9 yearold daughter/tests?

This topic has 20 replies, 7 voices, and was last updated 13 years, 7 months ago by Becky.

Post

- February 11, 2011 at 5:53 pm
- Quote
dafad777
Participant
I was wondering when i go see the melanoma specilist if anyone knows if he would recomend slnb or should i say something about it.only because of what i've read said when they go back in for re-incision sometimes they do the slnb.no one did one on my daughter and they went back in and took 5mm more off her ear.and she has not had an xray,a cat scan,pet scan nothing.i think she should have already had something.her first surgery was oct 26th.2010.

I was wondering when i go see the melanoma specilist if anyone knows if he would recomend slnb or should i say something about it.only because of what i've read said when they go back in for re-incision sometimes they do the slnb.no one did one on my daughter and they went back in and took 5mm more off her ear.and she has not had an xray,a cat scan,pet scan nothing.i think she should have already had something.her first surgery was oct 26th.2010.

Viewing 5 reply threads

Replies

- - February 11, 2011 at 6:55 pm
  - Quote
  Janner
  Participant
  I don't remember the details about your daughter, but I'll explain the idea behind the SNB. Typically the SNB needs to be done prior to the WLE (wide local excision). The sentinel lymph node biopsy is done before they remove extra material so they can trace the lymph node drainage to the closest lymph node. Once you remove extra skin, you may change the drainage paths and the sentinel node might change. Certainly, with a lesion on the ear, the neck nodes are the obvious drainage basin. But if you have the SNB now, you can't GUARANTEE the sentinel node seen at this point would be the same as prior to the wide excision. Some docs might do it anyway, but you have lost that high confidence that you probably would have had prior to the WLE.
  
  Best wishes,
  
  Janner
  - February 11, 2011 at 8:52 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Janner,
    
    When I read this opening thread I thought to myself: "here's a good question for Janner as she explains things so well!"
    
    Thanks for your response, and to the dad who posted—best of luck and success with your daughter's treatments! How horrible to have to deal with any of this especially at her tender age.
    
    Vermont_Donna, stage 3a
  - February 11, 2011 at 9:31 pm
    
    Quote
    Jerry from Cape Cod
    Participant
    
    Donna,
    
    Great minds etc. I've thought we should petition for an "ASK JANNER" button so when some of us just know she's can explain it better. Push the button.
    
    Janner,
    
    We all owe you a debt of gratitude for your sharing.
    
    Jerry from Cape Cod
  - February 11, 2011 at 9:31 pm
    
    Quote
    Jerry from Cape Cod
    Participant
    
    Donna,
    
    Great minds etc. I've thought we should petition for an "ASK JANNER" button so when some of us just know she's can explain it better. Push the button.
    
    Janner,
    
    We all owe you a debt of gratitude for your sharing.
    
    Jerry from Cape Cod
  - February 11, 2011 at 8:52 pm
    
    Quote
    Vermont_Donna
    Participant
    
    Janner,
    
    When I read this opening thread I thought to myself: "here's a good question for Janner as she explains things so well!"
    
    Thanks for your response, and to the dad who posted—best of luck and success with your daughter's treatments! How horrible to have to deal with any of this especially at her tender age.
    
    Vermont_Donna, stage 3a
- - February 11, 2011 at 6:55 pm
  - Quote
  Janner
  Participant
  I don't remember the details about your daughter, but I'll explain the idea behind the SNB. Typically the SNB needs to be done prior to the WLE (wide local excision). The sentinel lymph node biopsy is done before they remove extra material so they can trace the lymph node drainage to the closest lymph node. Once you remove extra skin, you may change the drainage paths and the sentinel node might change. Certainly, with a lesion on the ear, the neck nodes are the obvious drainage basin. But if you have the SNB now, you can't GUARANTEE the sentinel node seen at this point would be the same as prior to the wide excision. Some docs might do it anyway, but you have lost that high confidence that you probably would have had prior to the WLE.
  
  Best wishes,
  
  Janner
- - February 11, 2011 at 9:26 pm
  - Quote
  washoegal
  Participant
  On your profile it says you didn't know the depth of the tumor. This would normally determine if a Sentinal Node Biopsy is called for. Dad, please request a copy of both biopsy reports for your files. Some of the Oncs are now testing Ultra-sound rather than surgey to check lymph nodes.
  
  When you go back to the doctor you should feel free to ask questions. I have found some get kind of snotty if you mention the internet, so I just say I "read", but you need to know the depth the stage, future treatment if any. If she was a stage 0 or 1, there may be no further treatment.
  
  Janner has a wonderful web site if you haven't already vitied it, go there.
  
  Mary
  
  Stage 3
- - February 11, 2011 at 9:26 pm
  - Quote
  washoegal
  Participant
  On your profile it says you didn't know the depth of the tumor. This would normally determine if a Sentinal Node Biopsy is called for. Dad, please request a copy of both biopsy reports for your files. Some of the Oncs are now testing Ultra-sound rather than surgey to check lymph nodes.
  
  When you go back to the doctor you should feel free to ask questions. I have found some get kind of snotty if you mention the internet, so I just say I "read", but you need to know the depth the stage, future treatment if any. If she was a stage 0 or 1, there may be no further treatment.
  
  Janner has a wonderful web site if you haven't already vitied it, go there.
  
  Mary
  
  Stage 3
- - February 11, 2011 at 10:50 pm
  - Quote
  Janner
  Participant
  Thanks for the kind words, guys.
  
  To the original poster, Mary had a good point. If you don't know her stage and don't have a copy of the pathology report, these are the first things you should take care of when you see the doctor. One thing that stood out from your post – 5mm margins were taken. This is indicative of a lesion that is atypical or in situ. In situ is considered stage 0 and the other isn't considered cancer yet. In situ has a high cure rate and further tests wouldn't be done. However, I am assuming a lot from your original post based on the WLE margins alone. PLEASE get a copy of the pathology report and ask a lot of questions. We're happy to help you understand the pathology report here, too. We just need more information to be of any real help.
  
  Best wishes,
  
  Janner
  - February 12, 2011 at 12:29 pm
    
    Quote
    dafad777
    Participant
    
    thank you janner I have my daughters path report.which i wish it helped me understand.but under assessment they called it severely atypical pigmented tumorigenic melanocytic neoplasm(melanocytic tumor of uncertain malignant potential)and under the comments/recommendation;this lesion has characteristics of what has been termed 'pigmented epithelioid melanocytoma'such lesions have overlap with melanophagic/animal-type melanoma.my concern was that she had it for three years and it had ulcerationand was about the size of a dime.the first surgery they took a ellipse of skin that measures 1.1x 0.6 cm,deepth 0.6 cm.on the surface there is a black gray lesion that measures 0.6 x0.5 cm then after that they went back and took the wle that was on dec 3 they took 1.6 x 0.8 cm and has a depth of 0.5 cm little tricky reading there report.thanks
  - February 12, 2011 at 4:41 pm
    
    Quote
    Janner
    Participant
    
    Is your daughter being seen at a major melanoma center? I usually can translate path reports into normal speak, but I remember now that your daughter's case is beyond the norm. There is nothing I can say to help with this report as it isn't "melanoma" in the typical sense we see around here. Treatments, etc. that are mentioned here may not be applicable to your daughter's case either. I'd make a list of questions to ask the doctors. I'd ask for multiple opinions on the path report having it sent to experts in the field. I'd make myself a pest until I understood what was going on. Your daughter's case is so unique that most of us here can't really comment other than to make general suggestions.
    
    Best wishes,
    
    Janner
  - February 12, 2011 at 5:41 pm
    
    Quote
    dafad777
    Participant
    
    im glad im not the only one that seems not to understand it.she was at first recomended to dana farber in boston.then the dermatoligist called back and told me to wait because she was going to see if she could get me someone else.she took a week because no one would see her because of her age.then she called and said dr.martin mihm would see her even thought he usally only sees 16 and up.we had an appt. dec 18th at mass eye ear informery because he does melanoma clinic there once a month.we went and when we got there he wasnt because someone pasted away in his family night before.thats why now we have an appt. feb. 22 know at his office at brighham and womens hosptial in boston.thats why im trying to get all my Q and a's in order.to be honest its consumed me.when she says she has a head ache or neck pain im wondering if i should take her to doctor.or if its just normal stuff.cant wait to see doctor hope i get some answers thank you youve been so helpful.
  - February 12, 2011 at 5:41 pm
    
    Quote
    dafad777
    Participant
    
    im glad im not the only one that seems not to understand it.she was at first recomended to dana farber in boston.then the dermatoligist called back and told me to wait because she was going to see if she could get me someone else.she took a week because no one would see her because of her age.then she called and said dr.martin mihm would see her even thought he usally only sees 16 and up.we had an appt. dec 18th at mass eye ear informery because he does melanoma clinic there once a month.we went and when we got there he wasnt because someone pasted away in his family night before.thats why now we have an appt. feb. 22 know at his office at brighham and womens hosptial in boston.thats why im trying to get all my Q and a's in order.to be honest its consumed me.when she says she has a head ache or neck pain im wondering if i should take her to doctor.or if its just normal stuff.cant wait to see doctor hope i get some answers thank you youve been so helpful.
  - February 12, 2011 at 4:41 pm
    
    Quote
    Janner
    Participant
    
    Is your daughter being seen at a major melanoma center? I usually can translate path reports into normal speak, but I remember now that your daughter's case is beyond the norm. There is nothing I can say to help with this report as it isn't "melanoma" in the typical sense we see around here. Treatments, etc. that are mentioned here may not be applicable to your daughter's case either. I'd make a list of questions to ask the doctors. I'd ask for multiple opinions on the path report having it sent to experts in the field. I'd make myself a pest until I understood what was going on. Your daughter's case is so unique that most of us here can't really comment other than to make general suggestions.
    
    Best wishes,
    
    Janner
  - February 12, 2011 at 5:48 pm
    
    Quote
    W.
    Participant
    
    Judging from articles on the internet, 'pigmented epithelioid melanocytoma' seems to have a much better prognosis than "normal" melanoma.
    
    Here is a study with long follow-up:
    
    http://journals.lww.com/ajsp/Abstract/2009/12000/Pigmented_Epithelioid_Melanocytoma__Favorable.5.aspx
    
    Maybe the most important sentence:
    
    "After a median follow-up period of 67 months (range 39 to 216 mo), all patients are alive and free of disease."
    
    Of course I agree with the other commenters to find out as much as possible. But there seems to be reason for optimism.
  - February 12, 2011 at 7:57 pm
    
    Quote
    Becky
    Participant
    
    And it looks like Dr Mihm is one of the authors for that article. It's too bad you have to wait, but it sounds like he is the best person to see.
  - February 12, 2011 at 7:57 pm
    
    Quote
    Becky
    Participant
    
    And it looks like Dr Mihm is one of the authors for that article. It's too bad you have to wait, but it sounds like he is the best person to see.
  - February 12, 2011 at 5:48 pm
    
    Quote
    W.
    Participant
    
    Judging from articles on the internet, 'pigmented epithelioid melanocytoma' seems to have a much better prognosis than "normal" melanoma.
    
    Here is a study with long follow-up:
    
    http://journals.lww.com/ajsp/Abstract/2009/12000/Pigmented_Epithelioid_Melanocytoma__Favorable.5.aspx
    
    Maybe the most important sentence:
    
    "After a median follow-up period of 67 months (range 39 to 216 mo), all patients are alive and free of disease."
    
    Of course I agree with the other commenters to find out as much as possible. But there seems to be reason for optimism.
  - February 12, 2011 at 12:29 pm
    
    Quote
    dafad777
    Participant
    
    thank you janner I have my daughters path report.which i wish it helped me understand.but under assessment they called it severely atypical pigmented tumorigenic melanocytic neoplasm(melanocytic tumor of uncertain malignant potential)and under the comments/recommendation;this lesion has characteristics of what has been termed 'pigmented epithelioid melanocytoma'such lesions have overlap with melanophagic/animal-type melanoma.my concern was that she had it for three years and it had ulcerationand was about the size of a dime.the first surgery they took a ellipse of skin that measures 1.1x 0.6 cm,deepth 0.6 cm.on the surface there is a black gray lesion that measures 0.6 x0.5 cm then after that they went back and took the wle that was on dec 3 they took 1.6 x 0.8 cm and has a depth of 0.5 cm little tricky reading there report.thanks
- - February 11, 2011 at 10:50 pm
  - Quote
  Janner
  Participant
  Thanks for the kind words, guys.
  
  To the original poster, Mary had a good point. If you don't know her stage and don't have a copy of the pathology report, these are the first things you should take care of when you see the doctor. One thing that stood out from your post – 5mm margins were taken. This is indicative of a lesion that is atypical or in situ. In situ is considered stage 0 and the other isn't considered cancer yet. In situ has a high cure rate and further tests wouldn't be done. However, I am assuming a lot from your original post based on the WLE margins alone. PLEASE get a copy of the pathology report and ask a lot of questions. We're happy to help you understand the pathology report here, too. We just need more information to be of any real help.
  
  Best wishes,
  
  Janner