› Forums › Cutaneous Melanoma Community › Need some reassurance, please
- This topic has 45 replies, 5 voices, and was last updated 12 years, 11 months ago by
natasha.
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- April 4, 2013 at 3:51 am
Ok, so, I got diagnosed with in situ on the left arm. I went in probably within 6 weeks of noticing the first signs of change. The papule was so small (pen or pencil tip size) and black. Dermatologist almost did not send it. Said she thought it was "nothing to worry about". Well, it was in situ. My measurements were pretty small, I cannot remember what.. but the pathology report showed the surrounding skin was "normal" and "cancer free". I got it removed with 0.5mm surrounding area within 2 days of results.
Ok, so, I got diagnosed with in situ on the left arm. I went in probably within 6 weeks of noticing the first signs of change. The papule was so small (pen or pencil tip size) and black. Dermatologist almost did not send it. Said she thought it was "nothing to worry about". Well, it was in situ. My measurements were pretty small, I cannot remember what.. but the pathology report showed the surrounding skin was "normal" and "cancer free". I got it removed with 0.5mm surrounding area within 2 days of results. I keep reading all these horror stories of it metastisizing.. it scares me. I am an RN so, I think the worst.. I cannot see just statitstical reassurance, and look into the worst case scenario… My dad's brother died of melanoma 8 yrs ago at 43.. but it was melanoma caught late..
I need some reassurance, or success stories, or personal experiences, or tips!.. please help
Shelly
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- April 4, 2013 at 4:35 am
Stage IB, 21 years out this month. 3 primaries (one in situ, two stage IB).
If you want to continue to read worst case scenarios, hang around here. This is where the "exceptions" come. Why would anyone in their right mind who had an in situ melanoma hang around here once they've got over the shock of diagnosis? You should also understand that just because someone says they were in situ, doesn't mean they were. Sometimes, people just don't get it right. And sometimes, pathology may be wrong. Not read by a dermatopathologist or something isn't caught. Lots of reasons for exceptions that really don't apply to you.
I moderate an email group (stage 0/1) for people just like yourself – too anxious to stay on this site. The group isn't always the most active, but everyone there can relate to where you are now — they've been there themselves. Truly your peers. It's hard not to let the anxiety get to you when you read all the stories of advanced stages. And with you in the medical field, your imagination can go even more wild. Click on my name to send me an email if you are interested.
And while you don't want statistical reassurance, the reality is the numbers are on your side. Most of us here would want them if we could. The first year is the worst, as time goes on, things do tend to get better. Melanoma doesn't go away, but it takes a back seat to life. If you let the anxiety from melanoma take over your life now, melanoma wins regardless if it ever returns. Don't give it that power over you!!!
Best wishes,
Janner
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- April 4, 2013 at 4:35 am
Stage IB, 21 years out this month. 3 primaries (one in situ, two stage IB).
If you want to continue to read worst case scenarios, hang around here. This is where the "exceptions" come. Why would anyone in their right mind who had an in situ melanoma hang around here once they've got over the shock of diagnosis? You should also understand that just because someone says they were in situ, doesn't mean they were. Sometimes, people just don't get it right. And sometimes, pathology may be wrong. Not read by a dermatopathologist or something isn't caught. Lots of reasons for exceptions that really don't apply to you.
I moderate an email group (stage 0/1) for people just like yourself – too anxious to stay on this site. The group isn't always the most active, but everyone there can relate to where you are now — they've been there themselves. Truly your peers. It's hard not to let the anxiety get to you when you read all the stories of advanced stages. And with you in the medical field, your imagination can go even more wild. Click on my name to send me an email if you are interested.
And while you don't want statistical reassurance, the reality is the numbers are on your side. Most of us here would want them if we could. The first year is the worst, as time goes on, things do tend to get better. Melanoma doesn't go away, but it takes a back seat to life. If you let the anxiety from melanoma take over your life now, melanoma wins regardless if it ever returns. Don't give it that power over you!!!
Best wishes,
Janner
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- April 4, 2013 at 12:17 pm
To the both of you: I did not know that this site showed worst case scenarios. I did not come here to get scared, was looking more for a group like Janner mentioned. Therefore, Janner, YES send me links because that is the kind of "support" I am wanting.
You guys said a couple things that helped immensely. Janner, I love how you said that melanoma "wins" whether it returns or not if I keep obsessing… SO true!!! Next poster (sorry, I cannot get your name to show on this post!!) I want to thank you for sharing those two stories that helped me feel sooo much better!
Thank you both!
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- April 4, 2013 at 12:17 pm
To the both of you: I did not know that this site showed worst case scenarios. I did not come here to get scared, was looking more for a group like Janner mentioned. Therefore, Janner, YES send me links because that is the kind of "support" I am wanting.
You guys said a couple things that helped immensely. Janner, I love how you said that melanoma "wins" whether it returns or not if I keep obsessing… SO true!!! Next poster (sorry, I cannot get your name to show on this post!!) I want to thank you for sharing those two stories that helped me feel sooo much better!
Thank you both!
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- April 4, 2013 at 1:44 pm
Think about it. A place like this attracts two sets of people: newly diagnosed and those actively fighting disease. It doesn't reflect long term survivors who do nothing past their initial treatment because…… they have no reason to post! There are a few of us longtimers that stay around just to provide perspective, but I'm not really on this board for anything else. So if you're newly diagnosed, you see the people fighting who might have had a recurrence and your view of the melanoma world is skewed if you use this site and its stories as a representative sample of the melanoma warriors..
The stage 0/1 group is an email list, you have to email me. The criteria for joining is that you are stage 0/1 and are the patient, not caregiver. It is a private group and I have to have an email address from you to "invite" you.
Janner
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- April 4, 2013 at 1:44 pm
Think about it. A place like this attracts two sets of people: newly diagnosed and those actively fighting disease. It doesn't reflect long term survivors who do nothing past their initial treatment because…… they have no reason to post! There are a few of us longtimers that stay around just to provide perspective, but I'm not really on this board for anything else. So if you're newly diagnosed, you see the people fighting who might have had a recurrence and your view of the melanoma world is skewed if you use this site and its stories as a representative sample of the melanoma warriors..
The stage 0/1 group is an email list, you have to email me. The criteria for joining is that you are stage 0/1 and are the patient, not caregiver. It is a private group and I have to have an email address from you to "invite" you.
Janner
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- April 4, 2013 at 1:44 pm
Think about it. A place like this attracts two sets of people: newly diagnosed and those actively fighting disease. It doesn't reflect long term survivors who do nothing past their initial treatment because…… they have no reason to post! There are a few of us longtimers that stay around just to provide perspective, but I'm not really on this board for anything else. So if you're newly diagnosed, you see the people fighting who might have had a recurrence and your view of the melanoma world is skewed if you use this site and its stories as a representative sample of the melanoma warriors..
The stage 0/1 group is an email list, you have to email me. The criteria for joining is that you are stage 0/1 and are the patient, not caregiver. It is a private group and I have to have an email address from you to "invite" you.
Janner
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- April 4, 2013 at 12:17 pm
To the both of you: I did not know that this site showed worst case scenarios. I did not come here to get scared, was looking more for a group like Janner mentioned. Therefore, Janner, YES send me links because that is the kind of "support" I am wanting.
You guys said a couple things that helped immensely. Janner, I love how you said that melanoma "wins" whether it returns or not if I keep obsessing… SO true!!! Next poster (sorry, I cannot get your name to show on this post!!) I want to thank you for sharing those two stories that helped me feel sooo much better!
Thank you both!
-
- April 4, 2013 at 4:35 am
Stage IB, 21 years out this month. 3 primaries (one in situ, two stage IB).
If you want to continue to read worst case scenarios, hang around here. This is where the "exceptions" come. Why would anyone in their right mind who had an in situ melanoma hang around here once they've got over the shock of diagnosis? You should also understand that just because someone says they were in situ, doesn't mean they were. Sometimes, people just don't get it right. And sometimes, pathology may be wrong. Not read by a dermatopathologist or something isn't caught. Lots of reasons for exceptions that really don't apply to you.
I moderate an email group (stage 0/1) for people just like yourself – too anxious to stay on this site. The group isn't always the most active, but everyone there can relate to where you are now — they've been there themselves. Truly your peers. It's hard not to let the anxiety get to you when you read all the stories of advanced stages. And with you in the medical field, your imagination can go even more wild. Click on my name to send me an email if you are interested.
And while you don't want statistical reassurance, the reality is the numbers are on your side. Most of us here would want them if we could. The first year is the worst, as time goes on, things do tend to get better. Melanoma doesn't go away, but it takes a back seat to life. If you let the anxiety from melanoma take over your life now, melanoma wins regardless if it ever returns. Don't give it that power over you!!!
Best wishes,
Janner
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- April 4, 2013 at 11:54 am
Shelly, as Janner said, the best thing you can do for yourself is to stop reading about melanoma. You were alert and educated about melanoma, you noticed the change and got the lesion removed right away, and you are now in the clear. Praise the Lord, pat yourself on the back, and continue being vigilant as you have been doing– it worked!
When Janner says that sometimes a diagnosis of "melanoma in situ" is wrong, let me give you two examples.
Twenty years ago, my husband was in the same situation as you. He noticed a small freckle on his arm, about the size of a pencil point, turn black. He immediately had it removed. The dermatologist thought it was "nothing" but sent it to pathology anyway. The path report came back as "melanoma in situ" with a Breslow depth of 0.26mm and he had a WLE. He continues to get thorough skin checks regularly but has had no further problems.
The other case is my brother. He had a lesion on his leg. It was large (1.0 x 0.5 cm) mottled brown and black with irregular margins, and it was growing. He refused to have it biopsied for 2 years and when he finally did get it biopsied, the path report said "melanoma in situ" and no Breslow depth was reported. He was diagnosed as Stage IV 9 months later and died last month.
I'm sure you can see the difference between these 2 cases– my husband's lesion was TINY, he took appropriate action immediately and he is fine. His diagnosis of "in situ" was correct. My brother's lesion LOOKED like a large, actively growing melanoma. He ignored it for 2 years. The path report of "in situ" was clearly incorrect. For him, a diagnosis of "in situ" made no sense in the overall context of the lesion (and believe me, I gave the dematology and pathology departments a piece of my mind– idiots!)
Your case is like my husband's. You no longer have melanoma. You are cured! Now thank your lucky stars, stop reading about melanoma, and get on with your life.
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- April 4, 2013 at 11:54 am
Shelly, as Janner said, the best thing you can do for yourself is to stop reading about melanoma. You were alert and educated about melanoma, you noticed the change and got the lesion removed right away, and you are now in the clear. Praise the Lord, pat yourself on the back, and continue being vigilant as you have been doing– it worked!
When Janner says that sometimes a diagnosis of "melanoma in situ" is wrong, let me give you two examples.
Twenty years ago, my husband was in the same situation as you. He noticed a small freckle on his arm, about the size of a pencil point, turn black. He immediately had it removed. The dermatologist thought it was "nothing" but sent it to pathology anyway. The path report came back as "melanoma in situ" with a Breslow depth of 0.26mm and he had a WLE. He continues to get thorough skin checks regularly but has had no further problems.
The other case is my brother. He had a lesion on his leg. It was large (1.0 x 0.5 cm) mottled brown and black with irregular margins, and it was growing. He refused to have it biopsied for 2 years and when he finally did get it biopsied, the path report said "melanoma in situ" and no Breslow depth was reported. He was diagnosed as Stage IV 9 months later and died last month.
I'm sure you can see the difference between these 2 cases– my husband's lesion was TINY, he took appropriate action immediately and he is fine. His diagnosis of "in situ" was correct. My brother's lesion LOOKED like a large, actively growing melanoma. He ignored it for 2 years. The path report of "in situ" was clearly incorrect. For him, a diagnosis of "in situ" made no sense in the overall context of the lesion (and believe me, I gave the dematology and pathology departments a piece of my mind– idiots!)
Your case is like my husband's. You no longer have melanoma. You are cured! Now thank your lucky stars, stop reading about melanoma, and get on with your life.
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- April 4, 2013 at 11:54 am
Shelly, as Janner said, the best thing you can do for yourself is to stop reading about melanoma. You were alert and educated about melanoma, you noticed the change and got the lesion removed right away, and you are now in the clear. Praise the Lord, pat yourself on the back, and continue being vigilant as you have been doing– it worked!
When Janner says that sometimes a diagnosis of "melanoma in situ" is wrong, let me give you two examples.
Twenty years ago, my husband was in the same situation as you. He noticed a small freckle on his arm, about the size of a pencil point, turn black. He immediately had it removed. The dermatologist thought it was "nothing" but sent it to pathology anyway. The path report came back as "melanoma in situ" with a Breslow depth of 0.26mm and he had a WLE. He continues to get thorough skin checks regularly but has had no further problems.
The other case is my brother. He had a lesion on his leg. It was large (1.0 x 0.5 cm) mottled brown and black with irregular margins, and it was growing. He refused to have it biopsied for 2 years and when he finally did get it biopsied, the path report said "melanoma in situ" and no Breslow depth was reported. He was diagnosed as Stage IV 9 months later and died last month.
I'm sure you can see the difference between these 2 cases– my husband's lesion was TINY, he took appropriate action immediately and he is fine. His diagnosis of "in situ" was correct. My brother's lesion LOOKED like a large, actively growing melanoma. He ignored it for 2 years. The path report of "in situ" was clearly incorrect. For him, a diagnosis of "in situ" made no sense in the overall context of the lesion (and believe me, I gave the dematology and pathology departments a piece of my mind– idiots!)
Your case is like my husband's. You no longer have melanoma. You are cured! Now thank your lucky stars, stop reading about melanoma, and get on with your life.
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- April 4, 2013 at 12:25 pm
actually in situ is not correct if there is a breslow depth of 0.26mm. . any depth means it's not in situ. . .0.26mm would be Stage I, not Stage 0. . so in situ was also incorrect in that case technically
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- April 4, 2013 at 1:21 pm
Anonymous: I wondered the same thing as my Dr. when I asked her what my depth was said, "There is no depth. So it's zero."
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- April 4, 2013 at 1:21 pm
Anonymous: I wondered the same thing as my Dr. when I asked her what my depth was said, "There is no depth. So it's zero."
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- April 4, 2013 at 1:50 pm
Well, it does illustrate my point. I've seen this many times in the past. Someone saying 'in situ' with a depth. If it has a depth, we don't classify it as in situ today and it carries the risk of a stage I lesion, not a stage 0 in today's standards. I understand about the time thing. I've had 3 primaries – two were stage IA and one in situ. But if I look at the primaries in today's staging, I am stage IB. Unless I keep up on the current stuff, I would still be saying I am stage IA as that is what I was when diagnosed.
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- April 4, 2013 at 1:50 pm
Well, it does illustrate my point. I've seen this many times in the past. Someone saying 'in situ' with a depth. If it has a depth, we don't classify it as in situ today and it carries the risk of a stage I lesion, not a stage 0 in today's standards. I understand about the time thing. I've had 3 primaries – two were stage IA and one in situ. But if I look at the primaries in today's staging, I am stage IB. Unless I keep up on the current stuff, I would still be saying I am stage IA as that is what I was when diagnosed.
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- April 4, 2013 at 1:50 pm
Well, it does illustrate my point. I've seen this many times in the past. Someone saying 'in situ' with a depth. If it has a depth, we don't classify it as in situ today and it carries the risk of a stage I lesion, not a stage 0 in today's standards. I understand about the time thing. I've had 3 primaries – two were stage IA and one in situ. But if I look at the primaries in today's staging, I am stage IB. Unless I keep up on the current stuff, I would still be saying I am stage IA as that is what I was when diagnosed.
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- April 4, 2013 at 1:21 pm
Anonymous: I wondered the same thing as my Dr. when I asked her what my depth was said, "There is no depth. So it's zero."
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- April 4, 2013 at 1:44 pm
0.26mm did penetrate the papillary dermis. . although be it superficially and microinvasively. . it still did penetrate it, so is not in situ
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- April 4, 2013 at 1:58 pm
Anonymous, please don't make definitive statements about things you know nothing about. In point of fact, the thickness of the epidermis varies considerably from person to person and from point to point on the body. My husband's melanoma WAS 0.26mm and it did NOT penetrate the papillary dermis.
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- April 4, 2013 at 1:58 pm
Anonymous, please don't make definitive statements about things you know nothing about. In point of fact, the thickness of the epidermis varies considerably from person to person and from point to point on the body. My husband's melanoma WAS 0.26mm and it did NOT penetrate the papillary dermis.
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- April 4, 2013 at 2:04 pm
i don't know, then i'm more confused than ever. . I thought any measured depth was by definition not in-situ. . that a lesion confined to the epidermis measured 0 depth. . once it breaks through the epidermis, that is the point from which they measure. . . so any depth at all. . 0.10mm, 0.20mm. . is measured from the point of below the epidermis, which would be papillary dermis. . . you know more about the lesion than I do obviously. . but the medical definitions are what they are. I don't get it.
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- April 4, 2013 at 2:04 pm
i don't know, then i'm more confused than ever. . I thought any measured depth was by definition not in-situ. . that a lesion confined to the epidermis measured 0 depth. . once it breaks through the epidermis, that is the point from which they measure. . . so any depth at all. . 0.10mm, 0.20mm. . is measured from the point of below the epidermis, which would be papillary dermis. . . you know more about the lesion than I do obviously. . but the medical definitions are what they are. I don't get it.
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- April 4, 2013 at 2:04 pm
i don't know, then i'm more confused than ever. . I thought any measured depth was by definition not in-situ. . that a lesion confined to the epidermis measured 0 depth. . once it breaks through the epidermis, that is the point from which they measure. . . so any depth at all. . 0.10mm, 0.20mm. . is measured from the point of below the epidermis, which would be papillary dermis. . . you know more about the lesion than I do obviously. . but the medical definitions are what they are. I don't get it.
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- April 4, 2013 at 1:58 pm
Anonymous, please don't make definitive statements about things you know nothing about. In point of fact, the thickness of the epidermis varies considerably from person to person and from point to point on the body. My husband's melanoma WAS 0.26mm and it did NOT penetrate the papillary dermis.
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