Just married, newly diagnosed and freaking out!

Hi Kevin,

First and foremost please don't ever feel the need to apologize on this board.  Each and every one of us here has received the same news and we understand the rollercoaster.  There are others on here who can answer your questions much better than I can (Janner is an angel-particularly to newcomers).

You are already doing what you need to.  Bloodwork, scans (and the watch and wait is tough), seeing a doctor, posting here to get some patient opinions, etc.

My number one suggestion (and I guarantee others will agree) is to find yourself an oncologist who speicalizes in melanoma.  There are so many new clinical trials, treatments, therapies, etc., that are available (or will be soon) and a melanoma specialist will be able to lead you in the right direction.  I was diagnosed stage IV almost two years ago and my doctors immediately tested me for a BRAF mutation as well as others because they are melanoma specialists as opposed to general oncologist.

It isn't easy, but you are not alone and you will learn constantly.

Good luck to you,

Brendan

Hi Kevin,

First and foremost please don't ever feel the need to apologize on this board.  Each and every one of us here has received the same news and we understand the rollercoaster.  There are others on here who can answer your questions much better than I can (Janner is an angel-particularly to newcomers).

You are already doing what you need to.  Bloodwork, scans (and the watch and wait is tough), seeing a doctor, posting here to get some patient opinions, etc.

My number one suggestion (and I guarantee others will agree) is to find yourself an oncologist who speicalizes in melanoma.  There are so many new clinical trials, treatments, therapies, etc., that are available (or will be soon) and a melanoma specialist will be able to lead you in the right direction.  I was diagnosed stage IV almost two years ago and my doctors immediately tested me for a BRAF mutation as well as others because they are melanoma specialists as opposed to general oncologist.

It isn't easy, but you are not alone and you will learn constantly.

Good luck to you,

Brendan

Hi Kevin,

First and foremost please don't ever feel the need to apologize on this board.  Each and every one of us here has received the same news and we understand the rollercoaster.  There are others on here who can answer your questions much better than I can (Janner is an angel-particularly to newcomers).

You are already doing what you need to.  Bloodwork, scans (and the watch and wait is tough), seeing a doctor, posting here to get some patient opinions, etc.

My number one suggestion (and I guarantee others will agree) is to find yourself an oncologist who speicalizes in melanoma.  There are so many new clinical trials, treatments, therapies, etc., that are available (or will be soon) and a melanoma specialist will be able to lead you in the right direction.  I was diagnosed stage IV almost two years ago and my doctors immediately tested me for a BRAF mutation as well as others because they are melanoma specialists as opposed to general oncologist.

It isn't easy, but you are not alone and you will learn constantly.

Good luck to you,

Brendan

Hi, Kevin-

I agree with everything Brendan recommended with one exception– the first thing you should do is STOP READING THE INTERNET (except for this forum, of course  ). You will only end up scaring yourself needlessly. Most of the melanoma information on the Internet, including medical information, is out of date. In the last 2 or 3 years several new, more effective, drugs and treatments have been approved and more are in clincial trials now. So the old "survival" statistics are out the window. Don't read them!

Neither you nor your doctors can make any predictions or prescribe any treatments until you get the results of your sentinel node biopsy (SNB). Only then will you know what stage you are (Stage I, II, III or IV). The overwhelming probability is that your cancer is confined to the original site and no further treatment will be necessary other than routine follow-ups. The overwhelming probability is that you will never have a recurrance. That, of course, leaves you with the distressing "watch and wait" scenario but that is pretty much unavoidable with any type of cancer. 

I know this is hard and I am sorry that you have to join our club. But keep telling yourself (and your wife) that you do NOT have any metastases unless and until you have proof that you do have mets. Try not to worry about things that have not happened yet and may never happen. Remind yourself that there are many new melanoma treatments available now IF you should need them some day. And trust that with time and continued good health, you will learn to live happily and fully even though some small part of your brain knows that you have to remain vigilant about melanoma.

Hi, Kevin-

I agree with everything Brendan recommended with one exception– the first thing you should do is STOP READING THE INTERNET (except for this forum, of course  ). You will only end up scaring yourself needlessly. Most of the melanoma information on the Internet, including medical information, is out of date. In the last 2 or 3 years several new, more effective, drugs and treatments have been approved and more are in clincial trials now. So the old "survival" statistics are out the window. Don't read them!

Neither you nor your doctors can make any predictions or prescribe any treatments until you get the results of your sentinel node biopsy (SNB). Only then will you know what stage you are (Stage I, II, III or IV). The overwhelming probability is that your cancer is confined to the original site and no further treatment will be necessary other than routine follow-ups. The overwhelming probability is that you will never have a recurrance. That, of course, leaves you with the distressing "watch and wait" scenario but that is pretty much unavoidable with any type of cancer. 

I know this is hard and I am sorry that you have to join our club. But keep telling yourself (and your wife) that you do NOT have any metastases unless and until you have proof that you do have mets. Try not to worry about things that have not happened yet and may never happen. Remind yourself that there are many new melanoma treatments available now IF you should need them some day. And trust that with time and continued good health, you will learn to live happily and fully even though some small part of your brain knows that you have to remain vigilant about melanoma.

Hi, Kevin-

I agree with everything Brendan recommended with one exception– the first thing you should do is STOP READING THE INTERNET (except for this forum, of course  ). You will only end up scaring yourself needlessly. Most of the melanoma information on the Internet, including medical information, is out of date. In the last 2 or 3 years several new, more effective, drugs and treatments have been approved and more are in clincial trials now. So the old "survival" statistics are out the window. Don't read them!

Neither you nor your doctors can make any predictions or prescribe any treatments until you get the results of your sentinel node biopsy (SNB). Only then will you know what stage you are (Stage I, II, III or IV). The overwhelming probability is that your cancer is confined to the original site and no further treatment will be necessary other than routine follow-ups. The overwhelming probability is that you will never have a recurrance. That, of course, leaves you with the distressing "watch and wait" scenario but that is pretty much unavoidable with any type of cancer. 

I know this is hard and I am sorry that you have to join our club. But keep telling yourself (and your wife) that you do NOT have any metastases unless and until you have proof that you do have mets. Try not to worry about things that have not happened yet and may never happen. Remind yourself that there are many new melanoma treatments available now IF you should need them some day. And trust that with time and continued good health, you will learn to live happily and fully even though some small part of your brain knows that you have to remain vigilant about melanoma.

make sure to keep copies/files of all of your medical records; pathology reports, scans (on disc), etc. . so you have everything in case you switched doctors/hospitals

make sure to keep copies/files of all of your medical records; pathology reports, scans (on disc), etc. . so you have everything in case you switched doctors/hospitals

make sure to keep copies/files of all of your medical records; pathology reports, scans (on disc), etc. . so you have everything in case you switched doctors/hospitals

You just got some great advice.There are  lot experinced fighters here Get over the intial shock  and take on the battle. You will get plenty of support and info from this site.Keep a strong PMA (positive mind attitude) and a good team of doctors as your best weapons.Beat the Beast.   Al

You just got some great advice.There are  lot experinced fighters here Get over the intial shock  and take on the battle. You will get plenty of support and info from this site.Keep a strong PMA (positive mind attitude) and a good team of doctors as your best weapons.Beat the Beast.   Al

You just got some great advice.There are  lot experinced fighters here Get over the intial shock  and take on the battle. You will get plenty of support and info from this site.Keep a strong PMA (positive mind attitude) and a good team of doctors as your best weapons.Beat the Beast.   Al

which ones in the chicago area are you recommending?

which ones in the chicago area are you recommending?

which ones in the chicago area are you recommending?

We all understand your anxiety. It’s not easy but you came to right place, great people…great support. Are you in Chicago area? Mclaus is right…Dr Kaufman, Gawejski, Brockstein, Kuzel or Drs. Richards and Hallmeyer are all great melanoma specialists. Wish you best…keep us posted on results.

Josh

We all understand your anxiety. It’s not easy but you came to right place, great people…great support. Are you in Chicago area? Mclaus is right…Dr Kaufman, Gawejski, Brockstein, Kuzel or Drs. Richards and Hallmeyer are all great melanoma specialists. Wish you best…keep us posted on results.

Josh

We all understand your anxiety. It’s not easy but you came to right place, great people…great support. Are you in Chicago area? Mclaus is right…Dr Kaufman, Gawejski, Brockstein, Kuzel or Drs. Richards and Hallmeyer are all great melanoma specialists. Wish you best…keep us posted on results.

Josh

They are both amazing
I can provide you with their contact info if you would like!

They are both amazing
I can provide you with their contact info if you would like!

They are both amazing
I can provide you with their contact info if you would like!

To address your other questions, obviously, it would have been better if your nodes had come back completely clean. But your talking about a few cells. If they had not found those few cells, you would still have to live the rest of your life being diligent about skin checks, derm visits etc. You’re really in the same situation now. Melanoma is certainly a significant part of your life now and will be forever, but don’t let it RULE your life.

For what it’s worth, I’m stage 3a. We have a 2 year old son. We have talked honestly about the fact that we don’t know if or when this might arise again and that I could be dead in a month, 40 months or 40 years. My wife’s response was that she wants to have my children. The more, the better (our son is soooo freakin cute its insane) ;)) and she wants more of that. Even if I’m not here forever. We also pray about it and trust the Lords will for our life and if we’re not supposed to have more kids, we won’t get pregnant.

Not telling you what to do, just trying to share our thought process on this exact subject. Thats my 2cents;) Good luck

To address your other questions, obviously, it would have been better if your nodes had come back completely clean. But your talking about a few cells. If they had not found those few cells, you would still have to live the rest of your life being diligent about skin checks, derm visits etc. You’re really in the same situation now. Melanoma is certainly a significant part of your life now and will be forever, but don’t let it RULE your life.

For what it’s worth, I’m stage 3a. We have a 2 year old son. We have talked honestly about the fact that we don’t know if or when this might arise again and that I could be dead in a month, 40 months or 40 years. My wife’s response was that she wants to have my children. The more, the better (our son is soooo freakin cute its insane) ;)) and she wants more of that. Even if I’m not here forever. We also pray about it and trust the Lords will for our life and if we’re not supposed to have more kids, we won’t get pregnant.

Not telling you what to do, just trying to share our thought process on this exact subject. Thats my 2cents;) Good luck

To address your other questions, obviously, it would have been better if your nodes had come back completely clean. But your talking about a few cells. If they had not found those few cells, you would still have to live the rest of your life being diligent about skin checks, derm visits etc. You’re really in the same situation now. Melanoma is certainly a significant part of your life now and will be forever, but don’t let it RULE your life.

For what it’s worth, I’m stage 3a. We have a 2 year old son. We have talked honestly about the fact that we don’t know if or when this might arise again and that I could be dead in a month, 40 months or 40 years. My wife’s response was that she wants to have my children. The more, the better (our son is soooo freakin cute its insane) ;)) and she wants more of that. Even if I’m not here forever. We also pray about it and trust the Lords will for our life and if we’re not supposed to have more kids, we won’t get pregnant.

Not telling you what to do, just trying to share our thought process on this exact subject. Thats my 2cents;) Good luck

Hi, Kevin-

Ugh! Not the news you wanted to hear. But it sounds like you got it really early and I think your chances for ever having a recurrance are very low. Good for you!  Please do, however, fill out a profile on this site so we can continue to help you more effectively in the future. 

In your situation, I think I would tell myself that "I had a brush with melanoma." That means yes, I had it so I do have the genetic makeup that predisposes one to melanoma. But it also means that with proactive vigilance I will probably never have it again. 

The complexity in your case is that you are young and you want to have children some day. If you were older and your children were grown, you could probably reasonably adopt a "wait and see" approach with no problem. However, if you want to have children, I think you need to really factor that into your decisions now and in the future. The melanoma COULD come back some day. How will you and your wife prepare for that possibility? To me, that means 2 things:

1. Do what you can now to minimize the possibility of a recurrance. Research what treatments and/or clinical trials are available for Stage III melanoma treatments and do one of them. I know that interferon is a possibility. Perhaps Yervoy (I don't remember the Stage III eligibility requirements for Yervoy.) Clinical trials are also good not just because you get a treatment, but because you will have close follow-up with a melanoma specialist for the next couple of years. That would be a good thing. So if I were you, I would seek out some kind of treatment in an effort to prevent recurrance. 

2. You and your wife need to structure your life and your finances so that your family can continue to get by relatively easily even if Daddy gets sick. Try to stay out of debt– discipline yourself to pay cash for everything, even cars. I don't know if you can get life insurance now but if you can, do so. If you can't, put as much money into savings/investments as you can so that you build up a decent nest egg for the future. If you buy a house, buy a small house (maybe a fixer-upper if you're that kind of guy) with a 15 year mortgage rather than the home of your dreams with a 30 year mortgage. Try t live near family, especially your or your wife's parents. During a long illness, having a strong support network close by is very important, especially for the caregiver. 

Some people will probably think that I am being alarmist. You found your melanoma very early and the overwhelming probability is that you will never have any major problems in the future. And if only you and your wife were involved, I would agree. But when you add children to the mix, I think that the responsible thing to do is to set things up so that they will be taken care of in the unlikely event that your cancer recurrs. And look on the bright side– if you live frugally, stay out of debt, save your money, and maintain strong family relationships, 10 years from now a very healthy and happy you will be sitting very pretty! 

Hi, Kevin-

Ugh! Not the news you wanted to hear. But it sounds like you got it really early and I think your chances for ever having a recurrance are very low. Good for you!  Please do, however, fill out a profile on this site so we can continue to help you more effectively in the future. 

In your situation, I think I would tell myself that "I had a brush with melanoma." That means yes, I had it so I do have the genetic makeup that predisposes one to melanoma. But it also means that with proactive vigilance I will probably never have it again. 

The complexity in your case is that you are young and you want to have children some day. If you were older and your children were grown, you could probably reasonably adopt a "wait and see" approach with no problem. However, if you want to have children, I think you need to really factor that into your decisions now and in the future. The melanoma COULD come back some day. How will you and your wife prepare for that possibility? To me, that means 2 things:

1. Do what you can now to minimize the possibility of a recurrance. Research what treatments and/or clinical trials are available for Stage III melanoma treatments and do one of them. I know that interferon is a possibility. Perhaps Yervoy (I don't remember the Stage III eligibility requirements for Yervoy.) Clinical trials are also good not just because you get a treatment, but because you will have close follow-up with a melanoma specialist for the next couple of years. That would be a good thing. So if I were you, I would seek out some kind of treatment in an effort to prevent recurrance. 

2. You and your wife need to structure your life and your finances so that your family can continue to get by relatively easily even if Daddy gets sick. Try to stay out of debt– discipline yourself to pay cash for everything, even cars. I don't know if you can get life insurance now but if you can, do so. If you can't, put as much money into savings/investments as you can so that you build up a decent nest egg for the future. If you buy a house, buy a small house (maybe a fixer-upper if you're that kind of guy) with a 15 year mortgage rather than the home of your dreams with a 30 year mortgage. Try t live near family, especially your or your wife's parents. During a long illness, having a strong support network close by is very important, especially for the caregiver. 

Some people will probably think that I am being alarmist. You found your melanoma very early and the overwhelming probability is that you will never have any major problems in the future. And if only you and your wife were involved, I would agree. But when you add children to the mix, I think that the responsible thing to do is to set things up so that they will be taken care of in the unlikely event that your cancer recurrs. And look on the bright side– if you live frugally, stay out of debt, save your money, and maintain strong family relationships, 10 years from now a very healthy and happy you will be sitting very pretty! 

Hi, Kevin-

Ugh! Not the news you wanted to hear. But it sounds like you got it really early and I think your chances for ever having a recurrance are very low. Good for you!  Please do, however, fill out a profile on this site so we can continue to help you more effectively in the future. 

In your situation, I think I would tell myself that "I had a brush with melanoma." That means yes, I had it so I do have the genetic makeup that predisposes one to melanoma. But it also means that with proactive vigilance I will probably never have it again. 

The complexity in your case is that you are young and you want to have children some day. If you were older and your children were grown, you could probably reasonably adopt a "wait and see" approach with no problem. However, if you want to have children, I think you need to really factor that into your decisions now and in the future. The melanoma COULD come back some day. How will you and your wife prepare for that possibility? To me, that means 2 things:

1. Do what you can now to minimize the possibility of a recurrance. Research what treatments and/or clinical trials are available for Stage III melanoma treatments and do one of them. I know that interferon is a possibility. Perhaps Yervoy (I don't remember the Stage III eligibility requirements for Yervoy.) Clinical trials are also good not just because you get a treatment, but because you will have close follow-up with a melanoma specialist for the next couple of years. That would be a good thing. So if I were you, I would seek out some kind of treatment in an effort to prevent recurrance. 

2. You and your wife need to structure your life and your finances so that your family can continue to get by relatively easily even if Daddy gets sick. Try to stay out of debt– discipline yourself to pay cash for everything, even cars. I don't know if you can get life insurance now but if you can, do so. If you can't, put as much money into savings/investments as you can so that you build up a decent nest egg for the future. If you buy a house, buy a small house (maybe a fixer-upper if you're that kind of guy) with a 15 year mortgage rather than the home of your dreams with a 30 year mortgage. Try t live near family, especially your or your wife's parents. During a long illness, having a strong support network close by is very important, especially for the caregiver. 

Some people will probably think that I am being alarmist. You found your melanoma very early and the overwhelming probability is that you will never have any major problems in the future. And if only you and your wife were involved, I would agree. But when you add children to the mix, I think that the responsible thing to do is to set things up so that they will be taken care of in the unlikely event that your cancer recurrs. And look on the bright side– if you live frugally, stay out of debt, save your money, and maintain strong family relationships, 10 years from now a very healthy and happy you will be sitting very pretty!