› Forums › General Melanoma Community › recently diagnosed, next steps?
- This topic has 45 replies, 5 voices, and was last updated 8 years, 10 months ago by
Gene_S.
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- June 11, 2015 at 6:05 pm
Hello all – I had a large mole on my outer leg removed on Tuesday and just learned it is a melanoma and it was 2.58mm deep. Dermatologist was very somber and said there is high likelyhood that it has spread to lymph nodes and beyond. Is recommending a SNB and a PET scan. I'm dreading a stage IV diagnosis. Not sure if I should be seeking out hospitals with clinical trials available or if it is too soon. This is a complete shock and I'm feeling quite unprepared. Any advice would be welcome.
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- June 11, 2015 at 6:25 pm
High likelihood for stage IV? Maybe but maybe not. Certainly a higher likelihood of lymph node involvement but that doesn't mean it has gone beyond that. At this point in time, I wouldn't be doing any research regarding clinical trials or treatment. You don't know your stage, and there is a huge difference in treatment options between stage II, stage III and stage IV. As hard as it is, getting complete staging information is the most important thing at this point. Have the SNB. If it's positive, get the PET. THEN after you have those results, you'll know your staging and THEN you can contemplate options. Get copies of all reports and scans in case you choose to go elsewhere for treatment – just makes things easier to have your own copies.
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- June 11, 2015 at 6:25 pm
High likelihood for stage IV? Maybe but maybe not. Certainly a higher likelihood of lymph node involvement but that doesn't mean it has gone beyond that. At this point in time, I wouldn't be doing any research regarding clinical trials or treatment. You don't know your stage, and there is a huge difference in treatment options between stage II, stage III and stage IV. As hard as it is, getting complete staging information is the most important thing at this point. Have the SNB. If it's positive, get the PET. THEN after you have those results, you'll know your staging and THEN you can contemplate options. Get copies of all reports and scans in case you choose to go elsewhere for treatment – just makes things easier to have your own copies.
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- June 11, 2015 at 6:25 pm
High likelihood for stage IV? Maybe but maybe not. Certainly a higher likelihood of lymph node involvement but that doesn't mean it has gone beyond that. At this point in time, I wouldn't be doing any research regarding clinical trials or treatment. You don't know your stage, and there is a huge difference in treatment options between stage II, stage III and stage IV. As hard as it is, getting complete staging information is the most important thing at this point. Have the SNB. If it's positive, get the PET. THEN after you have those results, you'll know your staging and THEN you can contemplate options. Get copies of all reports and scans in case you choose to go elsewhere for treatment – just makes things easier to have your own copies.
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- June 12, 2015 at 12:05 am
Sorry for you news. I was at the same spot you are now at the end of March of this year.
2.9 mm deep, calf, High metotic rate (12.) I had the SNB, 2 nodes, came back negative. For now I guess I only have to routine exams by my Dermatologist.
Try not get to far ahead … It is difficult… but wait for your staging.
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- June 12, 2015 at 12:05 am
Sorry for you news. I was at the same spot you are now at the end of March of this year.
2.9 mm deep, calf, High metotic rate (12.) I had the SNB, 2 nodes, came back negative. For now I guess I only have to routine exams by my Dermatologist.
Try not get to far ahead … It is difficult… but wait for your staging.
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- June 12, 2015 at 4:25 pm
I had blood tested for LDH which was in normal range. Did not need a PET but did have chest xray done also normal. As Jenner stated mitotic rate was counted from the biopsy. As it was explained to me…the level of screening is determined by staging starting with biopsy, WME, SNB.
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- June 12, 2015 at 4:25 pm
I had blood tested for LDH which was in normal range. Did not need a PET but did have chest xray done also normal. As Jenner stated mitotic rate was counted from the biopsy. As it was explained to me…the level of screening is determined by staging starting with biopsy, WME, SNB.
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- June 12, 2015 at 4:25 pm
I had blood tested for LDH which was in normal range. Did not need a PET but did have chest xray done also normal. As Jenner stated mitotic rate was counted from the biopsy. As it was explained to me…the level of screening is determined by staging starting with biopsy, WME, SNB.
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- June 13, 2015 at 1:34 pm
I went in for a consult yesterday. Depth is 2.58 and mitotic rate is a 3. Right now doc says I'm a stage 2a. Will have a SNB in two weeks along with a much wider excision. I'm so hoping that the SNB is negative! He said there is an 85% chance it will be, so fingers crossed. Doc also said that results from SNB would take about 10 days. Is that others' experience that the results take so long? So I have about a month altogether before I know about lymph nodes. Any advice about how to keep from obsessing about this?
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- June 13, 2015 at 1:34 pm
I went in for a consult yesterday. Depth is 2.58 and mitotic rate is a 3. Right now doc says I'm a stage 2a. Will have a SNB in two weeks along with a much wider excision. I'm so hoping that the SNB is negative! He said there is an 85% chance it will be, so fingers crossed. Doc also said that results from SNB would take about 10 days. Is that others' experience that the results take so long? So I have about a month altogether before I know about lymph nodes. Any advice about how to keep from obsessing about this?
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- June 13, 2015 at 1:34 pm
I went in for a consult yesterday. Depth is 2.58 and mitotic rate is a 3. Right now doc says I'm a stage 2a. Will have a SNB in two weeks along with a much wider excision. I'm so hoping that the SNB is negative! He said there is an 85% chance it will be, so fingers crossed. Doc also said that results from SNB would take about 10 days. Is that others' experience that the results take so long? So I have about a month altogether before I know about lymph nodes. Any advice about how to keep from obsessing about this?
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- June 12, 2015 at 12:05 am
Sorry for you news. I was at the same spot you are now at the end of March of this year.
2.9 mm deep, calf, High metotic rate (12.) I had the SNB, 2 nodes, came back negative. For now I guess I only have to routine exams by my Dermatologist.
Try not get to far ahead … It is difficult… but wait for your staging.
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- June 15, 2015 at 7:04 pm
Hi, your dermatologist shouldn't tell you that "there is high likelihood that it has spread to lymph nodes and beyond." No one can tell you that. I was diagnosed in April 2013. My pathology report stated "ulcerated nodular and infiltrsting melanoma with mitotic rate highly variable- up to 5 per square MM, Bresthlow Depth >5 MM extending to deep margin, lymphovascular invasion "PRESENT" and Clark Level of "at least Level 4."
Now with that pathology report it seems (and is pretty serious) "likely" for at least a Stage IIIC. But my sentinal node biopsy was clear. Therefore, I was originally diagnosed as Stage IIC. I am now a Stage IIIC. Even though all melanomas are serious, the new treatments they have now provide more positive outcomes. Just because you have a deep melanoma doesn't necessarily mean it has spread beyond the point of origin. As deep as mine was, some may have thought I would have been at least a Stage IV. So, like I said, no one should tell you the "likelihood" of it spreading anywhere. Everyone is different. Until you have all of the proper tests to stage, only then should you proceed to the next step of treatment (if any). But it's one step at a time.
I hope that helps to give you a more positive perspective. Hope is what we have to hold on to. Don't ever let that go.
Good luck and I'll be praying for you.
Alana
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- June 15, 2015 at 7:04 pm
Hi, your dermatologist shouldn't tell you that "there is high likelihood that it has spread to lymph nodes and beyond." No one can tell you that. I was diagnosed in April 2013. My pathology report stated "ulcerated nodular and infiltrsting melanoma with mitotic rate highly variable- up to 5 per square MM, Bresthlow Depth >5 MM extending to deep margin, lymphovascular invasion "PRESENT" and Clark Level of "at least Level 4."
Now with that pathology report it seems (and is pretty serious) "likely" for at least a Stage IIIC. But my sentinal node biopsy was clear. Therefore, I was originally diagnosed as Stage IIC. I am now a Stage IIIC. Even though all melanomas are serious, the new treatments they have now provide more positive outcomes. Just because you have a deep melanoma doesn't necessarily mean it has spread beyond the point of origin. As deep as mine was, some may have thought I would have been at least a Stage IV. So, like I said, no one should tell you the "likelihood" of it spreading anywhere. Everyone is different. Until you have all of the proper tests to stage, only then should you proceed to the next step of treatment (if any). But it's one step at a time.
I hope that helps to give you a more positive perspective. Hope is what we have to hold on to. Don't ever let that go.
Good luck and I'll be praying for you.
Alana
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- June 15, 2015 at 7:04 pm
Hi, your dermatologist shouldn't tell you that "there is high likelihood that it has spread to lymph nodes and beyond." No one can tell you that. I was diagnosed in April 2013. My pathology report stated "ulcerated nodular and infiltrsting melanoma with mitotic rate highly variable- up to 5 per square MM, Bresthlow Depth >5 MM extending to deep margin, lymphovascular invasion "PRESENT" and Clark Level of "at least Level 4."
Now with that pathology report it seems (and is pretty serious) "likely" for at least a Stage IIIC. But my sentinal node biopsy was clear. Therefore, I was originally diagnosed as Stage IIC. I am now a Stage IIIC. Even though all melanomas are serious, the new treatments they have now provide more positive outcomes. Just because you have a deep melanoma doesn't necessarily mean it has spread beyond the point of origin. As deep as mine was, some may have thought I would have been at least a Stage IV. So, like I said, no one should tell you the "likelihood" of it spreading anywhere. Everyone is different. Until you have all of the proper tests to stage, only then should you proceed to the next step of treatment (if any). But it's one step at a time.
I hope that helps to give you a more positive perspective. Hope is what we have to hold on to. Don't ever let that go.
Good luck and I'll be praying for you.
Alana
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- June 15, 2015 at 11:21 pm
You are right, Alana. Dermatologist scared the living daylights out of me. He told me that my tumor has the deepest penetration, but surgical oncologist said at 2.58 it is an intermediate tumor. Derm also said that results of SLNB are available immediately and if it was positive they'd take entire node group at same time. Surgical onco said SLNB results take about 10 days and if positive they'd wait a month for surgery to remove entire node group so I could heal first. Conflicting information is very frustrating. I'm trusting the specialist.
Thank you for your words of encouragement. Good luck to you too. Stay positive.
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- June 15, 2015 at 11:21 pm
You are right, Alana. Dermatologist scared the living daylights out of me. He told me that my tumor has the deepest penetration, but surgical oncologist said at 2.58 it is an intermediate tumor. Derm also said that results of SLNB are available immediately and if it was positive they'd take entire node group at same time. Surgical onco said SLNB results take about 10 days and if positive they'd wait a month for surgery to remove entire node group so I could heal first. Conflicting information is very frustrating. I'm trusting the specialist.
Thank you for your words of encouragement. Good luck to you too. Stay positive.
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- June 15, 2015 at 11:21 pm
You are right, Alana. Dermatologist scared the living daylights out of me. He told me that my tumor has the deepest penetration, but surgical oncologist said at 2.58 it is an intermediate tumor. Derm also said that results of SLNB are available immediately and if it was positive they'd take entire node group at same time. Surgical onco said SLNB results take about 10 days and if positive they'd wait a month for surgery to remove entire node group so I could heal first. Conflicting information is very frustrating. I'm trusting the specialist.
Thank you for your words of encouragement. Good luck to you too. Stay positive.
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- June 16, 2015 at 10:00 pm
mdoh, you are about right where I was two months ago. My stats from the path, as I stated, earlier, are similar to yours, even a little worse. I remember the stress and fear of worst case possibilities. My derm told be worrying is counter productive and changes nothing … easy said … and true…. but difficult just the same.
I found this sight to help me cope. knowing what my diagnoses could bring for both good and bad outcomes. Although I do think we are all different. I actually expected a worse outcome.
To answer your question… I waited a long 6 days for my SLNB results as they have to go to pathology, but my surgical oncologist did comment right after the procedure the nodes looked good.
Can I ask what part of your leg is your primary and what hospital you going to?
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- June 16, 2015 at 10:00 pm
mdoh, you are about right where I was two months ago. My stats from the path, as I stated, earlier, are similar to yours, even a little worse. I remember the stress and fear of worst case possibilities. My derm told be worrying is counter productive and changes nothing … easy said … and true…. but difficult just the same.
I found this sight to help me cope. knowing what my diagnoses could bring for both good and bad outcomes. Although I do think we are all different. I actually expected a worse outcome.
To answer your question… I waited a long 6 days for my SLNB results as they have to go to pathology, but my surgical oncologist did comment right after the procedure the nodes looked good.
Can I ask what part of your leg is your primary and what hospital you going to?
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- June 16, 2015 at 10:00 pm
mdoh, you are about right where I was two months ago. My stats from the path, as I stated, earlier, are similar to yours, even a little worse. I remember the stress and fear of worst case possibilities. My derm told be worrying is counter productive and changes nothing … easy said … and true…. but difficult just the same.
I found this sight to help me cope. knowing what my diagnoses could bring for both good and bad outcomes. Although I do think we are all different. I actually expected a worse outcome.
To answer your question… I waited a long 6 days for my SLNB results as they have to go to pathology, but my surgical oncologist did comment right after the procedure the nodes looked good.
Can I ask what part of your leg is your primary and what hospital you going to?
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- June 17, 2015 at 2:48 am
Yes, my tumor was 8mm deep into my foot. It looked like a mushroom cap growing out of my foot. Even with it being that deep, my surgical oncologist kept a positive attitude. He told me, unless the tests come back positive- your sentinel nodes are fine. And mine were negative for melanoma even though the tumor was deep and had all of the worst characteristics. I have a huge hole in my foot and of course the cancer had returned but it may just be localized again. I'll worry after they remove it and do the testing.
And yes, when I had my wide excision surgery they did the sentinel node biopsy at the same time and send it for testing while I was still under so if it did come back positive- they would remove all the nodes then rather than go back in again. At least that's how they do it at Johns Hopkins. Everything is immediately sent to the lab and the results come back while you're still in surgery.
Melanoma, if caught early, has a high cure rate. Always stay positive and worry later.
Good luck and I'll keep you in my prayers. It's an everyday battle but positivity is key.
God Bless.
Alana
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- June 17, 2015 at 2:48 am
Yes, my tumor was 8mm deep into my foot. It looked like a mushroom cap growing out of my foot. Even with it being that deep, my surgical oncologist kept a positive attitude. He told me, unless the tests come back positive- your sentinel nodes are fine. And mine were negative for melanoma even though the tumor was deep and had all of the worst characteristics. I have a huge hole in my foot and of course the cancer had returned but it may just be localized again. I'll worry after they remove it and do the testing.
And yes, when I had my wide excision surgery they did the sentinel node biopsy at the same time and send it for testing while I was still under so if it did come back positive- they would remove all the nodes then rather than go back in again. At least that's how they do it at Johns Hopkins. Everything is immediately sent to the lab and the results come back while you're still in surgery.
Melanoma, if caught early, has a high cure rate. Always stay positive and worry later.
Good luck and I'll keep you in my prayers. It's an everyday battle but positivity is key.
God Bless.
Alana
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- June 17, 2015 at 2:48 am
Yes, my tumor was 8mm deep into my foot. It looked like a mushroom cap growing out of my foot. Even with it being that deep, my surgical oncologist kept a positive attitude. He told me, unless the tests come back positive- your sentinel nodes are fine. And mine were negative for melanoma even though the tumor was deep and had all of the worst characteristics. I have a huge hole in my foot and of course the cancer had returned but it may just be localized again. I'll worry after they remove it and do the testing.
And yes, when I had my wide excision surgery they did the sentinel node biopsy at the same time and send it for testing while I was still under so if it did come back positive- they would remove all the nodes then rather than go back in again. At least that's how they do it at Johns Hopkins. Everything is immediately sent to the lab and the results come back while you're still in surgery.
Melanoma, if caught early, has a high cure rate. Always stay positive and worry later.
Good luck and I'll keep you in my prayers. It's an everyday battle but positivity is key.
God Bless.
Alana
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- June 17, 2015 at 3:06 am
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- June 17, 2015 at 3:06 am
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- June 17, 2015 at 3:06 am
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- June 19, 2015 at 3:55 pm
My husbands melanoma was on his head and was 10.5 mm. His SNB came back negative for melanoma and he was Stage IIIB. 9 months later he had another lesion on his head. He went from a lllb to lllc and then progressed to Stage IV in 2 years and 10 months with metas to the liver and lungs as well as an unresectable to the head near the cervical spine at C1 – C1. He started the Clinical Trial with IPI 10mg/kg and GMCSF in March 2011 and became NED. He has been NED for over 2.5 years now. His lymph nodes have always not been involved the cancer spread through the blood. So a negative SNB does not put you in the all clear zone.
Judy (loving wife of Gene Stage IV and NED now for over 2.5 years.)
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- June 19, 2015 at 3:55 pm
My husbands melanoma was on his head and was 10.5 mm. His SNB came back negative for melanoma and he was Stage IIIB. 9 months later he had another lesion on his head. He went from a lllb to lllc and then progressed to Stage IV in 2 years and 10 months with metas to the liver and lungs as well as an unresectable to the head near the cervical spine at C1 – C1. He started the Clinical Trial with IPI 10mg/kg and GMCSF in March 2011 and became NED. He has been NED for over 2.5 years now. His lymph nodes have always not been involved the cancer spread through the blood. So a negative SNB does not put you in the all clear zone.
Judy (loving wife of Gene Stage IV and NED now for over 2.5 years.)
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- June 19, 2015 at 3:55 pm
My husbands melanoma was on his head and was 10.5 mm. His SNB came back negative for melanoma and he was Stage IIIB. 9 months later he had another lesion on his head. He went from a lllb to lllc and then progressed to Stage IV in 2 years and 10 months with metas to the liver and lungs as well as an unresectable to the head near the cervical spine at C1 – C1. He started the Clinical Trial with IPI 10mg/kg and GMCSF in March 2011 and became NED. He has been NED for over 2.5 years now. His lymph nodes have always not been involved the cancer spread through the blood. So a negative SNB does not put you in the all clear zone.
Judy (loving wife of Gene Stage IV and NED now for over 2.5 years.)
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Tagged: cutaneous melanoma
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