› Forums › General Melanoma Community › Waiting on WLE results with questions and worry
- This topic has 33 replies, 4 voices, and was last updated 8 years, 1 month ago by
amlye.
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- March 13, 2016 at 6:32 pm
Hi, I'm new here. My 40 year old husband was just diagnosed with t1a melanoma. (His mole taken was on his back). I've read enough online to know the prognostic indicators from his path report are Breslow .45mm, <1 mitosis, no ulceration, and margins "not involved" on biopsy. I realize we are lucky to have caught this early on. However, I am a nervous wreck!! My husband is quite the opposite, very calm and doesn't consider himself as "having cancer". He is able to wait out the results from his WLE (which was this past Thursday) without any apparent worry. I have read that his chances of things coming back clear from the WLE are good, and I am grateful for those odds! I am looking for some reassurance I suppose, although I know there is no one that can tell me for sure that he will be fine. I don't like him to see me get upset so I thought I'd ask here. I've read quite a bit and while I have heard some pretty scary stories on my searches, I have learned a lot about what we are dealing with. I'm wondering if someone in a previous but similar situation can tell me if they have had any recurrences or what the liklihood is? His doc didn't check his lymph nodes, which I know is standard for his thin melanoma, but shouldn't he have at least felt for any lumps? This waiting game is awful!! I am not doubting his doc's competency, he comes well reviewed and is a dermatologist specializing in melanoma. Biopsies were sent to a dermatopathological (sp?) lab. I am more looking for positive stories, perhaps from someone who has been in our situation with similar findings. I have read so many stories about stage I coming back more advanced and with all of he what if's, especially when I think of our kids, I am overwhelmed with worry! I appreciate your replies.
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- March 13, 2016 at 11:12 pm
If the margins were clear on the biopsy, the WLE path report will have nothing exciting either. He has a great prognosis. What you don't see when you read stories on the internet is the vast number of people like your husband who NEVER recur. They have no reason to post once they are past the shock of the diagnosis. You do see the "exceptions" or low percentages who have a recurrence because they have a reason to come back and ask questions on treatment options. I have been on this site since 2001 and have talked to countless early stagers over the years and the reality for stage 1a is just not represented well. BTW, stage 1a nowadays is different than it was 5 years ago. The staging has changed and it is a much more exclusive club now with even better survival rates. Some people who were diagnosed before the staging change do not realize their lesions would be staged differently today. Two of my three primaries were stage 1a when I was diagnosed, but they would be stage 1b in today's staging.
Relax, the WLE will be fine and you will move on. Your husband has the right take on things. At this point, there is NOTHING to worry about. The lesion was caught extremely early and he has a fantastic prognosis. Go with the good stuff and let the worry go. If, in the extremely low chance he ever deals with melanoma again, you can worry THEN. Treatments are changing fast and what is relevant now may not be the same in 6 months. So…. relax.
Janner
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- March 14, 2016 at 12:44 am
Janner, your words are comforting and I sincerely thank you for your knowledge and your reply. It sounds like you have done the same for several, that is so kind! It makes sense that most of those diagnosed early on are able to move on and never have anything more to deal with, so they don't come back to the forums. That right there makes me feel better. I'm a total worrier, and I know that it is often a time waster but it was my first reaction to my husband's biopsy results. I needed to find out about what his biopsy was indicating, he didn't even read it! I read of an updated version of survival rates (2010 I believe) but couldn't find it. I was hoping for something reassuring but instead ran into a bunch of articles with conclusions about how thin melanomas aren't necessarily showing to have as great of a prognosis as believed, and other similar research with horrible stage I outcomes. Not sure how reliable they were but it spiraled into a bit of an obsession for me trying to find something positive, and there wasn't much! I am going to try to stop my late night searches, reading survival rates, trying to find info on how likely it is for this to go south, and making myself crazy. I'll try deep breathing until these results get here. I despise this waiting game! Thank you again 🙂
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- March 14, 2016 at 2:05 am
2 of my 3 primaries were deeper than your husbands (both have mitosis which makes me stage 1b) and I'm almost 24 years out from my first primary. 15 from my deepest. I'm not the exception, I'm among the vast majority. Survival stats are pointless right now because more new treatments have been introduced in the last 5 years than had been introduced in the last 30. Survival stats are just increasing and all stats are out of date and will be for quite some time.
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- March 14, 2016 at 2:05 am
2 of my 3 primaries were deeper than your husbands (both have mitosis which makes me stage 1b) and I'm almost 24 years out from my first primary. 15 from my deepest. I'm not the exception, I'm among the vast majority. Survival stats are pointless right now because more new treatments have been introduced in the last 5 years than had been introduced in the last 30. Survival stats are just increasing and all stats are out of date and will be for quite some time.
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- March 14, 2016 at 11:50 am
He will be going for check ups every six months for a while. Hopefully that, along with self checks, will catch anything early. He has so many moles, it's a little intimidating to me. I definitely have a new outlook on our sun time and protection. Not just for him but for our whole family.
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- March 14, 2016 at 11:50 am
He will be going for check ups every six months for a while. Hopefully that, along with self checks, will catch anything early. He has so many moles, it's a little intimidating to me. I definitely have a new outlook on our sun time and protection. Not just for him but for our whole family.
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- March 14, 2016 at 11:50 am
He will be going for check ups every six months for a while. Hopefully that, along with self checks, will catch anything early. He has so many moles, it's a little intimidating to me. I definitely have a new outlook on our sun time and protection. Not just for him but for our whole family.
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- March 14, 2016 at 2:42 pm
PHOTOGRAPHS. He needs to have photographs of his moles. Then you can biopsy the ones that change and leave alone the ones that are stable. "Mole Mapping" was designed for people like him, but that tool is hard to find in a clinical situation. So taking photographs of his moles is the next best step. Using a camera with a good macro (up close) setting, take a picture of a mole in lighting you can duplicate. Lighting is important because in different lighting, a mole might appear to look different. Take an up close pic, then take a picture further back – one that would show say — left lower arm. If you can put a ruler next to something as you photograph it and even a reference # so you have some way to describe a particular mole and reference back to it, all the better. Derms are great, but they cannot be expected to remember how any particular mole looked at the last visit, so photos are a great tool to avoid unnecessary biopsies and only biopsy those lesions that show change! In my opinion, it is more important for the patient to monitor themselves than it is for the derm. I caught all my three primaries. I expect to catch additional ones if I find them. I still see my derm regularly but I don't expect him to see something I haven't already identified.
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- March 14, 2016 at 2:42 pm
PHOTOGRAPHS. He needs to have photographs of his moles. Then you can biopsy the ones that change and leave alone the ones that are stable. "Mole Mapping" was designed for people like him, but that tool is hard to find in a clinical situation. So taking photographs of his moles is the next best step. Using a camera with a good macro (up close) setting, take a picture of a mole in lighting you can duplicate. Lighting is important because in different lighting, a mole might appear to look different. Take an up close pic, then take a picture further back – one that would show say — left lower arm. If you can put a ruler next to something as you photograph it and even a reference # so you have some way to describe a particular mole and reference back to it, all the better. Derms are great, but they cannot be expected to remember how any particular mole looked at the last visit, so photos are a great tool to avoid unnecessary biopsies and only biopsy those lesions that show change! In my opinion, it is more important for the patient to monitor themselves than it is for the derm. I caught all my three primaries. I expect to catch additional ones if I find them. I still see my derm regularly but I don't expect him to see something I haven't already identified.
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- March 18, 2016 at 6:18 pm
Hi…I'm new to this site but just wanted to say that I'm in exactly the same situation as you and found this thread of comments really helpful especially what Janner had to say.
My husband had his WLE the day before yesterday and I'm incredibly anxious. Hoping and praying that it will come back clear. I know nothing more about the diagnosis than it's Stage 1 and its 0.5. We don't know if it's 1A or 1B. I'm slightly frustrated by this and think the consultant should have informed us and given a little more detail. At the time we were in shock and just took the information we were given. It was only once home and researched I realised how much more he could have told us.
The wound now is approx 5 inches long about twice the length of the original op. We were told that an extra 1cm margin was to be taken away with the WLE but we feel this was a very generous 1cm!
I was encouraged to hear yoiur husband came back all clear and hope and pray my husbands will be he same
-
- March 18, 2016 at 6:18 pm
Hi…I'm new to this site but just wanted to say that I'm in exactly the same situation as you and found this thread of comments really helpful especially what Janner had to say.
My husband had his WLE the day before yesterday and I'm incredibly anxious. Hoping and praying that it will come back clear. I know nothing more about the diagnosis than it's Stage 1 and its 0.5. We don't know if it's 1A or 1B. I'm slightly frustrated by this and think the consultant should have informed us and given a little more detail. At the time we were in shock and just took the information we were given. It was only once home and researched I realised how much more he could have told us.
The wound now is approx 5 inches long about twice the length of the original op. We were told that an extra 1cm margin was to be taken away with the WLE but we feel this was a very generous 1cm!
I was encouraged to hear yoiur husband came back all clear and hope and pray my husbands will be he same
-
- March 19, 2016 at 6:26 pm
I know how stressful the waiting can be, I was a nervous wreck! My advice, take the advice from his thread, from those who have gone through it and stay away from the Internet. I read some pretty scary stories but they are not the likely situation to be in. I'm a "prepare for the worst" type of girl, but that did not help the waiting at all! I know it's easier said than done, but if your husband's stage is the same as mine, just like Janner said, he has a great prognosis!! Try to stay positive and try deep breathing. I'm hoping your husband's results come back clear, and chances are THEY WILL!!
-
- March 19, 2016 at 6:26 pm
I know how stressful the waiting can be, I was a nervous wreck! My advice, take the advice from his thread, from those who have gone through it and stay away from the Internet. I read some pretty scary stories but they are not the likely situation to be in. I'm a "prepare for the worst" type of girl, but that did not help the waiting at all! I know it's easier said than done, but if your husband's stage is the same as mine, just like Janner said, he has a great prognosis!! Try to stay positive and try deep breathing. I'm hoping your husband's results come back clear, and chances are THEY WILL!!
-
- March 19, 2016 at 6:26 pm
I know how stressful the waiting can be, I was a nervous wreck! My advice, take the advice from his thread, from those who have gone through it and stay away from the Internet. I read some pretty scary stories but they are not the likely situation to be in. I'm a "prepare for the worst" type of girl, but that did not help the waiting at all! I know it's easier said than done, but if your husband's stage is the same as mine, just like Janner said, he has a great prognosis!! Try to stay positive and try deep breathing. I'm hoping your husband's results come back clear, and chances are THEY WILL!!
-
- March 18, 2016 at 6:18 pm
Hi…I'm new to this site but just wanted to say that I'm in exactly the same situation as you and found this thread of comments really helpful especially what Janner had to say.
My husband had his WLE the day before yesterday and I'm incredibly anxious. Hoping and praying that it will come back clear. I know nothing more about the diagnosis than it's Stage 1 and its 0.5. We don't know if it's 1A or 1B. I'm slightly frustrated by this and think the consultant should have informed us and given a little more detail. At the time we were in shock and just took the information we were given. It was only once home and researched I realised how much more he could have told us.
The wound now is approx 5 inches long about twice the length of the original op. We were told that an extra 1cm margin was to be taken away with the WLE but we feel this was a very generous 1cm!
I was encouraged to hear yoiur husband came back all clear and hope and pray my husbands will be he same
-
- March 14, 2016 at 2:42 pm
PHOTOGRAPHS. He needs to have photographs of his moles. Then you can biopsy the ones that change and leave alone the ones that are stable. "Mole Mapping" was designed for people like him, but that tool is hard to find in a clinical situation. So taking photographs of his moles is the next best step. Using a camera with a good macro (up close) setting, take a picture of a mole in lighting you can duplicate. Lighting is important because in different lighting, a mole might appear to look different. Take an up close pic, then take a picture further back – one that would show say — left lower arm. If you can put a ruler next to something as you photograph it and even a reference # so you have some way to describe a particular mole and reference back to it, all the better. Derms are great, but they cannot be expected to remember how any particular mole looked at the last visit, so photos are a great tool to avoid unnecessary biopsies and only biopsy those lesions that show change! In my opinion, it is more important for the patient to monitor themselves than it is for the derm. I caught all my three primaries. I expect to catch additional ones if I find them. I still see my derm regularly but I don't expect him to see something I haven't already identified.
-
- March 14, 2016 at 2:05 am
2 of my 3 primaries were deeper than your husbands (both have mitosis which makes me stage 1b) and I'm almost 24 years out from my first primary. 15 from my deepest. I'm not the exception, I'm among the vast majority. Survival stats are pointless right now because more new treatments have been introduced in the last 5 years than had been introduced in the last 30. Survival stats are just increasing and all stats are out of date and will be for quite some time.
-
- March 14, 2016 at 12:44 am
Janner, your words are comforting and I sincerely thank you for your knowledge and your reply. It sounds like you have done the same for several, that is so kind! It makes sense that most of those diagnosed early on are able to move on and never have anything more to deal with, so they don't come back to the forums. That right there makes me feel better. I'm a total worrier, and I know that it is often a time waster but it was my first reaction to my husband's biopsy results. I needed to find out about what his biopsy was indicating, he didn't even read it! I read of an updated version of survival rates (2010 I believe) but couldn't find it. I was hoping for something reassuring but instead ran into a bunch of articles with conclusions about how thin melanomas aren't necessarily showing to have as great of a prognosis as believed, and other similar research with horrible stage I outcomes. Not sure how reliable they were but it spiraled into a bit of an obsession for me trying to find something positive, and there wasn't much! I am going to try to stop my late night searches, reading survival rates, trying to find info on how likely it is for this to go south, and making myself crazy. I'll try deep breathing until these results get here. I despise this waiting game! Thank you again 🙂
-
- March 14, 2016 at 12:44 am
Janner, your words are comforting and I sincerely thank you for your knowledge and your reply. It sounds like you have done the same for several, that is so kind! It makes sense that most of those diagnosed early on are able to move on and never have anything more to deal with, so they don't come back to the forums. That right there makes me feel better. I'm a total worrier, and I know that it is often a time waster but it was my first reaction to my husband's biopsy results. I needed to find out about what his biopsy was indicating, he didn't even read it! I read of an updated version of survival rates (2010 I believe) but couldn't find it. I was hoping for something reassuring but instead ran into a bunch of articles with conclusions about how thin melanomas aren't necessarily showing to have as great of a prognosis as believed, and other similar research with horrible stage I outcomes. Not sure how reliable they were but it spiraled into a bit of an obsession for me trying to find something positive, and there wasn't much! I am going to try to stop my late night searches, reading survival rates, trying to find info on how likely it is for this to go south, and making myself crazy. I'll try deep breathing until these results get here. I despise this waiting game! Thank you again 🙂
-
- March 13, 2016 at 11:12 pm
If the margins were clear on the biopsy, the WLE path report will have nothing exciting either. He has a great prognosis. What you don't see when you read stories on the internet is the vast number of people like your husband who NEVER recur. They have no reason to post once they are past the shock of the diagnosis. You do see the "exceptions" or low percentages who have a recurrence because they have a reason to come back and ask questions on treatment options. I have been on this site since 2001 and have talked to countless early stagers over the years and the reality for stage 1a is just not represented well. BTW, stage 1a nowadays is different than it was 5 years ago. The staging has changed and it is a much more exclusive club now with even better survival rates. Some people who were diagnosed before the staging change do not realize their lesions would be staged differently today. Two of my three primaries were stage 1a when I was diagnosed, but they would be stage 1b in today's staging.
Relax, the WLE will be fine and you will move on. Your husband has the right take on things. At this point, there is NOTHING to worry about. The lesion was caught extremely early and he has a fantastic prognosis. Go with the good stuff and let the worry go. If, in the extremely low chance he ever deals with melanoma again, you can worry THEN. Treatments are changing fast and what is relevant now may not be the same in 6 months. So…. relax.
Janner
-
- March 13, 2016 at 11:12 pm
If the margins were clear on the biopsy, the WLE path report will have nothing exciting either. He has a great prognosis. What you don't see when you read stories on the internet is the vast number of people like your husband who NEVER recur. They have no reason to post once they are past the shock of the diagnosis. You do see the "exceptions" or low percentages who have a recurrence because they have a reason to come back and ask questions on treatment options. I have been on this site since 2001 and have talked to countless early stagers over the years and the reality for stage 1a is just not represented well. BTW, stage 1a nowadays is different than it was 5 years ago. The staging has changed and it is a much more exclusive club now with even better survival rates. Some people who were diagnosed before the staging change do not realize their lesions would be staged differently today. Two of my three primaries were stage 1a when I was diagnosed, but they would be stage 1b in today's staging.
Relax, the WLE will be fine and you will move on. Your husband has the right take on things. At this point, there is NOTHING to worry about. The lesion was caught extremely early and he has a fantastic prognosis. Go with the good stuff and let the worry go. If, in the extremely low chance he ever deals with melanoma again, you can worry THEN. Treatments are changing fast and what is relevant now may not be the same in 6 months. So…. relax.
Janner
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Tagged: cutaneous melanoma
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