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- This topic has 39 replies, 7 voices, and was last updated 13 years, 7 months ago by
sedona.
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- January 30, 2012 at 5:36 pm
I was diagnosed w/level 3 malignant spreading melanoma in 2009. I was told after the removal of tumor &lymph nodes, stadge lla it seems that the drs aren’ t to concerned about follow up! Should I request pet scan or lab to see if anything is going on that I can’t see? why do alot of people act like melanoma is no big deal?I was diagnosed w/level 3 malignant spreading melanoma in 2009. I was told after the removal of tumor &lymph nodes, stadge lla it seems that the drs aren’ t to concerned about follow up! Should I request pet scan or lab to see if anything is going on that I can’t see? why do alot of people act like melanoma is no big deal?
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- January 30, 2012 at 10:07 pm
Hi,
I'm new here and was diagnosed with stage IIa melanoma in late 2008. My Dr. sent me to an oncologist who said I was 'cured' but wanted me to come back to see him every month or so.
I also went to a dermatologist for most of the first year but got fed up because they wanted to cut off a mole every time I went. Then when I would go back for stitches they would want to cut off more at the same spot the next month because they were not normal (forget the right word). They weren't melanoma just 'not normal'.
I was so fed up with these greedy doctors I didn't go to any of them for over 2 years but just last week my internal med dr. gave me an order for a PET CT exam.
What did your doctor say you should do for follow up? Did they say to go to the dermatologist every 3 months?
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- February 2, 2012 at 12:06 am
If you are going to NAz dermatology, I would not think of any of them as greedy. Please go back for a full body check. I hope you PET scan is normal. We are get a scan every 3 mos, and not one has been normal. Scheduled for the end of Feb, and hope it is clear.
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- February 2, 2012 at 12:06 am
If you are going to NAz dermatology, I would not think of any of them as greedy. Please go back for a full body check. I hope you PET scan is normal. We are get a scan every 3 mos, and not one has been normal. Scheduled for the end of Feb, and hope it is clear.
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- February 2, 2012 at 12:06 am
If you are going to NAz dermatology, I would not think of any of them as greedy. Please go back for a full body check. I hope you PET scan is normal. We are get a scan every 3 mos, and not one has been normal. Scheduled for the end of Feb, and hope it is clear.
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- January 30, 2012 at 10:07 pm
Hi,
I'm new here and was diagnosed with stage IIa melanoma in late 2008. My Dr. sent me to an oncologist who said I was 'cured' but wanted me to come back to see him every month or so.
I also went to a dermatologist for most of the first year but got fed up because they wanted to cut off a mole every time I went. Then when I would go back for stitches they would want to cut off more at the same spot the next month because they were not normal (forget the right word). They weren't melanoma just 'not normal'.
I was so fed up with these greedy doctors I didn't go to any of them for over 2 years but just last week my internal med dr. gave me an order for a PET CT exam.
What did your doctor say you should do for follow up? Did they say to go to the dermatologist every 3 months?
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- January 30, 2012 at 10:07 pm
Hi,
I'm new here and was diagnosed with stage IIa melanoma in late 2008. My Dr. sent me to an oncologist who said I was 'cured' but wanted me to come back to see him every month or so.
I also went to a dermatologist for most of the first year but got fed up because they wanted to cut off a mole every time I went. Then when I would go back for stitches they would want to cut off more at the same spot the next month because they were not normal (forget the right word). They weren't melanoma just 'not normal'.
I was so fed up with these greedy doctors I didn't go to any of them for over 2 years but just last week my internal med dr. gave me an order for a PET CT exam.
What did your doctor say you should do for follow up? Did they say to go to the dermatologist every 3 months?
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- January 30, 2012 at 10:16 pm
Never think you are out of the woods with melanoma.Ten years ago i had a stage 1 very small birtmark sugically removed from my neck.Last jan had a stage 4 melanoma re-appear.Now on Zelboraf and praying and hoping for the best.Do all you can to get scans or any tests needed to detect it as early as possible if it rears its ugly head. Stay vigilant.All the best
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- January 30, 2012 at 10:16 pm
Never think you are out of the woods with melanoma.Ten years ago i had a stage 1 very small birtmark sugically removed from my neck.Last jan had a stage 4 melanoma re-appear.Now on Zelboraf and praying and hoping for the best.Do all you can to get scans or any tests needed to detect it as early as possible if it rears its ugly head. Stay vigilant.All the best
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- January 30, 2012 at 10:16 pm
Never think you are out of the woods with melanoma.Ten years ago i had a stage 1 very small birtmark sugically removed from my neck.Last jan had a stage 4 melanoma re-appear.Now on Zelboraf and praying and hoping for the best.Do all you can to get scans or any tests needed to detect it as early as possible if it rears its ugly head. Stay vigilant.All the best
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- January 30, 2012 at 10:17 pm
Never think you are out of the woods with melanoma.Ten years ago i had a stage 1 very small birtmark sugically removed from my neck.Last jan had a stage 4 melanoma re-appear.Now on Zelboraf and praying and hoping for the best.Do all you can to get scans or any tests needed to detect it as early as possible if it rears its ugly head. Stay vigilant.All the best
-
- January 30, 2012 at 10:17 pm
Never think you are out of the woods with melanoma.Ten years ago i had a stage 1 very small birtmark sugically removed from my neck.Last jan had a stage 4 melanoma re-appear.Now on Zelboraf and praying and hoping for the best.Do all you can to get scans or any tests needed to detect it as early as possible if it rears its ugly head. Stay vigilant.All the best
-
- January 30, 2012 at 10:17 pm
Never think you are out of the woods with melanoma.Ten years ago i had a stage 1 very small birtmark sugically removed from my neck.Last jan had a stage 4 melanoma re-appear.Now on Zelboraf and praying and hoping for the best.Do all you can to get scans or any tests needed to detect it as early as possible if it rears its ugly head. Stay vigilant.All the best
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- January 30, 2012 at 10:19 pm
Never think you are out of the woods with melanoma.Ten years ago i had a stage 1 very small birtmark sugically removed from my neck.Last jan had a stage 4 melanoma re-appear.Now on Zelboraf and praying and hoping for the best.Do all you can to get scans or any tests needed to detect it as early as possible if it rears its ugly head. Stay vigilant.All the best
-
- January 30, 2012 at 10:19 pm
Never think you are out of the woods with melanoma.Ten years ago i had a stage 1 very small birtmark sugically removed from my neck.Last jan had a stage 4 melanoma re-appear.Now on Zelboraf and praying and hoping for the best.Do all you can to get scans or any tests needed to detect it as early as possible if it rears its ugly head. Stay vigilant.All the best
-
- January 30, 2012 at 10:19 pm
Never think you are out of the woods with melanoma.Ten years ago i had a stage 1 very small birtmark sugically removed from my neck.Last jan had a stage 4 melanoma re-appear.Now on Zelboraf and praying and hoping for the best.Do all you can to get scans or any tests needed to detect it as early as possible if it rears its ugly head. Stay vigilant.All the best
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- January 30, 2012 at 11:58 pm
I am wondering why after this time you are posting this message. Is there a reason why you are concerned now?
The standard protocol for your stage is just as you have been doing. The surgical removal, then follow-up with a derm for skin checks. The prognosis for your stage is very good. You should also have annual check up with a PCP which includes checking Lymph nodes, it's not a bad idea to check them yourself once a month for any inflammation, but remember that lymph nodes will inflame with any infection so don't panic.
You asked why a lot of people act like melanoma is no big deal. It's because they are uneducated, they have no idea how deadly it can be.
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- January 30, 2012 at 11:58 pm
I am wondering why after this time you are posting this message. Is there a reason why you are concerned now?
The standard protocol for your stage is just as you have been doing. The surgical removal, then follow-up with a derm for skin checks. The prognosis for your stage is very good. You should also have annual check up with a PCP which includes checking Lymph nodes, it's not a bad idea to check them yourself once a month for any inflammation, but remember that lymph nodes will inflame with any infection so don't panic.
You asked why a lot of people act like melanoma is no big deal. It's because they are uneducated, they have no idea how deadly it can be.
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- January 30, 2012 at 11:58 pm
I am wondering why after this time you are posting this message. Is there a reason why you are concerned now?
The standard protocol for your stage is just as you have been doing. The surgical removal, then follow-up with a derm for skin checks. The prognosis for your stage is very good. You should also have annual check up with a PCP which includes checking Lymph nodes, it's not a bad idea to check them yourself once a month for any inflammation, but remember that lymph nodes will inflame with any infection so don't panic.
You asked why a lot of people act like melanoma is no big deal. It's because they are uneducated, they have no idea how deadly it can be.
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- January 31, 2012 at 12:13 am
I agree, I get the feeling that doctors and the nurses in their office act as if it is no big deal. I just had a WE and SNB done last week. I have been sick for a month, waiting for this surgery and then waiting for the results. Today, I called the office for a couple reasons, one being, "did the results come in?" I got their voicemail, and while I was away from my phone the nurse practitioner called back, left me a voicemail that I was good to go, everything was fine. Did she expect that I wouldn't call back and want more information. Like now what? When I called her back she had the attitude of, ok your clear…good news, no worries! That is not the case….I read so many postings in this forum of people that were exactly in my shoes (Stage 1, clear node) 3, 5, 10 years ago and are now stage IV. I feel like this disease will never leave my head and I will always be waiting for the next shoe to drop. My life has changed forever, however, I know I can't live waiting for the next shoe to drop, that's no life either.
Kelli
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- February 2, 2012 at 12:11 am
My last relaxed breath came the minute before the doc said "Melanoma IIIb".
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- February 2, 2012 at 12:11 am
My last relaxed breath came the minute before the doc said "Melanoma IIIb".
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- February 2, 2012 at 12:11 am
My last relaxed breath came the minute before the doc said "Melanoma IIIb".
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- January 31, 2012 at 12:13 am
I agree, I get the feeling that doctors and the nurses in their office act as if it is no big deal. I just had a WE and SNB done last week. I have been sick for a month, waiting for this surgery and then waiting for the results. Today, I called the office for a couple reasons, one being, "did the results come in?" I got their voicemail, and while I was away from my phone the nurse practitioner called back, left me a voicemail that I was good to go, everything was fine. Did she expect that I wouldn't call back and want more information. Like now what? When I called her back she had the attitude of, ok your clear…good news, no worries! That is not the case….I read so many postings in this forum of people that were exactly in my shoes (Stage 1, clear node) 3, 5, 10 years ago and are now stage IV. I feel like this disease will never leave my head and I will always be waiting for the next shoe to drop. My life has changed forever, however, I know I can't live waiting for the next shoe to drop, that's no life either.
Kelli
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- January 31, 2012 at 12:13 am
I agree, I get the feeling that doctors and the nurses in their office act as if it is no big deal. I just had a WE and SNB done last week. I have been sick for a month, waiting for this surgery and then waiting for the results. Today, I called the office for a couple reasons, one being, "did the results come in?" I got their voicemail, and while I was away from my phone the nurse practitioner called back, left me a voicemail that I was good to go, everything was fine. Did she expect that I wouldn't call back and want more information. Like now what? When I called her back she had the attitude of, ok your clear…good news, no worries! That is not the case….I read so many postings in this forum of people that were exactly in my shoes (Stage 1, clear node) 3, 5, 10 years ago and are now stage IV. I feel like this disease will never leave my head and I will always be waiting for the next shoe to drop. My life has changed forever, however, I know I can't live waiting for the next shoe to drop, that's no life either.
Kelli
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- January 31, 2012 at 8:10 am
When I was first diagnosed in the early 90's they said it was a precancerous spot called lentigo maligna. They removed it along with every mole on my body…only one spot on my neck came back as "precancerous". Alomst 5 years later it came back on the same place on my neck, but was no longer a flat feckle, but a purple pencil eraser type spot. They removed that one again and said I had nothing to worry about and also took out 5 sential lymph nodes…was told nothing to worry about and lymph nodes were clear…so I don't think they ever staged me or told me to even do follow up scans…in 2009 I was having some issues, like feeling exhausted, a small cough….they did a CT scan and they found a large spot beside my heart…I have stage 4 melanoma…I am currently in a clinical trial; I had my back and chest cut, muscles and tendons cut, a rib cut and they cut out a 6.8 melanoma that was kissing my heart….I am currently NED….so while it might be an inconvienient thing to cut off your moles…it's better than ending up at stage 4. Most people with stage 4 were told they have 6-9 months to live…looking back I would have gone every week if they had asked me rather than go thru what I have. The radiation and chemo, the major surgeries…melanoma usually comes back and it also is the most deadilest form of skin cancer…we usually die…there is no cure.Only a regular oncologist who doesn't know his head from a hole int he ground and some dermotologists would say its no big deal…a melanoma specialist would ever say its not a big deal…they have seen their patients die… sorry I am in one of those moods…I hate it when someone says they act like its no big deal…we have lost alot of people in the last few months and it makes me angry.
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- January 31, 2012 at 8:10 am
When I was first diagnosed in the early 90's they said it was a precancerous spot called lentigo maligna. They removed it along with every mole on my body…only one spot on my neck came back as "precancerous". Alomst 5 years later it came back on the same place on my neck, but was no longer a flat feckle, but a purple pencil eraser type spot. They removed that one again and said I had nothing to worry about and also took out 5 sential lymph nodes…was told nothing to worry about and lymph nodes were clear…so I don't think they ever staged me or told me to even do follow up scans…in 2009 I was having some issues, like feeling exhausted, a small cough….they did a CT scan and they found a large spot beside my heart…I have stage 4 melanoma…I am currently in a clinical trial; I had my back and chest cut, muscles and tendons cut, a rib cut and they cut out a 6.8 melanoma that was kissing my heart….I am currently NED….so while it might be an inconvienient thing to cut off your moles…it's better than ending up at stage 4. Most people with stage 4 were told they have 6-9 months to live…looking back I would have gone every week if they had asked me rather than go thru what I have. The radiation and chemo, the major surgeries…melanoma usually comes back and it also is the most deadilest form of skin cancer…we usually die…there is no cure.Only a regular oncologist who doesn't know his head from a hole int he ground and some dermotologists would say its no big deal…a melanoma specialist would ever say its not a big deal…they have seen their patients die… sorry I am in one of those moods…I hate it when someone says they act like its no big deal…we have lost alot of people in the last few months and it makes me angry.
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- February 1, 2012 at 7:54 pm
"so while it might be an inconvienient thing to cut off your moles…it's better than ending up at stage 4. Most people with stage 4 were told they have 6-9 months to live…looking back I would have gone every week if they had asked me rather than go thru what I have. The radiation and chemo, the major surgeries…melanoma usually comes back and it also is the most deadilest form of skin cancer."
?? But from what I have read here on the board and on the internet it doesn't usually come back. The oncologist said I am cured. Now I don't know what to believe.
I asked in my first post "do I have cancer" and no one answered yes or no.
What am I to believe now?
Why does no one seem to talk to new people here?
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- February 1, 2012 at 7:54 pm
"so while it might be an inconvienient thing to cut off your moles…it's better than ending up at stage 4. Most people with stage 4 were told they have 6-9 months to live…looking back I would have gone every week if they had asked me rather than go thru what I have. The radiation and chemo, the major surgeries…melanoma usually comes back and it also is the most deadilest form of skin cancer."
?? But from what I have read here on the board and on the internet it doesn't usually come back. The oncologist said I am cured. Now I don't know what to believe.
I asked in my first post "do I have cancer" and no one answered yes or no.
What am I to believe now?
Why does no one seem to talk to new people here?
-
- February 1, 2012 at 7:54 pm
"so while it might be an inconvienient thing to cut off your moles…it's better than ending up at stage 4. Most people with stage 4 were told they have 6-9 months to live…looking back I would have gone every week if they had asked me rather than go thru what I have. The radiation and chemo, the major surgeries…melanoma usually comes back and it also is the most deadilest form of skin cancer."
?? But from what I have read here on the board and on the internet it doesn't usually come back. The oncologist said I am cured. Now I don't know what to believe.
I asked in my first post "do I have cancer" and no one answered yes or no.
What am I to believe now?
Why does no one seem to talk to new people here?
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- February 1, 2012 at 8:04 pm
I would like to also add that while I had 37 moles removed I must have at least another 60 and none even look suspicious. Also the melanoma oncology specialist / sugeon told me what the dermatologists were doing was not necessary, only moderate to severly atypical moles need to be removed, not the mildly atypical moles the derms were having a field day removing. They also say that on the intenet in many sites.
So I am sorry if I somehow offended you and I am deeply sorry for your advanced stage as well as all of the other people on this site with a stage 3 and 4, but I think we all have different circumstances, are at different levels of risk and are prescribed different treatments.
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- February 1, 2012 at 8:04 pm
I would like to also add that while I had 37 moles removed I must have at least another 60 and none even look suspicious. Also the melanoma oncology specialist / sugeon told me what the dermatologists were doing was not necessary, only moderate to severly atypical moles need to be removed, not the mildly atypical moles the derms were having a field day removing. They also say that on the intenet in many sites.
So I am sorry if I somehow offended you and I am deeply sorry for your advanced stage as well as all of the other people on this site with a stage 3 and 4, but I think we all have different circumstances, are at different levels of risk and are prescribed different treatments.
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- February 1, 2012 at 8:04 pm
I would like to also add that while I had 37 moles removed I must have at least another 60 and none even look suspicious. Also the melanoma oncology specialist / sugeon told me what the dermatologists were doing was not necessary, only moderate to severly atypical moles need to be removed, not the mildly atypical moles the derms were having a field day removing. They also say that on the intenet in many sites.
So I am sorry if I somehow offended you and I am deeply sorry for your advanced stage as well as all of the other people on this site with a stage 3 and 4, but I think we all have different circumstances, are at different levels of risk and are prescribed different treatments.
-
- January 31, 2012 at 8:10 am
When I was first diagnosed in the early 90's they said it was a precancerous spot called lentigo maligna. They removed it along with every mole on my body…only one spot on my neck came back as "precancerous". Alomst 5 years later it came back on the same place on my neck, but was no longer a flat feckle, but a purple pencil eraser type spot. They removed that one again and said I had nothing to worry about and also took out 5 sential lymph nodes…was told nothing to worry about and lymph nodes were clear…so I don't think they ever staged me or told me to even do follow up scans…in 2009 I was having some issues, like feeling exhausted, a small cough….they did a CT scan and they found a large spot beside my heart…I have stage 4 melanoma…I am currently in a clinical trial; I had my back and chest cut, muscles and tendons cut, a rib cut and they cut out a 6.8 melanoma that was kissing my heart….I am currently NED….so while it might be an inconvienient thing to cut off your moles…it's better than ending up at stage 4. Most people with stage 4 were told they have 6-9 months to live…looking back I would have gone every week if they had asked me rather than go thru what I have. The radiation and chemo, the major surgeries…melanoma usually comes back and it also is the most deadilest form of skin cancer…we usually die…there is no cure.Only a regular oncologist who doesn't know his head from a hole int he ground and some dermotologists would say its no big deal…a melanoma specialist would ever say its not a big deal…they have seen their patients die… sorry I am in one of those moods…I hate it when someone says they act like its no big deal…we have lost alot of people in the last few months and it makes me angry.
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- February 1, 2012 at 8:46 pm
I want to add, my PCP checked the spot on my left leg. It wasn’t a mole, but a scar that the tumor came from. He then rushed me to the general surgeon, who did an emergency biopsy then the wide excision and temoval of lymp nodes. He said that I’m cured. My PCP, told me that I.m stage iia, and referred me to a Derm. Through this I’ve learned that are the only one who can keep an eye on things! The Drs don’t seem that interested on follow up w/me. The more that I have read, it says that I need to be checked every 4mos now (2yrs post diagnosed), yrarly chest xray, which I haven’t had for 2yrs! This does change your life forever!!!!!! I’m scared that it will come back!!! I see my PCP for my yearly and my Derm. I want to ask them for chest xray. Is there a blood test I should request? should I also ask for a pet scan? what if thete is something inside that you can’t see?Or should I just leave it alone??? and act like the Dr’s that i’m cured and leave it alone!!!! -
- February 1, 2012 at 8:46 pm
I want to add, my PCP checked the spot on my left leg. It wasn’t a mole, but a scar that the tumor came from. He then rushed me to the general surgeon, who did an emergency biopsy then the wide excision and temoval of lymp nodes. He said that I’m cured. My PCP, told me that I.m stage iia, and referred me to a Derm. Through this I’ve learned that are the only one who can keep an eye on things! The Drs don’t seem that interested on follow up w/me. The more that I have read, it says that I need to be checked every 4mos now (2yrs post diagnosed), yrarly chest xray, which I haven’t had for 2yrs! This does change your life forever!!!!!! I’m scared that it will come back!!! I see my PCP for my yearly and my Derm. I want to ask them for chest xray. Is there a blood test I should request? should I also ask for a pet scan? what if thete is something inside that you can’t see?Or should I just leave it alone??? and act like the Dr’s that i’m cured and leave it alone!!!! -
- February 1, 2012 at 8:46 pm
I want to add, my PCP checked the spot on my left leg. It wasn’t a mole, but a scar that the tumor came from. He then rushed me to the general surgeon, who did an emergency biopsy then the wide excision and temoval of lymp nodes. He said that I’m cured. My PCP, told me that I.m stage iia, and referred me to a Derm. Through this I’ve learned that are the only one who can keep an eye on things! The Drs don’t seem that interested on follow up w/me. The more that I have read, it says that I need to be checked every 4mos now (2yrs post diagnosed), yrarly chest xray, which I haven’t had for 2yrs! This does change your life forever!!!!!! I’m scared that it will come back!!! I see my PCP for my yearly and my Derm. I want to ask them for chest xray. Is there a blood test I should request? should I also ask for a pet scan? what if thete is something inside that you can’t see?Or should I just leave it alone??? and act like the Dr’s that i’m cured and leave it alone!!!!-
- February 2, 2012 at 2:56 am
Hi speckles,
When I first had my surgery the surgical oncologist told me I should come back to see him every six months for the first 3 years. He also said that he would be ordering chest xray and blood work for LDL at those follow ups. Well, I did go once that first year but he didn't order any of those tests like he said he would so my Internal doc did. I have been seeing my internal medicine doc for almost 20 years and he worries more about me than I do myself . He has wanted me to get a pet scan for over a year now, but normally they never do a pet scan for our stage.
I read somewhere on the internet that in the past few years they even stopped doing the chest xray and blood test and do no follow up at all unless their are clinical signs of recurrance.
Try to just go on with your life and act like it never happened. Worrying about it never helps and can evn make things worse (stress is very bad for you), think positive thoughts and enjoy yourself.
sedona- also stage IIa just over 3 years now
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- February 2, 2012 at 2:56 am
Hi speckles,
When I first had my surgery the surgical oncologist told me I should come back to see him every six months for the first 3 years. He also said that he would be ordering chest xray and blood work for LDL at those follow ups. Well, I did go once that first year but he didn't order any of those tests like he said he would so my Internal doc did. I have been seeing my internal medicine doc for almost 20 years and he worries more about me than I do myself . He has wanted me to get a pet scan for over a year now, but normally they never do a pet scan for our stage.
I read somewhere on the internet that in the past few years they even stopped doing the chest xray and blood test and do no follow up at all unless their are clinical signs of recurrance.
Try to just go on with your life and act like it never happened. Worrying about it never helps and can evn make things worse (stress is very bad for you), think positive thoughts and enjoy yourself.
sedona- also stage IIa just over 3 years now
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- February 2, 2012 at 2:56 am
Hi speckles,
When I first had my surgery the surgical oncologist told me I should come back to see him every six months for the first 3 years. He also said that he would be ordering chest xray and blood work for LDL at those follow ups. Well, I did go once that first year but he didn't order any of those tests like he said he would so my Internal doc did. I have been seeing my internal medicine doc for almost 20 years and he worries more about me than I do myself . He has wanted me to get a pet scan for over a year now, but normally they never do a pet scan for our stage.
I read somewhere on the internet that in the past few years they even stopped doing the chest xray and blood test and do no follow up at all unless their are clinical signs of recurrance.
Try to just go on with your life and act like it never happened. Worrying about it never helps and can evn make things worse (stress is very bad for you), think positive thoughts and enjoy yourself.
sedona- also stage IIa just over 3 years now
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