NED! So, what’s the big worry?

As more people in our wider circle of friends find out about Robert’s melanoma, I’m getting questions about the disease that our inner circle (family and closest friends) didn’t need to ask. That’s because we told them from the beginning that Robert’s diagnosis in the first pathology report was metastatic melanoma. Since we know now that as of June 18 his status was “no evidence of disease” (NED), a factor some newcomers know when they first learn of his illness, I am frequently encountering this reaction: “That’s really good, right? So he can just go on with his life and it’s not likely to come back?”

I can’t find fault with anyone whose initial reaction is just that. Most melanoma patients (about 70%) have superficial spreading cutaneous melanoma, and the long-term prognosis for that type is very good if caught before it has a chance to spread beyond its primary site. Five- and 10-year survival rates are sometimes cited as high as 100% for “melanoma in situ.” Although many people know that the prevalence of skin cancer has been growing at an alarming rate, many also understand that skin cancer is most often curable. As one patient put it, “I thought ... they would cut it out and that would be the end of it.”

Cancer prognosis is often discussed in relation to the stage of the disease, and as our family and close friends know, Robert’s case has been difficult to stage. At one point we understood the doctors at Washington Hospital Center to say that they were treating his case as melanoma in situ because there was no evidence of spread – the sentinel node biopsies and PET/CT scans showed no evidence of disease. That’s where you see the 100% survival rates. But that’s not the end of our story.

In staging melanoma to come up with treatment options and prognosis, melanoma experts also consider two measures of invasion into the immediate area – one called a “Clark level” and the other known as “Breslow thickness.” The Clark level measures the level of the skin that the melanoma has invaded – how deep did it go? The Breslow thickness is measured from the top of the tumor to its lowest point. Under the most recent cancer staging guidelines, the Clark level is only considered when staging tumors up to 1 mm thick. Generally, the thickness is a more accurate measure to consider when trying to come up with a prognosis for bigger tumors.

Because the lesion removed by the dermatologist in April was thought to be a sebaceous cyst, the skin was not removed at that time, making the depth and thickness difficult to measure. The original pathology report had no measurements – in fact, it included almost no information, other than the dreaded diagnosis of metastatic melanoma, and one of our doctors called it “pathetic.” After the tissues were sent to the dermatopathology lab at Boston University, we got our first indication of how thick the lesion was – 9.5mm. The recent report from Stanford University added one more piece of information – the tumor was centered in the “mid reticular dermis,” and the Clark level is IV or V.

Among the questions we will ask tomorrow is one about the depth. With a tumor this thick it’s not surprising that it was in the deepest level, the reticular dermis. My question is, how much of the thickness was on the outside? The cyst itself was raised, perhaps 1/8 to 1/4 inch, and then there was a dome extending upward from part of it. If that is the section they measured, it’s possible that most of the 9.5mm were on the outside.

More from the Stanford report

The Stanford report did not have the diagnosis I was hoping for – primary dermal melanoma. The dermatopathologists there believe their immunohistochemistry rules out PDM. Instead, they favor a diagnosis of primary nodular melanoma with regression. Nodular melanoma is not the best possible diagnosis – it is the most aggressive type of melanoma.

There is much more detail in the Stanford report, including lots that my superficial research doesn’t help me understand. We’ll ask Dr. Schuchter (at University of Pennsylvania) about them tomorrow, and when I can provide a reasonable explanation, I’ll write about anything important.

Meanwhile, we’re sticking with the most important positive factor: NED! The sentinel node biopsies and PET/CT scan done in June found no evidence of cancer. Patients with nodular melanoma who have no lymph node involvement have a much better prognosis than those whose cancer has spread. It’s not the 100% you hear about, but we’ll take what we can get!