Stage 4 Metastiatic Melanoma found first in lung: What can I expect?

@silversurfer51 : Welcome to Mayo, both to Connect and to your upcoming appointment. I'm glad you found us here.

First of all, let me commend you on your smoking cessation of 15 years and for being so diligent about skin checks. In addition to the critical importance of applying - and reapplying - sunscreen daily esoecially in sunny climates that's one of the best steps to check for early signs of skin cancer - basal cell (BCC), squamous cell (SCC) or melanoma, the most aggressive form most frequently associated with malignancy.

Unfortunately, there are also cases where there is no known primary site that had formerly been detected on the skin when melanoma has been found in a distant site - such as the lymph nodes or distant organs, like the lung which has occurred in your case. Like you, I was found to have a lung nodule when a CT had been performed for another reason; unlike you, I had had a history of skin melanoma although it had been classified as unlikely to metastasize. So I know these results are suprising and very unnerving, to say the least.

To help you understand what you're in for, let me ask you some questions first if I may. You mentioned you live in FL so will you be having your appointment at Mayo in Jacksonville? Will you be meeting with an oncologist? Have you been able to set up your online patient portal at Mayo yet? The portal will allow you to have full access to your medical records, documetation of visits, lab tests and imaging as well as the ability to contact your providers with questions and for them to contact you. This information will help guide you as to how to do that and how to best prepare for your first visit: https://www.mayoclinic.org/patient-visitor-guide/how-to-make-the-most-of-your-appointment

This is an overall guide as to what to expect following a melanoma diagnosis in terms of diagnostic testing and possible treatment, and provides a link specifically to care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/melanoma/diagnosis-treatment/drc-20374888

If and when you're ready, there is also an online support group through Mayo, open to anyone who treating for metastatic melanoma. I have been participating in this forum since my own diagnosis going on 2 years ago and have found it very helpful. Here is some information on it: https://connect.mayoclinic.org/event/melanoma-support-group-meeting-2-8b4043b9/

Wishing you the best with your appointment next Wednesday. I'm anxious to hear how it goes. Can you fill me in here afterward to let me know?

Thank you, Susan. Definitely unsettling just 3 days in here. I'm sure you know the feelings we are going through. In answer to your questions... Yes, going to Mayo in Jacksonville. My wife and I were both born and raised there and now live down in Flagler County. My appointment on Wednesday is with Dr. Doonan (hematology/oncology). I also have an appointment at Advent Palm Coast with Dr. Sai (also hematology/oncology) on the 25th. I was originally referred to Dr. Sai by Dr. Alvaro Martin (Advent Daytona Pulmonologist) who did my biopsy a week ago. I originally called Mayo for two reasons; I wanted a second opinion, and I wanted an appointment sooner than the 25th. We'll see what path this takes but I would be happy for Mayo to run things in consult Advent so that maybe some treatments can be done in Flagler without driving to Jax. I also have an appointment with my Dermatologist tomorrow at the suggestion of Dr. Martin to bring her into the loop and get a good body scan. I will try to update you once I have my appointment Wednesday. I am open to any advice or comments as this is all brand new to me. Thank you for all the info you provided. I appreciate you for taking the time. By the way, I turn 75 in 8 days, and we have a short weeklong vacation planned to celebrate which we will cancel if the Dr. says we should. Oh... almost forgot. Yes, I am set up on the Mayo Clinic Patient Portal.

I see Dr Doonan for my eye melanoma which metastasized to several locations over the past year. Dr Doonan is excellent! He is very personable and open about what the situation is and treatment plans. He is the best! All the best for you

silversurfer51, sorry for your diagnosis.
You might ask for somatic testing (the genetics of the tumor) from the biopsy material already extracted.
https://www.foundationmedicine.com/solution/foundationone-cdx
genetic analyses have shown substantial differences in pathogenetic mutations among cutaneous, acral and mucosal melanomas

@gently , thanks

@silversurfer51: Happy birthday to you! I also have a milestone birthday coming up next week - my big birthday gift this year: a new hip! LOL.

I hope you get to go on your vacation and that you're pleased with your appointment with Dr. Doonan. I've heard only positive reports on him. I don't know if they can arrange treatment in conjunction with Advent; I've not heard of that type of arrangement but definitely something worth inquiring about. Great step in getting your portal set up.

There is a lot to consider when starting treatment for metastatic melanoma and obtaining a second opinion is a good way to start by exploring options; I'd done the same thing. You can also consult this guideline which may help, as put out by an organization I've found to be particularly helpful during my own journey: https://www.curemelanoma.org/patient-eng/ten-tips-for-people-just-diagnosed-with-melanoma/choosing-your-doctor

Am I correct that you're about a 90 minute drive to Jacksonsville?

Hi again Susan! Guess what? I had my right hip replaced in January! Hope yours went well mine has gone very well. Yes, around 90 minutes for us to get to Mayo from where we live. Went to my dermatologist today and had a very thorough scan. Still nothing of note to see. So puzzling..

@silversurfer51: it is puzzling but often impossible to find the source of melanoma of unknown primary (MUP) due to speculative theories such as spontaneous remission. MUP is rare, occurring in about 4% of cases, and interestingly happens more often in men.

Glad to hear your hip replacement went well! I’ll be having removal of previously placed pins from a fall sustained in 2018 requiring a posterior approach on the 4th of next month. So it will be delayed birthday gift…actually delayed since last November due to other health issues at that time so I’m really looking forward to it!

Keep me updated on your own Mayo appointment tomorrow.