› Forums › General Melanoma Community › Diagnosis – mhardes- asking for Janners advice
- This topic has 21 replies, 2 voices, and was last updated 10 years, 9 months ago by
Mhardes.
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- May 21, 2015 at 3:41 pm
Hello, I got your message last night and thank you. I have learned a lot during this process and am embarrassed at times with how I have let this put my life on hold..even had my deductible set aside for my max payout on health insurance. It has really bothered me. I guess I have been fortunate so far. It has been a tough year in my life, in my marriage and I am upset with myself that I waited 1 1/2 years before getting checked again. I am mostly upset that I have taken so many things for granted when others are so much worse off than me. If you remember, I had a regular checkup and the mole he said was fine a year 1/2 ago,he thought had changed. He took a biopsy..then called me to get my permission for a second opinion. I then visited him to get a worse case..as it had been almost 2 weeks. My dermatologist said that he thought it was worse case scenario a melanoma in situ. He sent it to an expert at Harvard and said that he was one of the best at this. Fast forward to today…I want to be happy that it wasn't a worse diagnosis…but I just want to hear form an expert that my chances are good…
Here is what I was told by the nurse today:
– she called and pulled up the report – said that it was diagnosed as malignant melanoma with superficial spreading
– she said the expert recommended a 1cm removal and a follow up every 3 months for 2 years and every 6 months until 5 years…( I go every year now) – his exact wording was…recommend a 1cm removal and careful follow up
– said it was early but no stage or anything – but didn't say in situ
– after reading a 1cm tumor is usually stage 1?- but that is what they are taking out
– apparently I don't need to. See an oncologist…so that part of it make me feel better i.e.
– she said that once it's taken out -just need to visit every 3 months
– they have scheduled me for tomorrow to have it removed – I was a little worried about why so soon ( that is how my mind works) then thought, that's good that they want Ito get it done now
– said they may need to do a graft from my leg ( the melanoma is on my back calf)
– you had mentioned in a previous post that this was just a bump in the road and the prognosis was excellent… Does this thought still apply with this final diagnosis?
thank you so much,
mike
- Replies
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- May 22, 2015 at 12:48 am
Get a copy of your pathology report to confirm, but I agree it appears to be a stage 1 lesion if they are discussing 1 cm margins. Timing is irrelevant, waiting would not impact prognosis. Doing a skin graft would require a longer healing time so hopefully that isn't needed. Bump in the road, yes. My first stage 1 diagnosis was 23 years ago. Still here, still stage 1. I've had 3 WLE on my lower legs, one right over my shin bone, one on the inside of my calf and another on the inside just below my knee. Expect it to be tight, but over time things loosen and it won't be an issue. Good luck!
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- May 22, 2015 at 1:24 am
Thank you so much..he said he’s not sure whether we need the ski graph or not…I have a very big calf from working out..so he said I may need it. Sounds corny but I know my life will change a little..as it already has..I definitely have a greater appreciation and I have been juicing up ( thats what I call 30 plus spy..lol) for a few years…if you don’t mind…
– so did you get checked every three months..and did you get to 6 months and a yeartime ( I am 50 by the way)
-can I still go on vacation to a Caribbean environment? Sorry if thats a corny question
-i assume that this is pretty much a final diagnosis for now i.e. no more surprises for a bit
-since…I have looks at every mark on my body and when I itch..oh my…long story short..can start to get A little paranoid..
– did you start and do you notice every little pain and every mark?
– so I assume that when you say 23 years…going strong..and just some small umps with the other ones you have had taken out..I guess the fear is the word melanoma…
– once again….I just wanted to get some feedback as to if I can start thinking about a long life again…sounds bad..but i tabled most of my dreams and aspirations the last month..much to my embarrassment..ty -
- May 22, 2015 at 2:17 am
Life goes on whether or not you've had melanoma. Do what you want! Just do it smarter. Don't let melanoma win.
i have a genetic defect for melanoma and I'm at high risk for multiple primaries. I've had three. 90% of the population never have more than 1. Because of the multiple primaries, I'm on 6 month visits for life. I was diagnosed at age 29 before the Internet. I never think anything is melanoma related until I rule out more obvious causes. I refuse to go there. My parents have both had melanoma and my father passed away last year at a very old age after refusing treatment.
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- May 22, 2015 at 4:16 am
Thank you so much for your comments..I hope I have not taken too much of your time. Also sorry for the typos..I have sent these via my galaxy and did not use spell check. M last question of the day..if the surgeon recommends a 1cm take out and 3 month visits…that means no testing is needed?…I had mohs before and they check it while you are there to make sure they got enough..but from what I understand about this…they take out more than enough to be sure and if they were doing a graph they would really want to be sure I would think…would be a bad deal to do it again..am I right? -
- May 22, 2015 at 1:50 pm
MOHs isn't really appropriate for a WLE. MOHs is designed to get clean margins. The WLE is for extra margins. So if you had clean margins from the biopsy, they know how much to take. They check the tissue after and on rare occasions, they do have to take more. Again, that is rare.
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- May 22, 2015 at 2:54 pm
Ok..thats what I thought..so the prognosis is good..you read all the stuff about 5 year survival rates..and once again thanks for all the info…I am sure that once I get through this paranoid stage all will be well…getting the procedure done today…..wake up this am..have a rash on both legs…then the mind wanders…I am going to beat these mind controlling meaningless thoughts…have a great day…i am going to be cancer free at 4 pm…today and with due diligence and follow ups..remain that way…already doing better..sitting here worried if my rash is something to do with my melanoma…then realize its silly and I will see a dermatologist in a few hours..what a great. person to ask…the rash was there last week as well. I was so nervous when I went to see him..forgot to ask..as you said..going forward..judt need to be smarter..as I thought back..probably not a good thing to use weed killer in my shorts…might be the issue… -
- May 22, 2015 at 2:54 pm
Ok..thats what I thought..so the prognosis is good..you read all the stuff about 5 year survival rates..and once again thanks for all the info…I am sure that once I get through this paranoid stage all will be well…getting the procedure done today…..wake up this am..have a rash on both legs…then the mind wanders…I am going to beat these mind controlling meaningless thoughts…have a great day…i am going to be cancer free at 4 pm…today and with due diligence and follow ups..remain that way…already doing better..sitting here worried if my rash is something to do with my melanoma…then realize its silly and I will see a dermatologist in a few hours..what a great. person to ask…the rash was there last week as well. I was so nervous when I went to see him..forgot to ask..as you said..going forward..judt need to be smarter..as I thought back..probably not a good thing to use weed killer in my shorts…might be the issue… -
- May 22, 2015 at 2:54 pm
Ok..thats what I thought..so the prognosis is good..you read all the stuff about 5 year survival rates..and once again thanks for all the info…I am sure that once I get through this paranoid stage all will be well…getting the procedure done today…..wake up this am..have a rash on both legs…then the mind wanders…I am going to beat these mind controlling meaningless thoughts…have a great day…i am going to be cancer free at 4 pm…today and with due diligence and follow ups..remain that way…already doing better..sitting here worried if my rash is something to do with my melanoma…then realize its silly and I will see a dermatologist in a few hours..what a great. person to ask…the rash was there last week as well. I was so nervous when I went to see him..forgot to ask..as you said..going forward..judt need to be smarter..as I thought back..probably not a good thing to use weed killer in my shorts…might be the issue… -
- May 22, 2015 at 1:50 pm
MOHs isn't really appropriate for a WLE. MOHs is designed to get clean margins. The WLE is for extra margins. So if you had clean margins from the biopsy, they know how much to take. They check the tissue after and on rare occasions, they do have to take more. Again, that is rare.
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- May 22, 2015 at 1:50 pm
MOHs isn't really appropriate for a WLE. MOHs is designed to get clean margins. The WLE is for extra margins. So if you had clean margins from the biopsy, they know how much to take. They check the tissue after and on rare occasions, they do have to take more. Again, that is rare.
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- May 22, 2015 at 4:16 am
Thank you so much for your comments..I hope I have not taken too much of your time. Also sorry for the typos..I have sent these via my galaxy and did not use spell check. M last question of the day..if the surgeon recommends a 1cm take out and 3 month visits…that means no testing is needed?…I had mohs before and they check it while you are there to make sure they got enough..but from what I understand about this…they take out more than enough to be sure and if they were doing a graph they would really want to be sure I would think…would be a bad deal to do it again..am I right? -
- May 22, 2015 at 4:16 am
Thank you so much for your comments..I hope I have not taken too much of your time. Also sorry for the typos..I have sent these via my galaxy and did not use spell check. M last question of the day..if the surgeon recommends a 1cm take out and 3 month visits…that means no testing is needed?…I had mohs before and they check it while you are there to make sure they got enough..but from what I understand about this…they take out more than enough to be sure and if they were doing a graph they would really want to be sure I would think…would be a bad deal to do it again..am I right? -
- May 22, 2015 at 2:17 am
Life goes on whether or not you've had melanoma. Do what you want! Just do it smarter. Don't let melanoma win.
i have a genetic defect for melanoma and I'm at high risk for multiple primaries. I've had three. 90% of the population never have more than 1. Because of the multiple primaries, I'm on 6 month visits for life. I was diagnosed at age 29 before the Internet. I never think anything is melanoma related until I rule out more obvious causes. I refuse to go there. My parents have both had melanoma and my father passed away last year at a very old age after refusing treatment.
-
- May 22, 2015 at 2:17 am
Life goes on whether or not you've had melanoma. Do what you want! Just do it smarter. Don't let melanoma win.
i have a genetic defect for melanoma and I'm at high risk for multiple primaries. I've had three. 90% of the population never have more than 1. Because of the multiple primaries, I'm on 6 month visits for life. I was diagnosed at age 29 before the Internet. I never think anything is melanoma related until I rule out more obvious causes. I refuse to go there. My parents have both had melanoma and my father passed away last year at a very old age after refusing treatment.
-
- May 22, 2015 at 1:24 am
Thank you so much..he said he’s not sure whether we need the ski graph or not…I have a very big calf from working out..so he said I may need it. Sounds corny but I know my life will change a little..as it already has..I definitely have a greater appreciation and I have been juicing up ( thats what I call 30 plus spy..lol) for a few years…if you don’t mind…
– so did you get checked every three months..and did you get to 6 months and a yeartime ( I am 50 by the way)
-can I still go on vacation to a Caribbean environment? Sorry if thats a corny question
-i assume that this is pretty much a final diagnosis for now i.e. no more surprises for a bit
-since…I have looks at every mark on my body and when I itch..oh my…long story short..can start to get A little paranoid..
– did you start and do you notice every little pain and every mark?
– so I assume that when you say 23 years…going strong..and just some small umps with the other ones you have had taken out..I guess the fear is the word melanoma…
– once again….I just wanted to get some feedback as to if I can start thinking about a long life again…sounds bad..but i tabled most of my dreams and aspirations the last month..much to my embarrassment..ty -
- May 22, 2015 at 1:24 am
Thank you so much..he said he’s not sure whether we need the ski graph or not…I have a very big calf from working out..so he said I may need it. Sounds corny but I know my life will change a little..as it already has..I definitely have a greater appreciation and I have been juicing up ( thats what I call 30 plus spy..lol) for a few years…if you don’t mind…
– so did you get checked every three months..and did you get to 6 months and a yeartime ( I am 50 by the way)
-can I still go on vacation to a Caribbean environment? Sorry if thats a corny question
-i assume that this is pretty much a final diagnosis for now i.e. no more surprises for a bit
-since…I have looks at every mark on my body and when I itch..oh my…long story short..can start to get A little paranoid..
– did you start and do you notice every little pain and every mark?
– so I assume that when you say 23 years…going strong..and just some small umps with the other ones you have had taken out..I guess the fear is the word melanoma…
– once again….I just wanted to get some feedback as to if I can start thinking about a long life again…sounds bad..but i tabled most of my dreams and aspirations the last month..much to my embarrassment..ty
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- May 22, 2015 at 12:48 am
Get a copy of your pathology report to confirm, but I agree it appears to be a stage 1 lesion if they are discussing 1 cm margins. Timing is irrelevant, waiting would not impact prognosis. Doing a skin graft would require a longer healing time so hopefully that isn't needed. Bump in the road, yes. My first stage 1 diagnosis was 23 years ago. Still here, still stage 1. I've had 3 WLE on my lower legs, one right over my shin bone, one on the inside of my calf and another on the inside just below my knee. Expect it to be tight, but over time things loosen and it won't be an issue. Good luck!
-
- May 22, 2015 at 12:48 am
Get a copy of your pathology report to confirm, but I agree it appears to be a stage 1 lesion if they are discussing 1 cm margins. Timing is irrelevant, waiting would not impact prognosis. Doing a skin graft would require a longer healing time so hopefully that isn't needed. Bump in the road, yes. My first stage 1 diagnosis was 23 years ago. Still here, still stage 1. I've had 3 WLE on my lower legs, one right over my shin bone, one on the inside of my calf and another on the inside just below my knee. Expect it to be tight, but over time things loosen and it won't be an issue. Good luck!
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Tagged: cutaneous melanoma
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