Melanoma update

Posted by birdman518 @birdman518, Jun 12, 2023

I had a melanoma removed from my scalp two years ago (with a sentinel lymph node removal), and this forum was a great help.
I was told that nothing was found, and that I was all set, except to do quarterly skin checks with my dermatologist.
Well, last week I discovered a lump on my neck, just below where the SLN were removed. Moffitt Cancer Center in Tampa got me in the next day (I feel lucky to live only 40 minutes away), and based on an ultrasound, told me I needed to get it biopsied, which happened this morning.
The PA did not really indicate that this might be "nothing", so I am a little concerned.
I will check in when I find out the results, which will probably take at least 5 business days.

Mitchell

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Mitchell, when will they have the biopsy report back? Sometimes waiting for the results can be so anxiety-producing. What do you have in place to keep your nerves calmed down?

Thinking good thoughts, and waiting alongside of you,
Ginger

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They told me it would be 5 days... presumably business days, so I really do not expect it until either Friday or next Monday.
I am keeping to my regular routine pretty much. I am retired (67) and study languages for a hobby. I just re-started German.
I am also thinking about escalating our travel schedule if this is a bad result.
I have good support from my wife.
Thanks for checking on me!
Mitch

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Yesterday they called me and told me that it is melanoma. I have an appointment with an oncologist at Moffitt on Tuesday, and they have told me I will get more scans, including a brain scan.
It is pretty hard not to see this as the worst possible news, but I am going to try and continue to live by two of my mottos:
PMA - Positive Mental Attitude
NGU - Never Give Up
Thanks to all for your support!
Mitch

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@birdman518

Yesterday they called me and told me that it is melanoma. I have an appointment with an oncologist at Moffitt on Tuesday, and they have told me I will get more scans, including a brain scan.
It is pretty hard not to see this as the worst possible news, but I am going to try and continue to live by two of my mottos:
PMA - Positive Mental Attitude
NGU - Never Give Up
Thanks to all for your support!
Mitch

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@birdman518 Mitch, we knew this might be the result. We were hoping it wasn't, though. Having had melanoma once before, you kinda know the drill of what will be happening.

Absolutely, PMA and NGU should be on repeat in your brain. Are you comfortable with your medical team? You should be hearing from them what Clark level it is [how deep] and the stage. All of this will help guide them and you in the treatment decisions. Will you let me know what they say on Tuesday, please?
Ginger

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@gingerw

@birdman518 Mitch, we knew this might be the result. We were hoping it wasn't, though. Having had melanoma once before, you kinda know the drill of what will be happening.

Absolutely, PMA and NGU should be on repeat in your brain. Are you comfortable with your medical team? You should be hearing from them what Clark level it is [how deep] and the stage. All of this will help guide them and you in the treatment decisions. Will you let me know what they say on Tuesday, please?
Ginger

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Thanks, Ginger. I absolutely will let everyone know. I will doubtless have more questions as well, especially if my presented options are immunotherapy.
Today I am going for brain and other scans (I think they said "full body"). So Tuesday will be the big day. I have been assigned to a different doctor than the one who did the removal from my head.. his name is Ahmad Tarhini, and his CV seems pretty good. Of course Moffitt Cancer Center in Tampa is also considered one of the best in the country.

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Replying here to my original post so hopefully everyone will see it.

Today I had my first appointment with my oncologist to talk about what they found and what my options are. The good news is that there were no other spots visible on the scans, anywhere on my body besides my neck lymph node.
Because of this, I am 99% sure that I will be taking a very conservative treatment, namely removal of this lymph node with continued follow-up at Moffitt. We do not know how long this new surgery will take to set up, but we hope to still be able to go up to Rhode Island, even if only for a couple of months.
If it recurs in the future, I will probably take one of the immuno-therapy treatments.
Thanks to all for sharing your stories.

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@birdman518

Replying here to my original post so hopefully everyone will see it.

Today I had my first appointment with my oncologist to talk about what they found and what my options are. The good news is that there were no other spots visible on the scans, anywhere on my body besides my neck lymph node.
Because of this, I am 99% sure that I will be taking a very conservative treatment, namely removal of this lymph node with continued follow-up at Moffitt. We do not know how long this new surgery will take to set up, but we hope to still be able to go up to Rhode Island, even if only for a couple of months.
If it recurs in the future, I will probably take one of the immuno-therapy treatments.
Thanks to all for sharing your stories.

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Great news!

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I saw the oncologist yesterday. As I expected, he offered me a place in a clinical trial he is running. We also talked about using Opduolag either before or after resection. After going home and talking it over with my wife, we both agree that I will first do the resection and then decide what course of action we will take.
As must be pretty clear by now, at least at this point, I am not willing to take any of the standard-of-care treatments. I have read at least 3 recent books on immuno-therapy, as well as reviewed many technical papers and read about the trials, etc., and have decided it is not for me. I realize I am very much in the minority in this, but so far I am comfortable with it. Remember that I had *no* other evidence anywhere else except this one lymph node in my neck.
I will obviously stay on top of my situation, and take advantage of whatever follow-up scans that they recommend.
Mitch
P.S. You should have seen the look I got from the oncologist when I turned him down!

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@birdman518

I saw the oncologist yesterday. As I expected, he offered me a place in a clinical trial he is running. We also talked about using Opduolag either before or after resection. After going home and talking it over with my wife, we both agree that I will first do the resection and then decide what course of action we will take.
As must be pretty clear by now, at least at this point, I am not willing to take any of the standard-of-care treatments. I have read at least 3 recent books on immuno-therapy, as well as reviewed many technical papers and read about the trials, etc., and have decided it is not for me. I realize I am very much in the minority in this, but so far I am comfortable with it. Remember that I had *no* other evidence anywhere else except this one lymph node in my neck.
I will obviously stay on top of my situation, and take advantage of whatever follow-up scans that they recommend.
Mitch
P.S. You should have seen the look I got from the oncologist when I turned him down!

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@birdman518 Mitch, you are to be commended for taking your stand and sticking to it!

Please keep me in the loop for when your surgery is scheduled, and how everything turns out! I wish nothing but the best for you,
Ginger

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