How do you explain the “watch and wait” stage?

Colleen-

I understand what you're going through with the "wait and watch" philosophy. I either had a "primary dermal melanoma" or an unknown primary. With no leison on epidermis they did wide excision and sentinel lymph node biopsy. The depth of my tumor would fall into Stage 3 category but key difference between me and your husband sounds like his SLNB was positive (lymh dissection I noted on your profile) and mine was negative. I wasn't even offered Interferon or Leukine and my oncologists who are both melanoma specialists wouldn't committ to a staging as after the WLE surgery I was NED. Been just about 2 years and scans have been clear and now they tell me I don't need scans anymore either. I thought it would be 5 years.So when people ask, I say right now I am in the clear but by no means out of the woods….not sure we ever will be because melanoma leaves it mark. Approach it head on….what have your doctors said? Is recurrence chances deemed low or high? Do they suggest a trial? I unfortunately can't share a bunch of info on that. I visit the site frequently and try to stay abreast of what's going on in the world of melanoma and see how people are doing. I personally don't like discussing it…people want to make comparisons of someone they know who had cancer. People don't understand the complexities of different cancers so it can be frustrating….at least for me. You hear of stories of melanoma rearing its ugly head when person thought they would be clear or someone at stage 1 has metastsis all over after being given all clear sign. Maybe it's me but it seems like I've heard more horror stories with melanoma than any other cancer. I handle conversations much better now but I had an anger/frustration phase when I was first diagnosed but that has subsided and I try to listen and educate people. All the best!!!

Josh

Colleen-

I understand what you're going through with the "wait and watch" philosophy. I either had a "primary dermal melanoma" or an unknown primary. With no leison on epidermis they did wide excision and sentinel lymph node biopsy. The depth of my tumor would fall into Stage 3 category but key difference between me and your husband sounds like his SLNB was positive (lymh dissection I noted on your profile) and mine was negative. I wasn't even offered Interferon or Leukine and my oncologists who are both melanoma specialists wouldn't committ to a staging as after the WLE surgery I was NED. Been just about 2 years and scans have been clear and now they tell me I don't need scans anymore either. I thought it would be 5 years.So when people ask, I say right now I am in the clear but by no means out of the woods….not sure we ever will be because melanoma leaves it mark. Approach it head on….what have your doctors said? Is recurrence chances deemed low or high? Do they suggest a trial? I unfortunately can't share a bunch of info on that. I visit the site frequently and try to stay abreast of what's going on in the world of melanoma and see how people are doing. I personally don't like discussing it…people want to make comparisons of someone they know who had cancer. People don't understand the complexities of different cancers so it can be frustrating….at least for me. You hear of stories of melanoma rearing its ugly head when person thought they would be clear or someone at stage 1 has metastsis all over after being given all clear sign. Maybe it's me but it seems like I've heard more horror stories with melanoma than any other cancer. I handle conversations much better now but I had an anger/frustration phase when I was first diagnosed but that has subsided and I try to listen and educate people. All the best!!!

Josh

Colleen-

I understand what you're going through with the "wait and watch" philosophy. I either had a "primary dermal melanoma" or an unknown primary. With no leison on epidermis they did wide excision and sentinel lymph node biopsy. The depth of my tumor would fall into Stage 3 category but key difference between me and your husband sounds like his SLNB was positive (lymh dissection I noted on your profile) and mine was negative. I wasn't even offered Interferon or Leukine and my oncologists who are both melanoma specialists wouldn't committ to a staging as after the WLE surgery I was NED. Been just about 2 years and scans have been clear and now they tell me I don't need scans anymore either. I thought it would be 5 years.So when people ask, I say right now I am in the clear but by no means out of the woods….not sure we ever will be because melanoma leaves it mark. Approach it head on….what have your doctors said? Is recurrence chances deemed low or high? Do they suggest a trial? I unfortunately can't share a bunch of info on that. I visit the site frequently and try to stay abreast of what's going on in the world of melanoma and see how people are doing. I personally don't like discussing it…people want to make comparisons of someone they know who had cancer. People don't understand the complexities of different cancers so it can be frustrating….at least for me. You hear of stories of melanoma rearing its ugly head when person thought they would be clear or someone at stage 1 has metastsis all over after being given all clear sign. Maybe it's me but it seems like I've heard more horror stories with melanoma than any other cancer. I handle conversations much better now but I had an anger/frustration phase when I was first diagnosed but that has subsided and I try to listen and educate people. All the best!!!

Josh

Well see, now there's the rub, isn't it?  You could cite statistics, go into the details of micrometastasis, and what not, but in the end you just don't know.  And while all cancers are different, Melanoma really is one of the bad ones.

I did about 8 months of Interferon treatment and had to quit because of liver issues.  After I finished my initial treatments and my friends and family asked about my status, I simply told them, "For now at least, it appears that it is gone; however, melanoma is an aggressive cancer that often comes back so we really don't know for sure.  All we really can do for now is resume our normal lives, keep an eye on it, wait, and pray, as only time will tell if we got it or not".

Good luck to you and Hans!

BJ

Well see, now there's the rub, isn't it?  You could cite statistics, go into the details of micrometastasis, and what not, but in the end you just don't know.  And while all cancers are different, Melanoma really is one of the bad ones.

I did about 8 months of Interferon treatment and had to quit because of liver issues.  After I finished my initial treatments and my friends and family asked about my status, I simply told them, "For now at least, it appears that it is gone; however, melanoma is an aggressive cancer that often comes back so we really don't know for sure.  All we really can do for now is resume our normal lives, keep an eye on it, wait, and pray, as only time will tell if we got it or not".

Good luck to you and Hans!

BJ

Well see, now there's the rub, isn't it?  You could cite statistics, go into the details of micrometastasis, and what not, but in the end you just don't know.  And while all cancers are different, Melanoma really is one of the bad ones.

I did about 8 months of Interferon treatment and had to quit because of liver issues.  After I finished my initial treatments and my friends and family asked about my status, I simply told them, "For now at least, it appears that it is gone; however, melanoma is an aggressive cancer that often comes back so we really don't know for sure.  All we really can do for now is resume our normal lives, keep an eye on it, wait, and pray, as only time will tell if we got it or not".

Good luck to you and Hans!

BJ

Colleen, I am 3 years from a Stage 3a dx.   I'd say the majority of people that ask how I am doing just want to hear "I am fine ."  or something similar to that.  If thay ask to know more then I will go on to say that the Oncologist is still monitoring me closely for any recurrence but so far I have I clean bill of health.  But honestly, most people don't want to hear about it and that's fine.  It's mostly those that have had cancer or had a family member with cancer that want more information. 

Regarding Melanoma being so different from other cancers, I am not so sure that's true.  I know that prostate cancer can be very invasive and it can attack the bone many years after you think it is gone.  Pancreatic cancer is certainly a killer though it maybe in remission for years.  I am sure there are many others cancers to add to the list.  We are just to aware of the devastating nature of Melanoma.

Mary

Stage 3

Colleen, I am 3 years from a Stage 3a dx.   I'd say the majority of people that ask how I am doing just want to hear "I am fine ."  or something similar to that.  If thay ask to know more then I will go on to say that the Oncologist is still monitoring me closely for any recurrence but so far I have I clean bill of health.  But honestly, most people don't want to hear about it and that's fine.  It's mostly those that have had cancer or had a family member with cancer that want more information. 

Regarding Melanoma being so different from other cancers, I am not so sure that's true.  I know that prostate cancer can be very invasive and it can attack the bone many years after you think it is gone.  Pancreatic cancer is certainly a killer though it maybe in remission for years.  I am sure there are many others cancers to add to the list.  We are just to aware of the devastating nature of Melanoma.

Mary

Stage 3

Colleen, I am 3 years from a Stage 3a dx.   I'd say the majority of people that ask how I am doing just want to hear "I am fine ."  or something similar to that.  If thay ask to know more then I will go on to say that the Oncologist is still monitoring me closely for any recurrence but so far I have I clean bill of health.  But honestly, most people don't want to hear about it and that's fine.  It's mostly those that have had cancer or had a family member with cancer that want more information. 

Regarding Melanoma being so different from other cancers, I am not so sure that's true.  I know that prostate cancer can be very invasive and it can attack the bone many years after you think it is gone.  Pancreatic cancer is certainly a killer though it maybe in remission for years.  I am sure there are many others cancers to add to the list.  We are just to aware of the devastating nature of Melanoma.

Mary

Stage 3

I am a  stage 3a diagnosed Jan of this year. I had on lymph node positive. The mole and lymph node have been removed and i too am doing the watch and wait. When i first started seeing the oncologists my frustration level was through the roof. I have had not 2 but 3 opinions all saying to watch nd wait. I always thought doing that meant i was doing nothing. Over the last several weeks i have come to realize this is the best for me for many reason. The main reason i chose this is to not burn a bridge i may need later.Like everyone has said we will never b free from this monster but we can become more knowledgeable about it. My mind set is I will never b completely rid of cancer but for now things r ok. So when im asked i usually tell them im watching and wait but for now theres no real signs of it. 

I am a  stage 3a diagnosed Jan of this year. I had on lymph node positive. The mole and lymph node have been removed and i too am doing the watch and wait. When i first started seeing the oncologists my frustration level was through the roof. I have had not 2 but 3 opinions all saying to watch nd wait. I always thought doing that meant i was doing nothing. Over the last several weeks i have come to realize this is the best for me for many reason. The main reason i chose this is to not burn a bridge i may need later.Like everyone has said we will never b free from this monster but we can become more knowledgeable about it. My mind set is I will never b completely rid of cancer but for now things r ok. So when im asked i usually tell them im watching and wait but for now theres no real signs of it. 

I am a  stage 3a diagnosed Jan of this year. I had on lymph node positive. The mole and lymph node have been removed and i too am doing the watch and wait. When i first started seeing the oncologists my frustration level was through the roof. I have had not 2 but 3 opinions all saying to watch nd wait. I always thought doing that meant i was doing nothing. Over the last several weeks i have come to realize this is the best for me for many reason. The main reason i chose this is to not burn a bridge i may need later.Like everyone has said we will never b free from this monster but we can become more knowledgeable about it. My mind set is I will never b completely rid of cancer but for now things r ok. So when im asked i usually tell them im watching and wait but for now theres no real signs of it. 

I am a stage 3a diagnosed Jan of this year. I had on lymph node positive. The mole and lymph node have been removed and i too am doing the watch and wait. When i first started seeing the oncologists my frustration level was through the roof. I have had not 2 but 3 opinions all saying to watch nd wait. I always thought doing that meant i was doing nothing. Over the last several weeks i have come to realize this is the best for me for many reason. The main reason i chose this is to not burn a bridge i may need later.Like everyone has said we will never b free from this monster but we can become more knowledgeable about it. My mind set is I will never b completely rid of cancer but for now things r ok. So when im asked i usually tell them im watching and wait but for now theres no real signs of it. 

I am a stage 3a diagnosed Jan of this year. I had on lymph node positive. The mole and lymph node have been removed and i too am doing the watch and wait. When i first started seeing the oncologists my frustration level was through the roof. I have had not 2 but 3 opinions all saying to watch nd wait. I always thought doing that meant i was doing nothing. Over the last several weeks i have come to realize this is the best for me for many reason. The main reason i chose this is to not burn a bridge i may need later.Like everyone has said we will never b free from this monster but we can become more knowledgeable about it. My mind set is I will never b completely rid of cancer but for now things r ok. So when im asked i usually tell them im watching and wait but for now theres no real signs of it. 

I am a stage 3a diagnosed Jan of this year. I had on lymph node positive. The mole and lymph node have been removed and i too am doing the watch and wait. When i first started seeing the oncologists my frustration level was through the roof. I have had not 2 but 3 opinions all saying to watch nd wait. I always thought doing that meant i was doing nothing. Over the last several weeks i have come to realize this is the best for me for many reason. The main reason i chose this is to not burn a bridge i may need later.Like everyone has said we will never b free from this monster but we can become more knowledgeable about it. My mind set is I will never b completely rid of cancer but for now things r ok. So when im asked i usually tell them im watching and wait but for now theres no real signs of it.