I don’t get it.

Oh, my goodness! You really are between a rock and a hard place, aren't you?! I do not envy you your position one little bit. Not because of your melanoma– you have a lot of reason for optimism and a lot of arrows in your quiver about that. No, my concern is that you are apparently in the habit of deferring to your physician family members about all things medical and that could be a very bad thing when dealing with melanoma. 

The very first thing we tell most melanoma patients, especially those with Stage IV disease or Stage III with high probability of recurrence, is to get yourself to a melanoma Center of Excellence pronto. In the last 3 or 4 years, there has been so much research, so many clinical trials, so many new treatment options, that a general oncologist simply can not keep up with all these changes and developments. Not on top of keeping up with the developments in all the other cancers a general oncologist treats (lung, colon, kidney, breast, etc.). There just are not enough hours in the day. 

However, you seem to have spent your lifetime trusting and obeying your father and brother (like when you said, "He immediately took me to the hospital and had the birthmark removed."). So I think that before you scare yourself silly with outdated statistics and get into the complexities of your treatment options, you need to think about and discuss with your father and your brother whether you should go to and FOLLOW THE RECOMMENDATIONS OF a melanom specialty center or not. If you are going to trust and follow your family's recommendations, that's fine and  you certainly have a right to do that. If you choose to trust and follow the recommendations of a melanoma specialist (which, obviously, is what I would recommend) you have a right to do that. But I don't think that you will be able to do both at once. 

However you decide, it will help us to help you if you include the details of your pathology report in your profile– Breslow depth, mitotic rate, things like that. Also, it will help if you tell us what part of the country you live in and who your main doctor(s) are. In regards to having a complete lymph node dissection, just the other day someone posted a study about whether or not CLND is helpful for people with micrometastases. See the thread "Disease mgmt with positive sentinel lymph node" 

Having a family member in the medical profession can be very helpful when trying to understand the lingo, find clinical trials or get in to see the best specialists in the field. But having a medical family member call the shots about your actual melanoma treatments is, to me, more problematic. 

Oh, my goodness! You really are between a rock and a hard place, aren't you?! I do not envy you your position one little bit. Not because of your melanoma– you have a lot of reason for optimism and a lot of arrows in your quiver about that. No, my concern is that you are apparently in the habit of deferring to your physician family members about all things medical and that could be a very bad thing when dealing with melanoma. 

The very first thing we tell most melanoma patients, especially those with Stage IV disease or Stage III with high probability of recurrence, is to get yourself to a melanoma Center of Excellence pronto. In the last 3 or 4 years, there has been so much research, so many clinical trials, so many new treatment options, that a general oncologist simply can not keep up with all these changes and developments. Not on top of keeping up with the developments in all the other cancers a general oncologist treats (lung, colon, kidney, breast, etc.). There just are not enough hours in the day. 

However, you seem to have spent your lifetime trusting and obeying your father and brother (like when you said, "He immediately took me to the hospital and had the birthmark removed."). So I think that before you scare yourself silly with outdated statistics and get into the complexities of your treatment options, you need to think about and discuss with your father and your brother whether you should go to and FOLLOW THE RECOMMENDATIONS OF a melanom specialty center or not. If you are going to trust and follow your family's recommendations, that's fine and  you certainly have a right to do that. If you choose to trust and follow the recommendations of a melanoma specialist (which, obviously, is what I would recommend) you have a right to do that. But I don't think that you will be able to do both at once. 

However you decide, it will help us to help you if you include the details of your pathology report in your profile– Breslow depth, mitotic rate, things like that. Also, it will help if you tell us what part of the country you live in and who your main doctor(s) are. In regards to having a complete lymph node dissection, just the other day someone posted a study about whether or not CLND is helpful for people with micrometastases. See the thread "Disease mgmt with positive sentinel lymph node" 

Having a family member in the medical profession can be very helpful when trying to understand the lingo, find clinical trials or get in to see the best specialists in the field. But having a medical family member call the shots about your actual melanoma treatments is, to me, more problematic. 

Oh, my goodness! You really are between a rock and a hard place, aren't you?! I do not envy you your position one little bit. Not because of your melanoma– you have a lot of reason for optimism and a lot of arrows in your quiver about that. No, my concern is that you are apparently in the habit of deferring to your physician family members about all things medical and that could be a very bad thing when dealing with melanoma. 

The very first thing we tell most melanoma patients, especially those with Stage IV disease or Stage III with high probability of recurrence, is to get yourself to a melanoma Center of Excellence pronto. In the last 3 or 4 years, there has been so much research, so many clinical trials, so many new treatment options, that a general oncologist simply can not keep up with all these changes and developments. Not on top of keeping up with the developments in all the other cancers a general oncologist treats (lung, colon, kidney, breast, etc.). There just are not enough hours in the day. 

However, you seem to have spent your lifetime trusting and obeying your father and brother (like when you said, "He immediately took me to the hospital and had the birthmark removed."). So I think that before you scare yourself silly with outdated statistics and get into the complexities of your treatment options, you need to think about and discuss with your father and your brother whether you should go to and FOLLOW THE RECOMMENDATIONS OF a melanom specialty center or not. If you are going to trust and follow your family's recommendations, that's fine and  you certainly have a right to do that. If you choose to trust and follow the recommendations of a melanoma specialist (which, obviously, is what I would recommend) you have a right to do that. But I don't think that you will be able to do both at once. 

However you decide, it will help us to help you if you include the details of your pathology report in your profile– Breslow depth, mitotic rate, things like that. Also, it will help if you tell us what part of the country you live in and who your main doctor(s) are. In regards to having a complete lymph node dissection, just the other day someone posted a study about whether or not CLND is helpful for people with micrometastases. See the thread "Disease mgmt with positive sentinel lymph node" 

Having a family member in the medical profession can be very helpful when trying to understand the lingo, find clinical trials or get in to see the best specialists in the field. But having a medical family member call the shots about your actual melanoma treatments is, to me, more problematic. 

Not wanting to scare you but I did have a birthmark develop into a stage 1or 2  melanoma .It was removed and after almost 10 years came back as a stage 4.Probably the most important thing now is to get under the care of a melanoma specialist .You will see that you have a future ahead of you with all the new treatments offered now and in the works with all the new  treatments in trial.Targeted treatment is giving us all a chance to outlive this desease.Keep a PMA (positive mind attitude) and live life.God bless.

                                                                                                                                               aldakota22

Not wanting to scare you but I did have a birthmark develop into a stage 1or 2  melanoma .It was removed and after almost 10 years came back as a stage 4.Probably the most important thing now is to get under the care of a melanoma specialist .You will see that you have a future ahead of you with all the new treatments offered now and in the works with all the new  treatments in trial.Targeted treatment is giving us all a chance to outlive this desease.Keep a PMA (positive mind attitude) and live life.God bless.

                                                                                                                                               aldakota22

Not wanting to scare you but I did have a birthmark develop into a stage 1or 2  melanoma .It was removed and after almost 10 years came back as a stage 4.Probably the most important thing now is to get under the care of a melanoma specialist .You will see that you have a future ahead of you with all the new treatments offered now and in the works with all the new  treatments in trial.Targeted treatment is giving us all a chance to outlive this desease.Keep a PMA (positive mind attitude) and live life.God bless.

                                                                                                                                               aldakota22

Take a deep breath, relax.

You've been given some really good advice about seeking out a melanoma specialist. Most major hospitals should have one. The melanoma specialists are going to be the most up to speed on all the recent breakthroughs and will best know in which direction to steer you.

It's good you're getting the rest of the nodes removed. Yes, lymphedema is a risk but not everyone gets it and there are preventive measures to deal with it. Melanoma needs to be dealt with aggressively and when it's found even in one lymph node, getting the rest of them removed is aggressive. I've even seen the term "potentially curative" associated with that procedure under those conditions. And, I'll take "potentially" any day with this disease!

Don't let the statistics get to you. As a matter of fact, stay away from them because many of them are out of date. With all the recent breakthroughs in research along with newer, more effective treatment options, the statistics 5 years from now will be reflecting much different numbers. The survivor list is growing.

One positive thing to consider is the fact that your PET scan was clear. Having micro-metastes in one lymph node is not a bad place to be with this disease. But you do need to know what's going on with the rest of the nodes.

Take a deep breath, relax.

You've been given some really good advice about seeking out a melanoma specialist. Most major hospitals should have one. The melanoma specialists are going to be the most up to speed on all the recent breakthroughs and will best know in which direction to steer you.

It's good you're getting the rest of the nodes removed. Yes, lymphedema is a risk but not everyone gets it and there are preventive measures to deal with it. Melanoma needs to be dealt with aggressively and when it's found even in one lymph node, getting the rest of them removed is aggressive. I've even seen the term "potentially curative" associated with that procedure under those conditions. And, I'll take "potentially" any day with this disease!

Don't let the statistics get to you. As a matter of fact, stay away from them because many of them are out of date. With all the recent breakthroughs in research along with newer, more effective treatment options, the statistics 5 years from now will be reflecting much different numbers. The survivor list is growing.

One positive thing to consider is the fact that your PET scan was clear. Having micro-metastes in one lymph node is not a bad place to be with this disease. But you do need to know what's going on with the rest of the nodes.

Take a deep breath, relax.

You've been given some really good advice about seeking out a melanoma specialist. Most major hospitals should have one. The melanoma specialists are going to be the most up to speed on all the recent breakthroughs and will best know in which direction to steer you.

It's good you're getting the rest of the nodes removed. Yes, lymphedema is a risk but not everyone gets it and there are preventive measures to deal with it. Melanoma needs to be dealt with aggressively and when it's found even in one lymph node, getting the rest of them removed is aggressive. I've even seen the term "potentially curative" associated with that procedure under those conditions. And, I'll take "potentially" any day with this disease!

Don't let the statistics get to you. As a matter of fact, stay away from them because many of them are out of date. With all the recent breakthroughs in research along with newer, more effective treatment options, the statistics 5 years from now will be reflecting much different numbers. The survivor list is growing.

One positive thing to consider is the fact that your PET scan was clear. Having micro-metastes in one lymph node is not a bad place to be with this disease. But you do need to know what's going on with the rest of the nodes.

I'm with ya!!! I am supposed to be getting married this year as well.  Was also told by my dermatologist that my mole was fine… she only took it off b/c I demanded it  – 1 year after I originally asked her about it!  Was diagnosed with mel in November, 1 positive node in SNB, having dissection next week.  Waiting for PET/CT scan results (getting a bit nervous about those.. should have had results Friday). 

I agree with the others – make sure you are with a melanoma specialist.  I have lots of doctors in the family as well, but you need an objective doctor, and a melanoma specialist. 

I know this post probably doesn't help you…. but it is somehow helpful knowing you are not the only one going though it, or at least it's helpful to me.

I'm with ya!!! I am supposed to be getting married this year as well.  Was also told by my dermatologist that my mole was fine… she only took it off b/c I demanded it  – 1 year after I originally asked her about it!  Was diagnosed with mel in November, 1 positive node in SNB, having dissection next week.  Waiting for PET/CT scan results (getting a bit nervous about those.. should have had results Friday). 

I agree with the others – make sure you are with a melanoma specialist.  I have lots of doctors in the family as well, but you need an objective doctor, and a melanoma specialist. 

I know this post probably doesn't help you…. but it is somehow helpful knowing you are not the only one going though it, or at least it's helpful to me.

I'm with ya!!! I am supposed to be getting married this year as well.  Was also told by my dermatologist that my mole was fine… she only took it off b/c I demanded it  – 1 year after I originally asked her about it!  Was diagnosed with mel in November, 1 positive node in SNB, having dissection next week.  Waiting for PET/CT scan results (getting a bit nervous about those.. should have had results Friday). 

I agree with the others – make sure you are with a melanoma specialist.  I have lots of doctors in the family as well, but you need an objective doctor, and a melanoma specialist. 

I know this post probably doesn't help you…. but it is somehow helpful knowing you are not the only one going though it, or at least it's helpful to me.

Hi, so sorry to welcome you here – and with some complex "stuff" to deal with. Not your melanoma, necessarily, but definitely the family situation!

I'm the daughter of a pediatrician, and that was helpful when my kids were little – I checked every little thing with my father and generally found a way to make sure he was satisfied with our decisions regarding his granddaughters' care and upbringing. He was just one of several medical people in our lives. When my husband got a (Stage 4 metastatic) melanoma diagnosis in 2012 I turned to my cousin-in-law all on the opposite coast  because she's a pediatric dermatologist. She put me directly in touch with the head of the melanoma program at our hospital, who trained in her department several years ago and whom she knew very well. She did not try to give us advice, other than to see to it that we were consulting with someone who understood melanoma at the highest level possible. And, most important, she assured us that she would help us understand anything our chosen melanoma specialist said.

Long story short – the initial staging from the pathology report is not what we now understand. We have been dealing with Stage IIB melanoma. Getting the communication channels open with the RIGHT people has been critical to our mental health, particularly in those early weeks.

Your feeling that all the statistics mean nothing may not go away – and I recommend that you fight for that mental state. It's hard to ignore a brother who is much more knowledgeable about the subject than you are – but perhaps you can "gently" ask him to only give you constructive information. Also, he might be the conduit for information passing from your melanoma specialist to everyone else in your family – that would be really useful. But I really hope you can find a melanoma specialist you connect with – one who gives you all the time you need to understand what's going on and where that fits into the limits of current knowledge about melanoma.

It's great that your dad got your birth mark removed so quickly. You now have the initial pieces of information to understand what you are dealing with. Considering the rest of what you wrote and what's on your profile page (Stage III, primary depth 2mm-4mm), you can take the time now to decide what's next. 

A melanoma specialist can help you weigh the recent research report and help you decide whether a complete lymph node dissection is the right thing for you. Your instinct that this is a drastic step was correct. Follow that instinct and give yourself time to decide whether your case warrants taking that step – with a specialist at a Melanoma Center of Excellence whom you trust leading your team.

You have much to learn. Don't rush this surgery just because you (and your medical doctor family members) are scared.

Please come back and let us know how things are going and how we can help you get through whatever you decide to do next.

Best of luck –

Hazel

Hi, so sorry to welcome you here – and with some complex "stuff" to deal with. Not your melanoma, necessarily, but definitely the family situation!

I'm the daughter of a pediatrician, and that was helpful when my kids were little – I checked every little thing with my father and generally found a way to make sure he was satisfied with our decisions regarding his granddaughters' care and upbringing. He was just one of several medical people in our lives. When my husband got a (Stage 4 metastatic) melanoma diagnosis in 2012 I turned to my cousin-in-law all on the opposite coast  because she's a pediatric dermatologist. She put me directly in touch with the head of the melanoma program at our hospital, who trained in her department several years ago and whom she knew very well. She did not try to give us advice, other than to see to it that we were consulting with someone who understood melanoma at the highest level possible. And, most important, she assured us that she would help us understand anything our chosen melanoma specialist said.

Long story short – the initial staging from the pathology report is not what we now understand. We have been dealing with Stage IIB melanoma. Getting the communication channels open with the RIGHT people has been critical to our mental health, particularly in those early weeks.

Your feeling that all the statistics mean nothing may not go away – and I recommend that you fight for that mental state. It's hard to ignore a brother who is much more knowledgeable about the subject than you are – but perhaps you can "gently" ask him to only give you constructive information. Also, he might be the conduit for information passing from your melanoma specialist to everyone else in your family – that would be really useful. But I really hope you can find a melanoma specialist you connect with – one who gives you all the time you need to understand what's going on and where that fits into the limits of current knowledge about melanoma.

It's great that your dad got your birth mark removed so quickly. You now have the initial pieces of information to understand what you are dealing with. Considering the rest of what you wrote and what's on your profile page (Stage III, primary depth 2mm-4mm), you can take the time now to decide what's next. 

A melanoma specialist can help you weigh the recent research report and help you decide whether a complete lymph node dissection is the right thing for you. Your instinct that this is a drastic step was correct. Follow that instinct and give yourself time to decide whether your case warrants taking that step – with a specialist at a Melanoma Center of Excellence whom you trust leading your team.

You have much to learn. Don't rush this surgery just because you (and your medical doctor family members) are scared.

Please come back and let us know how things are going and how we can help you get through whatever you decide to do next.

Best of luck –

Hazel

Hi, so sorry to welcome you here – and with some complex "stuff" to deal with. Not your melanoma, necessarily, but definitely the family situation!

I'm the daughter of a pediatrician, and that was helpful when my kids were little – I checked every little thing with my father and generally found a way to make sure he was satisfied with our decisions regarding his granddaughters' care and upbringing. He was just one of several medical people in our lives. When my husband got a (Stage 4 metastatic) melanoma diagnosis in 2012 I turned to my cousin-in-law all on the opposite coast  because she's a pediatric dermatologist. She put me directly in touch with the head of the melanoma program at our hospital, who trained in her department several years ago and whom she knew very well. She did not try to give us advice, other than to see to it that we were consulting with someone who understood melanoma at the highest level possible. And, most important, she assured us that she would help us understand anything our chosen melanoma specialist said.

Long story short – the initial staging from the pathology report is not what we now understand. We have been dealing with Stage IIB melanoma. Getting the communication channels open with the RIGHT people has been critical to our mental health, particularly in those early weeks.

Your feeling that all the statistics mean nothing may not go away – and I recommend that you fight for that mental state. It's hard to ignore a brother who is much more knowledgeable about the subject than you are – but perhaps you can "gently" ask him to only give you constructive information. Also, he might be the conduit for information passing from your melanoma specialist to everyone else in your family – that would be really useful. But I really hope you can find a melanoma specialist you connect with – one who gives you all the time you need to understand what's going on and where that fits into the limits of current knowledge about melanoma.

It's great that your dad got your birth mark removed so quickly. You now have the initial pieces of information to understand what you are dealing with. Considering the rest of what you wrote and what's on your profile page (Stage III, primary depth 2mm-4mm), you can take the time now to decide what's next. 

A melanoma specialist can help you weigh the recent research report and help you decide whether a complete lymph node dissection is the right thing for you. Your instinct that this is a drastic step was correct. Follow that instinct and give yourself time to decide whether your case warrants taking that step – with a specialist at a Melanoma Center of Excellence whom you trust leading your team.

You have much to learn. Don't rush this surgery just because you (and your medical doctor family members) are scared.

Please come back and let us know how things are going and how we can help you get through whatever you decide to do next.

Best of luck –

Hazel

I'm certainly glad I don't have your brother for an oncologist!  

I am assuming he doesn't talk to his patients like he did to you, otherwise he wouldn't have many patients.  To say that you "will be dead in five years" is uncaring, unprofessional, and simply wrong!  OLD statistics might have shown a dismal 5-year survival rate, but many good changes have happened in the melanoma arena.  There are many Stage IV long-term survivors here, and many Stage III who pop in and out telling us how great their lives are fifteen+ years after diagnosis.  

Be aggressive with this disease, but be smart.  Don't dramatically alter your life plans and go into a "waiting to die" mode!  You're young and you're otherwise healthy, so just assume you are going to beat this!  Take everyone's advice and find a melanoma specialist … your family will appreciaten not having the burden of having to separate their emotions from their clinical selves!

P.S.  I don't think your brother is a bad guy or a bad doctor … I just think he let his fears cloud his judgment.

I'm certainly glad I don't have your brother for an oncologist!  

I am assuming he doesn't talk to his patients like he did to you, otherwise he wouldn't have many patients.  To say that you "will be dead in five years" is uncaring, unprofessional, and simply wrong!  OLD statistics might have shown a dismal 5-year survival rate, but many good changes have happened in the melanoma arena.  There are many Stage IV long-term survivors here, and many Stage III who pop in and out telling us how great their lives are fifteen+ years after diagnosis.  

Be aggressive with this disease, but be smart.  Don't dramatically alter your life plans and go into a "waiting to die" mode!  You're young and you're otherwise healthy, so just assume you are going to beat this!  Take everyone's advice and find a melanoma specialist … your family will appreciaten not having the burden of having to separate their emotions from their clinical selves!

P.S.  I don't think your brother is a bad guy or a bad doctor … I just think he let his fears cloud his judgment.

I'm certainly glad I don't have your brother for an oncologist!  

I am assuming he doesn't talk to his patients like he did to you, otherwise he wouldn't have many patients.  To say that you "will be dead in five years" is uncaring, unprofessional, and simply wrong!  OLD statistics might have shown a dismal 5-year survival rate, but many good changes have happened in the melanoma arena.  There are many Stage IV long-term survivors here, and many Stage III who pop in and out telling us how great their lives are fifteen+ years after diagnosis.  

Be aggressive with this disease, but be smart.  Don't dramatically alter your life plans and go into a "waiting to die" mode!  You're young and you're otherwise healthy, so just assume you are going to beat this!  Take everyone's advice and find a melanoma specialist … your family will appreciaten not having the burden of having to separate their emotions from their clinical selves!

P.S.  I don't think your brother is a bad guy or a bad doctor … I just think he let his fears cloud his judgment.

Your story sounds a lot like mine. I was 30 when I was diagnosed (I'm now 33). I had the original tumor (a mole I'd had since birth) and one positive node with micrometastasis (which just means they had to use a microscope to see the cancer, it wasn't obvious without one). This put me at stage III b. From your description my original tumor was worse than yours, but I too was suddenly bombarded with family telling me what to do, terrifying statistics (my doctor at the time told me I had a 50% chance of being alive in 5 years) and suddenly feeling like all the plans I had made for my life had vanished into thin air. I wasn't married, but planned to get married the next year and children were always in the plan for sometime in the future, but we weren't in a hurry. 

I think others probably will give you plenty of advice about finding a really good doctor (specialist if possible), getting copies of everything for your own files, etc. so I'll talk to you about the other stuff. Don't put off getting married. You can and should go ahead and do it. In fact, one of the first things my fiance said when I told him about my diagnosis was "We're not waiting to get married anymore, I want to be married to you as long as I possibly can." So as soon as I got back to the US (I was diagnosed while in Canada doing my internship) we got our license and got married. Neither one of us regrets it. A little over a year later we had a celebration with family and friends. Don't put off something like that for Melanoma.

The starting a family thing you may have to put off depending on what, if anything you choose for treatment and whether or not you get any further progression. I dont' know if you're male or female, but if you're a guy it's a bit easier to start a family while dealing with this as you dont have to carry the baby. However it's still dependant on what you choose for a treatment plan and obviously it's something you and your spouse/partner have to discuss. I did put my career on hold, mainly becaue I had finished out my contract for my internship and knew I was headed into therapy that wouldn't allow me to work so I put things on hold. If you're already in a job you love, talk to them about reducing your schedule if you think you need it, but no need to put everything on hold. 

I chose to have all of the lymph nodes removed, and then over a year later I had a recurrance in the lymph node area and they went back into that area again to basically do the same thing. Other than the recurrance, they did not find any other nodes (any nodes period, not just nodes with cancer). After that second round of surgery I did have some lymphedema for a while, but it was very manageable and I've been completely nomral for quite a long time, so if you find a good surgeon I dont' think you really need to be too afraid of that. Having said that though, it is very much your decision whether to do the surgery or not- there's a big arguement going on here in the US between doctors trying to decide whether it really makes a difference in survival or prevention of spread to remove the rest of the lymph nodes in cases like yours and mine and a lot of patients choose not to do the surgery and instead to just watch and wait. Nothing wrong with that as long as you understand your options and make the decision that you think is best. 

Along those lines, just because you had one positive lymph node doesn't mean it's gone any further than that. There's many people who never have a problem again. Not to scare you though, but I did progress to stage IV about a year and a half after my initial diagnosis and have been fihting like crazy ever since. 

I would say, be vigillant, consider at least some of the advice you get from this forum, but don't blow off your family either- you want and need a good support system, and definitely don't put off your life. Make this a priority in your life, but not your whole life. Get married, maybe start a family, and do as many of the things you were planning as possible.

Best of luck

Eva

Your story sounds a lot like mine. I was 30 when I was diagnosed (I'm now 33). I had the original tumor (a mole I'd had since birth) and one positive node with micrometastasis (which just means they had to use a microscope to see the cancer, it wasn't obvious without one). This put me at stage III b. From your description my original tumor was worse than yours, but I too was suddenly bombarded with family telling me what to do, terrifying statistics (my doctor at the time told me I had a 50% chance of being alive in 5 years) and suddenly feeling like all the plans I had made for my life had vanished into thin air. I wasn't married, but planned to get married the next year and children were always in the plan for sometime in the future, but we weren't in a hurry. 

I think others probably will give you plenty of advice about finding a really good doctor (specialist if possible), getting copies of everything for your own files, etc. so I'll talk to you about the other stuff. Don't put off getting married. You can and should go ahead and do it. In fact, one of the first things my fiance said when I told him about my diagnosis was "We're not waiting to get married anymore, I want to be married to you as long as I possibly can." So as soon as I got back to the US (I was diagnosed while in Canada doing my internship) we got our license and got married. Neither one of us regrets it. A little over a year later we had a celebration with family and friends. Don't put off something like that for Melanoma.

The starting a family thing you may have to put off depending on what, if anything you choose for treatment and whether or not you get any further progression. I dont' know if you're male or female, but if you're a guy it's a bit easier to start a family while dealing with this as you dont have to carry the baby. However it's still dependant on what you choose for a treatment plan and obviously it's something you and your spouse/partner have to discuss. I did put my career on hold, mainly becaue I had finished out my contract for my internship and knew I was headed into therapy that wouldn't allow me to work so I put things on hold. If you're already in a job you love, talk to them about reducing your schedule if you think you need it, but no need to put everything on hold. 

I chose to have all of the lymph nodes removed, and then over a year later I had a recurrance in the lymph node area and they went back into that area again to basically do the same thing. Other than the recurrance, they did not find any other nodes (any nodes period, not just nodes with cancer). After that second round of surgery I did have some lymphedema for a while, but it was very manageable and I've been completely nomral for quite a long time, so if you find a good surgeon I dont' think you really need to be too afraid of that. Having said that though, it is very much your decision whether to do the surgery or not- there's a big arguement going on here in the US between doctors trying to decide whether it really makes a difference in survival or prevention of spread to remove the rest of the lymph nodes in cases like yours and mine and a lot of patients choose not to do the surgery and instead to just watch and wait. Nothing wrong with that as long as you understand your options and make the decision that you think is best. 

Along those lines, just because you had one positive lymph node doesn't mean it's gone any further than that. There's many people who never have a problem again. Not to scare you though, but I did progress to stage IV about a year and a half after my initial diagnosis and have been fihting like crazy ever since. 

I would say, be vigillant, consider at least some of the advice you get from this forum, but don't blow off your family either- you want and need a good support system, and definitely don't put off your life. Make this a priority in your life, but not your whole life. Get married, maybe start a family, and do as many of the things you were planning as possible.

Best of luck

Eva

Your story sounds a lot like mine. I was 30 when I was diagnosed (I'm now 33). I had the original tumor (a mole I'd had since birth) and one positive node with micrometastasis (which just means they had to use a microscope to see the cancer, it wasn't obvious without one). This put me at stage III b. From your description my original tumor was worse than yours, but I too was suddenly bombarded with family telling me what to do, terrifying statistics (my doctor at the time told me I had a 50% chance of being alive in 5 years) and suddenly feeling like all the plans I had made for my life had vanished into thin air. I wasn't married, but planned to get married the next year and children were always in the plan for sometime in the future, but we weren't in a hurry. 

I think others probably will give you plenty of advice about finding a really good doctor (specialist if possible), getting copies of everything for your own files, etc. so I'll talk to you about the other stuff. Don't put off getting married. You can and should go ahead and do it. In fact, one of the first things my fiance said when I told him about my diagnosis was "We're not waiting to get married anymore, I want to be married to you as long as I possibly can." So as soon as I got back to the US (I was diagnosed while in Canada doing my internship) we got our license and got married. Neither one of us regrets it. A little over a year later we had a celebration with family and friends. Don't put off something like that for Melanoma.

The starting a family thing you may have to put off depending on what, if anything you choose for treatment and whether or not you get any further progression. I dont' know if you're male or female, but if you're a guy it's a bit easier to start a family while dealing with this as you dont have to carry the baby. However it's still dependant on what you choose for a treatment plan and obviously it's something you and your spouse/partner have to discuss. I did put my career on hold, mainly becaue I had finished out my contract for my internship and knew I was headed into therapy that wouldn't allow me to work so I put things on hold. If you're already in a job you love, talk to them about reducing your schedule if you think you need it, but no need to put everything on hold. 

I chose to have all of the lymph nodes removed, and then over a year later I had a recurrance in the lymph node area and they went back into that area again to basically do the same thing. Other than the recurrance, they did not find any other nodes (any nodes period, not just nodes with cancer). After that second round of surgery I did have some lymphedema for a while, but it was very manageable and I've been completely nomral for quite a long time, so if you find a good surgeon I dont' think you really need to be too afraid of that. Having said that though, it is very much your decision whether to do the surgery or not- there's a big arguement going on here in the US between doctors trying to decide whether it really makes a difference in survival or prevention of spread to remove the rest of the lymph nodes in cases like yours and mine and a lot of patients choose not to do the surgery and instead to just watch and wait. Nothing wrong with that as long as you understand your options and make the decision that you think is best. 

Along those lines, just because you had one positive lymph node doesn't mean it's gone any further than that. There's many people who never have a problem again. Not to scare you though, but I did progress to stage IV about a year and a half after my initial diagnosis and have been fihting like crazy ever since. 

I would say, be vigillant, consider at least some of the advice you get from this forum, but don't blow off your family either- you want and need a good support system, and definitely don't put off your life. Make this a priority in your life, but not your whole life. Get married, maybe start a family, and do as many of the things you were planning as possible.

Best of luck

Eva

Definitely stay up on your scans for recurrence!! Staying on top of the disease is key with melanoma it's much more treatable when found early. Once you can find a specialist you may even want to consider doing a chemo just to kill any cells if they have traveled through the blood stream. My mom was clear after her first melanoma was caught but then re-occurred 1 year later, she also had an extremely aggressive case. Best of luck to you and luckily there are so many drugs that are out now to help you the odds are in your favor 🙂

Definitely stay up on your scans for recurrence!! Staying on top of the disease is key with melanoma it's much more treatable when found early. Once you can find a specialist you may even want to consider doing a chemo just to kill any cells if they have traveled through the blood stream. My mom was clear after her first melanoma was caught but then re-occurred 1 year later, she also had an extremely aggressive case. Best of luck to you and luckily there are so many drugs that are out now to help you the odds are in your favor 🙂

Definitely stay up on your scans for recurrence!! Staying on top of the disease is key with melanoma it's much more treatable when found early. Once you can find a specialist you may even want to consider doing a chemo just to kill any cells if they have traveled through the blood stream. My mom was clear after her first melanoma was caught but then re-occurred 1 year later, she also had an extremely aggressive case. Best of luck to you and luckily there are so many drugs that are out now to help you the odds are in your favor 🙂

It's devastating news to get but it doesn't mean it's the end. I'm a stage IV since 2005 and have been NED (no evidence of disease) since undergoing my decided course of treatment.

3 things I would suggest:

#1. Find a melanoma specialist. Even if you have to drive a few hrs. Ask your physician to recommend someone. Don't just see an general oncologist.

#2. Empower yourself with info. Learn your options and choose from the ones given. Ask your specialist lots of questions while you're gathering information. Also have a friend/family member go with you to every appt to take notes, get doctors' business cards, and ask any questions you can't think of. You need advocates and specialists at this point!

#3. Tell your oncologist brother to keep his "professional" opinion to himself. No matter how many degrees a person has NO ONE knows exactly how each case will play out.

Is it serious? Sure.

Is it impossible to survive? No.

Best of luck.

God's blessing for peace and strength,

Karen

It's devastating news to get but it doesn't mean it's the end. I'm a stage IV since 2005 and have been NED (no evidence of disease) since undergoing my decided course of treatment.

3 things I would suggest:

#1. Find a melanoma specialist. Even if you have to drive a few hrs. Ask your physician to recommend someone. Don't just see an general oncologist.

#2. Empower yourself with info. Learn your options and choose from the ones given. Ask your specialist lots of questions while you're gathering information. Also have a friend/family member go with you to every appt to take notes, get doctors' business cards, and ask any questions you can't think of. You need advocates and specialists at this point!

#3. Tell your oncologist brother to keep his "professional" opinion to himself. No matter how many degrees a person has NO ONE knows exactly how each case will play out.

Is it serious? Sure.

Is it impossible to survive? No.

Best of luck.

God's blessing for peace and strength,

Karen

It's devastating news to get but it doesn't mean it's the end. I'm a stage IV since 2005 and have been NED (no evidence of disease) since undergoing my decided course of treatment.

3 things I would suggest:

#1. Find a melanoma specialist. Even if you have to drive a few hrs. Ask your physician to recommend someone. Don't just see an general oncologist.

#2. Empower yourself with info. Learn your options and choose from the ones given. Ask your specialist lots of questions while you're gathering information. Also have a friend/family member go with you to every appt to take notes, get doctors' business cards, and ask any questions you can't think of. You need advocates and specialists at this point!

#3. Tell your oncologist brother to keep his "professional" opinion to himself. No matter how many degrees a person has NO ONE knows exactly how each case will play out.

Is it serious? Sure.

Is it impossible to survive? No.

Best of luck.

God's blessing for peace and strength,

Karen

What a painful turn of events for you, and I am sorry you are faced with this new difficult reality. I echo what others have said here about finding a melanoma specialist, if possible where you live. Traveling a little ways for an opinion would be worthwhile, even if you would not intend to have to travel for every needed test and/or possible treatment. Your dad does deserve some credit here for getting you in to have it removed – so I am glad he was insistant. It is hard for me to imagine ANY oncologist giving the dire report your brother gave, however. Even before all the newer treatments were available, that would not be what you should be told. BUT, especially now with many new treatment opstions emerging, statistics are being blown out the window. Yes, as the last poster said…it is serious. No doubt about it. BUT… there are many still around and doing well after recieving even more dire news in regards to melanoma. I was originally diagnosed in 2002 at the age of 37. Became stage four in 2005. Still here 🙂   . responding to new treatment, and doing well. You can still get married, as you have planned, too!!!  Anyway… your situation is upsetting.. absolutely no doubt about it. But, this does not mean your life is at its end. Seek out a specialist to get an opinion and course of action. And, keep planning that wedding 🙂

Make use of this board… many people have walked this road before you and there will be helpful advice on here for you. Like everything, the decisions and opinions will sometimes vary, but at least you will be able to pick and choose, and gain from the wealth of knowledge and support here.

Tina

What a painful turn of events for you, and I am sorry you are faced with this new difficult reality. I echo what others have said here about finding a melanoma specialist, if possible where you live. Traveling a little ways for an opinion would be worthwhile, even if you would not intend to have to travel for every needed test and/or possible treatment. Your dad does deserve some credit here for getting you in to have it removed – so I am glad he was insistant. It is hard for me to imagine ANY oncologist giving the dire report your brother gave, however. Even before all the newer treatments were available, that would not be what you should be told. BUT, especially now with many new treatment opstions emerging, statistics are being blown out the window. Yes, as the last poster said…it is serious. No doubt about it. BUT… there are many still around and doing well after recieving even more dire news in regards to melanoma. I was originally diagnosed in 2002 at the age of 37. Became stage four in 2005. Still here 🙂   . responding to new treatment, and doing well. You can still get married, as you have planned, too!!!  Anyway… your situation is upsetting.. absolutely no doubt about it. But, this does not mean your life is at its end. Seek out a specialist to get an opinion and course of action. And, keep planning that wedding 🙂

Make use of this board… many people have walked this road before you and there will be helpful advice on here for you. Like everything, the decisions and opinions will sometimes vary, but at least you will be able to pick and choose, and gain from the wealth of knowledge and support here.

Tina

What a painful turn of events for you, and I am sorry you are faced with this new difficult reality. I echo what others have said here about finding a melanoma specialist, if possible where you live. Traveling a little ways for an opinion would be worthwhile, even if you would not intend to have to travel for every needed test and/or possible treatment. Your dad does deserve some credit here for getting you in to have it removed – so I am glad he was insistant. It is hard for me to imagine ANY oncologist giving the dire report your brother gave, however. Even before all the newer treatments were available, that would not be what you should be told. BUT, especially now with many new treatment opstions emerging, statistics are being blown out the window. Yes, as the last poster said…it is serious. No doubt about it. BUT… there are many still around and doing well after recieving even more dire news in regards to melanoma. I was originally diagnosed in 2002 at the age of 37. Became stage four in 2005. Still here 🙂   . responding to new treatment, and doing well. You can still get married, as you have planned, too!!!  Anyway… your situation is upsetting.. absolutely no doubt about it. But, this does not mean your life is at its end. Seek out a specialist to get an opinion and course of action. And, keep planning that wedding 🙂

Make use of this board… many people have walked this road before you and there will be helpful advice on here for you. Like everything, the decisions and opinions will sometimes vary, but at least you will be able to pick and choose, and gain from the wealth of knowledge and support here.

Tina

Hello,

I agree seek the melanoma specialist for guidance.  My husband started (January 1, 2008) out with a 10.5 mm lesion on the back of his head.  His first surgery after finding it as melanoma he had a 11 cm cut out portion on the back of his head, skin graft, SNB all at the same time.  He started out as a stage III as his was also ulcerated.  He had a reoccurence, another reoccurence and yet another reoccurence with surgeries to have each one removed.  He went for scans thinking he was going to be good to go when it was found that he had a large lesion near his spine pressing on the C1 C2 cervical spine area that was unresectable as it would probably leave him paralyzed.  Upon screenings they found to also be in his liver and lungs so at this time he is now Stage IV.

He went into a clinical trial and participated in it for 2 years and 9 months.  He has been NED (no evidence of disease) for over a year now.  He is no longer in the clinical trial as he decided to leave it but they are still following him.  It has now been six years since he started this long road but he is still here and doing rather well.  Good positive mental attitude is helpful and a good diet can't hurt either along with the newer medicines Melanoma is not as bleak as it once was.  They are making great strides with some of the medications and many on here have lived for many years after being Stage IV.

We live our lives as normal as possible and try to do many fun things and hope we have a very long life together.  Don't let melanoma bury you before your time.   Listen, learn and only you can make the right decision for yourself but please don't let it consume you and take the life right out of you.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

I agree seek the melanoma specialist for guidance.  My husband started (January 1, 2008) out with a 10.5 mm lesion on the back of his head.  His first surgery after finding it as melanoma he had a 11 cm cut out portion on the back of his head, skin graft, SNB all at the same time.  He started out as a stage III as his was also ulcerated.  He had a reoccurence, another reoccurence and yet another reoccurence with surgeries to have each one removed.  He went for scans thinking he was going to be good to go when it was found that he had a large lesion near his spine pressing on the C1 C2 cervical spine area that was unresectable as it would probably leave him paralyzed.  Upon screenings they found to also be in his liver and lungs so at this time he is now Stage IV.

He went into a clinical trial and participated in it for 2 years and 9 months.  He has been NED (no evidence of disease) for over a year now.  He is no longer in the clinical trial as he decided to leave it but they are still following him.  It has now been six years since he started this long road but he is still here and doing rather well.  Good positive mental attitude is helpful and a good diet can't hurt either along with the newer medicines Melanoma is not as bleak as it once was.  They are making great strides with some of the medications and many on here have lived for many years after being Stage IV.

We live our lives as normal as possible and try to do many fun things and hope we have a very long life together.  Don't let melanoma bury you before your time.   Listen, learn and only you can make the right decision for yourself but please don't let it consume you and take the life right out of you.

Judy (loving wife of Gene Stage IV and now NED)

Hello,

I agree seek the melanoma specialist for guidance.  My husband started (January 1, 2008) out with a 10.5 mm lesion on the back of his head.  His first surgery after finding it as melanoma he had a 11 cm cut out portion on the back of his head, skin graft, SNB all at the same time.  He started out as a stage III as his was also ulcerated.  He had a reoccurence, another reoccurence and yet another reoccurence with surgeries to have each one removed.  He went for scans thinking he was going to be good to go when it was found that he had a large lesion near his spine pressing on the C1 C2 cervical spine area that was unresectable as it would probably leave him paralyzed.  Upon screenings they found to also be in his liver and lungs so at this time he is now Stage IV.

He went into a clinical trial and participated in it for 2 years and 9 months.  He has been NED (no evidence of disease) for over a year now.  He is no longer in the clinical trial as he decided to leave it but they are still following him.  It has now been six years since he started this long road but he is still here and doing rather well.  Good positive mental attitude is helpful and a good diet can't hurt either along with the newer medicines Melanoma is not as bleak as it once was.  They are making great strides with some of the medications and many on here have lived for many years after being Stage IV.

We live our lives as normal as possible and try to do many fun things and hope we have a very long life together.  Don't let melanoma bury you before your time.   Listen, learn and only you can make the right decision for yourself but please don't let it consume you and take the life right out of you.

Judy (loving wife of Gene Stage IV and now NED)