Recurrence Likelihood, Scalp Melanoma

Hello,

Welcome to the group although sorry you had to come here but it is a good place with many with a wealth of information and much support.

My husband also had melanoma on his head but he was 10.5 mm so he started at a Stage III his SN came back negative, he did not do the CLND but his scans came back clear as well until the next lesion was found.  He was first diagnosed in 2008 and in 2010 progressed to Stage IV and started a clinical trial in March 2011 became NED in Oct. 2012.  So if you would like to read about his journey you can check out his profile.

He was much worse than yours so I can't answer on statistics you were talking about and we are in the US so some of our treatments aren't the same as yours but many here are from other countries and they can chime in.

Judy (loving wife of Gene Stage IV and now NED for over 3 years.)

Hello,

Welcome to the group although sorry you had to come here but it is a good place with many with a wealth of information and much support.

My husband also had melanoma on his head but he was 10.5 mm so he started at a Stage III his SN came back negative, he did not do the CLND but his scans came back clear as well until the next lesion was found.  He was first diagnosed in 2008 and in 2010 progressed to Stage IV and started a clinical trial in March 2011 became NED in Oct. 2012.  So if you would like to read about his journey you can check out his profile.

He was much worse than yours so I can't answer on statistics you were talking about and we are in the US so some of our treatments aren't the same as yours but many here are from other countries and they can chime in.

Judy (loving wife of Gene Stage IV and now NED for over 3 years.)

Hello,

Welcome to the group although sorry you had to come here but it is a good place with many with a wealth of information and much support.

My husband also had melanoma on his head but he was 10.5 mm so he started at a Stage III his SN came back negative, he did not do the CLND but his scans came back clear as well until the next lesion was found.  He was first diagnosed in 2008 and in 2010 progressed to Stage IV and started a clinical trial in March 2011 became NED in Oct. 2012.  So if you would like to read about his journey you can check out his profile.

He was much worse than yours so I can't answer on statistics you were talking about and we are in the US so some of our treatments aren't the same as yours but many here are from other countries and they can chime in.

Judy (loving wife of Gene Stage IV and now NED for over 3 years.)

Hi Greg,

Welcome!  Sorry you're here, but you've come to a good place!

I have just a few observations about this board, statistics, and melanoma in general.

1) This board is not a good representative sample of melanoma patients.  All are welcome and encouraged to participate (except those pesky spammers!!) but in general, what you'll find here are early stage initially diagnosed, the exceptions and late stage patents looking for info and wanting to keep up on treatments and friends.   It is biased toward people who are either early in their melanoma journey and need information and support, or those who have progressed and need information and support. Again in general, after the initial shock of diagnosis and treatment, many people with early stage melanoma get on with their life and don't come back to this board.  And this is good. 

2) Everyone is interested in recurrence statistics, but more often than not we want to know if *we* will have a recurrence.  Statistics unfortunately won't tell us that.  Even with a theoretical 95% chance of recurrence, someone has to be in the 5%. That could be you, or me.  I'm praying it's both you and me!

3) In general, melanoma statistics are old. This is not the fault of researcher not updating their work, but rather an indication that the melanoma treatment world has radically changed, and the research isn't mature enough to have 5 and 10 year survival statistics. Keep this in mind when you read the statistics and always look for the date the stats were published.  The closer that date is to today, the better.  

4) I was the one who found my melanoma and all my various recurrences.  I knew the norms for me.  Because of this I don't (solely) rely on my Dr to keep watch and I chose my Dr based on how well he knows his stuff and how well he listens to (and believes / translates) me.  I'm not saying it's all up to you, but rather that you're the critical component in the team. Know what's normal for you, listen to your body and find a Dr. you're comfortable with and who listens to you.  Be your own best advocate.

5) Finally, as a fellow believer, I say that your hope is in the right place.  Greg is blessed!  You don't ask this, but for me the question isn't "why me?" but "why not me"?  God doesn't owe me anything, yet he has given me his very presence. And having melanoma has shown me this.  I would not wish Mel on anyone, but my prayers are that in and through it, I (and you) will grow in the full knowledge of Christ in ways we would not have otherwise. 

Shalom,

Julie

Hi Greg,

Welcome!  Sorry you're here, but you've come to a good place!

I have just a few observations about this board, statistics, and melanoma in general.

1) This board is not a good representative sample of melanoma patients.  All are welcome and encouraged to participate (except those pesky spammers!!) but in general, what you'll find here are early stage initially diagnosed, the exceptions and late stage patents looking for info and wanting to keep up on treatments and friends.   It is biased toward people who are either early in their melanoma journey and need information and support, or those who have progressed and need information and support. Again in general, after the initial shock of diagnosis and treatment, many people with early stage melanoma get on with their life and don't come back to this board.  And this is good. 

2) Everyone is interested in recurrence statistics, but more often than not we want to know if *we* will have a recurrence.  Statistics unfortunately won't tell us that.  Even with a theoretical 95% chance of recurrence, someone has to be in the 5%. That could be you, or me.  I'm praying it's both you and me!

3) In general, melanoma statistics are old. This is not the fault of researcher not updating their work, but rather an indication that the melanoma treatment world has radically changed, and the research isn't mature enough to have 5 and 10 year survival statistics. Keep this in mind when you read the statistics and always look for the date the stats were published.  The closer that date is to today, the better.  

4) I was the one who found my melanoma and all my various recurrences.  I knew the norms for me.  Because of this I don't (solely) rely on my Dr to keep watch and I chose my Dr based on how well he knows his stuff and how well he listens to (and believes / translates) me.  I'm not saying it's all up to you, but rather that you're the critical component in the team. Know what's normal for you, listen to your body and find a Dr. you're comfortable with and who listens to you.  Be your own best advocate.

5) Finally, as a fellow believer, I say that your hope is in the right place.  Greg is blessed!  You don't ask this, but for me the question isn't "why me?" but "why not me"?  God doesn't owe me anything, yet he has given me his very presence. And having melanoma has shown me this.  I would not wish Mel on anyone, but my prayers are that in and through it, I (and you) will grow in the full knowledge of Christ in ways we would not have otherwise. 

Shalom,

Julie

Hi Greg,

Welcome!  Sorry you're here, but you've come to a good place!

I have just a few observations about this board, statistics, and melanoma in general.

1) This board is not a good representative sample of melanoma patients.  All are welcome and encouraged to participate (except those pesky spammers!!) but in general, what you'll find here are early stage initially diagnosed, the exceptions and late stage patents looking for info and wanting to keep up on treatments and friends.   It is biased toward people who are either early in their melanoma journey and need information and support, or those who have progressed and need information and support. Again in general, after the initial shock of diagnosis and treatment, many people with early stage melanoma get on with their life and don't come back to this board.  And this is good. 

2) Everyone is interested in recurrence statistics, but more often than not we want to know if *we* will have a recurrence.  Statistics unfortunately won't tell us that.  Even with a theoretical 95% chance of recurrence, someone has to be in the 5%. That could be you, or me.  I'm praying it's both you and me!

3) In general, melanoma statistics are old. This is not the fault of researcher not updating their work, but rather an indication that the melanoma treatment world has radically changed, and the research isn't mature enough to have 5 and 10 year survival statistics. Keep this in mind when you read the statistics and always look for the date the stats were published.  The closer that date is to today, the better.  

4) I was the one who found my melanoma and all my various recurrences.  I knew the norms for me.  Because of this I don't (solely) rely on my Dr to keep watch and I chose my Dr based on how well he knows his stuff and how well he listens to (and believes / translates) me.  I'm not saying it's all up to you, but rather that you're the critical component in the team. Know what's normal for you, listen to your body and find a Dr. you're comfortable with and who listens to you.  Be your own best advocate.

5) Finally, as a fellow believer, I say that your hope is in the right place.  Greg is blessed!  You don't ask this, but for me the question isn't "why me?" but "why not me"?  God doesn't owe me anything, yet he has given me his very presence. And having melanoma has shown me this.  I would not wish Mel on anyone, but my prayers are that in and through it, I (and you) will grow in the full knowledge of Christ in ways we would not have otherwise. 

Shalom,

Julie

Hi and welcome!

First of all, try to relax and breathe! Both Judy and Julie have inspired me numerous times and they are so "spot on" (no pun intended) with their knowledge and information. This site is great for reading and learning as well as support from those who are in touch. But, it's so true that so many are active during diagnosis or during later stage while seeking advice on treatments, but there are thousands who are out there living life and don't stay as frequent. It's tough because you read stories and then never know the outcomes on so many, only praying for their success and well being. Remember there are tons of people who are not online and who succeed in living with melanoma. Stay positive and forget stats! 

My husband also had a scalp melanoma and had a WLE and SLNB in December 2014, so a year before you. He had clear margins and clean nodes, as well and his lesion was 1.25mm deep. His mitosis rate was 4 so that was his dilemma. Not to scare you (hesitated on even answering this post because I don't ever want to scare anyone or try to imply that your situation is the same) He has had some recurrences on his scalp but they were caught and removed with punch biopsies. He is doing great though! (Clean margins) His last one that was found and biopsied was in September. I'm praying they have stopped now and the melanoma will remain quiet. It's a horrible feeling not knowing what's going on but you then rely on your faith for strength. He had a biopsy in December while seeing doctors after scans that ended up being basal cell. Never dreamed I'd be happy about basal cell carcinoma but hey, at least it wasn't melanoma! It was on his shoulder and he will have a MOH's procedure in March to get clean margins. He has a PET scan and neck ultrasounds every 3 months and is doing no treatments other than just close monitoring. He had a rash 2 weeks ago show up on his chest and back so of course, our minds immediately go to thinking its cancer related. Went to the dermatologist last Friday and it was treated with a steroid cream. No one seems to think it's at all related to the melanoma. Just a random rash to keep us on our toes!  But, this is all to say that Julie is correct in staying very in tune with your body and stay vigilant watching for anything new. I'm like a monkey always checking my husband's head now! Hopefully you have a melanoma specialist who will watch you closely as well. 

The odds are very much in your favor of no recurrence so try to relax and exhale! My husband's was the exception and I didn't tell you that to scare you at all, only told you because i care and want you to stay watchful. Melanoma is tricky and unfair but just read these three stories from Judy, Julie and I and know that we are all here to say you can beat this disease! Chances are very good that you already have! 🙂

Stay in touch! Please! 

Kim

Hi and welcome!

First of all, try to relax and breathe! Both Judy and Julie have inspired me numerous times and they are so "spot on" (no pun intended) with their knowledge and information. This site is great for reading and learning as well as support from those who are in touch. But, it's so true that so many are active during diagnosis or during later stage while seeking advice on treatments, but there are thousands who are out there living life and don't stay as frequent. It's tough because you read stories and then never know the outcomes on so many, only praying for their success and well being. Remember there are tons of people who are not online and who succeed in living with melanoma. Stay positive and forget stats! 

My husband also had a scalp melanoma and had a WLE and SLNB in December 2014, so a year before you. He had clear margins and clean nodes, as well and his lesion was 1.25mm deep. His mitosis rate was 4 so that was his dilemma. Not to scare you (hesitated on even answering this post because I don't ever want to scare anyone or try to imply that your situation is the same) He has had some recurrences on his scalp but they were caught and removed with punch biopsies. He is doing great though! (Clean margins) His last one that was found and biopsied was in September. I'm praying they have stopped now and the melanoma will remain quiet. It's a horrible feeling not knowing what's going on but you then rely on your faith for strength. He had a biopsy in December while seeing doctors after scans that ended up being basal cell. Never dreamed I'd be happy about basal cell carcinoma but hey, at least it wasn't melanoma! It was on his shoulder and he will have a MOH's procedure in March to get clean margins. He has a PET scan and neck ultrasounds every 3 months and is doing no treatments other than just close monitoring. He had a rash 2 weeks ago show up on his chest and back so of course, our minds immediately go to thinking its cancer related. Went to the dermatologist last Friday and it was treated with a steroid cream. No one seems to think it's at all related to the melanoma. Just a random rash to keep us on our toes!  But, this is all to say that Julie is correct in staying very in tune with your body and stay vigilant watching for anything new. I'm like a monkey always checking my husband's head now! Hopefully you have a melanoma specialist who will watch you closely as well. 

The odds are very much in your favor of no recurrence so try to relax and exhale! My husband's was the exception and I didn't tell you that to scare you at all, only told you because i care and want you to stay watchful. Melanoma is tricky and unfair but just read these three stories from Judy, Julie and I and know that we are all here to say you can beat this disease! Chances are very good that you already have! 🙂

Stay in touch! Please! 

Kim

Hi and welcome!

First of all, try to relax and breathe! Both Judy and Julie have inspired me numerous times and they are so "spot on" (no pun intended) with their knowledge and information. This site is great for reading and learning as well as support from those who are in touch. But, it's so true that so many are active during diagnosis or during later stage while seeking advice on treatments, but there are thousands who are out there living life and don't stay as frequent. It's tough because you read stories and then never know the outcomes on so many, only praying for their success and well being. Remember there are tons of people who are not online and who succeed in living with melanoma. Stay positive and forget stats! 

My husband also had a scalp melanoma and had a WLE and SLNB in December 2014, so a year before you. He had clear margins and clean nodes, as well and his lesion was 1.25mm deep. His mitosis rate was 4 so that was his dilemma. Not to scare you (hesitated on even answering this post because I don't ever want to scare anyone or try to imply that your situation is the same) He has had some recurrences on his scalp but they were caught and removed with punch biopsies. He is doing great though! (Clean margins) His last one that was found and biopsied was in September. I'm praying they have stopped now and the melanoma will remain quiet. It's a horrible feeling not knowing what's going on but you then rely on your faith for strength. He had a biopsy in December while seeing doctors after scans that ended up being basal cell. Never dreamed I'd be happy about basal cell carcinoma but hey, at least it wasn't melanoma! It was on his shoulder and he will have a MOH's procedure in March to get clean margins. He has a PET scan and neck ultrasounds every 3 months and is doing no treatments other than just close monitoring. He had a rash 2 weeks ago show up on his chest and back so of course, our minds immediately go to thinking its cancer related. Went to the dermatologist last Friday and it was treated with a steroid cream. No one seems to think it's at all related to the melanoma. Just a random rash to keep us on our toes!  But, this is all to say that Julie is correct in staying very in tune with your body and stay vigilant watching for anything new. I'm like a monkey always checking my husband's head now! Hopefully you have a melanoma specialist who will watch you closely as well. 

The odds are very much in your favor of no recurrence so try to relax and exhale! My husband's was the exception and I didn't tell you that to scare you at all, only told you because i care and want you to stay watchful. Melanoma is tricky and unfair but just read these three stories from Judy, Julie and I and know that we are all here to say you can beat this disease! Chances are very good that you already have! 🙂

Stay in touch! Please! 

Kim

Hi Greg,

I would agree with Julie in that this forum is only a small snapshot of those who have been affected by melanoma. The most important thing to keep in mind with melanoma, or any cancer, is that it doesn't make sense. Cancer does not play by any rules or statistics. It is cells behaving in a manner within the body that they shouldn't.

I was originally diagnosed with a 1.4 mm nodular scalp melanoma (visible in my profile pic.) It was removed WLE along with 8 nodes in November 2014. All the margins and nodes were clear. In January 2015, I noticed a small black dot right in the center of the scar tissue of the WLE. My doctors could not determine if it was residual melanoma or in transit.

Do not worry about things that are outside of your control. Cross each bridge as you get to them- that is my advice. I wish you the best!

Hi Greg,

I would agree with Julie in that this forum is only a small snapshot of those who have been affected by melanoma. The most important thing to keep in mind with melanoma, or any cancer, is that it doesn't make sense. Cancer does not play by any rules or statistics. It is cells behaving in a manner within the body that they shouldn't.

I was originally diagnosed with a 1.4 mm nodular scalp melanoma (visible in my profile pic.) It was removed WLE along with 8 nodes in November 2014. All the margins and nodes were clear. In January 2015, I noticed a small black dot right in the center of the scar tissue of the WLE. My doctors could not determine if it was residual melanoma or in transit.

Do not worry about things that are outside of your control. Cross each bridge as you get to them- that is my advice. I wish you the best!

Hi Greg,

I would agree with Julie in that this forum is only a small snapshot of those who have been affected by melanoma. The most important thing to keep in mind with melanoma, or any cancer, is that it doesn't make sense. Cancer does not play by any rules or statistics. It is cells behaving in a manner within the body that they shouldn't.

I was originally diagnosed with a 1.4 mm nodular scalp melanoma (visible in my profile pic.) It was removed WLE along with 8 nodes in November 2014. All the margins and nodes were clear. In January 2015, I noticed a small black dot right in the center of the scar tissue of the WLE. My doctors could not determine if it was residual melanoma or in transit.

Do not worry about things that are outside of your control. Cross each bridge as you get to them- that is my advice. I wish you the best!