› Forums › General Melanoma Community › Just diagnosed and full of questions
- This topic has 21 replies, 4 voices, and was last updated 11 years, 2 months ago by
Janner.
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- February 9, 2013 at 3:11 am
I was just diagnosed Friday feb 1st. I was referred to MDA on Tuesday, feb. 5th. They called me Thursday about ins stuff and said I should hear back by Friday or Monday. Just wondering if they would have app for me at this time. I am ready to get started on some kind of treatment. My gen. Onc said I am a stage 3. SCARY! I feel like this stuff is just going everywhere as I sit here waiting for them to call.I was just diagnosed Friday feb 1st. I was referred to MDA on Tuesday, feb. 5th. They called me Thursday about ins stuff and said I should hear back by Friday or Monday. Just wondering if they would have app for me at this time. I am ready to get started on some kind of treatment. My gen. Onc said I am a stage 3. SCARY! I feel like this stuff is just going everywhere as I sit here waiting for them to call.
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- February 9, 2013 at 4:11 am
If you don't hear from them by Monday, give them a call and keep after them until you do. I learned that I have to be persistent and follow through on every single thing. And I mean everything. That means that if someone is supposed to fax or send information to another doctor, I call to make sure that they got what they needed. Get copies of as much as you can because things get lost. For the first several months after my husband's diagnosis the communication between doctors and staff was a complete nightmare. Things are much better now but I had a very rough time in the beginning. I'm not trying to scare you but I just think we all need to be on top of things. My husband's doctors are excellent but each of us is only one of many patients they see each day. Some are overwhelmed, short on staff and overworked. My husband has not dealt with MDA so your experience may go much smoother. MDA has a good reputation. Good luck.
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- February 9, 2013 at 4:11 am
If you don't hear from them by Monday, give them a call and keep after them until you do. I learned that I have to be persistent and follow through on every single thing. And I mean everything. That means that if someone is supposed to fax or send information to another doctor, I call to make sure that they got what they needed. Get copies of as much as you can because things get lost. For the first several months after my husband's diagnosis the communication between doctors and staff was a complete nightmare. Things are much better now but I had a very rough time in the beginning. I'm not trying to scare you but I just think we all need to be on top of things. My husband's doctors are excellent but each of us is only one of many patients they see each day. Some are overwhelmed, short on staff and overworked. My husband has not dealt with MDA so your experience may go much smoother. MDA has a good reputation. Good luck.
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- February 9, 2013 at 4:11 am
If you don't hear from them by Monday, give them a call and keep after them until you do. I learned that I have to be persistent and follow through on every single thing. And I mean everything. That means that if someone is supposed to fax or send information to another doctor, I call to make sure that they got what they needed. Get copies of as much as you can because things get lost. For the first several months after my husband's diagnosis the communication between doctors and staff was a complete nightmare. Things are much better now but I had a very rough time in the beginning. I'm not trying to scare you but I just think we all need to be on top of things. My husband's doctors are excellent but each of us is only one of many patients they see each day. Some are overwhelmed, short on staff and overworked. My husband has not dealt with MDA so your experience may go much smoother. MDA has a good reputation. Good luck.
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- February 9, 2013 at 6:06 am
I am wondering if maybe you had a miscommunication. Did your general Onc say you were Barslow level 3? That is not the same as stage 3. The only way you would know if you were stage 3 is if you had a sentinel node biopsy. Right now probably all you would have is a preliminary depth and a mitotic rate (how fast the tumor was growing). Hope you can get a follow-up appointment soon.
Mary
Stage 3
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- February 9, 2013 at 9:30 pm
I don’t know much about any of this, but I am learning. All I know is this small pink spot was found by accident on my foot. I was sent to another dr so he could look at it. He didn’t think it was anything but decided to biopsy it because of my light hair and green eyes. It came back as melanoma with a depth of 3.8 out of 4. I was then sent for PET scan which showed it in my lymph nodes in th left groin. That’s all I know. The oncologist said it was stage 3.??? -
- February 9, 2013 at 9:30 pm
I don’t know much about any of this, but I am learning. All I know is this small pink spot was found by accident on my foot. I was sent to another dr so he could look at it. He didn’t think it was anything but decided to biopsy it because of my light hair and green eyes. It came back as melanoma with a depth of 3.8 out of 4. I was then sent for PET scan which showed it in my lymph nodes in th left groin. That’s all I know. The oncologist said it was stage 3.??? -
- February 9, 2013 at 9:30 pm
I don’t know much about any of this, but I am learning. All I know is this small pink spot was found by accident on my foot. I was sent to another dr so he could look at it. He didn’t think it was anything but decided to biopsy it because of my light hair and green eyes. It came back as melanoma with a depth of 3.8 out of 4. I was then sent for PET scan which showed it in my lymph nodes in th left groin. That’s all I know. The oncologist said it was stage 3.??? -
- February 9, 2013 at 9:31 pm
I don’t know much about any of this, but I am learning. All I know is this small pink spot was found by accident on my foot. I was sent to another dr so he could look at it. He didn’t think it was anything but decided to biopsy it because of my light hair and green eyes. It came back as melanoma with a depth of 3.8 out of 4. I was then sent for PET scan which showed it in my lymph nodes in th left groin. That’s all I know. The oncologist said it was stage 3.??? -
- February 9, 2013 at 9:31 pm
I don’t know much about any of this, but I am learning. All I know is this small pink spot was found by accident on my foot. I was sent to another dr so he could look at it. He didn’t think it was anything but decided to biopsy it because of my light hair and green eyes. It came back as melanoma with a depth of 3.8 out of 4. I was then sent for PET scan which showed it in my lymph nodes in th left groin. That’s all I know. The oncologist said it was stage 3.??? -
- February 9, 2013 at 9:31 pm
I don’t know much about any of this, but I am learning. All I know is this small pink spot was found by accident on my foot. I was sent to another dr so he could look at it. He didn’t think it was anything but decided to biopsy it because of my light hair and green eyes. It came back as melanoma with a depth of 3.8 out of 4. I was then sent for PET scan which showed it in my lymph nodes in th left groin. That’s all I know. The oncologist said it was stage 3.??? -
- February 9, 2013 at 9:32 pm
I don’t know much about any of this, but I am learning. All I know is this small pink spot was found by accident on my foot. I was sent to another dr so he could look at it. He didn’t think it was anything but decided to biopsy it because of my light hair and green eyes. It came back as melanoma with a depth of 3.8 out of 4. I was then sent for PET scan which showed it in my lymph nodes in th left groin. That’s all I know. The oncologist said it was stage 3.??? -
- February 9, 2013 at 9:32 pm
I don’t know much about any of this, but I am learning. All I know is this small pink spot was found by accident on my foot. I was sent to another dr so he could look at it. He didn’t think it was anything but decided to biopsy it because of my light hair and green eyes. It came back as melanoma with a depth of 3.8 out of 4. I was then sent for PET scan which showed it in my lymph nodes in th left groin. That’s all I know. The oncologist said it was stage 3.??? -
- February 9, 2013 at 10:35 pm
It's good you are going to MDA. They are very well versed in melanoma and will hopefully get your treatment on track.
Breslow depth has no upper limit, so it sounds as if yours was 3.8mm or possibly Clark's Level III. Hard to tell exactly from your description. Did it have clean deep margins? (Get copies of all your pathology and scan reports for your own files). In addition, a PET scan is not usually used to determine if it has spread to the lymph nodes. Pet scans have false positives and could easily be inflamed from the biopsy itself. PET scans also do not see microscopic cells so are unreliable for determining small amounts of disease. PET scans can respond to any metabolic intake so inflammation, arthritis and many other things can cause PET scans to light up. Typically, they do a Sentinel Node Biopsy (SNB) prior to doing a Wide Local Excision (WLE). The WLE takes larger margins around the primary tumor to remove any cells that might have escaped. The SNB traces the drainage path from the original tumor to the first lymph node in the basin. For you, this could be groin or behind the knee. The SNB is a more definitive approach to determining stage. These are all procedures that MDA does all the time so you will be in good hands there.
Get copies of everything, take good notes (bring a friend if possible) and feel free to ask questions here!
Best wishes,
Janner
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- February 9, 2013 at 10:35 pm
It's good you are going to MDA. They are very well versed in melanoma and will hopefully get your treatment on track.
Breslow depth has no upper limit, so it sounds as if yours was 3.8mm or possibly Clark's Level III. Hard to tell exactly from your description. Did it have clean deep margins? (Get copies of all your pathology and scan reports for your own files). In addition, a PET scan is not usually used to determine if it has spread to the lymph nodes. Pet scans have false positives and could easily be inflamed from the biopsy itself. PET scans also do not see microscopic cells so are unreliable for determining small amounts of disease. PET scans can respond to any metabolic intake so inflammation, arthritis and many other things can cause PET scans to light up. Typically, they do a Sentinel Node Biopsy (SNB) prior to doing a Wide Local Excision (WLE). The WLE takes larger margins around the primary tumor to remove any cells that might have escaped. The SNB traces the drainage path from the original tumor to the first lymph node in the basin. For you, this could be groin or behind the knee. The SNB is a more definitive approach to determining stage. These are all procedures that MDA does all the time so you will be in good hands there.
Get copies of everything, take good notes (bring a friend if possible) and feel free to ask questions here!
Best wishes,
Janner
-
- February 9, 2013 at 10:35 pm
It's good you are going to MDA. They are very well versed in melanoma and will hopefully get your treatment on track.
Breslow depth has no upper limit, so it sounds as if yours was 3.8mm or possibly Clark's Level III. Hard to tell exactly from your description. Did it have clean deep margins? (Get copies of all your pathology and scan reports for your own files). In addition, a PET scan is not usually used to determine if it has spread to the lymph nodes. Pet scans have false positives and could easily be inflamed from the biopsy itself. PET scans also do not see microscopic cells so are unreliable for determining small amounts of disease. PET scans can respond to any metabolic intake so inflammation, arthritis and many other things can cause PET scans to light up. Typically, they do a Sentinel Node Biopsy (SNB) prior to doing a Wide Local Excision (WLE). The WLE takes larger margins around the primary tumor to remove any cells that might have escaped. The SNB traces the drainage path from the original tumor to the first lymph node in the basin. For you, this could be groin or behind the knee. The SNB is a more definitive approach to determining stage. These are all procedures that MDA does all the time so you will be in good hands there.
Get copies of everything, take good notes (bring a friend if possible) and feel free to ask questions here!
Best wishes,
Janner
-
- February 9, 2013 at 9:32 pm
I don’t know much about any of this, but I am learning. All I know is this small pink spot was found by accident on my foot. I was sent to another dr so he could look at it. He didn’t think it was anything but decided to biopsy it because of my light hair and green eyes. It came back as melanoma with a depth of 3.8 out of 4. I was then sent for PET scan which showed it in my lymph nodes in th left groin. That’s all I know. The oncologist said it was stage 3.???
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- February 9, 2013 at 6:06 am
I am wondering if maybe you had a miscommunication. Did your general Onc say you were Barslow level 3? That is not the same as stage 3. The only way you would know if you were stage 3 is if you had a sentinel node biopsy. Right now probably all you would have is a preliminary depth and a mitotic rate (how fast the tumor was growing). Hope you can get a follow-up appointment soon.
Mary
Stage 3
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- February 9, 2013 at 6:06 am
I am wondering if maybe you had a miscommunication. Did your general Onc say you were Barslow level 3? That is not the same as stage 3. The only way you would know if you were stage 3 is if you had a sentinel node biopsy. Right now probably all you would have is a preliminary depth and a mitotic rate (how fast the tumor was growing). Hope you can get a follow-up appointment soon.
Mary
Stage 3
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