@skywalker
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- August 24, 2015 at 11:08 pm
Help please!!!!
I am running into terrible difficulties. My lesion is only about 6 mm. But I am being told that it needs to be excised with 9 mm margins – 'that is the standard of care'. That would bring my defect to 2.5 cm at least provided the margins are clear. Any defect larger than 1.5 cm, I am told will need a forehead flap to repair. I googled a forehead flap for nose reconstruction and it is a horrendous looking procedure. Prior patients also complain about longterm complications: shooting pains in the forehead, lowered eyebrow, impaired eye and forehead musles. While that may be my last resort, I desperately want to find out if I have other options.
I've been reading myself through some of the melanoma in situ (MIS) treatment literature. It appears that if the lesion were not on the center of my nose it would be simple. Excise with generous margins, close. Done.
The nose: very different story due to the little tissue it has. Any larger lesion may impair function and be a deformity.
There are discussions in the medical literature that lesions in such sensitive areas should be treated with 'tissue sparing' alternative methods: e.g., slow Mohs (cut a little, send to regular pathology for proper staining, cut some more if margins not clear, etc). Or treatment with Aldara. Highly controversial.
25% of MIS actually turn out to be invasive after excision and missing any cancer cells in a poorly differentiated tumor may spell death. So, so far I have not found any surgeon who offers an 'alternative tissue sparing method'.
Did any of you have that experience? Do you have any advise? Please help.
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- August 24, 2015 at 11:08 pm
Help please!!!!
I am running into terrible difficulties. My lesion is only about 6 mm. But I am being told that it needs to be excised with 9 mm margins – 'that is the standard of care'. That would bring my defect to 2.5 cm at least provided the margins are clear. Any defect larger than 1.5 cm, I am told will need a forehead flap to repair. I googled a forehead flap for nose reconstruction and it is a horrendous looking procedure. Prior patients also complain about longterm complications: shooting pains in the forehead, lowered eyebrow, impaired eye and forehead musles. While that may be my last resort, I desperately want to find out if I have other options.
I've been reading myself through some of the melanoma in situ (MIS) treatment literature. It appears that if the lesion were not on the center of my nose it would be simple. Excise with generous margins, close. Done.
The nose: very different story due to the little tissue it has. Any larger lesion may impair function and be a deformity.
There are discussions in the medical literature that lesions in such sensitive areas should be treated with 'tissue sparing' alternative methods: e.g., slow Mohs (cut a little, send to regular pathology for proper staining, cut some more if margins not clear, etc). Or treatment with Aldara. Highly controversial.
25% of MIS actually turn out to be invasive after excision and missing any cancer cells in a poorly differentiated tumor may spell death. So, so far I have not found any surgeon who offers an 'alternative tissue sparing method'.
Did any of you have that experience? Do you have any advise? Please help.
-
- August 24, 2015 at 11:08 pm
Help please!!!!
I am running into terrible difficulties. My lesion is only about 6 mm. But I am being told that it needs to be excised with 9 mm margins – 'that is the standard of care'. That would bring my defect to 2.5 cm at least provided the margins are clear. Any defect larger than 1.5 cm, I am told will need a forehead flap to repair. I googled a forehead flap for nose reconstruction and it is a horrendous looking procedure. Prior patients also complain about longterm complications: shooting pains in the forehead, lowered eyebrow, impaired eye and forehead musles. While that may be my last resort, I desperately want to find out if I have other options.
I've been reading myself through some of the melanoma in situ (MIS) treatment literature. It appears that if the lesion were not on the center of my nose it would be simple. Excise with generous margins, close. Done.
The nose: very different story due to the little tissue it has. Any larger lesion may impair function and be a deformity.
There are discussions in the medical literature that lesions in such sensitive areas should be treated with 'tissue sparing' alternative methods: e.g., slow Mohs (cut a little, send to regular pathology for proper staining, cut some more if margins not clear, etc). Or treatment with Aldara. Highly controversial.
25% of MIS actually turn out to be invasive after excision and missing any cancer cells in a poorly differentiated tumor may spell death. So, so far I have not found any surgeon who offers an 'alternative tissue sparing method'.
Did any of you have that experience? Do you have any advise? Please help.
-
- September 27, 2015 at 12:12 am
Dear Friend,
I think you messaged me and I emailed back but just in case that was a different person I want to respond here tooL
Sorry you have the same problem I have.I just got my thing removed at the John Wayne Cancer Institute in Santa Monica, California. They have a dedicated Melanoma Program and the surgeon does Melanoma’s only. He is not a plastic surgeon though. I have after 10 doctor visits to some of the hot shot melanomaspecialists and some plastic surgeons figured out that my options are limited.I got initially radically different opinions: a little Aldara ointment for 6-12 weeks versus having a forehead flap, e.g., see here: https://www.youtube.com/watch?v=QdTgs8qSg2YI am trained as a researcher and, thanks to the very divergent opinions, started reading myself through the past 10 years of relevant melanoma research.My conclusions, in concert with what I have learned from the docs is that excision is the necessary treatment; it is at this stage (I’m stage 1 – per the biopsy report) associated with a very high cure rate.The excision leaves a hole in the nose. Mine is 1.6 cm x 1.8 cm. Looks pretty gnarly. Oh well.I too am typically regarded as quite attractive and having a hole in the nose was not part of my master plan … but, I don't want to die yet. And especially not of melanoma. It seems to be a sucky disease once it gets really going. I had my spot for seven years – with the dermatologist thinking nothing of it. But given that time frame, I did not want to wait another decade despite its in situ status.I am hoping that the margins are clear and that I won’t need a reexcision. The plan is to then use a tissue graft next week from behind the ear to close the defect.Grafts look later a bit patchy, similar to a bandaid. Oh well, … again.Not my ideal solution but given the source of the problem and the lousy location there isn’t much of a choice. If the defect gets any larger, I will need to have a flap from regional tissue, e.g., the forehead.However, I have figured out since then that the forehead flap I was first told I need to have has alternative much smaller and less traumatic versions.We’ll see.If you want to talk, feel free to call me. I have a hard time writing right now because I can’t keep my glasses on for any length of time; they are pressing on the wound.But I try to regard this as a passing issue. A full blown invasive melanoma will be much more of a hassle. I was diagnosed with breast cancer in 2008 and had after much terror and soul searching a blilateral mastectomy with subsequent reconstruction. My sex appeal is apparently undiminished. My husband got used to it on day 2 and I've had an innumerable number of men come on to me, even those who know my situation. I am also a public speaker, so I understand your worries in that direction as well.Again, the future 'bandaid' on my nose is not my ideal situation but I'll move past that too. And so will you.Feel free to call me if you want to talk. All the best for you. -
- September 27, 2015 at 12:12 am
Dear Friend,
I think you messaged me and I emailed back but just in case that was a different person I want to respond here tooL
Sorry you have the same problem I have.I just got my thing removed at the John Wayne Cancer Institute in Santa Monica, California. They have a dedicated Melanoma Program and the surgeon does Melanoma’s only. He is not a plastic surgeon though. I have after 10 doctor visits to some of the hot shot melanomaspecialists and some plastic surgeons figured out that my options are limited.I got initially radically different opinions: a little Aldara ointment for 6-12 weeks versus having a forehead flap, e.g., see here: https://www.youtube.com/watch?v=QdTgs8qSg2YI am trained as a researcher and, thanks to the very divergent opinions, started reading myself through the past 10 years of relevant melanoma research.My conclusions, in concert with what I have learned from the docs is that excision is the necessary treatment; it is at this stage (I’m stage 1 – per the biopsy report) associated with a very high cure rate.The excision leaves a hole in the nose. Mine is 1.6 cm x 1.8 cm. Looks pretty gnarly. Oh well.I too am typically regarded as quite attractive and having a hole in the nose was not part of my master plan … but, I don't want to die yet. And especially not of melanoma. It seems to be a sucky disease once it gets really going. I had my spot for seven years – with the dermatologist thinking nothing of it. But given that time frame, I did not want to wait another decade despite its in situ status.I am hoping that the margins are clear and that I won’t need a reexcision. The plan is to then use a tissue graft next week from behind the ear to close the defect.Grafts look later a bit patchy, similar to a bandaid. Oh well, … again.Not my ideal solution but given the source of the problem and the lousy location there isn’t much of a choice. If the defect gets any larger, I will need to have a flap from regional tissue, e.g., the forehead.However, I have figured out since then that the forehead flap I was first told I need to have has alternative much smaller and less traumatic versions.We’ll see.If you want to talk, feel free to call me. I have a hard time writing right now because I can’t keep my glasses on for any length of time; they are pressing on the wound.But I try to regard this as a passing issue. A full blown invasive melanoma will be much more of a hassle. I was diagnosed with breast cancer in 2008 and had after much terror and soul searching a blilateral mastectomy with subsequent reconstruction. My sex appeal is apparently undiminished. My husband got used to it on day 2 and I've had an innumerable number of men come on to me, even those who know my situation. I am also a public speaker, so I understand your worries in that direction as well.Again, the future 'bandaid' on my nose is not my ideal situation but I'll move past that too. And so will you.Feel free to call me if you want to talk. All the best for you. -
- September 27, 2015 at 12:12 am
Dear Friend,
I think you messaged me and I emailed back but just in case that was a different person I want to respond here tooL
Sorry you have the same problem I have.I just got my thing removed at the John Wayne Cancer Institute in Santa Monica, California. They have a dedicated Melanoma Program and the surgeon does Melanoma’s only. He is not a plastic surgeon though. I have after 10 doctor visits to some of the hot shot melanomaspecialists and some plastic surgeons figured out that my options are limited.I got initially radically different opinions: a little Aldara ointment for 6-12 weeks versus having a forehead flap, e.g., see here: https://www.youtube.com/watch?v=QdTgs8qSg2YI am trained as a researcher and, thanks to the very divergent opinions, started reading myself through the past 10 years of relevant melanoma research.My conclusions, in concert with what I have learned from the docs is that excision is the necessary treatment; it is at this stage (I’m stage 1 – per the biopsy report) associated with a very high cure rate.The excision leaves a hole in the nose. Mine is 1.6 cm x 1.8 cm. Looks pretty gnarly. Oh well.I too am typically regarded as quite attractive and having a hole in the nose was not part of my master plan … but, I don't want to die yet. And especially not of melanoma. It seems to be a sucky disease once it gets really going. I had my spot for seven years – with the dermatologist thinking nothing of it. But given that time frame, I did not want to wait another decade despite its in situ status.I am hoping that the margins are clear and that I won’t need a reexcision. The plan is to then use a tissue graft next week from behind the ear to close the defect.Grafts look later a bit patchy, similar to a bandaid. Oh well, … again.Not my ideal solution but given the source of the problem and the lousy location there isn’t much of a choice. If the defect gets any larger, I will need to have a flap from regional tissue, e.g., the forehead.However, I have figured out since then that the forehead flap I was first told I need to have has alternative much smaller and less traumatic versions.We’ll see.If you want to talk, feel free to call me. I have a hard time writing right now because I can’t keep my glasses on for any length of time; they are pressing on the wound.But I try to regard this as a passing issue. A full blown invasive melanoma will be much more of a hassle. I was diagnosed with breast cancer in 2008 and had after much terror and soul searching a blilateral mastectomy with subsequent reconstruction. My sex appeal is apparently undiminished. My husband got used to it on day 2 and I've had an innumerable number of men come on to me, even those who know my situation. I am also a public speaker, so I understand your worries in that direction as well.Again, the future 'bandaid' on my nose is not my ideal situation but I'll move past that too. And so will you.Feel free to call me if you want to talk. All the best for you. -
- September 3, 2015 at 12:27 am
Paul: Thank you for not giving up on me. Yes, by now I realized, contrary to prior info from my derm, that Moh's can be used for melanoma. Apparently it requires a high level of expertise to do it right (excision technique and staining of tissue). I am trying to find a surgeon who can do it. Do you have any recommendations?
-
- September 3, 2015 at 12:27 am
Paul: Thank you for not giving up on me. Yes, by now I realized, contrary to prior info from my derm, that Moh's can be used for melanoma. Apparently it requires a high level of expertise to do it right (excision technique and staining of tissue). I am trying to find a surgeon who can do it. Do you have any recommendations?
-
- September 3, 2015 at 12:27 am
Paul: Thank you for not giving up on me. Yes, by now I realized, contrary to prior info from my derm, that Moh's can be used for melanoma. Apparently it requires a high level of expertise to do it right (excision technique and staining of tissue). I am trying to find a surgeon who can do it. Do you have any recommendations?
-
- August 24, 2015 at 10:57 pm
That is encouraging that your friend had a melanoma removed from the nose and that it looks great now.
Do you know how large her original lesion was?
Where the graft was taken from?
Who her doctor was?
I am running into terrible difficulties. My lesion is only about 6 mm. But I am being told that it needs to be excised with 9 mm margins. That would bring it to a 2.5 cm defect at least, which I am told will need a forehead flap to repair. I googled a forehead flap for nose reconstruction and it is a horrendous looking procedure. While that may be my last resort, I desperately want to find out if I have other options.
-
- August 24, 2015 at 10:57 pm
That is encouraging that your friend had a melanoma removed from the nose and that it looks great now.
Do you know how large her original lesion was?
Where the graft was taken from?
Who her doctor was?
I am running into terrible difficulties. My lesion is only about 6 mm. But I am being told that it needs to be excised with 9 mm margins. That would bring it to a 2.5 cm defect at least, which I am told will need a forehead flap to repair. I googled a forehead flap for nose reconstruction and it is a horrendous looking procedure. While that may be my last resort, I desperately want to find out if I have other options.
-
- August 24, 2015 at 10:57 pm
That is encouraging that your friend had a melanoma removed from the nose and that it looks great now.
Do you know how large her original lesion was?
Where the graft was taken from?
Who her doctor was?
I am running into terrible difficulties. My lesion is only about 6 mm. But I am being told that it needs to be excised with 9 mm margins. That would bring it to a 2.5 cm defect at least, which I am told will need a forehead flap to repair. I googled a forehead flap for nose reconstruction and it is a horrendous looking procedure. While that may be my last resort, I desperately want to find out if I have other options.
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