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.

[It looks like you have] some complex "stuff" to deal with. Not your melanoma, necessarily, but definitely the family situation!

I'm the daughter of a pediatrician, and that was helpful when my kids were little - I checked every little thing with my father and generally found a way to make sure he was satisfied with our decisions regarding his granddaughters' medical care. He was just one of several medical people in our lives. When my husband got a (Stage 4 metastatic) melanoma diagnosis in 2012 I turned to my cousin-in-law all on the opposite coast  because she's a pediatric dermatologist. She put me directly in touch with the head of the melanoma program at our hospital, who trained in her department several years ago and whom she knew very well. She did not try to give us advice, other than to see to it that we were consulting with someone who understood melanoma at the highest level possible. And, most important, she assured us that she would help us understand anything our chosen melanoma specialist said.

Long story short - the initial staging from the pathology report is not what we now understand. We have been dealing with Stage IIB melanoma. Getting the communication channels open with the RIGHT people has been critical to our mental health, particularly in those early weeks.

Your feeling that all the statistics mean nothing may not go away – and I recommend that you fight for that mental state. It's hard to ignore a brother who is much more knowledgeable about the subject than you are, but perhaps you can "gently" ask him to only give you constructive information. Also, he might be the conduit for information passing from your melanoma specialist to everyone else in your family – that could be quite useful. But I really hope you can find a melanoma specialist you connect with, one who gives you all the time you need to understand what's going on and where that fits into the limits of current knowledge about melanoma.

It’s great that your dad got your birth mark removed and then got you the wide local excision so quickly. You now have the initial pieces of information to understand what you are dealing with. Considering the rest of what you wrote and what's on your profile page (Stage III, primary depth 2mm-4mm), you can take the time now to decide what's next. 

A melanoma specialist can help you weigh the recent research report [referred to by another MPIP member in a previous reply] and help you decide whether a complete lymph node dissection is the right thing for you. Your instinct that this is a drastic step was correct. Follow that instinct and give yourself time to decide whether your case warrants taking that step – with a specialist at a Melanoma Center of Excellence whom you trust leading your team.

You have much to learn. Don't rush this surgery just because you (and your medical doctor family members) are scared.

Please come back and let us know how things are going and how we can help you get through whatever you decide to do next.