melanoma

A clean check-up - and an update on advances in melanoma research

Even if 3 ½ years is not a milestone generally marked in cancer survival, we came away from our visit with Dr. Evan Lipson at Johns Hopkins University Hospital yesterday with smiles and relief on two fronts. Not only does Robert continue to show no evidence of disease after his primary melanoma was removed in June 2012, but the report we heard on progress in melanoma research since his diagnosis is exciting and encouraging.

Still N.E.D. - and an update on melanoma research

Our annual trips to Johns Hopkins for Robert’s participation in a follow-up study after his melanoma vaccine trial have become fairly routine. Leave about 7 a.m., check in by 8:30, CT scan and brain MRI, go see the blood-sucker, fit in lunch somewhere along the way, and then see Dr. Lipson early in the afternoon. Today we were home about 2:30. Easy up, easy back, and no news is good news. No evidence of disease.

Two years NED!!

Results from Robert's scans on Monday are in, and they show no evidence of disease!!! Such good news as we approach the two-year mark after surgery that took the remaining detectable melanoma out of his body.

Surprisingly, I had only a little scanxiety this time around. There are several possible explanations for this change.

A wrinkle about scan times

A common theme on melanoma discussion forums is frustration with the length of time between scans when when patients are on the “watch and wait” regimen after being told there is no evidence of disease. It’s been bugging me lately – probably because I needed to have something to stew about to ward off scanxiety as we approach Robert’s six-month scans in early June.

For caregivers adjusting to a 'new normal'

When we first found out about Robert’s melanoma, we did what we had to do just to survive. I couldn’t begin to walk back into that scene and tell you how I was feeling at the time, or analyze it and tell you how we learned to cope. But I have a few suggestions for caregivers of newly diagnosed melanoma patients, stemming from my experience during those first few months.

In the absence of knowledge

A case in Robert’s law practice has got me thinking about what happens in humans’ brains when we see or hear something without any context. One issue has to do with what government investigators thought they were hearing on a wiretap. I hope what I’m learning from thinking about this will apply not only to my life with an N.E.D. cancer survivor (one with No Evidence of Disease) but also to other circumstances of my, and my family’s, life.

Welcome, my old friend NED!

Maybe someday scanxiety will stop having such a hold on me. It persisted through the long time (almost a week) that it took for Hopkins to post the results of all the tests Robert had done last week. The reports I read last night confirmed what Dr. Lipson found at our visit last Tuesday – no evidence of disease. Whew!

Scanxiety – bigtime!

For a while it seemed as though I might escape the dreadful scanxiety this time. But as we approach Robert’s appointment at Johns Hopkins on Tuesday, it’s making up for lost time ... I’m sleeping poorly, awake during the night, waking up hard (not refreshed) in the morning after strange dreams.

Advice for the newly diagnosed with medical family members

This morning a newly diagnosed melanoma patient posted a query on the Melanoma Research Foundations’ Melanoma Patients Information Page seeking advice on how to deal with all the new information she was learning about melanoma – sentinel nodes, wide local excision, micrometastases, Stage 3, 5-year prognosis, complete lymph node dissection, lymphedema. Her story was full of information she got from her brother, an oncologist but not a melanoma specialist, and her father, an orthopedic surgeon.

Her statement that all the statistics meant nothing to her at this point prompted me to reply. I’m cross-posting my response to her here. If you follow MPIP you can skip the rest.

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