› Forums › General Melanoma Community › driving me crazy
- This topic has 18 replies, 5 voices, and was last updated 12 years, 8 months ago by
CAdesiree.
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- August 18, 2011 at 10:07 pm
i had issues with my original derm who diagnosed the melanoma, then later performed the MOHS to remove it. i had gotten a second opinion, i found a dr at a cancer center with melanoma experience. this other dr is great!!! she listens to me, answers my questions and doesnt make me feel silly about my concerns. she had ordered scans for peace of mind… my insurance only approved one area to be scanned out of the three she requested. they scanned my lungs, came back clear. insurance said there wasnt enough evidence to perform other scans.
i had issues with my original derm who diagnosed the melanoma, then later performed the MOHS to remove it. i had gotten a second opinion, i found a dr at a cancer center with melanoma experience. this other dr is great!!! she listens to me, answers my questions and doesnt make me feel silly about my concerns. she had ordered scans for peace of mind… my insurance only approved one area to be scanned out of the three she requested. they scanned my lungs, came back clear. insurance said there wasnt enough evidence to perform other scans. all the while this was happening she was also waiting for approval from my insurance to resect the area of my initial tumor. when the scans came back clear i just kinda assumed my insurance wasn't going to allow a resection either since it had been a couple months. but as i was entering chuck e cheese to celebrate my son's 5th birthday i got a call from the surgeon to schedule consultation. i asked them to email me info and explained where i was.
since my scan came back clear and i had just assumed insurance was going to veto resection i had given up on the idea and made my peace with it. then *BAM* phone call. i dont know what to do now… tried to run it by my hubby, but he wants me to do it to make sure they got it all. he has had a hard time listening to anything about melanoma since my diagnosis. so it wasnt hard to believe he didnt remember my fears about how sneaky melanoma is…
honestly, even if i go in for resection, isnt it possible it could come back? and would resection possibly increase those chances? i mean, my body would be focused on re-healing that area, would it lower my immune abilities? i feel whiney even being so concerned… so many of you have been fighting so much longer or harder than ive had to… but here i am rambling like a baby… the original biopsy said the tumor was .72mm with mitosis of 2. i had MOHS to remove it. and the original derm thinks he got it all. am i being paranoid because of conflicting personalities with first dr?
i made the appt for tomorrow with the new surgeon, for consultation. i am hoping to discuss these concerns with him. but i was also helping for some guidance from someone else with experience.
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- August 18, 2011 at 10:29 pm
It's very likely that the Mohs "got it all" – especially with a small lesion like yours. The real question here is how big the margins were with the Mohs. The reason they do a WLE is to get any little single cells that have sneaked off from the original primary. Surgery is THE BEST option to "cure" melanoma. 1 cm margins (all sides and depth as well) around the entire lesion are the current standard of care for a melanoma with your depth. Do you think the Mohs surgery achieved that? A small surgery is unlikely to stress your immune system too much – especially when the goal is to remove any troublesome cells. (Many of us have biopsies and excisions all the time with no issues whatsoever). Melanoma can come back, yes. But the reason the standards were created for margins is to do the minimal amount of cutting to give the best prognosis. Most people in your situation are cured with their WLE. The Mohs and the margins are the unknowns here, however. In the end, you have to do what makes YOU the most comfortable!
Best wishes,
Janner
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- August 18, 2011 at 11:47 pm
thank you janner!!! i think i let my imagination run wild with my fears before… i think im going to meet with this surgeon for an opinion, but not surgery. i am going to try and just moniter the area, but at least meet with surgeon to know who he is. that way IF i have to go back for any future surgeries i will know my comfort level with the dr already. plus, he will see for himself the scar as it is… so IF anything changed he would have already been familiar with me. thanks again!!!
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- August 18, 2011 at 11:47 pm
thank you janner!!! i think i let my imagination run wild with my fears before… i think im going to meet with this surgeon for an opinion, but not surgery. i am going to try and just moniter the area, but at least meet with surgeon to know who he is. that way IF i have to go back for any future surgeries i will know my comfort level with the dr already. plus, he will see for himself the scar as it is… so IF anything changed he would have already been familiar with me. thanks again!!!
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- August 18, 2011 at 10:29 pm
It's very likely that the Mohs "got it all" – especially with a small lesion like yours. The real question here is how big the margins were with the Mohs. The reason they do a WLE is to get any little single cells that have sneaked off from the original primary. Surgery is THE BEST option to "cure" melanoma. 1 cm margins (all sides and depth as well) around the entire lesion are the current standard of care for a melanoma with your depth. Do you think the Mohs surgery achieved that? A small surgery is unlikely to stress your immune system too much – especially when the goal is to remove any troublesome cells. (Many of us have biopsies and excisions all the time with no issues whatsoever). Melanoma can come back, yes. But the reason the standards were created for margins is to do the minimal amount of cutting to give the best prognosis. Most people in your situation are cured with their WLE. The Mohs and the margins are the unknowns here, however. In the end, you have to do what makes YOU the most comfortable!
Best wishes,
Janner
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- August 19, 2011 at 2:46 am
My understanding of MOHS is that it is designed to give the smallest possible margins. So I would doubt that you achieved the recommended 1 cm margins. Your new surgeon could request records from the old doctor to confirm. You asked for "guidance from someone with experience." My initial lesion was thicker and I did not have MOHS, so I've never quite been in your shoes. That disclaimer being made, my inclination would be to have the re-excision unless the original doctor's records clearly state 1 cm margins were achieved.
Listen to what the surgeon has to say and make your own call.
Best wishes,
KatyWI
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- August 19, 2011 at 4:00 am
much appreciated! from my understanding he performed MOHS because it would allow him to remove the least amount necessary… so i doubt the margins were achieved. he almost made it sound like by performing MOHS it could pinpoint the cancer to remove only it. and that wasnt even the derm, that was his PA. i will definetly be listening to everything the new surgeon says with notebook in hand. thank you again!
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- August 19, 2011 at 2:29 pm
Mohs is exactly what is used for the other types of skin cancer. They don't pose the same problems as melanoma when a cell is left behind. Mohs was designed for them, not melanoma. It is difficult to see melanocytes with Mohs, so your derm can't even be positive he got clear margins let alone 1cm margins. Achieving margins is a big deal in melanoma, so I would definitely listen to what the new surgeon has to say. A little more inconvenience now might be worth it later.
Best wishes,
Janner
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- August 19, 2011 at 2:29 pm
Mohs is exactly what is used for the other types of skin cancer. They don't pose the same problems as melanoma when a cell is left behind. Mohs was designed for them, not melanoma. It is difficult to see melanocytes with Mohs, so your derm can't even be positive he got clear margins let alone 1cm margins. Achieving margins is a big deal in melanoma, so I would definitely listen to what the new surgeon has to say. A little more inconvenience now might be worth it later.
Best wishes,
Janner
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- August 19, 2011 at 4:00 am
much appreciated! from my understanding he performed MOHS because it would allow him to remove the least amount necessary… so i doubt the margins were achieved. he almost made it sound like by performing MOHS it could pinpoint the cancer to remove only it. and that wasnt even the derm, that was his PA. i will definetly be listening to everything the new surgeon says with notebook in hand. thank you again!
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- August 19, 2011 at 2:46 am
My understanding of MOHS is that it is designed to give the smallest possible margins. So I would doubt that you achieved the recommended 1 cm margins. Your new surgeon could request records from the old doctor to confirm. You asked for "guidance from someone with experience." My initial lesion was thicker and I did not have MOHS, so I've never quite been in your shoes. That disclaimer being made, my inclination would be to have the re-excision unless the original doctor's records clearly state 1 cm margins were achieved.
Listen to what the surgeon has to say and make your own call.
Best wishes,
KatyWI
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- August 19, 2011 at 3:31 am
You have to do what makes you comfortable. However, you felt the need to have a scan for a thin lesion and had been very concerned when you originally posted about questioning if the dermatologist had gotten it all. This is your only chance for the wide excision. You have to think now of what you would feel if it comes back at a later date.
Right now a little time has passed so you are feeling that all is ok. That's a good thing and it's healthy to be moving on. But, really think on this. They have the standard protocal of a 1cm border for a reason.
Not everyone has a metastices but as you can tell on this board it does happen. Is passing on a small surgery worth this?
Please listen carefully to the advice your given tomorrow. Sounds like your husband did hear your fears.
Linda
Stage IV since 06, primary was in 1979
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- August 19, 2011 at 3:54 am
thank you linda! i am sorry you have been dealing with this as long as ive been alive… i was born in 79. i will listen to everything he has to say. that was the biggest problem with the original dr, his lack of communication. i am trying to be open minded. but i had let this consume me until maybe 2 weeks ago. that is when i finally made peace with it. thats why i am so apprehensive about re-opening that can of worms, or in this case- my back. and my over active imagination. but i agree my hubby probably was listening, more than i thought. thanks again!
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- August 19, 2011 at 3:54 am
thank you linda! i am sorry you have been dealing with this as long as ive been alive… i was born in 79. i will listen to everything he has to say. that was the biggest problem with the original dr, his lack of communication. i am trying to be open minded. but i had let this consume me until maybe 2 weeks ago. that is when i finally made peace with it. thats why i am so apprehensive about re-opening that can of worms, or in this case- my back. and my over active imagination. but i agree my hubby probably was listening, more than i thought. thanks again!
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- August 19, 2011 at 3:31 am
You have to do what makes you comfortable. However, you felt the need to have a scan for a thin lesion and had been very concerned when you originally posted about questioning if the dermatologist had gotten it all. This is your only chance for the wide excision. You have to think now of what you would feel if it comes back at a later date.
Right now a little time has passed so you are feeling that all is ok. That's a good thing and it's healthy to be moving on. But, really think on this. They have the standard protocal of a 1cm border for a reason.
Not everyone has a metastices but as you can tell on this board it does happen. Is passing on a small surgery worth this?
Please listen carefully to the advice your given tomorrow. Sounds like your husband did hear your fears.
Linda
Stage IV since 06, primary was in 1979
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- August 19, 2011 at 5:01 pm
So I'm just going to give my blunt opinion, no beating around the bush. Moh's cannot determine if all melanoma has been removed like it can basal or squamous. The wide excision is an absolute must for melanoma. You're missing one of the most important basic steps in melanoma treatment if you don't do the WLE. I hope you'll seriously consider it.
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- August 19, 2011 at 5:01 pm
So I'm just going to give my blunt opinion, no beating around the bush. Moh's cannot determine if all melanoma has been removed like it can basal or squamous. The wide excision is an absolute must for melanoma. You're missing one of the most important basic steps in melanoma treatment if you don't do the WLE. I hope you'll seriously consider it.
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