Thank you for ‘getting it’

A recent post on the Melanoma Research Foundation’s community list made me sad, mad, and – very thankful for you all. The writer, a newcomer to the community, was venting her frustration at her siblings’ lack of understanding that she is facing a very serious situation – newly diagnosed, recurring melanoma. She wrote: “It is so defeating to know that there will always be a 'next time' for surgery, and stitches, and co-pays. And there will always be another social expectation of a sunny beach get together.”

The understanding from our families and friends – the outpouring of concern, favors small and large, visits, cards, and phone calls – has been so important to us!

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.”

The 'big deal' about primary dermal melanoma

Before 2000, melanoma cases like Robert’s – those that didn’t show up on the outside of the skin – generally were considered to be metastatic melanomas of unknown primary origin. Now, melanoma specialists recognize a subtype they call “primary dermal melanoma” (PDM). There’s not much recent information available on  the web about PDM – here’s my synopsis of what’s there.


Good news from Dr. Convit today - we can plan to go on vacation! We need to go back to see him next week, and by then he should be ready to cut us loose. Now all we have to do is figure out where/when to go.

The skin graft is mostly healed now, and the stubborn patch is beginning to close up since we started putting silver sulfadiazine on it (instead of bacitracyn) last week. The graft donor site is healed and just needs to be softened with some skin lotion. As of today Robert is cleared to drive, and after one more week he can get back on his bike.


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