no treatment for metastatic uveal melanoma with the average time of diagnosis to death being 7 to 12 months in unresectable tumors.

Without clear agreement and direction from the ocular oncology community, downstream providers, such as family practitioners, general ophthalmologists and optometrists, will fail to recognize these lesions as early cancers and refer out these patients for specialized sight and life-saving care.

Since a ‘growth’ management philosophy may be potentially devastating on a patient’s outcome, See A Cure urges individuals presenting with small but suspicious choroidal lesions to be informed about the TFSOM standard and the diagnosing controversy so that they can either partner with their doctor - or obtain a second opinion - on their sight and life decision.

It's your sight.

It’s your life.

Together, we can see a cure.™

Biology of a Cure?

2008-06-18T12:09:00.000-07:00

Why do some small and unremarkable primary uveal melanomas metastasize while larger, more invasive eye tumors do not?

What factors cause an existing choroidal nevus to transform into a choroidal melanoma? And how are those factors different from or similar to the ones that cause uveal melanomas to arise de novo (new)?

How on earth is it possible that the rates of incidence (the number of people diagnosed) and mortality (number of people dying) for uveal melanoma remain eerily unchanged for decades despite diagnosing and treatment advances?

Just what is uveal melanoma (also called choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma, eye cancer and ciliary body melanoma)? More importantly, how do we successfully treat this rare and puzzling cancer?

Uveal Melanoma: A Model for Exploring Fundamental Cancer Biology does not answer any of these questions. So far, much of the research on uveal melanoma chromosomes, molecules and proteins has only confirmed long-standing clinical observations that tumor pigmentation, diameter, blood vessel morphology, cell type, race, eye color influences its prevalence, progression and prognosis.

In other words, all this cellular research has merely affirmed on a genetic level what was already known on a clinical level. Real progress will only be achieved when this genetic research is translated into improved patient outcomes - a process which appears decades away from reality.

If, as one of the authors argues, that uveal melanoma is "an excellent model for the study of cancer biology in general," than a more multi-disciplinary and-faceted approach is warranted.

That kind of support is not only going to come from the lab but also from the larger community of medical professionals and their patients. This was a fascinating book which ironically proves that research alone will not lead us to see a cure.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Model Perspective

2008-05-27T16:25:00.000-07:00

This is an outstanding product and proof that medical information can be both accessible, informative and affordable.

At this price, there's no reason this large 3-dimensional model isn't available for use by eye cancer (also called uveal melanoma, choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma) patients and their ocular oncology or retinal specialist physician.

The removable eye model is mounted on a sturdy platform allowing full rotation. The outside structure shows the eye muscles and a cut-away view of the three eye layers: the tough, outer layer of the white sclera, the blood-rich middle layer of the choroid and the inner retina, the half-moon area that covers the back of the eye.

For brachytherapy patients, doctors can show their patients exactly where the disc-shaped plaques containing the radioactive seeds will be sewed onto the back of their sclera, what muscles will be cut to access the placement area and what vital structures, such as the optic nerve, could be impacted. Patients receiving proton beam, will see how the narrow beam will enter through the pupil to the target area. The model can also be used to explain other less common but available therapy such as trans-scleral resection or TTT.

The horizontal halves of this model can then be separated for a look inside the eye. With this perspective, patients will appreciate the physical location of the tumor to vital internal structures such as the macula, fovea, major blood vessels, and the optic nerve, and compare that to the location of the external plaque delivering the tumor-killing radiation to the choroidal layer, where more than 85% of eye tumors arise.

Depending on the tumor size, location and dose delivery, some radiation will seep past the choroid and negatively impact the retina causing a condition known as radiation retinopathy.

The iris projects images onto the retina which sends those signals through the optic nerve to the brain for sight. Radiation retinopathy damages the smooth retinal surface, distorting and interrupting the visual process. Using this model, patients will see just how and why this happens.

This model allows doctors to share with their patients vital insight into their care. And that's a perspective worth seeing.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Eye Cancer Visionaries

2008-05-20T11:49:00.000-07:00

This fascinating little volume (only 121 pages), documents a symposium held to honor Dr. Willem Manschot, the 1979 recipient of the Snellen Medal, the Netherlands's award in ophthalmology.

In 12 short papers, uveal melanoma researchers such as Oosterhuis, Zimmerman and McLean, Manschot and van Peperzeel, among others, discuss clinical versus histopathological diagnosis, tumor doubling times, natural history cases, treatment modalities (enucleation v. radiation), metastatic disease and mortality rates, proposing theories confirmed by the Collaborative Ocular Melanoma Study (COMS), more than 20 years later.

What all these ocular oncologists have in common - despite their differences of opinion - are their incredible powers of observation and analysis and bold argumentation in challenging the assumptions about the causes of and treatment for uveal melanoma (also called choroidal melanoma, eye cancer, eye melanoma, ocular melanoma, intraocular melanoma or eye cancer).

Zimmerman's radical thesis, later disproved, that enucleation caused dissemination of metastatic disease, nonetheless forced a change in the standard of care from enucleation to globe-sparing plaque therapy.

Manschot's powerful argument about the risks of tumor doubling times on both primary and secondary disease progression, led to advocacy of earlier diagnosis of suspicious lesions and research toward chromosomes and prognostic molecular testing.

These visionaries not only anticipated the COMS results, but also the revolution in molecular biology. That invaluable historical perspective keeps this 30-year old book relevant today.

And their broad, well-read and multidisciplinary perspective has inspired current clinicians such as J.W. Harbour, C.L and J. Shields, Dan Albert, Hans Grossniklaus and Bruce Ksander among many others who will help us see the next revolution in uveal melanoma.

It’s your sight.

It’s your life.

Together, we can see a cure.™

A Bright Spot in Melanoma Care

2008-05-15T14:04:00.000-07:00

Last night, representatives from See A Cure attended the 2008 Spring Symposium: Advanced Treatment of Melanoma Follow-up Guidelines by Disease Stage. The title artlessly but accurately summed up the evening’s theme.

About 75 people attended the 3-hour event that was billed as “an evening of education, discussion and connection for patients, survivors, families and friends” and hosted by the Melanoma Foundation of New England (MFNE) on the Dana-Farber Cancer Institute campus.

Skin cancer advocacy groups are well organized, vocal and can be a model to uveal melanoma advocacy efforts. And although cutaneous melanoma and uveal melanoma (an eye cancer also known as choroidal melanoma, eye melanoma, intraocular melanoma and ciliary body melanoma) are not the same disease, the diagnosing, staging, follow-up testing, research and clinical trials are similar for both patient populations.

The most important overlap between skin and uveal melanoma patients is that there are few treatment options for metastatic disease. In fact, uveal patients receive treatment for metastatic disease that is designed for metastatic skin melanoma patients.

Here’s a recap of the evening.

Education:
Skin melanoma has ABCDE; uveal melanoma has TFSOM. Acronyms or mnemonics are effective ways to convey a complicated message. MFNE passed out wallet-sized guides to ID’ing skin cancer. A magnet would be a more visible tool.

Publicity:
Skin cancer screening ad: "See Spot. See Spot Grow. See Dermatologist"; uveal needs eye-catching graphics, slogans and ads. Skin has the Ugly Duckling Theory which is to look for suspicious skin nevi within groupings of normal mole/lesions. There are visibility and asymptomatic challenges to “seeing” uveal melanoma. We need to brainstorm solutions.

Advocacy
Tanning beds: Tanning bed UVA rays (vs. UVB) are deeply penetrating. Use of the beds may be cause of higher epidemiological rates (number of cases) and contributing to later development of deadlier disease. MFNE is organizing students to sign a "No Tanning Pledge." Uveal melanoma has no proven link to early sun exposure. However, there may be opportunities for 20-year olds + outreach through well-vision checks.

Legislation:

Tanning Bed Bill – Public Act 1329, is in the Public Health Committee. MFNE is orgainizing outreach to legislators. Uveal can promote legislation on many issues which will be addressed in an upcoming article.

Detection:
Dr. Marie-France Demierren spoke on "Follow-up Guidelines for Non-Invasive Melanoma." In situ (contained) cancer is always better than invasive cancer. Skin cancer with vertical growth invades beyond the epidermis; uveal melanoma with vertical growth (tumors over 5mm high) break through the Bruch’s membrane with potential extraocular extension which allows both blood and lymph invasiveness.

Follow-up:

Skin melanoma uses the LDH serum blood test as a prognostic marker; so does uveal. Depending on grade (Stage I or IV), skin melanoma is treated by primary dermatologist and then a medical oncologist. Uveal patients are typically only seen by their ocular oncologist or retinal specialist. However, medium and large uveal melanoma patients should consider follow-up by a medical oncologist (see page 11) such as Dr. Hodi, Dr. Sato, Dr. Weber, Dr. Atkins among others.

Screening:
There’s info and then there’s actionable info according to symposium presenter, Dr. Michael Atkins. Early detection will lead to better treatment outcome is true for primary tumors but not metastatic ones; same rule applies to uveal which is why ocular oncologists differ on testing protocols. Mets disease can be detected 45-75% of the time through physical exam and history, imaging only 10% and blood tests 5% of the time.

* Blood test have low sensitivity to disease until tumor burden already detectable through other means such as physical exam and feeling of lymph nodes; same is true in uveal. Europe is screening with the S100B – a sensitive blood test not routinely available in US and of no prognostic value in uveal. MIA (Melanoma Inhibitory Activity) and RT-PCR clinical tests that are not validated, yet; unclear benefit to uveal.

* A normal scan does not mean no evidence of disease (NED); it means there is no measurable disease (if any). Treatment is based on measurable disease and mets may be present if not always measurable.

* Adjuvant therapies (preventative care) are not given in either skin or uveal since no benefit shown when given for metastatic disease (same drugs used in adjuvant as in mets).

* The median time to relapse is inversely related to disease stage of primary tumors for both skin and uveal melanoma (smaller tumors 6+ years; larger tumors, 2-3 years). Overall risk lessens over time for skin melanoma; is not true for uveal where threat of mets is lifelong due to long latency period.

Metastatic Treatment
Chemotherapy: DTIC chemo been around 30 years. Works but not as long or as well as expected.
Immunotherapy: IL-2 been around since 1998 (from data compiled between 1986-1994). No better than chemo.

Combination: Both DTIC/IL-2 are effective but are toxic, inpatient, expensive and limited treatment locations (not avail at Dana-Farber). Response is better, relapse takes longer, but survival benefit is nominal.
Molecular Targeted Therapy: CTLA-4 antibodies such as Ipilimumab and Tremelimumab fight tumor-induced immune suppression. C-kit by Dr. Hodi is a promising treatment. Challenge is that there are 20 or more subsets of skin melanomas that are molecularly different; uveal melanoma is fairly homogeneous suggesting single-agent treatment but research continues. Meantime, uveal mets patients receive skin melanoma therapies.

Challenges:

Clinical trials: Debate over whether the treatment is better or the patient selection is better. Promising results from Phase I and II trials are not repeated in larger Phase III trials which suggests bias in patient selection in the smaller trials.

Outcome Measurements:
Between 1975-2003 skin melanoma mortality rose 35% while prostate, breast, colon and cervical all dropped 50%, 10%, 25% and 10% respectively; uveal melanoma mortality remains unchanged for over 25 years despite treatment advances.

Other:
Just 3-4 minutes of sun exposure are needed to get daily allowance of Vitamin D. Can get through supplements, too. SPF lotions must be applied 15-20 before sun exposure in order to provide maximum protection.

Conclusion:

MFNE did an excellent job providing information to the lay public - both patient and general interest - on skin melanoma issues. Their work can be a model for uveal melanoma organizational efforts.

It’s your sight.

It’s your life.

Together, we can see a cure.™

What You See is What You Get

2008-05-13T13:12:00.000-07:00

In “Tumors of the Eye and Ocular Adnexa,” ocular oncologist Dr. Devron Char, presents 27 well-organized chapters – moving from the external to internal eye - with references attached to each section.

Numerous color and black-and-white photos and surgical drawings illustrate the test.

This work fulfills three criteria for successful resources: To be affordable (the retail cost is $70), accessible (thanks to his layperson language), and accurate.

What detracts from this work is the way medicine continues to organize cancer by location rather than pathology. This is no reflection on Dr. Char; his book (published in 2001 before the COMS results and the revolution in molecular biology) is one of 22 in the American Cancer Society’s Atlas of Clinical Oncology series that also features volumes on site specific themes such as prostate, lung, brain, bone, breast, among other cancers.

As a result, skin cancers of the eye (cancers caused by UV radiation) such as lid and conjuctival tumors, are described in this book instead of ACS’s “Skin Cancer” volume.

Retinoblastomas and neuroblastomas, childhood eye cancers, have cellular pathologies so radically distinct from any other eye neoplasm, that location alone doesn’t justify their inclusion here. And ocular melanoma, (also called choroidal melanoma, eye cancer, eye melanoma, uveal melanoma, intraocular melanoma or eye cancer), which continues to defy a standard diagnosis, treatment or cure (for 1 of every 2 patients), also belongs in a category all to itself.

Someday, cancer professionals will think of cancer by its molecular biology rather than its physical location. But for now, Dr. Char’s birds-eye view of the eye cancer landscape is broadly revealing.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Eye Cancer: Past and Future

2008-05-09T12:31:00.000-07:00

There are 1,750 entries in Dates in Ophthalmology a "chronological record of progress of ophthalmology over the last millennium," compiled by noted ocular pathologist, Dr. Daniel Albert.

Of those, only 15 deal with ocular melanoma, an eye cancer also known as uveal melanoma, choroidal melanoma, eye melanoma, intraocular melanoma and ciliary body melanoma.

That works out to about 1% of the total entries, which, oddly enough, mirrors the total number of people diagnosed with this cancer each year as compared to all other cancers.

In both the historical and personal experience, eye cancer is a rare disease.

The majority of the chronology briefly and elegantly describes 1,000 years worth of discoveries into cataracts, eye design and structure, instruments and techniques, trauma and infections. It's clear that even rudimentary research executed by primitive means led to sustained improvements in patient eye health.

Except, that is, for ocular melanoma, the cause of and cure for which continues to elude today's clinicians and patients.

It's fitting then, that Dr. Albert gives ocular melanoma the very last entry in his compilation. In 2002, the National Eye Institute's Collaborative Ocular Melanoma Study (COMS), which he worked on from 1985-2003, and where he led the Pathology Center, proved that the modern-day treatment of bracytherapy had the same survival rates as the ancient therapy of enucleation (eye removal).

In closing like this, even Albert, a dedicated champion of ocular research, recognizes that ocular melanoma remains a challenge to visual science. Let's hope that the next 1,000-year ophthalmic chronology opens on a better note.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Eyes on the Prize

2008-05-07T13:30:00.000-07:00

“No matter where you go, there we are.”

See A Cure is moving decisively to advance our eye cancer awareness and education mission (also called choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma) across the information spectrum through:

Google Ads: We are currently running ads that average over 3000 searches (how many times people type in one of our search terms which generates our ad) and between 15-20 hits per day (when they actually click through to the See A Cure site).

Amazon: We have built, and will continue to enhance, our Amazon presence through reviews, Listmainia's and eye cancer search tags. Amazon, which links to all the major search engines, is a free and effective way to share our message.

Online Communities: We are building a presence on MySpace (thank you to Carol R and Amanda Y for the suggestion), Friendster and Facebook. Social networking sites are another way to reach our audience through these free and widely-used mediums.

Blogs: See A Cure maintains several free Blogger sites all of which link directly to Google’s search engines – one of the biggest on the Web. All our postings upload within a day creating a powerful online archive that is searchable by anyone, anywhere and at anytime.

Domain Names: At a bargain price of less than $10 a pop, we have purchased over 15 different domain names relating to cancer of the eye – such as choroidalmelanoma.com, uvealmelanoma.com, intraocularmelanoma.org, and ciliarybodymelanoma.com – and linked them to our See A Cure site. These domain names also become searchable terms that then link to our blogger site.

E-Commerce: By the end of this month, we will launch a retail site on CaféPress.com featuring on-demand ordering of See A Cure gear and goods of which we will receive a percentage of the sale. This approach limits expenses such as storage and inventory demands, shipping and handling costs and administrative overhead.

YouTube: We are working with eye cancer patients and their families to post videos of their story (see Jill's Yahoo! video as an example).

By establishing an online presence on free-based platforms such as Amazon, Google, YouTube, Yahoo! and these other services, we spend the least amount of money for the most amount of exposure thereby saving our financial resources for the only thing that really counts: Seeing a cure.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Eye Melanoma: Where the Sun Doesn't Shine

2008-04-30T04:51:00.000-07:00

“There is a common misconception that ocular melanoma and skin (or cutaneous) melanoma are essentially the same disease and that research of the more prevalent skin disorder will satisfy the needs within the community of physicians treating the ocular variety. This is not the case. The two differ in their systemic symptoms, metastatic patterns, and susceptibility to treatment."

Dr. Daniel Albert

Tomorrow, May 1, kicks off Melanoma Awareness Month – for skin melanoma. What does this mean for uveal melanoma?

Well, for some, the fact that uveal melanoma and skin melanoma share the same last name, means they must be related. If not first cousins, surely second; but family, nonetheless.

For others, the fact that both uveal melanoma and skin melanoma arise from the same cells – melanocytes – means they must be related. The argument goes something like this:

A (skin) = B (melanocytes)

and B (melanocytes) = C (eye)

therefore A (skin) = C (eye).

And so, the thinking progresses to this: If malignant skin melanocytes are caused by sun exposure, it stands to reason that malignant eye melanocytes are caused by UV exposure, too.

Therefore, uveal melanoma should catch a free ride on the skin melanoma bandwagon during May Melanoma Month.

Perfectly reasonable and perfectly wrong.

Uveal melanoma (also called choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma), isn’t anything like skin melanoma.

UV radiation isn't a proven risk factor for uveal melanoma. Numerous studies do not support this common belief of a link between the two (frequently cited studies from Australia were self-reported phone surveys).

Uveal melanoma is as prevalent in northern as southern latitudes in the US. In fact, in Europe, uveal melanoma is more prevelant in northern versus southern latitudes.

In contrast to the increased incidence of skin melanoma (which has risen 120% between 1973-1994), the incidence of uveal melanoma has remained stable over 25 years.

Jumping on the skin melanoma bandwagon takes the uveal melanoma community in the wrong direction.

Instead, the See A Cure Foundation has applied for a National Eye Cancer Day in September on the U.S. Health Calendar, under the Department of Health and Human Services. We need our own day to educate the public, physicians and even ourselves about this rare cancer.

Raising awareness may lead to earlier diagnosing and treatment, which may lead to better patient outcomes. And that's a day on which we all can agree.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Giving Thanks

2008-04-23T09:00:00.000-07:00

"Never doubt that a group of thoughtful,

committed people can change the world.

Indeed, it is the only thing that ever has.”

Since October 2007, The See A Cure Foundation has raised over $7,000 despite being a mere blip on the eye cancer (aka choroidal melanoma, eye melanoma, uveal melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma) fundraising radar and despite our 501(c)(3)-pending status.

Seven-thousand dollars. That’s over $1000 a month.

We have received donations as small as $10 and as large as $1000. An anonymous donor sent us $25, via our PayPal link, after receiving a Google alert about one of our recent postings.

A woman in California sent $50 because, as a member of the OCU-MEL listserve (people whose primary eye cancer has spread), she supports patient-driven outreach.

A pastor in Texas sent us $100 when a woman, whose husband had successfully been treated for eye cancer, told him their story and mentioned our newly-formed group.

From the Midwest came $350 from the grateful parents of a recently diagnosed daughter who found our extensive listing of stories, research, resources and support groups to be exactly what she was looking for during a confusing and frightening time.

In addition to money, See A Cure has received generous in-kind donations of office supplies and equipment, computer support and outstanding graphic design.

We are building a patient-advocacy community one person and one dollar at a time.

To those who have contributed and to those who will, thank you.

We deeply appreciate your willingness to reach out and reach deep to help See A Cure.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Ocular Melanoma Video - Dr. Carol Shields

2008-01-13T13:44:00.000-08:00

In this video, Dr. Carol Shields, the Associate Director of the Ocular Oncology Service at Wills Eye Hospital and a Professor of Ophthalmology at Thomas Jefferson University School of Medicine, discusses how ocular melanoms are diagnosed.

She has authored an astonishing 700+ articles, and is widely recognized as a preeminent authority on ocular tumors (also known as choroidal melanoma, uveal melanoma, eye melanoma, eye cancer, intraocular melanoma and ciliary body melanoma).

Of interest, Dr. Shields also played basketball for the Notre Dame Fighting Irish, and was given their highest honor for excellence in academics and leadership.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Ocular Melanoma Video - COMS

2008-01-12T10:22:00.000-08:00

In this video, Dr. E. Rand Simpson, an ocular oncologist and Director of Ocular Oncology at Princess Margaret Hospital in Toronto, discusses the Collaborative Ocular Melanoma Study (COMS) and the clinical features that are suggestive of ocular melanoma (also known as choroidal melanoma, uveal melanoma, eye melanoma, eye cancer, intraocular melanoma and ciliary body melanoma).

It’s your sight.

It’s your life.

Together, we can see a cure.™

The War on Cancer - Part 2

2007-08-29T19:24:00.000-07:00

(click on comic to view larger image)

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.

Together, we can see a cure.™

The War on Cancer - Part 1

2007-08-24T13:09:00.000-07:00

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, 1974 – First 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 1987 – ACT 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.

Together, we can see a cure.™

Eye Cancer Vision

2007-08-20T06:26:00.000-07:00

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.

Together, we can see a cure.™

Inside Eye Cancer

2007-07-11T14:25:00.001-07:00

(click on comic to view larger image)

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.

Together, we can see a cure.™

See A Cure

2007-05-26T09:10:00.000-07:00

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.

C A N C-ER

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.™