› Forums › General Melanoma Community › Just diagnosed – Malignant melanoma on scalp
- This topic has 29 replies, 8 voices, and was last updated 7 years ago by Nick Hartmann.
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- July 5, 2014 at 8:13 am
Hi,
I have just been told by my GP I have a 4.3mm thickness on the Breslow and 4-5 on the Clark scale , melanoma on my scalp
I am 31 years old and relatively fit.
I'm seeing a specialist this week to have a wider excision done. There are no signs of spread in my biopsy ,
I guess I'm just wondering what to expect and of there is no real answer at this stage until the excision is done.
Any advice or info as to what I'm in for would be great
- Replies
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- July 5, 2014 at 12:03 pm
4.3mm is a thick leison. If your subsequent tests indicate that it hasn't spread you are very lucky. One of the studies talked about at the ASCO conference this year indicated that patents who take Ipilimumamab. in an adjuvant setting (where they have no more detectable cancer) had a better chance of avoiding recurrence. Since Ipilimumamab is not yet prescribed/approved for adjuvant use– you may want to seek out a trial— if you come up clean. ( I became stage IV ten years after the removal of a 2mm leison from my scalp). Don't mean to scare you– but if by advice you mean "what would you do"? That's it.
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- July 5, 2014 at 12:03 pm
4.3mm is a thick leison. If your subsequent tests indicate that it hasn't spread you are very lucky. One of the studies talked about at the ASCO conference this year indicated that patents who take Ipilimumamab. in an adjuvant setting (where they have no more detectable cancer) had a better chance of avoiding recurrence. Since Ipilimumamab is not yet prescribed/approved for adjuvant use– you may want to seek out a trial— if you come up clean. ( I became stage IV ten years after the removal of a 2mm leison from my scalp). Don't mean to scare you– but if by advice you mean "what would you do"? That's it.
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- July 5, 2014 at 12:03 pm
4.3mm is a thick leison. If your subsequent tests indicate that it hasn't spread you are very lucky. One of the studies talked about at the ASCO conference this year indicated that patents who take Ipilimumamab. in an adjuvant setting (where they have no more detectable cancer) had a better chance of avoiding recurrence. Since Ipilimumamab is not yet prescribed/approved for adjuvant use– you may want to seek out a trial— if you come up clean. ( I became stage IV ten years after the removal of a 2mm leison from my scalp). Don't mean to scare you– but if by advice you mean "what would you do"? That's it.
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- July 5, 2014 at 4:39 pm
I had a malignant melanoma on my scalp as well (found in January) and it had a Breslow depth of 8.4 mm. I was 35 at time of diagnosis and am 36 now. I can't give much advice on what to do, because everyone's situation is different, but as far as what to expect?
They did the Wide Local Excision (WLE) and the Sentinel Node Biopsy (SNB) at the same time. My surgeon held off on putting a skin graft on, pending the results of the SNB, and as a result I had a thick bandage called a bolster (it really is like a little…pillow-thing) stapled to my scalp. (If you want pictures: http://sockschan.info/personal/Surgery/ )
They took four nodes out of my neck for the SNB and all 4 came back positive (cancerous), though only barely: one was 10% cancerous, two of them were 5%, and the last was ~2%. But spreading to 4 lymph nodes means it's automatically Stage IIIC. Whee. So they went in and did a Complete Lymph Node Dissection (CLND) and pulled out 26 more lymph nodes in those areas (so, in my neck). Fortunately, every single one of those came back clean. While they were doing the CLND, the surgeon just pulled some of my skin from the back of my neck up over the WLE site (it was the back of my head, thankfully). That was late February.
After that, it was scan after scan. CTs, MRIs, X-rays, even. They found a couple small spots on my lungs, but they're too small to biopsy. There was something that might've been cancer on my liver, but a second scan revealed the first "nodule" to have been a machine artifact. My head, neck, chest and abdomen were all scanned and all came up clean (save those two tiny somethings, but we'll keep an eye on those).
It took time to get a good range of motion back in my neck. My left earlobe, left shoulder, and the left side of my neck were all …numbish? I could feel it when I touched them, but it was sort of like I was touching someone else's skin and having the sensation sent along to my skin, if that makes sense. It was sort of distant-feeling. Putting earrings in my left earlobe required a mirror for the first time in decades. Oftentimes, I'd be completely unaware of my left bra strap sliding down until it got to my bicep, because my shoulder just couldn't feel it (also I need to adjust my straps better, but that's neither here nor there).
At this point, I'm getting ready for my 3-months-after-surgery checkup with my oncologist. My neck looks like (to quote my husband), "someone tried to give you a Chicago smile and botched the job". My mother was rather distressed by it ("Oh, my darling girl, they just cut you open, didn't they?!" "It's called a neck dissection for a reason, Mom."), but it's healing up pretty well. I use Vitamin E oil on the scar (it goes from up near my ear, down my neck and around the front) and keep it clean. I'm starting to get feeling back in the nerves, which is kinda painful sometimes.
I use SPF 50 broad spectrum sunscreen on the scars, and reapply every hour I'm outside. I have UPF 50 clothing I can wear (including a wide-brimmed hat), SPF 50 lip balm and face moisturizer. I just got some sunglasses that wrap around, go over my prescription glasses, and block UV. Beyond that, I just carry on with life as normal. I'm doing "wait and watch", which I feel is appropriate for my particular situation. Again, everyone's different. Do your research, make sure your doctors explain everything to your satisfaction, and do what you feel is best for you.
It's a rollercoaster ride, let me tell you, and it's not fun to have cancer in your 30's. (Not that it's fun to have it at any time, of course.) Sometimes I get fed up with all the work I have to do just to go outside, but then I was usually an indoor/night owl type anyway (ironic, that). But hey, I tell myself, I'm young and tough and I can fight this thing. I'm sure you can, too. Good luck!
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- July 5, 2014 at 4:39 pm
I had a malignant melanoma on my scalp as well (found in January) and it had a Breslow depth of 8.4 mm. I was 35 at time of diagnosis and am 36 now. I can't give much advice on what to do, because everyone's situation is different, but as far as what to expect?
They did the Wide Local Excision (WLE) and the Sentinel Node Biopsy (SNB) at the same time. My surgeon held off on putting a skin graft on, pending the results of the SNB, and as a result I had a thick bandage called a bolster (it really is like a little…pillow-thing) stapled to my scalp. (If you want pictures: http://sockschan.info/personal/Surgery/ )
They took four nodes out of my neck for the SNB and all 4 came back positive (cancerous), though only barely: one was 10% cancerous, two of them were 5%, and the last was ~2%. But spreading to 4 lymph nodes means it's automatically Stage IIIC. Whee. So they went in and did a Complete Lymph Node Dissection (CLND) and pulled out 26 more lymph nodes in those areas (so, in my neck). Fortunately, every single one of those came back clean. While they were doing the CLND, the surgeon just pulled some of my skin from the back of my neck up over the WLE site (it was the back of my head, thankfully). That was late February.
After that, it was scan after scan. CTs, MRIs, X-rays, even. They found a couple small spots on my lungs, but they're too small to biopsy. There was something that might've been cancer on my liver, but a second scan revealed the first "nodule" to have been a machine artifact. My head, neck, chest and abdomen were all scanned and all came up clean (save those two tiny somethings, but we'll keep an eye on those).
It took time to get a good range of motion back in my neck. My left earlobe, left shoulder, and the left side of my neck were all …numbish? I could feel it when I touched them, but it was sort of like I was touching someone else's skin and having the sensation sent along to my skin, if that makes sense. It was sort of distant-feeling. Putting earrings in my left earlobe required a mirror for the first time in decades. Oftentimes, I'd be completely unaware of my left bra strap sliding down until it got to my bicep, because my shoulder just couldn't feel it (also I need to adjust my straps better, but that's neither here nor there).
At this point, I'm getting ready for my 3-months-after-surgery checkup with my oncologist. My neck looks like (to quote my husband), "someone tried to give you a Chicago smile and botched the job". My mother was rather distressed by it ("Oh, my darling girl, they just cut you open, didn't they?!" "It's called a neck dissection for a reason, Mom."), but it's healing up pretty well. I use Vitamin E oil on the scar (it goes from up near my ear, down my neck and around the front) and keep it clean. I'm starting to get feeling back in the nerves, which is kinda painful sometimes.
I use SPF 50 broad spectrum sunscreen on the scars, and reapply every hour I'm outside. I have UPF 50 clothing I can wear (including a wide-brimmed hat), SPF 50 lip balm and face moisturizer. I just got some sunglasses that wrap around, go over my prescription glasses, and block UV. Beyond that, I just carry on with life as normal. I'm doing "wait and watch", which I feel is appropriate for my particular situation. Again, everyone's different. Do your research, make sure your doctors explain everything to your satisfaction, and do what you feel is best for you.
It's a rollercoaster ride, let me tell you, and it's not fun to have cancer in your 30's. (Not that it's fun to have it at any time, of course.) Sometimes I get fed up with all the work I have to do just to go outside, but then I was usually an indoor/night owl type anyway (ironic, that). But hey, I tell myself, I'm young and tough and I can fight this thing. I'm sure you can, too. Good luck!
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- July 5, 2014 at 4:39 pm
I had a malignant melanoma on my scalp as well (found in January) and it had a Breslow depth of 8.4 mm. I was 35 at time of diagnosis and am 36 now. I can't give much advice on what to do, because everyone's situation is different, but as far as what to expect?
They did the Wide Local Excision (WLE) and the Sentinel Node Biopsy (SNB) at the same time. My surgeon held off on putting a skin graft on, pending the results of the SNB, and as a result I had a thick bandage called a bolster (it really is like a little…pillow-thing) stapled to my scalp. (If you want pictures: http://sockschan.info/personal/Surgery/ )
They took four nodes out of my neck for the SNB and all 4 came back positive (cancerous), though only barely: one was 10% cancerous, two of them were 5%, and the last was ~2%. But spreading to 4 lymph nodes means it's automatically Stage IIIC. Whee. So they went in and did a Complete Lymph Node Dissection (CLND) and pulled out 26 more lymph nodes in those areas (so, in my neck). Fortunately, every single one of those came back clean. While they were doing the CLND, the surgeon just pulled some of my skin from the back of my neck up over the WLE site (it was the back of my head, thankfully). That was late February.
After that, it was scan after scan. CTs, MRIs, X-rays, even. They found a couple small spots on my lungs, but they're too small to biopsy. There was something that might've been cancer on my liver, but a second scan revealed the first "nodule" to have been a machine artifact. My head, neck, chest and abdomen were all scanned and all came up clean (save those two tiny somethings, but we'll keep an eye on those).
It took time to get a good range of motion back in my neck. My left earlobe, left shoulder, and the left side of my neck were all …numbish? I could feel it when I touched them, but it was sort of like I was touching someone else's skin and having the sensation sent along to my skin, if that makes sense. It was sort of distant-feeling. Putting earrings in my left earlobe required a mirror for the first time in decades. Oftentimes, I'd be completely unaware of my left bra strap sliding down until it got to my bicep, because my shoulder just couldn't feel it (also I need to adjust my straps better, but that's neither here nor there).
At this point, I'm getting ready for my 3-months-after-surgery checkup with my oncologist. My neck looks like (to quote my husband), "someone tried to give you a Chicago smile and botched the job". My mother was rather distressed by it ("Oh, my darling girl, they just cut you open, didn't they?!" "It's called a neck dissection for a reason, Mom."), but it's healing up pretty well. I use Vitamin E oil on the scar (it goes from up near my ear, down my neck and around the front) and keep it clean. I'm starting to get feeling back in the nerves, which is kinda painful sometimes.
I use SPF 50 broad spectrum sunscreen on the scars, and reapply every hour I'm outside. I have UPF 50 clothing I can wear (including a wide-brimmed hat), SPF 50 lip balm and face moisturizer. I just got some sunglasses that wrap around, go over my prescription glasses, and block UV. Beyond that, I just carry on with life as normal. I'm doing "wait and watch", which I feel is appropriate for my particular situation. Again, everyone's different. Do your research, make sure your doctors explain everything to your satisfaction, and do what you feel is best for you.
It's a rollercoaster ride, let me tell you, and it's not fun to have cancer in your 30's. (Not that it's fun to have it at any time, of course.) Sometimes I get fed up with all the work I have to do just to go outside, but then I was usually an indoor/night owl type anyway (ironic, that). But hey, I tell myself, I'm young and tough and I can fight this thing. I'm sure you can, too. Good luck!
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- July 5, 2014 at 9:06 pm
Hello,
While my husband was older than you are, he was diagnosed in Jan 2008 and his initial melanoma was 10.5 mm and also on his scalp and ulcerated. He had the WLE and SNB and they thought they got it all and the SNB was negative.
9 months later he had another show up also on his scalp and he had a total of 4 surgeries. Then in Oct. 2010 he went for his checkup and we had noticed the one area that he had a surgery in was no longer sunk in but was filling in. He felt fine and were hoping for good news but unfortunately it was a tumor pressing on his C1-C2 cervical spine that was unresectable because it would have left him a paraplegic. So onto scans which showed it had metastisized in the liver and lungs as well. In March 2011 he started on a clinical trial with Ipi (Yervoy) 10 mg/kg and GM-CSF. He has been NED since Oct. 2012. If you would like to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- March 14, 2017 at 3:28 am
Hello Gene, my dad has recently had surgery for melanoma on the back of his head and we are waiting to see if it has come back or not. If so he may need another surgery. I was wondering what was the lapse of time in between the 4 surgeries your husband had? My dad had one and it was very hard so I cant imagine 4! You guys are very tough. Hoping your husband is still cancer free, sincerely, Nick Hartmann.
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- July 5, 2014 at 9:06 pm
Hello,
While my husband was older than you are, he was diagnosed in Jan 2008 and his initial melanoma was 10.5 mm and also on his scalp and ulcerated. He had the WLE and SNB and they thought they got it all and the SNB was negative.
9 months later he had another show up also on his scalp and he had a total of 4 surgeries. Then in Oct. 2010 he went for his checkup and we had noticed the one area that he had a surgery in was no longer sunk in but was filling in. He felt fine and were hoping for good news but unfortunately it was a tumor pressing on his C1-C2 cervical spine that was unresectable because it would have left him a paraplegic. So onto scans which showed it had metastisized in the liver and lungs as well. In March 2011 he started on a clinical trial with Ipi (Yervoy) 10 mg/kg and GM-CSF. He has been NED since Oct. 2012. If you would like to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- July 5, 2014 at 9:06 pm
Hello,
While my husband was older than you are, he was diagnosed in Jan 2008 and his initial melanoma was 10.5 mm and also on his scalp and ulcerated. He had the WLE and SNB and they thought they got it all and the SNB was negative.
9 months later he had another show up also on his scalp and he had a total of 4 surgeries. Then in Oct. 2010 he went for his checkup and we had noticed the one area that he had a surgery in was no longer sunk in but was filling in. He felt fine and were hoping for good news but unfortunately it was a tumor pressing on his C1-C2 cervical spine that was unresectable because it would have left him a paraplegic. So onto scans which showed it had metastisized in the liver and lungs as well. In March 2011 he started on a clinical trial with Ipi (Yervoy) 10 mg/kg and GM-CSF. He has been NED since Oct. 2012. If you would like to read more about his journey check out his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- July 13, 2014 at 12:50 pm
I am 30 and had 2 melanoma's (scalp and buttock) last year. I had a very similar experience to others that have responded. My initial excision was left open until we got results back (about a week) and while the bolster looks kinda gross, it's only a week! My best advice is to stay positive and ask questions. My husband went to all of my appointments, as did my mom, and it was nice having other people there to ask questions that I didn't think of. I ended up having a total of 5 surgeries because the melanoma had spread to lymph nodes in both my groin and my neck. I got through it, you can too!! Just be open with your doctors, make sure they are someone you trust.
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- July 13, 2014 at 12:50 pm
I am 30 and had 2 melanoma's (scalp and buttock) last year. I had a very similar experience to others that have responded. My initial excision was left open until we got results back (about a week) and while the bolster looks kinda gross, it's only a week! My best advice is to stay positive and ask questions. My husband went to all of my appointments, as did my mom, and it was nice having other people there to ask questions that I didn't think of. I ended up having a total of 5 surgeries because the melanoma had spread to lymph nodes in both my groin and my neck. I got through it, you can too!! Just be open with your doctors, make sure they are someone you trust.
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- July 13, 2014 at 12:50 pm
I am 30 and had 2 melanoma's (scalp and buttock) last year. I had a very similar experience to others that have responded. My initial excision was left open until we got results back (about a week) and while the bolster looks kinda gross, it's only a week! My best advice is to stay positive and ask questions. My husband went to all of my appointments, as did my mom, and it was nice having other people there to ask questions that I didn't think of. I ended up having a total of 5 surgeries because the melanoma had spread to lymph nodes in both my groin and my neck. I got through it, you can too!! Just be open with your doctors, make sure they are someone you trust.
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- July 23, 2014 at 10:00 am
So… I have just had the pathology results come back clear. I have had PET scan, CT scan and Lymphoscinigraphy done all within a week of being diagnosed. I also had a 2cm wide excision with a complex flap. About 30 staples and stitches.
Everything has come back clear so far, I have to have 4 month ultrasounds for the next 2 years. I hope this is he end of melanoma for me for now. Very full on month and very emotional. Thank for your responses and anything else or info on what could happen would still be appreciated. Thanks
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- July 23, 2014 at 10:00 am
So… I have just had the pathology results come back clear. I have had PET scan, CT scan and Lymphoscinigraphy done all within a week of being diagnosed. I also had a 2cm wide excision with a complex flap. About 30 staples and stitches.
Everything has come back clear so far, I have to have 4 month ultrasounds for the next 2 years. I hope this is he end of melanoma for me for now. Very full on month and very emotional. Thank for your responses and anything else or info on what could happen would still be appreciated. Thanks
-
- July 23, 2014 at 10:00 am
So… I have just had the pathology results come back clear. I have had PET scan, CT scan and Lymphoscinigraphy done all within a week of being diagnosed. I also had a 2cm wide excision with a complex flap. About 30 staples and stitches.
Everything has come back clear so far, I have to have 4 month ultrasounds for the next 2 years. I hope this is he end of melanoma for me for now. Very full on month and very emotional. Thank for your responses and anything else or info on what could happen would still be appreciated. Thanks
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- May 20, 2015 at 11:44 am
hey all. ….
So it has been 10 months and I'm back with a enlarged sentinel node in my neck, I'm waiting my biopsy results and I'm not confident.
Can anyone share any stories about an enlarged node this far out after initial discovery of their melanoma.
I have had regular ultrasounds and check in the last 10 months.
i am a little worried and don't know what to expect.
thanks in advance
-
- August 14, 2015 at 11:13 pm
Hope everything came back fine on your lymph node. I just got diagnosed with a recurrence of a 2.15 mm melanoma of the scalp (or possible in-transit metastasis) five years after having a WLE for my first occurrence. In both instances there was no epidermal component so not sure where the primary is or was. I will have another WLE, bigger this time, and will have a full-thickness skin graft from my upper chest/neck area. Since I am mostly bald I am hoping for an acceptable cosmetic result…
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- September 8, 2015 at 4:08 am
Hi Mark! That's a bummer that you've had a recurrence after five years. My husband was diagnosed in Nivember with a 1.25mm lesion on his scalp. He had a WLE and also SNB in December, with clean reports of lymph nodes. A month later while at his follow up surgery visit, the doctor noticed a recurrence (in-transit) within about 2 inches of scar. That moved his stage from 1a to 3b. Since then he has had 2 more in-transits on different areas of his head. His next scans are in two weeks and I'm really worried it's going to show up in lymph nodes or organs. Guess that's everyone's biggest fear. I rarely see others who mention scalp melanoma or in-transits so your post intrigued me. I hope that your next WLE goes well and that they are able to capture all cells and leave you cancer free. This in-transit thing is so hard for me to accept because they have no treatment option at this stage so it's "watch and wait". Good luck on things and please keep us posted.
Kim
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- March 14, 2017 at 3:21 am
Hi Kim, my dad got surgery 3 months ago and now has a weird color appearing near his scar just like in your description. We are waiting for results to see if the melanoma is back or not. I would love to know how your husband handled the treatments since your last reply. Hope all is well, sincerly,Nick Hartmann.
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- September 8, 2015 at 4:08 am
Hi Mark! That's a bummer that you've had a recurrence after five years. My husband was diagnosed in Nivember with a 1.25mm lesion on his scalp. He had a WLE and also SNB in December, with clean reports of lymph nodes. A month later while at his follow up surgery visit, the doctor noticed a recurrence (in-transit) within about 2 inches of scar. That moved his stage from 1a to 3b. Since then he has had 2 more in-transits on different areas of his head. His next scans are in two weeks and I'm really worried it's going to show up in lymph nodes or organs. Guess that's everyone's biggest fear. I rarely see others who mention scalp melanoma or in-transits so your post intrigued me. I hope that your next WLE goes well and that they are able to capture all cells and leave you cancer free. This in-transit thing is so hard for me to accept because they have no treatment option at this stage so it's "watch and wait". Good luck on things and please keep us posted.
Kim
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- September 8, 2015 at 4:08 am
Hi Mark! That's a bummer that you've had a recurrence after five years. My husband was diagnosed in Nivember with a 1.25mm lesion on his scalp. He had a WLE and also SNB in December, with clean reports of lymph nodes. A month later while at his follow up surgery visit, the doctor noticed a recurrence (in-transit) within about 2 inches of scar. That moved his stage from 1a to 3b. Since then he has had 2 more in-transits on different areas of his head. His next scans are in two weeks and I'm really worried it's going to show up in lymph nodes or organs. Guess that's everyone's biggest fear. I rarely see others who mention scalp melanoma or in-transits so your post intrigued me. I hope that your next WLE goes well and that they are able to capture all cells and leave you cancer free. This in-transit thing is so hard for me to accept because they have no treatment option at this stage so it's "watch and wait". Good luck on things and please keep us posted.
Kim
-
- August 14, 2015 at 11:13 pm
Hope everything came back fine on your lymph node. I just got diagnosed with a recurrence of a 2.15 mm melanoma of the scalp (or possible in-transit metastasis) five years after having a WLE for my first occurrence. In both instances there was no epidermal component so not sure where the primary is or was. I will have another WLE, bigger this time, and will have a full-thickness skin graft from my upper chest/neck area. Since I am mostly bald I am hoping for an acceptable cosmetic result…
-
- August 14, 2015 at 11:13 pm
Hope everything came back fine on your lymph node. I just got diagnosed with a recurrence of a 2.15 mm melanoma of the scalp (or possible in-transit metastasis) five years after having a WLE for my first occurrence. In both instances there was no epidermal component so not sure where the primary is or was. I will have another WLE, bigger this time, and will have a full-thickness skin graft from my upper chest/neck area. Since I am mostly bald I am hoping for an acceptable cosmetic result…
-
- May 20, 2015 at 11:44 am
hey all. ….
So it has been 10 months and I'm back with a enlarged sentinel node in my neck, I'm waiting my biopsy results and I'm not confident.
Can anyone share any stories about an enlarged node this far out after initial discovery of their melanoma.
I have had regular ultrasounds and check in the last 10 months.
i am a little worried and don't know what to expect.
thanks in advance
-
- May 20, 2015 at 11:44 am
hey all. ….
So it has been 10 months and I'm back with a enlarged sentinel node in my neck, I'm waiting my biopsy results and I'm not confident.
Can anyone share any stories about an enlarged node this far out after initial discovery of their melanoma.
I have had regular ultrasounds and check in the last 10 months.
i am a little worried and don't know what to expect.
thanks in advance
-
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