Eye Cancer ● Choroidal Melanoma

Genetic Soup for the Soul

2008-06-19T13:12:00.028-04:00

My April blog, "A Fishy Situation," described my first eye appointment with Dr. Seddon, a vitreoretinal specialist and Director of Ophthalmic Epidemiology & Genetics Service at Tufts New England Eye Center in Boston.

I felt she was best prepared to address my biggest post-treatment concern: how to manage the radiation retinopathy in my right eye which mimics the damaging effects of macular degeneration, her area of expertise.

Dr. Seddon led the center in Massachusetts for the National Eye Institute’s Age-Related Macular Degeneration Study (AREDS 1992-1998), a clinical trial that showed that high levels of antioxidants and zinc significantly reduce the risk of advanced age-related macular degeneration (AMD), the leading cause of irreversible blindness in people 50 years or older in the developed world. She recently published a follow-up study with AREDS participants that found “an individual’s response to AREDS supplements may be related to their genotype.”

In other words, your genetic make-up could determine whether or not you will respond to the nutritional oral supplements beneficial to AMD treatment.

Essentially, the first AREDS trial proved what provides the benefits against AMD (zinc, beta-carotene, Vitamin C/E) while the second trial proved who derives the benefit (individuals with the CFH genotype).

Welcome to the era of personalized medicine in which even your nutritional therapy is determined by the ingredients in your genetic soup.

Radiation retinopathy presents the same vision loss as AMD, due to blood vessel leakage and inflammation, although for much different reasons. To offset the radiation damage, I have been taking 3600 mgs of fish oil (omega-3) daily since my treatment for choroidal melanoma three years ago.

Contrary to clinical expectations, while I no longer have sharp, correctable center vision, I still enjoy a full visual field and my retinopathy has stabilized. So, during my appointment with Dr. Seddon last Friday, we discussed phase two of my post-treatment plan: protecting the vision in my healthy left eye.

As a result, I have added PreserVision to my daily supplement dosing. Research may never target the visual concerns of the post-treatment eye cancer (also called uveal melanoma, choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma) community. Yet, the results of the previous and current supplement trials (AREDS2) may be interpreted to hold potential benefits for some of us, too.

There's no down side to supplements (always consult your eye doctor), and they just may help. Medicine that does no harm. Always the first choice of care.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Eye-poppin' Fun

2008-05-06T11:47:00.019-04:00

Today, I take a break from the serious side of eye cancer (also called uveal melanoma, choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma) and merrily wander the world of eyeballs, which like the heart, represent a pretty big chunk of our everyday experience.

The eye is represented on our financial instruments, most famously the Eye of Providence on the back of the $1-dollar bill.

In the media world, there’s the CBS eye (which I have always found creepy; maybe their ratings would improve with a new logo).

The literary world abounds with eye references including the mythical Greek figure of Cyclops, and my favorite from Shakespeare’s Othello in which Iago says to Othello, “O, beware, my lord, of jealousy; it is the green-eyed monster, which doth mock the meat it feeds on.”

Then there’s the thrilling historical battle cry from Bunker Hill – one of my favorite Boston monuments - in which Colonel William Prescott ordered his troops to, "Don't fire until you see the whites of their eyes!"

In social issues, the series Eyes on the Prize, movingly told the Civil Rights story.

Long before in-car DVDs, I-pods and hand-held electronic games, my five siblings and I would play fierce games of “I-spy with my little eye,” on long road trips to pass the time.

Our language reflects the eye motif with phrases such as evil eye, apple of my eye, keeping my eye on you, snake eyes, among so many others.

On e-bay, an online auction community, you can search under “human eye prosthetic” and find dozens of beautiful and old glass eyes made by German craftsmen. Today’s ocularists use high-tech plastic.

There’s even an Eye Museum on the Web.

Finally, for silly fun, there’s Oriental Trading Company, where you can purchase items with bulging, wiggling, bouncing, glow-in-the-dark, flashing and edible eyes.

E-mail me other oddball eyeball phrases, references or images and I'll post them in a future blog.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Spitting in Cancer's Eye

2008-05-01T14:29:00.021-04:00

Once upon a time, cancer books from a patient perspective didn't exist, mostly because patients, despite having an enormous stake in the process, didn't have a corresponding voice in their care. A "don't ask, don't tell" attitude pervaded both the medical and patient community.

Then, in 1974, First Lady Betty Ford revealed her breast cancer - a shocking and controversial act because that violated the societal taboo that cancer patients didn't publicly discuss their disease.

This was followed in 1976 by journalist Betty Rollin's groundbreaking book, First You Cry, in which she challenged the conventional wisdom of radical and disfiguring mastectomy surgery for breast cancer.

The cancer conversation started taking a dramatic turn, moving beyond the purely clinical dimensions of the disease and toward a more profoundly personal experience.

By the early 1980s, the publishing world was churning out hundreds of cancer memoirs and biographies. These early books were raw expressions of pain, fear and disappointment, largely reflecting the dismal cancer landscape.

By the 1990s, though, partly due to the Race for the Cure, AIDS (which, due to intense activism, went from a 6-month death sentence in the 80s, to a chronic disease by the 90s), as well as Lance Armstrong and others, cancer awareness took a decidedly patient-empowered tone.

Even better, the improved personal outlook was matched by corresponding advances in the clinical world, once again raising the age-old question: which came first, the chicken or the egg?

Do medical advances improve patient outlook? Or does patient outlook improve medical advances?

Maybe all along, we've always needed both.

Which is why I am working on a graphic novel about my experience with eye cancer (also called uveal melanoma, choroidal melanoma, eye melanoma, ocular melanoma, intraocular melanoma and ciliary body melanoma). There is no question we need to improve the medical advances for our cancer. And maybe the place to start is in our outlook.

In the meantime, check out this Amazon Listmania! for books and DVDs that spit in cancer's eye.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Patient Focus

2008-04-28T17:39:00.053-04:00

When I launched the Eye Cancer Blog in September of 2006, there were exactly 4 other patient-run websites/blogs on choroidal melanoma. They were:

eye-melanoma.com - October 2003 (now defunct)
Chicago Support Group - March 2004
eyecancer.blogspot.com/ - Feb. 2005
Yahoo! ChoroidalMelanoma Chat Group - June 2005

Since then, dozens of regularly updated web, blog or social networking sites have emerged. Further, ocular melanoma (also called choroidal melanoma, uveal melanoma, intraocular melanoma, and eye melanoma) is more reported in the mainstream media channels – both mainline and online.

So, what changed? Here are a few ideas.

1. Collaborative Ocular Melanoma Study: COMS was the first government-funded clinical trial of choroidal melanoma. The ten year, $65-million dollar randomized trial studied whether plaque radiation therapy was as effective as enucleation in the treatment of medium and large choroidal melanomas. The sheer scale – over 40 participating centers in 2 countries (US and Canada), almost 2500 patients, 28 major reports, hundreds of ancillary studies and news releases - put ocular cancer on the medical map and in the public eye.

2. Physician Awareness: Because of COMS, optometrists and general practice ophthalmologists are better educated on how to recognize ocular tumors and to refer these patients to either retinal specialists or ocular oncologists.

3. Technology: Improved treatment has not led to improved survival rates. However, better diagnostic testing such as digital imaging, along with increased physician awareness, is resultng in earlier detection of smaller, more treatable ocular tumors, which may change the mortality rates.

4. Cellular Research: The molecular and cytogenetic properties of ocular melanoma are better understood which is allowing more doctors to honestly and compassionately counsel at-risk patients about their future care.

5. Patient Awareness: Younger patients (the average incidence is 60-years old) have come of age during the patient rights movement (access to medical records, second opinions and support groups). More importantly, because of the Internet, all patients can share their experiences through free services such as Google’s Blogger and the social networking sites of Yahoo!, MySpace, Facebook, and Friendster, among others.

This factor is the vital link to the final and most important change, which is:

6. Patient Advocacy: When patients start collaborating in managing their disease, real change happens. This kind of grass-roots activism has been successful in breast and prostate cancer as well as AIDS. The See A Cure Foundation, a patient-based nonprofit, is the inevitable result of all these progressive changes.

It’s your sight.

It’s your life.

Together, we can see a cure.™

A Fishy Situation

2008-04-26T12:03:00.040-04:00

Traditionally, traditional doctors are suspicious of untraditional medicine.

But Dr. Johanna Seddon, my post-treatment retinal specialist, is the happy exception to this dogma.

On my first visit, Dr. Seddon asked what medications I was taking.

“Nothing besides an occasional Motrin,” I replied.
“Any supplements or vitamins?” she asked.
“Well,” I said, “I take three tablets of 1200 mgs of fish oil every day.”
“Really,” she said. “And why is that?”

Her tone was not at all unfriendly, but my guard went up. Here we go, I thought, another doctor who thinks nutritional medicine is an oxymoron.

“For eye health,” I answered. “My primary care physician said fish oil may reduce the inflammation associated with my radiation retinopathy."

Radiation retinopathy is a devastating side-effect of plaque radiation therapy (also called episcleral plaque therapy or brachytherapy) for eye cancer - also called choroidal melanoma, uveal melanoma, intraocular melanoma, eye melanoma and ocular melanoma - in which blood vessels damaged by the radiation leak fluid and cause swelling which can lead to severe vision loss.

“Besides,” I continued, now a little defensively, “she said it wouldn’t hurt and it just may help.”
“And how long have you been taking fish oil?” asked Dr. Seddon, as she continued jotting notes in my chart.
“Let’s see, since right after my treatment 2 ½ years ago,” I answered.

Dr. Seddon stopped writing and looked directly at me.

“In studies on macular degneration, we’re seeing reduced risks in patients who are taking less than half that omega-3 dose each day. "

Macular degeneration is an eye disease that, while the causes may be different, such as age and diet, vision loss is the same as in radiation retinopathy which usually develops in patients treated for posterior eye cancer. And although no studies have been done for omega-3 on radiation retinopathy, fish oil could hold potential for those patients.

"It's fine to continue with your supplement,” she said and returned to my chart.

I was delighted. One of the reasons I had picked Dr. Seddon was for her expertise in retinal and macular issues, which were going to be my biggest post-treatment concerns. That much I already knew about her. The surprise bonus was also finding out that she is a vocal research advocate of non-invasive, affordable and accessible eye health through available nutritional means.

And there’s nothing fishy about that.

It’s your sight.

It’s your life.

Together, we can see a cure.™

An Eye on Jules Stein

2008-04-24T22:31:00.022-04:00

With so little mainstream information available on eye cancer (also called choroidal melanoma, uveal melanoma, intraocular melanoma, eye melanoma and ocular melanoma), when I do find an obscure mention that is even tangentially related to this cancer, I get excited.

For example, I am reading the book, Falling Leaves, by Adeline Yen Mah, whose journey takes her from her native Shanghai - as the neglected and abused daughter of an affluent Chinese family - to America, and a life as a successful doctor and author.

And there on page 173 is this: “On their arrival, Byron and I took Roger to meet them at the airport. Niang insisted on staying in Universal City, fifty miles from our home, at a hotel owned by their rich American friends, the Jules Stein.”

You may be thinking, “OK, calm down. Where’s the eye cancer in all that?”

Well, ophthalmologist Dr. Jules Stein and his wife, Doris, founded the Jules Stein Eye Institute at UCLA in the 1960s. One of their founding directors, Dr. Bradley R. Straatsma, made his clinical interest in ocular oncology part of JSEI’s focus.

In the mid-1980s, Dr. Straatsma helped to organize the NIH-NEI Collaborative Ocular Melanoma Study (COMS), a groundbreaking, randomized clinical trial that proved that plaque radiation therapy was as effective as enucleation in the treatment of primary choroidal melanoma.

Today, Tara A. McCannel continues Straatsma’s mission at JSEI. Her work on monosomy 3 has helped to enlarge our understanding of the molecular and cytogenetic properties of ocular melanoma. And her patient handbook, Ocular Melanoma: Diagnosis and Treatment, which she co-authored with Dr. Straatsma, is a patient-centered eye cancer guide.

Before my July 2005 diagnosis, that minor mention on page 173 in Falling Leaves would have meant nothing to me. But today, threee years later, nothing that even hints at an eye cancer association escapes my notice.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Ocular Melanoma Video - Dr. Carol Shields

2008-01-13T16:48:00.002-05:00

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 melanomas 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

2008-01-12T13:07:00.002-05:00

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.™

Finding Eye Cancer

2007-08-26T12:47:00.003-04:00

The irony of fictional writing is that it works best when it comes from a real place. According to author Richard Paul Evans, the background story of his novel "Finding Noel," is drawn from the real-life story of Celeste Edmunds, a woman with whom he used to work.

As with his previous books, this is a personal work for Evans; he uses family names, origins, religion, illness and little slice-of-life things like recipes, traditions and tips to give a homey feel to his characters and story.

"Finding Noel" is also the first book of fiction that features a character diagnosed with eye cancer. Through the character Joette, Evans exposes millions of readers to this rare disease - only 2,000 adults are diagnosed each year - in a way that mainstream media and the inaccessible medical literature have not. For that alone, Evans and his fictional work are the real deal.

Bottom Line: Do you have an Amazon.com account? If so, by voting for this review, you help focus attention on adult eye cancer - also known as choroidal melanoma, uveal melanoma, eye melanoma, eye cancer, intraocular melanoma, ocular melanoma and ciliary body melanoma).

It’s your sight.

It’s your life.

Together, we can see a cure.™

Eye of the Beholder

2007-08-23T15:39:00.004-04:00

(click on photo to view larger image)

Many cancers offer warning signs that you can either see (an ABCD mole) or feel (a breast lump). Even retinoblastoma, a childhood eye cancer, presents itself with the unmistakable "cat's-eye" look. When a light, such as a camera flash hits the child’s retina, it reflects back the white-colored tumor instead of the healthy, blood-rich retina that gives people that “red-eye” effect.

In contrast, adult eye cancer, (also known as choroidal melanoma, eye melanoma, uveal melanoma, intraocular melanoma, ocular melanoma and ciliary body melanoma), is a stealthy disease that, in its earliest and most treatable stage, is rarely seen by either the patient during their daily routine or by a physician during general screening.

The photo above is orientated as if I am sitting across from you and you are looking into my eyes. This image was obtained through a test called a fluorescein angiogram which uses a special dye to highlight the circulation patterns in the back of the eye. The bright, speckled mess in my right eye is characteristic of choroidal melanoma, and indicates that the abnormal blood vessels are leaking the dye. The left eye is healthy.

I went to the ophthalmologist because I felt my prescription reading glasses needed to be updated. Instead, he found a tumor creeping up under the macula, which is responsible for the central vision and fine acuity tasks such as reading (you can see it touching the macular edge). For people whose tumors do not invade “seeing” structures such as the macula and optic nerve, growth can often become quite invasive before being noticed.

Fortunately, health-care ninny that I am, I did “see” and quickly act on my visual defect which resulted in prompt diagnosis and treatment and probably saved the eyesight in my right eye. The picture below shows the blackened, dead areas of the tumor and patchy, white area of surrounding radiation damage.

(click on photo to view larger image)

Bottom line: The eyes may be the “window to the soul” but they are also a vital window to your health and well-being. Get regular, dilated eye exams by an ophthalmologist.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Insurgent Cells

2007-04-30T16:47:00.003-04:00

(click on comic to view larger image)

“They might see with their eyes, hear with their ears,

understand with their hearts and in turn, I would heal them.”

As the deteriorating situation in Iraq illustrates, actions taken that are blind, deaf and dumb to potential dangers can metastasize into far greater and uncontrollable evils.

In eye cancer, the threat is this: of the primary disease becoming a secondary one of metastatic eye cancer to the liver or lungs.

The current standard of care in eye cancer is treatment to the local tumor area only by plaque radiation therapy, proton beam, resection of the tumor or removal of the eye. Systemic treatments for eye cancer, such as chemotherapy, radiation, biologic or immunotherapy (Interferon, interleukins and CSF’s) and hormone therapy haven’t proven effective against preventing metastatic disease.

As a result, eye cancer patients have approximately 30-50% chance of metastatic progression. Of those who do, that disease is 100% fatal. But while death from metastatic disease is inevitable, it is no longer imminent. Early detection can be the difference between treatment offering 3-6 months versus 3-6 or more years of life. And that’s a life and future-altering reality.

Early detection includes regular 6-month MRIs scans of the liver and abdomen – where the majority of metastatic eye cancer develops. Yet, too many patients and their doctors are deaf and dumb to the threat of metastatic disease, following up with only yearly blood work (LFTs - liver function tests) and yearly chest x-rays.

Ignorance is not a valid defense – especially in this Information Age. When doctors are mute to and patients ignore the challenges of this disease, it’s little wonder that the public turns a blind eye to our cancer, as well. These triplets of evil create negative instead of healing space.

Bottom line: Out of sight may be out of mind, but it doesn’t mean out of danger. Keep your eye on a healthy future with 6-month abdominal MRIs.

What you can do right now: Get your eye doctor, oncologist or primary care physician to order MRI abdominal screening. Always verify coverage through your insurance, first.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Blind Alleys

2007-04-30T16:29:00.001-04:00

(click on comic to view larger image)

“I cannot tell how the truth may be;
I say the tale as 'twas said to me.”

Old wives’ tales, urban legends and myths all have this truth at their core: that they are usually false.

One old wives’ tale claims that eating carrots will give you stronger eyes. Actually, carrots - and any other vegetable high in vitamin A - will maintain healthy eyesight, but won’t improve your vision.

Snopes.com has built an entire business debunking urban legends including an Associated Press story that college kids tripping on LSD stared at the sun until they went blind.

Then there’s the famous, age-old myth that masturbation leads to blindness.

All three of these channels of communication share the characteristic of having little to no supporting evidence for their claims. They are reliable sources of unreliable – but believable - information.

Even in eye cancer, the challenge of trying to tell the difference between what’s reliable and what’s believable, is shared by doctors, patients and the public. Study after study has failed to prove a connection between eye cancer and sun exposure. Research has disproved an urban legend that cell phones and computers cause eye cancer. Yet, these "facts" continue to be cited by usually prudent, thoughtful people.

Claims like these, which reward compliance through fear and ignorance and blame the victim, are dangerous because they cloud the fact that the real myth of all is the one we should be most concerned with: the myth of a cure.

Bottom line: Make-believe has no place in the real world of eye cancer.

What you can do right now: We need to challenge the eye cancer myths and refocus our efforts and attention on finding a cure for eye cancer.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Dying to be Seen

2007-04-30T16:22:00.003-04:00

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“If you’re not outraged, you’re not paying attention.”

For the past month, I have been in mourning. Grieving for the lives lost - such as Princeton Mayor Barbara Boggs Sigmund, marathoner Lil Trimboli, news anchor Bob Knowles, photographer Leah Kennedy, classical music radio host Mark Sheldon and so many others - to an eye cancer called choroidal melanoma.

I have spent time with these dead, learning the stories of their lives – both humble and profound – and also the stories of their brutal deaths: metastasized ocular melanoma that as one memorial said,

“…went right through him.”

This started as a project to find the living to add to a “Real Stories” blog of survivors. But when I typed in search terms such as “choroidal melanoma survivors” or “eye cancer stories” the names from obituaries across the country instead filled my screen.

In finding all these people ranging in age from 13 to 87-years old, I found something else – my outrage.

Outrage that eye cancer makes more news off of death than it does off of life.

Outrage that there is not one patient advocacy group for eye cancer like there is for breast cancer, AIDS and testicular cancer.

Outrage that even in their death, those souls who went before us are still doing the work of the living.

We have to be vocal and visible if we want to “see a cure.”

Bottom line: The living shouldn’t let the dead do all the talking.

What you can do right now: Close your eyes and bow your head for a moment of silent reflection for those brothers and sisters who have gone before us. Then open your eyes and start talking about eye cancer, dammit!

It’s your sight.

It’s your life.

Together, we can see a cure.™

Digital Divide

2007-04-30T12:02:00.002-04:00

(click on comic to view larger image)

Odds are you own a digital camera, phone, and television. Maybe you have had a digital mammogram, a 3-D virtual colonoscopy, or a MRI/CAT scan. The Harry Potter books were printed using digital technology. Even Fido, the family pet, can get digital imaging of their injuries.

So why are some ophthalmology centers still using conventional, film-based tests to diagnose eye cancer and other serious eye diseases? Does your doctor do digital?

Dr. Thomas Hessburg, suspected eye cancer during my office visit in June 2005, and had a technician perform a fluorescein angiogram, a test that photographs the interior structures of the eye, using a film-based camera system in his office.

The snapshots took 20 minutes, but, it took a whole week for the film to be developed, processed and for Dr. Hessburg to phone me with the results. I was indignant at the delay and hotly criticized his “old-fashioned” services. Dr. Hessburg wrote me that “…it is incorrect that film-based fluorescein angiograms are obsolete. Digital fluorescein angiograms have one advantage that they are more convenient.”

Confirming a cancer diagnosis in one day versus one week, is more than just “convenient,” it is now the face of modern medicine. In the same time it took Dr. Hessburg to produce an 8x10 negative, I went to New York for a second opinion; received several digital imaging tests that defined the tumor’s location and dimensions, viewed the results on huge computer screens; had a PET scan, blood work, and digital chest X-ray; consulted with plaque radiologist Dr. Lawrence Tena, and was scheduled for surgery.

When I spoke with Henry Ford patient representative Debbie Ellison, she said Dr. Hessburg was simply following the standard of care available in Henry Ford Eye Care Services of Detroit, which was simply following the standard of care available at other medical centers. In March 2006 she said that “…it is my understanding that the use of film-based technology is still wide spread (sic) ….The University of Wisconsin which is a major reading center…still requires film based (sic) technology.”

Actually, says Nadyne Varela, the general manager of the radiology department, who spoke with me by phone from her offices at the University of Wisconsin, “We’ve converted 100% to digital computerized radiology. We’re very pleased with the transition.”

Varela’s highest praise is saved for the benefits to the patient. “The whole exam is faster and more efficient. Patients can review the images with their doctor the same day.”

Health care that focuses on patient care. That’s medical care that never goes out of style.

Bottom line: If your doctor is using 20th-century technology in the 21st century, it may be time for a new doctor.

Update: Henry Ford Eye Care Services of Detroit began to upgrade to digital imaging in May 2006. Dr. Hessburg continues to use film-based imaging in his suburban practice.

What you can do right now: E-mail or send your doctor success and horror stories. Tell me whether your doctor uses digital or conventional film-based technology for your eye tests and how long does it take for you to receive your results? Include your real name, phone or e-mail.

It’s your sight.

It’s your life.

Together, we can see a cure.™

No Opinion

2007-04-30T12:00:00.001-04:00

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In 1989, my youngest sister was diagnosed with an osteosarcoma on her right tibia, otherwise known as the shin bone. The doctor gave her three options: amputation, a cadaver bone allograft or die. She was a 19-year old college sophomore.

She made a fourth choice - one that doctor failed to mention: she got a second opinion.

That was 18 years ago this week. Today, she works for a major pharmaceutical company that is developing leading-edge cancer drugs, among other life-changing treatments.

Like my sister, I got a second opinion with an ocular oncologist after I was initially diagnosed with eye cancer by an office-based ophthalmologist.

We share another important characteristic: we were both diagnosed with cancers that are seen in approximately 2,000 people each year in the United States. That’s less than 1% each of all cancers diagnosed a year.

But getting a second opinion for an eye cancer diagnosis and treatment assumes you can even get a qualified first opinion. Only 24 states participated in the Collaborative Ocular Melanoma Study (COMS), a ten-year, multi-center clinical trial. Of the 40-plus doctors on that list, only 12 specialize in adult eye cancer.

No ocular oncologists are listed in the 29 other states and territories of Alabama, Alaska, Arkansas, (Washington, D.C.), Connecticut, Delaware, Hawaii, Idaho, Kansas, Kentucky, Maine, Mississippi, Montana, Nebraska, New Jersey, Nevada, New Hampshire, New Mexico, North Dakota, (Puerto Rico), Rhode Island, South Carolina, South Dakota, Tennessee, Utah, Vermont, Virgin Islands, West Virginia or Wyoming.

Sadly, first and second opinions are not easy to obtain when eye cancer specialists are nonexistent in over half of the United States.

But when it is available, and when you have the means and the opportunity to do so, second opinions should always be part of your medical plan.

Bottom line: Your first choice of treatment should be a second opinion.

Update: According to an article in the Wall Street Journal in February 2005, “a 2001 study at Wills Eye Hospital in Philadelphia of second opinions for eye disorders found the prognosis and treatment changed in 15% of cases and found surgery unnecessary in 30%.”

What you can do right now: E-mail or send me your story about when, where and who treated you. Please include your real name, phone or e-mail.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Eye Candy

2007-04-30T11:57:00.002-04:00

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Health professionals recommend visualization exercises as a way for people to manage their well being. Cancer patients are taught to visualize their tumor shrinking or being attacked by the immune system.

My visualization therapy goes something like this: I imagine myself eating a big bowl of Ben & Jerry’s Chocolate Chip Cookie Dough Ice Cream. Or I imagine the sensation of blowing a huge pink Bazooka Bubblegum bubble.

Since June 29, 2005, visualizing sugar is about as close as I’ve gotten to the stuff. Using my imagination to “eat” sugar versus actually eating it has become the most important weapon in my anti-cancer arsenal.

On that Wednesday, I had a pre-surgery PET (positron emission tomography) scan at St. Vincent's Hospital in New York City. A PET scan is a nuclear imaging device that generates a three-dimensional picture of the body. That’s the cool part.

The PET is also incredibly effective at finding cancer. That’s the scary part.

Radioactive tracer isotopes are introduced into your body through a vein in your arm. The tracers are attached to glucose molecules, which is a fancy way of saying sugar. These sugar molecules race to the site of metabolically active cancer cells (which have high energy needs) which gobble up the sugar molecules, along with the embedded radioactive isotopes, which in turn “light up” the PET scan. That’s the terrifying part.

My scan was clean, even in the area where the eye cancer was lurking, which suggests that it was a slow-growing tumor. But after the technician, Michael, explained how and why the test worked, I went cold turkey on refined sugar.

Sugar runs in the Gilbert-family veins. My brother owns a German candy import business. My favorite holiday is Halloween. But as those sugar-laced radioactive isotopes raced around my body just looking for trouble, I decided that giving up refined sugar was a lifestyle change I could live with.

Bottom line: Sugar may be feeding more than just your sweet tooth.

Update: One year later, the cravings have subsided. I found it easy to give up my favorite things like Bazooka Bubblegum, ice cream and Dr. Pepper. I had to fight the temptation of cookies and sugared snacks. But over time, it got easier.

What you can do right now: E-mail or send me your success and horror stories about the lifestyle changes you made following your eye cancer diagnosis. Include your real name, phone or e-mail.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Seeing the Blues

2007-04-30T11:51:00.002-04:00

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Location, location, location.

The cliché typically applies to real estate, but it also applies to your health insurance coverage. The location of your insurance company – not your doctor - will determine the maximum amount they approve for your eye cancer surgery and treatment.

For instance, the maximum amount approved by my former insurance company, Blue Cross Blue Shield of Michigan (BCBSMI), a PPO plan, for my eye and life-saving eye cancer surgeries, including the follow-up care, was $1,744.29 for:

• eye surgery, under full anesthesia, to cut muscles to access the back of my right eye, peel back the conjunctiva in order to stitch in place the plaque containing 13 radioactive seeds over the tumor area on the sclera.
• the post-surgery follow-up
• surgery one week later to remove the plaque and restitch the eye muscle properly (to prevent pain, double vision and crossed eyes).
• post-surgery follow-up
• one-week follow-up
• one-month follow-up

Would you let a doctor do the medical procedures detailed above if you knew s/he was paid the maximum amount approved of only $1,700?

I turned to Dr. Finger of the New York Eye Cancer Center. He is one of only 12 ophthalmologists in the country who focus their practice on ocular tumors and ophthalmic radiation therapy. He does not participate with any insurance company and therefore does not need to follow their maximum approved amounts.

I took out a $10,000 loan to pay for my eye cancer surgery. Dr. Finger’s fee was worth every penny as I firmly believe you get what you pay for – a maxim that BCBSMI turns into ‘you get what we won’t pay for.’ Except for the pain of carrying my loan, I had absolutely no surgical complications.

In comparison, the maximum approved amount for my Mom’s non life-threatening cataract surgery was almost $2,500.

Bottom line: If you live in Michigan, pray you get cataracts and not eye cancer.

Update: On March 29, 2006, I lost my appeal with the MI Office of Financial and Insurance Services. Commissioner Linda A. Watters ruled that without regulatory oversight, BCBSMI could set its own maximum approved rate of $1,774.29 for eye cancer surgery - only $27.34 above MI Medicaid rates.

What you can do right now: E-mail or send me your insurance success and horror stories. I’m interested in your EOBs (black out your contract number) with the maximum approved amount for your eye cancer surgery. Include your real name, phone or e-mail.

It’s your sight.

It’s your life.

Together, we can see a cure.™

"I" Cancer

2007-04-30T11:48:00.001-04:00

(click on comic to view larger image)

Lance Armstrong is the face of testicular cancer.
Race for the Cure is the face of breast cancer.
Gilda Radner was, and still is, the face of ovarian cancer.
So, quick, can you name the face of eye cancer?

The challenge facing the 2,000 adults in the U.S. diagnosed with eye cancer each year is to put a face on their disease – their own.

Adult eye cancer is a rare and rarely-mentioned disease that is competing against 110 other human cancers for funding, research, and public attention. The most effective tool we have for raising public awareness is to tell people who we are and what we have.

My name is Melanie Gilbert and I had eye cancer. In 2005, when I was diagnosed, there were at least 1,999 more adults out there just like me. There are thousands more who have already been treated for eye cancer and every year, more will join our ranks.

So, who are you? Will you tell your story?

Talking about your eye cancer will help you and it will help others like you.

It’s your sight.

It’s your life.

Together, we can see a cure.™

Welcome

2007-04-30T10:58:00.000-04:00

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.

My name is Melanie Gilbert and I was diagnosed with eye cancer in June 2005. The purpose of this site is to raise awareness about a rare and rarely-mentioned disease called eye cancer that impacts just over 2,000 people in the U.S. each year.

Read my blog, 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.™