Melanoma treatment options

Posted by birdman518 @birdman518, Jun 24, 2021

I just had my ill-tempered melanoma removed last Friday at Moffitt in Tampa. I had two SLN taken out around my left ear, as well as a skin graft taken from my thigh.
I will be meeting with my surgeon next week to discuss the LN biopsies. In the meantime I have been reading a lot of books (like "Rebel Cell" which I recommend) and articles and (watching) videos.
FWIW I typically only use known, reliable sites like Mayo, Moffitt, AIM At Melanoma, CureMelanoma, etc.

If I am found to have either stage 3 or 4 melanoma, I presume that the team will refer me to an oncologist to discuss treatment. I have been reading a lot about drugs like Opdivo, Keytruda and Yervoy. I think I *get* the idea behind immunotherapy (IMTH), and realize that it may be the current best option.

I cannot deny that the side effects are daunting, and it is still unclear to me that these treatments really extend life much, with some exceptions.
See e.g. here: https://www.webmd.com/melanoma-skin-cancer/melanoma-treatment-side-effects

Here are some questions:

1. What happens if I decline immunotherapy and simply get quarterly checkups?
(other than dying of cancer eventually)? Will my next N years have a better
quality of life, or not? Some side-effects that are mentioned (like onset of
diabetes) seem pretty bad.
2. I believe I understand that PET or CT scans are typically used to try and
determine if the IMTH is working. Is that true? Would that be the next
step after being declared stage 3? Are subsequent scans like those used
as the "proof" that the IMTH is working? If not how is melanoma "detectable"
after it has been excised from where it was first found?

I want to have a positive mental attitude, but doesn't anyone else ask: is it worth it?

Interested in more discussions like this? Go to the Cancer group.

@birdman518 i understand that you’re worried about side effects, aren’t we all. Most of the side effects listed are pretty rare. The drug companies have to list every side effect no matter how rare. Common side effects usually resolve as your body adjusts. When i was diagnosed with lesions on my brain, my first thoughts were very negative. I just didn’t want to go through treatment. But, now 3 years later (and still receiving treatment), i have no regrets.
If you decline the immunotherapy, any microscopic cancer cell will continue to grow. The cells can migrate to anywhere in the body and make diagnosis and treatment difficult. If the surgeon says that any lymph nodes were positive, then they might do a PET scan to see if the cells have spread (metastasis).
Have you spoken to the doctors about your concern over side effects?

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@becsbuddy

@birdman518 i understand that you’re worried about side effects, aren’t we all. Most of the side effects listed are pretty rare. The drug companies have to list every side effect no matter how rare. Common side effects usually resolve as your body adjusts. When i was diagnosed with lesions on my brain, my first thoughts were very negative. I just didn’t want to go through treatment. But, now 3 years later (and still receiving treatment), i have no regrets.
If you decline the immunotherapy, any microscopic cancer cell will continue to grow. The cells can migrate to anywhere in the body and make diagnosis and treatment difficult. If the surgeon says that any lymph nodes were positive, then they might do a PET scan to see if the cells have spread (metastasis).
Have you spoken to the doctors about your concern over side effects?

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I just had my melanoma removed last Friday… so I am very new to this. I will be meeting with my surgeon next Tues. and will find out where I am, stage-wise. Maybe it will prove to be local only!
But thank you for your encouragement…

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I hope your melanoma was caught early. I think the MOHs procedure is quite successful. It sounds like you have it in a "good" place where treatment can be effective. Mind your good diet and lifestyle as you go through this. Melanoma is not the death sentence it used to be in the 90s – my sister died from it. She did not accept chemotherapy as she had had a bad outcome for our mom (different cancer). Quality of life is important, even with the meds and it may be that you come out well at the end of treatment. If you are basically healthy, you should do fine. Keep up the good thoughts and follow through.

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Just now, on our way home from my appointment we got a call from Moffitt that my pathology results show NO CANCER in my lymph nodes nor in the tissue surrounding the original melanoma site.

Thank you for all the support and prayers, and for sharing your stories! I will, of course, have follow-up screenings every three months.

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@birdman518

Just now, on our way home from my appointment we got a call from Moffitt that my pathology results show NO CANCER in my lymph nodes nor in the tissue surrounding the original melanoma site.

Thank you for all the support and prayers, and for sharing your stories! I will, of course, have follow-up screenings every three months.

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@birdman518 what wonderful news!! How are you going to celebrate?

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@birdman518

Just now, on our way home from my appointment we got a call from Moffitt that my pathology results show NO CANCER in my lymph nodes nor in the tissue surrounding the original melanoma site.

Thank you for all the support and prayers, and for sharing your stories! I will, of course, have follow-up screenings every three months.

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@birdman518 Wow! What great news! I ask along with @becsbuddy, how did you celebrate? Did the world seem brighter, colors more sharp? Screenings every three months – you got that!
Ginger

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We had lunch out… for us the celebration is that we will get to go to our 2nd home in New England… we expected to be stuck in Florida getting cancer treatments. We live in a real fishing village and can buy lobster down at the docks off the boat… and steamers, and swordfish!

Thanks again for everyone's support!

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I recently had an open wide incision for Stage 2 melanoma on my lower leg. Because of the location my surgeon my surgeon opted to not suture it. The skin is growing back, but I haven’t never heard of this type of incision.

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@barbjo

I recently had an open wide incision for Stage 2 melanoma on my lower leg. Because of the location my surgeon my surgeon opted to not suture it. The skin is growing back, but I haven’t never heard of this type of incision.

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Hello @barbjo. I wonder if it is possible to review your medical chart to see if the type of incision is listed? Have you checked there?

Also, you will notice that I have moved your post into an existing discussion on melanoma here: https://connect.mayoclinic.org/discussion/melanoma-treatment-options/

Do you have any concerns about the incision or more so curiosity about it?

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I go back to my surgeon in about a month. It is healing. I have some questions for her. I am somewhat concerned because I have not found anyone that has a similar experience . I was told I was having an elliptical incision that was going to be closed with sutures. The nurse reviewed the instructions on the post op I was prepared for. When the surgeon came in she changed her mind and said because the location it would be better to do an open incision. She was concerned sutures would pull out when I walked. This ended up being much more that I expected.
Thanks for contacting me.

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@amandajro

Hello @barbjo. I wonder if it is possible to review your medical chart to see if the type of incision is listed? Have you checked there?

Also, you will notice that I have moved your post into an existing discussion on melanoma here: https://connect.mayoclinic.org/discussion/melanoma-treatment-options/

Do you have any concerns about the incision or more so curiosity about it?

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I just noticed a big typo in my original post . My melanoma was Stage 1 not 2, Thank goodness.

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@barbjo

I go back to my surgeon in about a month. It is healing. I have some questions for her. I am somewhat concerned because I have not found anyone that has a similar experience . I was told I was having an elliptical incision that was going to be closed with sutures. The nurse reviewed the instructions on the post op I was prepared for. When the surgeon came in she changed her mind and said because the location it would be better to do an open incision. She was concerned sutures would pull out when I walked. This ended up being much more that I expected.
Thanks for contacting me.

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@barbjo, well that is a good typo. I'm glad to hear that your melanoma is stage 1 not stage 2. I'm bringing in @jenniferhunter and @gingerw into this discussion as I believe they may have experience or knowledge to share about elliptical incision vs open incision.

I'm glad to hear your incision is healing nicely. But I sense that the change in surgical plans left you feeling unsure or questioning. If you have any concerns about the healing process, don't hesitate to contact your surgeon's office for an earlier appointment.

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