new diagnosis 1.38mm

This topic has 60 replies, 7 voices, and was last updated 9 years, 7 months ago by scragfinch.

Post

- September 10, 2014 at 7:03 pm
- Quote
scragfinch
Participant
Hello everyone. I’m new and would like some advice. I live in the uk. I was diagnosed with melanoma on my knee at the beginning of September. When I received the diagnosis from my dermatologist I was in shock. He said he would do a wle. I didn’t know what to ask and just wanted to get out of there. The dermatologist said it was thin and that 95 percent of people he sees are ok. I went home and did some research.

When I went back for the wle I found out breslow depth was 1.38 with mitotic rate 1. I asked about sentinel node biopsy and he said it would give no advantage and he felt nothing in my lymph nodes. I get the results of the wle in 3 weeks. Both my parents had cancer. My dad died of lung cancer which spread to his brain in 2012 so I have seen what a terrible disease it is. Back then I had to fight for his diagnosis (they wouldn’t do a scan) and aggressive treatment. Do you think I should get a second opinion now and push for scans and blood tests? I want to do everything I can. I’m 34.

Viewing 14 reply threads

Replies

- - September 10, 2014 at 7:19 pm
  - Quote
  liberty04281
  Participant
  Your doctor is wrong.
  
  You should do SNB (sentinel node biopsy), because the breslow depth of your melanoma is ticker than 1mm. It does not mean that there is no cancer cells in your lymph nodes if doctor does not feel it. After that you should go for check ups regularly with your melanoma specialist, maybe do CT scans too.
  
  Good Luck!
- - September 10, 2014 at 7:19 pm
  - Quote
  liberty04281
  Participant
  Your doctor is wrong.
  
  You should do SNB (sentinel node biopsy), because the breslow depth of your melanoma is ticker than 1mm. It does not mean that there is no cancer cells in your lymph nodes if doctor does not feel it. After that you should go for check ups regularly with your melanoma specialist, maybe do CT scans too.
  
  Good Luck!
  - September 10, 2014 at 8:09 pm
    
    Quote
    scragfinch
    Participant
    
    Thanks for your reply. Isn’t it too late to do snb now I have already had wle?
  - September 10, 2014 at 9:05 pm
    
    Quote
    liberty04281
    Participant
    
    It is not late to do SNB, but I didn’t know that UK have different standards.
    If were you I would try to get CT scan.
    It is very important, and I am talking from my experience.
    Best of luck!
  - September 10, 2014 at 9:05 pm
    
    Quote
    liberty04281
    Participant
    
    It is not late to do SNB, but I didn’t know that UK have different standards.
    If were you I would try to get CT scan.
    It is very important, and I am talking from my experience.
    Best of luck!
  - September 10, 2014 at 9:23 pm
    
    Quote
    scragfinch
    Participant
    
    Thanks so much. I was thinking of asking for pet, ct and mri plus blood test.
  - September 10, 2014 at 9:23 pm
    
    Quote
    scragfinch
    Participant
    
    Thanks so much. I was thinking of asking for pet, ct and mri plus blood test.
  - September 10, 2014 at 9:23 pm
    
    Quote
    scragfinch
    Participant
    
    Thanks so much. I was thinking of asking for pet, ct and mri plus blood test.
  - September 10, 2014 at 9:38 pm
    
    Quote
    liberty04281
    Participant
    
    Please ask for PET and CT scan, and go to melanoma specialist to check your lymph nodes. That’s how they found one of my lymph nodes. After they did biopsy it showed melanoma. Then I had lymph nodes removal. I think you are still diagnosed early, but you have to be on top of it all the time.
    Be optimistic.
  - September 10, 2014 at 9:38 pm
    
    Quote
    liberty04281
    Participant
    
    Please ask for PET and CT scan, and go to melanoma specialist to check your lymph nodes. That’s how they found one of my lymph nodes. After they did biopsy it showed melanoma. Then I had lymph nodes removal. I think you are still diagnosed early, but you have to be on top of it all the time.
    Be optimistic.
  - September 10, 2014 at 9:38 pm
    
    Quote
    liberty04281
    Participant
    
    Please ask for PET and CT scan, and go to melanoma specialist to check your lymph nodes. That’s how they found one of my lymph nodes. After they did biopsy it showed melanoma. Then I had lymph nodes removal. I think you are still diagnosed early, but you have to be on top of it all the time.
    Be optimistic.
  - September 10, 2014 at 9:05 pm
    
    Quote
    liberty04281
    Participant
    
    It is not late to do SNB, but I didn’t know that UK have different standards.
    If were you I would try to get CT scan.
    It is very important, and I am talking from my experience.
    Best of luck!
  - September 10, 2014 at 10:03 pm
    
    Quote
    Janner
    Participant
    
    Yes, it really is too late after having the SNB. The results could be compromised. You can never know for certain if the sentinel node found now is the same as it would have been prior to the WLE.
  - September 10, 2014 at 10:03 pm
    
    Quote
    Janner
    Participant
    
    Yes, it really is too late after having the SNB. The results could be compromised. You can never know for certain if the sentinel node found now is the same as it would have been prior to the WLE.
  - September 10, 2014 at 10:03 pm
    
    Quote
    Janner
    Participant
    
    Yes, it really is too late after having the SNB. The results could be compromised. You can never know for certain if the sentinel node found now is the same as it would have been prior to the WLE.
  - September 10, 2014 at 10:06 pm
    
    Quote
    Janner
    Participant
    
    Change first sentence to WLE from SNB.
  - September 10, 2014 at 10:06 pm
    
    Quote
    Janner
    Participant
    
    Change first sentence to WLE from SNB.
  - September 10, 2014 at 10:06 pm
    
    Quote
    Janner
    Participant
    
    Change first sentence to WLE from SNB.
  - September 10, 2014 at 8:09 pm
    
    Quote
    scragfinch
    Participant
    
    Thanks for your reply. Isn’t it too late to do snb now I have already had wle?
  - September 10, 2014 at 8:09 pm
    
    Quote
    scragfinch
    Participant
    
    Thanks for your reply. Isn’t it too late to do snb now I have already had wle?
- - September 10, 2014 at 7:19 pm
  - Quote
  liberty04281
  Participant
  Your doctor is wrong.
  
  You should do SNB (sentinel node biopsy), because the breslow depth of your melanoma is ticker than 1mm. It does not mean that there is no cancer cells in your lymph nodes if doctor does not feel it. After that you should go for check ups regularly with your melanoma specialist, maybe do CT scans too.
  
  Good Luck!
- - September 10, 2014 at 7:56 pm
  - Quote
  Janner
  Participant
  UK has different standards than the US. They don't do the SNB as often. In the US, your lesion would definitely have qualified. NHS has their own ideas about treatment and follow up scans and I doubt you'll get a lot of scans. Technically, without the SNB, you are stage 1 and scans just aren't done for stage 1. Learn how to palpate your groin nodes to watch for any evidence of spread and good luck!
  - September 10, 2014 at 8:12 pm
    
    Quote
    scragfinch
    Participant
    
    It does seem to be quite different. I have private healthcare so I do have more chance of getting additional tests if I push. I just hate the idea of it silently spreading around me without my knowing. I’m scared and don’t have much trust after seeing what happened to my dad.
  - September 10, 2014 at 8:12 pm
    
    Quote
    scragfinch
    Participant
    
    It does seem to be quite different. I have private healthcare so I do have more chance of getting additional tests if I push. I just hate the idea of it silently spreading around me without my knowing. I’m scared and don’t have much trust after seeing what happened to my dad.
  - September 10, 2014 at 10:05 pm
    
    Quote
    Janner
    Participant
    
    Anybody with a diagnosis has to learn to live with.. the possibility. It is life after a diagnosis, unfortunately.
  - September 10, 2014 at 10:05 pm
    
    Quote
    Janner
    Participant
    
    Anybody with a diagnosis has to learn to live with.. the possibility. It is life after a diagnosis, unfortunately.
  - September 10, 2014 at 10:05 pm
    
    Quote
    Janner
    Participant
    
    Anybody with a diagnosis has to learn to live with.. the possibility. It is life after a diagnosis, unfortunately.
  - September 10, 2014 at 8:12 pm
    
    Quote
    scragfinch
    Participant
    
    It does seem to be quite different. I have private healthcare so I do have more chance of getting additional tests if I push. I just hate the idea of it silently spreading around me without my knowing. I’m scared and don’t have much trust after seeing what happened to my dad.
- - September 10, 2014 at 7:56 pm
  - Quote
  Janner
  Participant
  UK has different standards than the US. They don't do the SNB as often. In the US, your lesion would definitely have qualified. NHS has their own ideas about treatment and follow up scans and I doubt you'll get a lot of scans. Technically, without the SNB, you are stage 1 and scans just aren't done for stage 1. Learn how to palpate your groin nodes to watch for any evidence of spread and good luck!
- - September 10, 2014 at 7:56 pm
  - Quote
  Janner
  Participant
  UK has different standards than the US. They don't do the SNB as often. In the US, your lesion would definitely have qualified. NHS has their own ideas about treatment and follow up scans and I doubt you'll get a lot of scans. Technically, without the SNB, you are stage 1 and scans just aren't done for stage 1. Learn how to palpate your groin nodes to watch for any evidence of spread and good luck!
- - September 10, 2014 at 9:25 pm
  - Quote
  ed williams
  Participant
  If you get the sentinel node done it helps the Dr. to give you the proper stage. I live in Canada and had three nodes removed at the same time as they did the wle, which was done by a surgeon. I didn't see a melanoma specialist until after having a complete Auxillary node removal of my left arm pit. I am slowing learning that you have to push and fight for things such as Pet scans. Educate yourself by reading old post on this forum, many people have been where you are now and there have been many questions asked and answered about your current situation. The dermatologist that I saw after my biopsy of the mole on my back, looked me over gave me a pat on the head and said I will see you in 6 months. Her secretary called two days later saying that she had changed her mind and was referring me to a surgeon. I still feel to this day that she was way to busy and probably didn't read the biopsy report until a couple of days later. A second opinion never hurts!!! Best of luck. Ed
  - September 10, 2014 at 10:17 pm
    
    Quote
    scragfinch
    Participant
    
    Thanks Ed and everyone else. I agree you have to push and take responsibility for your own care. Can anyone recommend a first rate specialist in melanoma in London? Thanks.
  - September 10, 2014 at 10:17 pm
    
    Quote
    scragfinch
    Participant
    
    Thanks Ed and everyone else. I agree you have to push and take responsibility for your own care. Can anyone recommend a first rate specialist in melanoma in London? Thanks.
  - September 10, 2014 at 10:17 pm
    
    Quote
    scragfinch
    Participant
    
    Thanks Ed and everyone else. I agree you have to push and take responsibility for your own care. Can anyone recommend a first rate specialist in melanoma in London? Thanks.
  - September 28, 2014 at 4:53 pm
    
    Quote
    oldblue
    Participant
    
    YES. I have emailed you three centres. They are all very good. Thye are based in or around London, but in my opinion, it is worth travelling to one of them.
    
    Message me if you don't get them.
    
    Nigel.
  - September 28, 2014 at 4:53 pm
    
    Quote
    oldblue
    Participant
    
    YES. I have emailed you three centres. They are all very good. Thye are based in or around London, but in my opinion, it is worth travelling to one of them.
    
    Message me if you don't get them.
    
    Nigel.
  - September 28, 2014 at 5:23 pm
    
    Quote
    scragfinch
    Participant
    
    Thank you Nigel. I live in London so not a problem. I have been in touch with Prof Thomas at the Royal Marsden re joining their lymph node ultrasound trial but got told on Friday I am not eligible as I have already had WLE. I see my consultant tomorrow and will mention the places you emailed about to see if I can get ultrasound at one of them. Thanks Nigel.
  - September 28, 2014 at 5:23 pm
    
    Quote
    scragfinch
    Participant
    
    Thank you Nigel. I live in London so not a problem. I have been in touch with Prof Thomas at the Royal Marsden re joining their lymph node ultrasound trial but got told on Friday I am not eligible as I have already had WLE. I see my consultant tomorrow and will mention the places you emailed about to see if I can get ultrasound at one of them. Thanks Nigel.
  - September 28, 2014 at 5:23 pm
    
    Quote
    scragfinch
    Participant
    
    Thank you Nigel. I live in London so not a problem. I have been in touch with Prof Thomas at the Royal Marsden re joining their lymph node ultrasound trial but got told on Friday I am not eligible as I have already had WLE. I see my consultant tomorrow and will mention the places you emailed about to see if I can get ultrasound at one of them. Thanks Nigel.
  - September 28, 2014 at 4:53 pm
    
    Quote
    oldblue
    Participant
    
    YES. I have emailed you three centres. They are all very good. Thye are based in or around London, but in my opinion, it is worth travelling to one of them.
    
    Message me if you don't get them.
    
    Nigel.
- - September 10, 2014 at 9:25 pm
  - Quote
  ed williams
  Participant
  If you get the sentinel node done it helps the Dr. to give you the proper stage. I live in Canada and had three nodes removed at the same time as they did the wle, which was done by a surgeon. I didn't see a melanoma specialist until after having a complete Auxillary node removal of my left arm pit. I am slowing learning that you have to push and fight for things such as Pet scans. Educate yourself by reading old post on this forum, many people have been where you are now and there have been many questions asked and answered about your current situation. The dermatologist that I saw after my biopsy of the mole on my back, looked me over gave me a pat on the head and said I will see you in 6 months. Her secretary called two days later saying that she had changed her mind and was referring me to a surgeon. I still feel to this day that she was way to busy and probably didn't read the biopsy report until a couple of days later. A second opinion never hurts!!! Best of luck. Ed
- - September 10, 2014 at 9:25 pm
  - Quote
  ed williams
  Participant
  If you get the sentinel node done it helps the Dr. to give you the proper stage. I live in Canada and had three nodes removed at the same time as they did the wle, which was done by a surgeon. I didn't see a melanoma specialist until after having a complete Auxillary node removal of my left arm pit. I am slowing learning that you have to push and fight for things such as Pet scans. Educate yourself by reading old post on this forum, many people have been where you are now and there have been many questions asked and answered about your current situation. The dermatologist that I saw after my biopsy of the mole on my back, looked me over gave me a pat on the head and said I will see you in 6 months. Her secretary called two days later saying that she had changed her mind and was referring me to a surgeon. I still feel to this day that she was way to busy and probably didn't read the biopsy report until a couple of days later. A second opinion never hurts!!! Best of luck. Ed
- - September 13, 2014 at 2:33 am
  - Quote
  Squash
  Participant
  Dont worry you should be okay.
  
  SLNB would possibly not be accurate now but ultrasound follow up is what you need.
  
  PET/CT scan would only be indicated if anything abnormal turned up on an ultrasound.
  
  Ultrasound should be done on the nodes in the groin same side as the knee.
- - September 13, 2014 at 2:33 am
  - Quote
  Squash
  Participant
  Dont worry you should be okay.
  
  SLNB would possibly not be accurate now but ultrasound follow up is what you need.
  
  PET/CT scan would only be indicated if anything abnormal turned up on an ultrasound.
  
  Ultrasound should be done on the nodes in the groin same side as the knee.
  - September 25, 2014 at 7:18 am
    
    Quote
    scragfinch
    Participant
    
    Thanks but I’ve been told I’m not eligible for ultrasound of lymph nodes as I’ve already had the wide excision. I’m not totally clear as to why. I feel at a dead end in terms of investigating. I read I have an 8 percent chance of a melanoma this thick having spread and killed me within 5 years. I’m visiting my sister in Italy in October and she’s got me an appointment with an oncologist there. My medical insurance won’t cover it plus I’m not sure what he will be able to do without scans. I only have a wide excision scar to show. I don’t even have my pathology results. I get my wide excision results on Monday. Many do doctors on this side of the Atlantic believe lymph node biopsy often has complications for the patient and statistically leads to no better outcome. Not sure how those stats are worked out as I would have thought finding spread to lymph nodes early would increase your survival rate. Confused.
  - September 25, 2014 at 7:18 am
    
    Quote
    scragfinch
    Participant
    
    Thanks but I’ve been told I’m not eligible for ultrasound of lymph nodes as I’ve already had the wide excision. I’m not totally clear as to why. I feel at a dead end in terms of investigating. I read I have an 8 percent chance of a melanoma this thick having spread and killed me within 5 years. I’m visiting my sister in Italy in October and she’s got me an appointment with an oncologist there. My medical insurance won’t cover it plus I’m not sure what he will be able to do without scans. I only have a wide excision scar to show. I don’t even have my pathology results. I get my wide excision results on Monday. Many do doctors on this side of the Atlantic believe lymph node biopsy often has complications for the patient and statistically leads to no better outcome. Not sure how those stats are worked out as I would have thought finding spread to lymph nodes early would increase your survival rate. Confused.
  - September 25, 2014 at 7:18 am
    
    Quote
    scragfinch
    Participant
    
    Thanks but I’ve been told I’m not eligible for ultrasound of lymph nodes as I’ve already had the wide excision. I’m not totally clear as to why. I feel at a dead end in terms of investigating. I read I have an 8 percent chance of a melanoma this thick having spread and killed me within 5 years. I’m visiting my sister in Italy in October and she’s got me an appointment with an oncologist there. My medical insurance won’t cover it plus I’m not sure what he will be able to do without scans. I only have a wide excision scar to show. I don’t even have my pathology results. I get my wide excision results on Monday. Many do doctors on this side of the Atlantic believe lymph node biopsy often has complications for the patient and statistically leads to no better outcome. Not sure how those stats are worked out as I would have thought finding spread to lymph nodes early would increase your survival rate. Confused.
- - September 13, 2014 at 2:33 am
  - Quote
  Squash
  Participant
  Dont worry you should be okay.
  
  SLNB would possibly not be accurate now but ultrasound follow up is what you need.
  
  PET/CT scan would only be indicated if anything abnormal turned up on an ultrasound.
  
  Ultrasound should be done on the nodes in the groin same side as the knee.
- - September 19, 2014 at 3:36 am
  - Quote
  Melissag0624
  Participant
  I was told that I only had a 5% chance of my lymph nodes being positive and you guessed it, mine were. I was told that if they hadn’t caught it I would have been dead in a year. I don’t mean to alarm you, but it took a good friend of mine who worked in oncology to convince me to take things more seriously. Better safe than sorry. Maybe take some documents to your doctor to show him the benefits of doing the biopsy. If anything won’t he make more money??
  Good luck to you and sorry to welcome you to our club.
  
  Stage 3b, primary upper left shoulder, positive lymph nodes, no reoccurrance since Aug 2013.
- - September 19, 2014 at 3:36 am
  - Quote
  Melissag0624
  Participant
  I was told that I only had a 5% chance of my lymph nodes being positive and you guessed it, mine were. I was told that if they hadn’t caught it I would have been dead in a year. I don’t mean to alarm you, but it took a good friend of mine who worked in oncology to convince me to take things more seriously. Better safe than sorry. Maybe take some documents to your doctor to show him the benefits of doing the biopsy. If anything won’t he make more money??
  Good luck to you and sorry to welcome you to our club.
  
  Stage 3b, primary upper left shoulder, positive lymph nodes, no reoccurrance since Aug 2013.
- - September 19, 2014 at 3:36 am
  - Quote
  Melissag0624
  Participant
  I was told that I only had a 5% chance of my lymph nodes being positive and you guessed it, mine were. I was told that if they hadn’t caught it I would have been dead in a year. I don’t mean to alarm you, but it took a good friend of mine who worked in oncology to convince me to take things more seriously. Better safe than sorry. Maybe take some documents to your doctor to show him the benefits of doing the biopsy. If anything won’t he make more money??
  Good luck to you and sorry to welcome you to our club.
  
  Stage 3b, primary upper left shoulder, positive lymph nodes, no reoccurrance since Aug 2013.
  - September 19, 2014 at 9:24 am
    
    Quote
    Squash
    Participant
    
    No one could or should say you would be dead in a year.
    
    In fact the research is not even clear whether taking out the lymph nodes early extends overall survival.
    
    That is why they are doing the current MLST11.
    
    Fear tactics like that dont do anyone any good. There is almost always time.
  - September 19, 2014 at 9:24 am
    
    Quote
    Squash
    Participant
    
    No one could or should say you would be dead in a year.
    
    In fact the research is not even clear whether taking out the lymph nodes early extends overall survival.
    
    That is why they are doing the current MLST11.
    
    Fear tactics like that dont do anyone any good. There is almost always time.
  - September 19, 2014 at 9:24 am
    
    Quote
    Squash
    Participant
    
    No one could or should say you would be dead in a year.
    
    In fact the research is not even clear whether taking out the lymph nodes early extends overall survival.
    
    That is why they are doing the current MLST11.
    
    Fear tactics like that dont do anyone any good. There is almost always time.
  - September 25, 2014 at 7:23 am
    
    Quote
    scragfinch
    Participant
    
    Hi squash. Doctors in the uk tend to think it doesn’t help survival rate but to be honest I don’t really understand it as surely it increases your survival chances if you catch it early. If nothing else it might prompt things like pet scans which could spot something early.
  - September 25, 2014 at 7:23 am
    
    Quote
    scragfinch
    Participant
    
    Hi squash. Doctors in the uk tend to think it doesn’t help survival rate but to be honest I don’t really understand it as surely it increases your survival chances if you catch it early. If nothing else it might prompt things like pet scans which could spot something early.
  - September 25, 2014 at 7:23 am
    
    Quote
    scragfinch
    Participant
    
    Hi squash. Doctors in the uk tend to think it doesn’t help survival rate but to be honest I don’t really understand it as surely it increases your survival chances if you catch it early. If nothing else it might prompt things like pet scans which could spot something early.
  - September 25, 2014 at 7:20 am
    
    Quote
    scragfinch
    Participant
    
    Hi Melissa. Hope you stay healthy for many many years to come. How thick was your tumour?
  - September 25, 2014 at 7:20 am
    
    Quote
    scragfinch
    Participant
    
    Hi Melissa. Hope you stay healthy for many many years to come. How thick was your tumour?
  - September 25, 2014 at 7:20 am
    
    Quote
    scragfinch
    Participant
    
    Hi Melissa. Hope you stay healthy for many many years to come. How thick was your tumour?