Patient Profiles

Danet didn’t let fear of the unknown define her uveal melanoma journey.

A Life Changing Prognosis of Uveal Melanoma: Kevin’s Story

Mary F. – Marking “Cancerversaries”

Since her diagnosis with uveal melanoma in September 2013, life looks very different for Mary Judy French. As a former OR nurse, Mary, who goes by “Frenchie,” spent years selflessly caring for sick patients. Today, she’s traded in her alarm clock for four barking dogs, waking her promptly at 6:00 a.m. for their breakfast.

“My life is so different now,” said Frenchie, who had to quit her job because the treatment of her eye cancer—brachytherapy with radiation–drastically altered her vision. “I’m doing things I love like spending time with my husband, who has been my ‘rock,’ and my dogs.”

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Frenchie kicks back at home with her dogs

She recalls the life-changing phone call from her doctor. “When he told me I had uveal melanoma, I was shocked.” When later discussing treatment options, her doctor also recommended gene testing to determine the odds the cancer might spread in the future, which to Frenchie, was a no-brainer.

Optimistic for the best outcome, the results of the DecisionDx®-UM test hit Mary hard, revealing that her tumor was the aggressive type—a Class 2, with a 72% percent chance of spreading to distant organs within 5 years.

But eventually, knowing her prognosis became a source of empowerment. “I am determined to beat this. I truly believe this saved my life. Knowing that I’m a Class 2 has drastically changed my treatment.” Because of her Class 2 status, Frenchie has an intense monitoring plan; she sees an ophthalmologist and an oncologist on a rotating schedule every three months. She also receives regular CT scans, ultrasounds, and liver panels. So far, her lab work has been normal, and ultrasounds and CTs negative.

And she’s marking these wins in a way people might not expect: “Every time I hit a milestone, like remission, I get a tattoo,” said Frenchie. “Yes, I am 60 years old and doing all the things I was prohibited from doing because of my profession and I really don’t care what people think. For me it has been part of the acceptance process, and if [my example] helps just one person I will be thrilled.”

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“Genotyping is a great and important thing. I’ve lost some friends to melanoma that came back 15 to 20 years after their diagnosis. I am so grateful I was seeing a doctor smart enough and experienced enough to advocate [for] this test.”

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Frenchie celebrates a remission milestone with a tattoo dedicated to her beloved dogs

More energized than ever, Frenchie is still helping others by volunteering with children with special needs, who have become good friends. Another new friend she’s met along her journey is a 9-year brain cancer survivor who helped her finally understand “that unless you got it, you really don’t get it.”

When asked what’s ahead for her, Mary chuckles in the playful way you’d expect from someone with her tenacity: “I have my 5-year survival tattoo all planned out, I know exactly what I’m going to get…”

Mary D. – Taking Matters Into Her Own Hands

Mary sat in disbelief. How could that small dot in her eye, the one her doctor had called a “freckle” just twelve years ago, now be a malignant tumor? Uveal melanoma?

Mary’s doctor said radiation was the best treatment option in her case. He explained he’d like to perform a test to assess the likelihood for metastasis—that is, that her tumor had already spread. It required a fine needle aspirate biopsy, a quick procedure in which he’d remove a tiny sample of her tumor with a very thin needle before sending it to a lab for processing.

“I remember my dad was scared for me to have the surgery and especially the biopsy. He has eye problems too and thought it might actually cause the cancer to spread.”

"I made a decision that this was my cancer. And I wanted to know my risk."

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Mary and her daughter relax at home

In fact, thousands of biopsy procedures are performed safely every year in many cancers, including uveal melanoma. After talking it over with her doctor, Mary decided to go forward with the test despite her family’s misgivings.

“I made a decision that this was my cancer. And I wanted to know my risk.”

Shortly after, Mary scheduled her biopsy and surgery. As a neonatal nurse practitioner and single mother of a twelve-year-old autistic child, she is used to the role of caregiver. But eye cancer temporarily changed that.

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“I made a decision that this was my cancer and I wanted to know my risk.”

“My boyfriend and dad were right there when I came out of surgery.
My parents live in Alabama, and I stayed with them while I was recovering. And my boyfriend—he has been so supportive throughout all of this.”

Much to her relief, Mary’s tumor was Class 1A meaning there is only a 2% chance that the cancer will spread within the next five years. “I’ve had to come to terms with the fact that I had cancer, but I’m so grateful for a good prognosis. I’m so glad I know.”

Mary now requires some level of monitoring because of cysts in her liver, but she is back to work and enjoying life. “My job taking care of these tiny babies is very rewarding. I’m exactly where I need to be.”

Peter L. – The Test of Time

It was just two days before the radiation treatment of his uveal melanoma, or eye cancer. Peter L. boarded a plane determined to have his tumor biopsied and tested by Dr. J. William Harbour, the ocular oncologist who developed a genomic test that could lay out his odds of survival. “For me, as a patient this counts big time…it sits in one’s mind all the time if you don’t know."

And Peter almost didn’t know. Dissatisfied that he wasn’t given information about treatment options or prognostic tests when he was diagnosed, Peter dug further for information online. He quickly learned about Dr. Harbour and his gene expression profile test, and that it had to be done before the radiation, since it can alter the tissue and render any results meaningless.

“Work, dreams, relationships, access to experimental treatment, and prioritizing my bucket list… for me, they all depended on that test result, so the stakes were high.”

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Peter L. wasn’t given the information, and almost missed his chance to be tested.

Just two days before the procedure, Peter flew halfway across the country to see Dr. Harbour and have a biopsy. “Even if it was worst case scenario,” he says, “I wanted to know so I could get my life in order.”
For Peter, 56, this was a very difficult time. His business selling antique magazines and newspapers required constant reading to identify condition and content of the material for his clients. He had already been dealing with loss of vision in his left eye when he learned of the midsize tumor in his right eye—leaving only 25% of his vision intact.

Four weeks later the test results were in. Peter’s tumor was Class 1B, which meant his cancer had about a 21% chance of spreading. Knowing his Class helped Peter and his hematology oncologist plan an appropriate monitoring schedule to detect any metastasis as early as possible with the hope that prompt treatment could possibly extend survival. As well, prognostic test results would be necessary for eligibility in any future clinical trials.

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“Work, dreams, relationships, access to experimental treatment, and prioritizing my bucket list… for me, they all depended on that test result, so the stakes were high.”

Today, Peter is a tireless advocate for patients with uveal melanoma to also become knowledgeable about their disease and get tested. He’s active in online chat rooms, forums, and social networking sites educating people about their options. Peter says he doesn’t want anyone to be “too late and live with the stress of uncertainty the rest of their life.”

Now that he is better able to predict his survival and especially because he needed to deal with his vision loss, Peter decided to liquidate his current business in New Hampshire and returned to his native Netherlands to be with his supportive family and friends–though he since relocated to Spain. Peter also finished up a course in molecular biology—again to arm himself further in his battle against cancer.

Jerry W. – A Second Chance for Jerry

He just knew he was going to die.  In September 2009, Jerry W, a retired GM employee, was diagnosed with uveal melanoma. His entire world collapsed.

“It’s a scary, world-stopping thing when you’re told you have eye cancer, and you need to do aggressive treatment to have more time. Pretty awful.”

With the support of his loving wife Cindy, Jerry, 73, knew he had to go ahead with radiation treatment of the tumor. But there was one more thing to consider. Jerry’s doctor asked if he wanted a prognostic test that would spell out his odds of survival and the chances that the cancer would eventually metastasize. It required removing a tiny sample of his tumor with a slender needle minutes before the radiation. Jerry said yes.

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Jerry and Cindy at home in Muir, Michigan

While waiting for the results for the laboratory test to come back, said Cindy, “We began getting our ducks in a row. We started doing all the things we had been putting off. ”

Today, Jerry may not recall how big his tumor had been (“do you think I can remember that?”) but he’ll never forget his doctor’s words on that fateful Sunday morning when he got the call with his prognosis. “I have good news for you, Jerry. There’s a 98-99% chance your cancer will not spread.”

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"We were planning for the worst—until we learned my cancer wasn’t likely to spread."

Thanks to his test results, Jerry has been able to resume a worry-free retirement, enjoying his wife, children, grandchildren, and…yes, great grandchildren.

“We look at the whole thing as a blessing now,” said Cindy. “People rallied around. We found out we have a lot of faithful friends and church members and very caring people that came into our life who we knew were there but didn’t fully appreciate until Jerry’s diagnosis.”

“Even if the result had been negative, I’d have wanted to know…” Jerry explained, “…though I’m happy it’s a good one.”

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