› Forums › General Melanoma Community › I need help for my cousin
- This topic has 57 replies, 6 voices, and was last updated 10 years, 6 months ago by Janner.
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- October 1, 2013 at 2:31 am
Hey Everyone,
I need help for my cousin. She is not a blood cousin but she was just diagnosed with Melanoma today. She had a biopsy of a mole behind her knee on the back side of her leg removed and it came back as melanoma. I guess it was a punch biopsy but she said it wasn't very deep and the derm said they caught it early. She is asking me what questions to ask and I don't know. It's been so long for me since my initial diagnosis I wouldn't know how to read a path report or know what to ask anymore. I do know she will have to have a WLE but do they do a SNLB too automatically? I told her to ask her derm to refer her to a melanoma specialist not just an oncologist. The derm is talking to the melanoma surgeon and is getting back with her in the morning. I am very concerned for her and she is scared to death. She lost her daughter Amber at age 24 in 2001 to melanoma. I told her about this website so maybe she will come for support and help with her questions. I'm trying to find out what the depth was.
Any help as far as what she should be doing is appreciated.
Thanks everyone for your help
Denise
- Replies
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- October 1, 2013 at 2:39 am
Denise-
I'm sorry…that's horrible! I think for SNLB it is greater than 1mm but I'm not totally sure. I would definitely reach out to Janner. She's definitely could provide direction. I hope all goes well.
Josh
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- October 1, 2013 at 2:42 am
Sorry…its 1mm in depth. My step mom had melanoma too…yes odd no familial ties but step mom. I believe she was .73mm in depth….they didn;t do one but she went for 2nd opinion and told her they should have and should have done it prior to surgery.
Josh
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- October 1, 2013 at 2:42 am
Sorry…its 1mm in depth. My step mom had melanoma too…yes odd no familial ties but step mom. I believe she was .73mm in depth….they didn;t do one but she went for 2nd opinion and told her they should have and should have done it prior to surgery.
Josh
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- October 1, 2013 at 2:42 am
Sorry…its 1mm in depth. My step mom had melanoma too…yes odd no familial ties but step mom. I believe she was .73mm in depth….they didn;t do one but she went for 2nd opinion and told her they should have and should have done it prior to surgery.
Josh
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- October 1, 2013 at 3:04 am
Hi Denise,
No, a SNB is not done automatically – it totally depends on the pathology. Early stages do not need this done. And if her lesion truly is very early, it's unlikely she will really need a melanoma specialist because the surgery itself might be considered "curative". Now, I'm not saying anyone is truly cured, but the WLE might be the only treatment option. Real melanoma specialists often work with people who are stage III/IV, but not as often an early stage person. A derm might be perfectly fine. I can only comment generally because, without the pathology report, we are speculating on what "early" really means.
Best wishes,
Janner
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- October 1, 2013 at 3:04 am
Hi Denise,
No, a SNB is not done automatically – it totally depends on the pathology. Early stages do not need this done. And if her lesion truly is very early, it's unlikely she will really need a melanoma specialist because the surgery itself might be considered "curative". Now, I'm not saying anyone is truly cured, but the WLE might be the only treatment option. Real melanoma specialists often work with people who are stage III/IV, but not as often an early stage person. A derm might be perfectly fine. I can only comment generally because, without the pathology report, we are speculating on what "early" really means.
Best wishes,
Janner
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- October 1, 2013 at 3:08 am
Weird, but I didn't see the other replies before I answered. Was the punch 2mm deep or the lesion? Was it 1mm deep? PATH REPORT!!! If it was truly 1mm, then likely they would suggest doing the SNB. But the total picture provided by the path report is really needed to make any real meaningful comments. There are other factor to take into consideration.
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- October 1, 2013 at 3:08 am
Weird, but I didn't see the other replies before I answered. Was the punch 2mm deep or the lesion? Was it 1mm deep? PATH REPORT!!! If it was truly 1mm, then likely they would suggest doing the SNB. But the total picture provided by the path report is really needed to make any real meaningful comments. There are other factor to take into consideration.
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- October 1, 2013 at 3:29 am
She said the melanoma was 2mm deep no ulceration and no word on mitotic rate. She doesn't have the path report because she was told over the phone. I told her to get it right away. I feel so bad for her because she is so scared because of what she went through with her daughter. Is 2 mm considered deep? I know mine was something like 14mm and ulcerated so it was really bad. I told her she will probably be a stage 1A which after surgery is 95% cured. I guess it will depend on the surgery and reports to follow. My heart is breaking for her because she lost her daughter to this and she's really been there for me and now she has to deal with it.
Thanks for your help!!
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- October 1, 2013 at 3:29 am
She said the melanoma was 2mm deep no ulceration and no word on mitotic rate. She doesn't have the path report because she was told over the phone. I told her to get it right away. I feel so bad for her because she is so scared because of what she went through with her daughter. Is 2 mm considered deep? I know mine was something like 14mm and ulcerated so it was really bad. I told her she will probably be a stage 1A which after surgery is 95% cured. I guess it will depend on the surgery and reports to follow. My heart is breaking for her because she lost her daughter to this and she's really been there for me and now she has to deal with it.
Thanks for your help!!
-
- October 1, 2013 at 3:29 am
She said the melanoma was 2mm deep no ulceration and no word on mitotic rate. She doesn't have the path report because she was told over the phone. I told her to get it right away. I feel so bad for her because she is so scared because of what she went through with her daughter. Is 2 mm considered deep? I know mine was something like 14mm and ulcerated so it was really bad. I told her she will probably be a stage 1A which after surgery is 95% cured. I guess it will depend on the surgery and reports to follow. My heart is breaking for her because she lost her daughter to this and she's really been there for me and now she has to deal with it.
Thanks for your help!!
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- October 1, 2013 at 4:23 am
2mm deep may be stage 2, so a bit more serious. Stage 1a ends at 1mm and stage 1b ends at 2mm. But ulceration may bump up the stage. Mitosis is only used to differentiate between stage 1a and 1b. So getting the path report is key to know where she really stands. -
- October 1, 2013 at 2:16 pm
I am very sorry to learn that you lost your daughter to melanoma and now have to face this frightening diagnosis yourself. That's so awful! However, please know that we are all here to support you and to share with you what we can of our knowledge and experience. Denise has been an amazing inspiration and helpful participant on this forum, so I'm sure she will be very helpful to you, too.
As Janner (our melanoma guru) said, to be most helpful to you we will need to see your whole pathology report. However, from what you have said so far it sounds as though you caught this lesion while it is still very small. You will want a wide local excision (WLE) to make certain it is all completely gone, but you will probably not need a sentinal node biopsy (SNB). After that, I expect that you will have no further trouble with melanoma.
However, please do post your biopsy report when you can. And give Denise a hug for me!
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- October 1, 2013 at 2:16 pm
I am very sorry to learn that you lost your daughter to melanoma and now have to face this frightening diagnosis yourself. That's so awful! However, please know that we are all here to support you and to share with you what we can of our knowledge and experience. Denise has been an amazing inspiration and helpful participant on this forum, so I'm sure she will be very helpful to you, too.
As Janner (our melanoma guru) said, to be most helpful to you we will need to see your whole pathology report. However, from what you have said so far it sounds as though you caught this lesion while it is still very small. You will want a wide local excision (WLE) to make certain it is all completely gone, but you will probably not need a sentinal node biopsy (SNB). After that, I expect that you will have no further trouble with melanoma.
However, please do post your biopsy report when you can. And give Denise a hug for me!
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- October 1, 2013 at 2:16 pm
I am very sorry to learn that you lost your daughter to melanoma and now have to face this frightening diagnosis yourself. That's so awful! However, please know that we are all here to support you and to share with you what we can of our knowledge and experience. Denise has been an amazing inspiration and helpful participant on this forum, so I'm sure she will be very helpful to you, too.
As Janner (our melanoma guru) said, to be most helpful to you we will need to see your whole pathology report. However, from what you have said so far it sounds as though you caught this lesion while it is still very small. You will want a wide local excision (WLE) to make certain it is all completely gone, but you will probably not need a sentinal node biopsy (SNB). After that, I expect that you will have no further trouble with melanoma.
However, please do post your biopsy report when you can. And give Denise a hug for me!
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- October 1, 2013 at 2:30 pm
Breslow 0.5mm and Clark Level II. So the remaining question is mitosis. Mitosis of <1 makes you stage IA. Any other mitosis makes you stage IB. The WLE is necessary, but you should discuss the SNB with your doc. Stage 1A – probably not. Stage IB – possibly. Some sites do the SNB for every stage IB individual, others do it when the lesion is closer to 1mm. Sometimes looking at the whole path report picture and seeing if it appears "low risk" or has some factors that make it a bit higher risk will determine the next step. But regardless, I've been on this site for a very long time and 0.5mm/CL II is a low risk lesion. I had a similar lesion removed 21 years ago (0.58mm/CL II/No SNB) and am still here to talk about it. We can give you our best "non medical advice" if you can post your pathology report. Sorry you have to join us here, but it sounds like things were truly caught early!
Best wishes,
Janner
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- October 1, 2013 at 2:30 pm
Breslow 0.5mm and Clark Level II. So the remaining question is mitosis. Mitosis of <1 makes you stage IA. Any other mitosis makes you stage IB. The WLE is necessary, but you should discuss the SNB with your doc. Stage 1A – probably not. Stage IB – possibly. Some sites do the SNB for every stage IB individual, others do it when the lesion is closer to 1mm. Sometimes looking at the whole path report picture and seeing if it appears "low risk" or has some factors that make it a bit higher risk will determine the next step. But regardless, I've been on this site for a very long time and 0.5mm/CL II is a low risk lesion. I had a similar lesion removed 21 years ago (0.58mm/CL II/No SNB) and am still here to talk about it. We can give you our best "non medical advice" if you can post your pathology report. Sorry you have to join us here, but it sounds like things were truly caught early!
Best wishes,
Janner
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- October 1, 2013 at 8:24 pm
Thank you Janner. I am sure it will be ok. My daughter was diagnosed at 21 and had the snb. They said she was cured. However it spread through her blood stream and 3 years and 1 week after she passed away at 24. She was so courageous and had a smile that would brighten even the darkest room. She was an inspiration to all that had the pleasure of knowing her. I am sure you can understand my concerns with my own diagnosis. -
- October 1, 2013 at 8:24 pm
Thank you Janner. I am sure it will be ok. My daughter was diagnosed at 21 and had the snb. They said she was cured. However it spread through her blood stream and 3 years and 1 week after she passed away at 24. She was so courageous and had a smile that would brighten even the darkest room. She was an inspiration to all that had the pleasure of knowing her. I am sure you can understand my concerns with my own diagnosis. -
- October 1, 2013 at 8:24 pm
Thank you Janner. I am sure it will be ok. My daughter was diagnosed at 21 and had the snb. They said she was cured. However it spread through her blood stream and 3 years and 1 week after she passed away at 24. She was so courageous and had a smile that would brighten even the darkest room. She was an inspiration to all that had the pleasure of knowing her. I am sure you can understand my concerns with my own diagnosis. -
- October 5, 2013 at 8:04 am
Hello Janner. I had the wide incision on my 1A melanoma. I was told that that was all the treatment I needed. I pulled my daughters original path report and her melanoma was Breslow 1.48 Clark’s IV there was no ulceration. She had SNB. They couldn’t find the path of the dye, so they pulled about 30 nodes. The tested negative. They did not do any follow up treatment. It was not the protocol. However, her melanoma spread through her blood and when rediagnosed, she lived 11 months. I am scared/concerned that that could happen to me. Any thoughts? -
- October 5, 2013 at 2:18 pm
Could it happen? Yes. Is it likely? No. Your daughters lesion was much higher risk than yours based on depth. The SNB is a diagnostic tool only and is not a guarantee of anything. I’m sorry the drainage path was never found with your daughter. Spreading through the blood supply is much rarer than through the lymph vessels. As for you, there is no treatment you can do other than pay attention to change. Moles or anything that seems out of the ordinary for you. Then move on. I know that is easier said than done given your history, but your risk is low and worrying only lets melanoma win again. Stage 1a is an exclusive club with an extremely high survival rate – definitely a different situation from your daughter. Hang in there and let me know if I can help. -
- October 5, 2013 at 5:55 pm
Janner, I seem to recall you mentioning at one point that there is a research effort under way to study the genetic basis (if any) for melanoma. Is that correct? If so, having 3 people in one family afflicted by melanoma might be very helpful to that research effort. Can you comment?
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- October 8, 2013 at 2:19 pm
Three people in multiple generations is what they wanted for the Familial study I was in… or multiple primaries (>2). The genetic defect I have (CDKN2A) is dominant and does not skip generations. However, having the gene gives you a 76% lifetime risk of getting melanoma. Not a sure thing, but the numbers are pretty daunting. Only 2-4% of the melanoma population have this genetic defect. There is another gene that covers <1% of the population and others are thought to exist. In addition, people with DNS may have multiple generations. The info I was given said about 10% of melanomas were thought to have some genetic basis and 90% were sporadic.
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- October 8, 2013 at 2:19 pm
Three people in multiple generations is what they wanted for the Familial study I was in… or multiple primaries (>2). The genetic defect I have (CDKN2A) is dominant and does not skip generations. However, having the gene gives you a 76% lifetime risk of getting melanoma. Not a sure thing, but the numbers are pretty daunting. Only 2-4% of the melanoma population have this genetic defect. There is another gene that covers <1% of the population and others are thought to exist. In addition, people with DNS may have multiple generations. The info I was given said about 10% of melanomas were thought to have some genetic basis and 90% were sporadic.
-
- October 8, 2013 at 2:19 pm
Three people in multiple generations is what they wanted for the Familial study I was in… or multiple primaries (>2). The genetic defect I have (CDKN2A) is dominant and does not skip generations. However, having the gene gives you a 76% lifetime risk of getting melanoma. Not a sure thing, but the numbers are pretty daunting. Only 2-4% of the melanoma population have this genetic defect. There is another gene that covers <1% of the population and others are thought to exist. In addition, people with DNS may have multiple generations. The info I was given said about 10% of melanomas were thought to have some genetic basis and 90% were sporadic.
-
- October 5, 2013 at 5:55 pm
Janner, I seem to recall you mentioning at one point that there is a research effort under way to study the genetic basis (if any) for melanoma. Is that correct? If so, having 3 people in one family afflicted by melanoma might be very helpful to that research effort. Can you comment?
-
- October 5, 2013 at 5:55 pm
Janner, I seem to recall you mentioning at one point that there is a research effort under way to study the genetic basis (if any) for melanoma. Is that correct? If so, having 3 people in one family afflicted by melanoma might be very helpful to that research effort. Can you comment?
-
- October 5, 2013 at 2:18 pm
Could it happen? Yes. Is it likely? No. Your daughters lesion was much higher risk than yours based on depth. The SNB is a diagnostic tool only and is not a guarantee of anything. I’m sorry the drainage path was never found with your daughter. Spreading through the blood supply is much rarer than through the lymph vessels. As for you, there is no treatment you can do other than pay attention to change. Moles or anything that seems out of the ordinary for you. Then move on. I know that is easier said than done given your history, but your risk is low and worrying only lets melanoma win again. Stage 1a is an exclusive club with an extremely high survival rate – definitely a different situation from your daughter. Hang in there and let me know if I can help. -
- October 5, 2013 at 2:18 pm
Could it happen? Yes. Is it likely? No. Your daughters lesion was much higher risk than yours based on depth. The SNB is a diagnostic tool only and is not a guarantee of anything. I’m sorry the drainage path was never found with your daughter. Spreading through the blood supply is much rarer than through the lymph vessels. As for you, there is no treatment you can do other than pay attention to change. Moles or anything that seems out of the ordinary for you. Then move on. I know that is easier said than done given your history, but your risk is low and worrying only lets melanoma win again. Stage 1a is an exclusive club with an extremely high survival rate – definitely a different situation from your daughter. Hang in there and let me know if I can help. -
- October 6, 2013 at 11:17 am
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- October 6, 2013 at 11:17 am
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- October 6, 2013 at 11:17 am
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- October 5, 2013 at 8:04 am
Hello Janner. I had the wide incision on my 1A melanoma. I was told that that was all the treatment I needed. I pulled my daughters original path report and her melanoma was Breslow 1.48 Clark’s IV there was no ulceration. She had SNB. They couldn’t find the path of the dye, so they pulled about 30 nodes. The tested negative. They did not do any follow up treatment. It was not the protocol. However, her melanoma spread through her blood and when rediagnosed, she lived 11 months. I am scared/concerned that that could happen to me. Any thoughts? -
- October 5, 2013 at 8:04 am
Hello Janner. I had the wide incision on my 1A melanoma. I was told that that was all the treatment I needed. I pulled my daughters original path report and her melanoma was Breslow 1.48 Clark’s IV there was no ulceration. She had SNB. They couldn’t find the path of the dye, so they pulled about 30 nodes. The tested negative. They did not do any follow up treatment. It was not the protocol. However, her melanoma spread through her blood and when rediagnosed, she lived 11 months. I am scared/concerned that that could happen to me. Any thoughts? -
- October 1, 2013 at 2:30 pm
Breslow 0.5mm and Clark Level II. So the remaining question is mitosis. Mitosis of <1 makes you stage IA. Any other mitosis makes you stage IB. The WLE is necessary, but you should discuss the SNB with your doc. Stage 1A – probably not. Stage IB – possibly. Some sites do the SNB for every stage IB individual, others do it when the lesion is closer to 1mm. Sometimes looking at the whole path report picture and seeing if it appears "low risk" or has some factors that make it a bit higher risk will determine the next step. But regardless, I've been on this site for a very long time and 0.5mm/CL II is a low risk lesion. I had a similar lesion removed 21 years ago (0.58mm/CL II/No SNB) and am still here to talk about it. We can give you our best "non medical advice" if you can post your pathology report. Sorry you have to join us here, but it sounds like things were truly caught early!
Best wishes,
Janner
-
- October 1, 2013 at 4:23 am
2mm deep may be stage 2, so a bit more serious. Stage 1a ends at 1mm and stage 1b ends at 2mm. But ulceration may bump up the stage. Mitosis is only used to differentiate between stage 1a and 1b. So getting the path report is key to know where she really stands. -
- October 1, 2013 at 4:23 am
2mm deep may be stage 2, so a bit more serious. Stage 1a ends at 1mm and stage 1b ends at 2mm. But ulceration may bump up the stage. Mitosis is only used to differentiate between stage 1a and 1b. So getting the path report is key to know where she really stands. -
- October 1, 2013 at 3:08 am
Weird, but I didn't see the other replies before I answered. Was the punch 2mm deep or the lesion? Was it 1mm deep? PATH REPORT!!! If it was truly 1mm, then likely they would suggest doing the SNB. But the total picture provided by the path report is really needed to make any real meaningful comments. There are other factor to take into consideration.
-
- October 1, 2013 at 3:04 am
Hi Denise,
No, a SNB is not done automatically – it totally depends on the pathology. Early stages do not need this done. And if her lesion truly is very early, it's unlikely she will really need a melanoma specialist because the surgery itself might be considered "curative". Now, I'm not saying anyone is truly cured, but the WLE might be the only treatment option. Real melanoma specialists often work with people who are stage III/IV, but not as often an early stage person. A derm might be perfectly fine. I can only comment generally because, without the pathology report, we are speculating on what "early" really means.
Best wishes,
Janner
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Tagged: cutaneous melanoma
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