Robert said in his initial email to family and friends about his melanoma that it was a risk factor for his blood relatives. I’ve done a little studying on the subject, and my assessment of that statement (whatever THAT’s worth!) is a little different now. But the bottom line remains the same: please have a complete scan of your body, if you haven’t already, and discuss your risk factors with a dermatologist.

I decided to look into this when I found out recently that my grandmother (“Lovey,” to those of you who knew her) had ocular melanoma. I knew  that she had had one eye removed – who could forget Lovey’s glass eye?! – and I knew she had cancer in it. However, I had not heard it described as melanoma until I reviewed some of my family’s medical history with my mother a couple of weeks ago. That information raised a question for me: are my children at increased risk of contracting melanoma because they have family history on both sides?

Dr. Evan Lipson, Robert’s oncologist at Johns Hopkins, suggested that I contact researchers at the National Institutes of Health who are studying melanoma in families, so I wrote to Dr. Margaret Tucker, the National Cancer Institute’s principal investigator on familial melanoma. Research study nurse Ginny Pilcher responded by sending me the latest information on the study as well as links that would help me learn more. The research is being conducted by the NCI’s Division of Cancer Epidemiology and Genetics (DCEG). Dr. Tucker is head of the division’s Human Genetics Program.

By studying families with numerous incidences of melanoma, Dr. Tucker’s and her colleagues’ work through the years has helped identify several melanoma susceptibility genes. The researchers continue to look for other genes that are associated with melanoma, and new information has been reported within the last year based on their work. We know that Robert doesn’t have mutations of the BRAF or KIT genes that have been associated with melanoma. As far as I know his tissue hasn’t been examined for other melanoma susceptibility genes.

Even with all the recent research findings, however, I think they still don’t know enough about what causes melanoma to predict whether Allison, Loren, and Gabriel are really at increased risk just because of Robert’s illness. Their risk factors are probably no less than his – fair skin and/or lots of moles, plus a history of heavy sun exposure, can’t help them in this department. And, I’m not sure sun screens were any better when they were little than in Robert’s childhood – though they certainly can help themselves from now on by using SPF 30 sun screen EVERY DAY. (Yes, the latest research bears this out – it is not an unfounded advertisement for the sunscreen industry.) In retrospect, I’m not sure how much good Robert’s slathering with SPF 8 has done through the years. Today, we know more.

As for my “double-dose” question about Lovey’s eye: Dr. Lipson said researchers don’t yet know whether the genetic defect that leads to ocular melanoma is the same as defects that lead to cutaneous melanoma. In any case, he said his recommendations for their care – presumably the same for other family members of melanoma patients – would be the same: thorough skin exams by a dermatologist every six to 12 months. If insurance doesn’t want to cover it, I suggest going for pre-approval and appeal if they say no. In the long run, they should prefer pay for examinations twice a year rather than for treatment after diagnosis.

Nurse Ginny at the National Cancer Institute sent suggestions, based on the DCEG melanoma research program’s guidelines. For families in their study, she said, they recommend:

Perform a self-examination of your skin every month. If you note any changes in size, shape, color or borders, please notify your dermatologist. Do the skin exam in a well-lit room with a full-length mirror so you can look at both the front and back of your body. Hand-held mirrors may also be useful.  Helpful Hint: Look at your moles for Asymmetry, Borders, Color and Diameter, Evolving. You may find it helpful to write down the date of your skin self-exam, noting new moles and any changes in existing moles you have observed. Be sure to notify your health care provider as soon as possible if you discover changes or new moles that concern you.

For all individuals with a family history of melanoma, they recommend:

• Examining your skin every month. If you notice any changes in your moles, specifically, if any have enlarged, developed a black area, if any moles itch, crust or begin to bleed, or if you become more aware of a mole because it “feels different,” see your health care provider.
• Having a thorough skin examination by a health care provider every 6  to 12 months or more often if you notice changes.
• Having an excisional biopsy (not a shave biopsy) of any moles that are changing in a suspicious manner.
• Minimizing sun exposure to avoid sunburns, minimizing sun-tanning, avoiding tanning parlors, and using sunscreens with SPF 30 or greater liberally and frequently. Also, please consider the use of sun-protective clothing and sun-protective eyewear.

Since we have no knowledge of other melanomas in the family, I don’t know whether Robert’s siblings and cousins share his risk. Presumably, at least Sandy and Judy do – fair skin, red hair, lots of sailing as a kid. I know they will make their own decisions and do whatever’s right for themselves. I’m also sure they share my hope that we don’t get to the point of entering Dr. Tucker’s study.

To learn more, here are some links:

Unraveling Genetic Susceptibility to Melanoma
http://dceg.cancer.gov/newsletter/Linkage/0312_melanoma.shtml#fig1

The Genetics of Familial Melanoma: What Are We Learning?
http://dceg.cancer.gov/files/Familial_Melanoma_Study_Newsletter_Fall_2011_%2810_17%29.pdf

Photos showing the ABCDE factors of melanoma
http://www.skincancer.org/skin-cancer-information/melanoma#panel1-1