new info on daughter

I'm not sure I understand your post.  Your daughter had 3 more moles removed that were positive but not malignant?  I am thinkiing you mean that these moles are atypical or dysplastic.  That doesn't mean they would ever become melanoma, however.  If she has dysplastic nevus syndrome, I would be looking for a location that can do mole mapping or body photography.  Monitor moles that change and those are the ones that are suspect.  With DNS, you could remove lots of moles and still have more to go, so the photography helps you determine the highest risk moles to remove.

As for the clinical trial, from what I'm reading your daughter has to have had the WLE/SNB and the SNB must be positive to be part of the trial.  This trial compares removing all the lymph nodes after a positive sentinel node biopsy with ultrasound monitoring.  The trial has to begin within 4 months of the original biopsy.  So, your daughter needs to complete her surgery first.  Hopefully, the SNB will be negative and the trial will be a moot point.  But if her SN is positive, then she can consider the trial.  It compares surgery which is the current standard with just monitoring the lymph nodes via ultrasound.  The trial has been ongoing (either this or a different one) for a long time but I've never seen any hint at results.  If I had a lot of sentinel lymph node involvement, I probably would would want surgery.  If I had minimal lymph node involvement, I would definitely consider doing this trial.  But this is something your daughter has to decide — what makes sense for her!

Best wishes,

Janner

I'm not sure I understand your post.  Your daughter had 3 more moles removed that were positive but not malignant?  I am thinkiing you mean that these moles are atypical or dysplastic.  That doesn't mean they would ever become melanoma, however.  If she has dysplastic nevus syndrome, I would be looking for a location that can do mole mapping or body photography.  Monitor moles that change and those are the ones that are suspect.  With DNS, you could remove lots of moles and still have more to go, so the photography helps you determine the highest risk moles to remove.

As for the clinical trial, from what I'm reading your daughter has to have had the WLE/SNB and the SNB must be positive to be part of the trial.  This trial compares removing all the lymph nodes after a positive sentinel node biopsy with ultrasound monitoring.  The trial has to begin within 4 months of the original biopsy.  So, your daughter needs to complete her surgery first.  Hopefully, the SNB will be negative and the trial will be a moot point.  But if her SN is positive, then she can consider the trial.  It compares surgery which is the current standard with just monitoring the lymph nodes via ultrasound.  The trial has been ongoing (either this or a different one) for a long time but I've never seen any hint at results.  If I had a lot of sentinel lymph node involvement, I probably would would want surgery.  If I had minimal lymph node involvement, I would definitely consider doing this trial.  But this is something your daughter has to decide — what makes sense for her!

Best wishes,

Janner

I'm not sure I understand your post.  Your daughter had 3 more moles removed that were positive but not malignant?  I am thinkiing you mean that these moles are atypical or dysplastic.  That doesn't mean they would ever become melanoma, however.  If she has dysplastic nevus syndrome, I would be looking for a location that can do mole mapping or body photography.  Monitor moles that change and those are the ones that are suspect.  With DNS, you could remove lots of moles and still have more to go, so the photography helps you determine the highest risk moles to remove.

As for the clinical trial, from what I'm reading your daughter has to have had the WLE/SNB and the SNB must be positive to be part of the trial.  This trial compares removing all the lymph nodes after a positive sentinel node biopsy with ultrasound monitoring.  The trial has to begin within 4 months of the original biopsy.  So, your daughter needs to complete her surgery first.  Hopefully, the SNB will be negative and the trial will be a moot point.  But if her SN is positive, then she can consider the trial.  It compares surgery which is the current standard with just monitoring the lymph nodes via ultrasound.  The trial has been ongoing (either this or a different one) for a long time but I've never seen any hint at results.  If I had a lot of sentinel lymph node involvement, I probably would would want surgery.  If I had minimal lymph node involvement, I would definitely consider doing this trial.  But this is something your daughter has to decide — what makes sense for her!

Best wishes,

Janner

I entered this trail, back in Feb/March 2005*.    I had two nodes (left axilla/underarm) with detection of very small (don't know the medical terminology micro?macro?) evidence of melanoma detected via SNB.    I opted to enter the trial, rather than go for the total elective lymph node dissection (ELND).   I was monitored, if I recall correctly, almsot every 2 or 3 months via ultrasound to the underarm.   In September, there were two nodes they were monitoring and they were approaching a compromising size (again, don't remember the medical #'s of concern).   I had the ELND in October 2005 and  those two nodes of concern and the rest, had no evidence of melanoma disease!! 

I felt comfortable proceeding on this trial, made confident by my oncologist/surgeon, and felt secure with the u/s monitoring.    I was 57 yrs old at the time.    

The way it was presented to me, 80% of the time, total LND results in finding no more evidence of melanoma in those extra nodes that are removed.   Plus, there is the risk of problems having the LND, range of motion issues, lymphedema (swelling).    I did have extensive physical therapy and have compromised range of motion (not debilitating) and I do have some lymphedema, again not compromising to my lifestyle.  

FIRST, however, your daughter would have to come up with positive lymphnode from the SNB.   Hopefully, this will not happen.   IF SHE does have a positive node…. maybe that's where they want to know "now", but I don't know why…. I thought those nodes (or node) removed from the SNB would go through pathology first, and THEN the decision, IF NECESSARY, for a total LND would be made if the node came back positive with melanoma.   And that surgery would take place at another time.

*I see this trial (which I found under google, via NCT00297895, is now dated Feb 2006, but trust me, I was in this trial originally, controlled by John Wayne Cancer Institute, participating in it through my oncologist in Buffalo NY (Not through Roswell Cancer Institute, although their 2nd opinion also talked of this trial). Fe7T0029T 

I know this is all so confusing, and the jargon new to you and your daughter.    And I know it's extremely frightning.  I was diagnosed at Stage IIIB, two nodes positive.   I did have recurrences, on my breast, several of them.   I am a little older, still I was fearful of not seeing my children graduate college, marry. . .    I saw two marry, all graduate from college, am praying for grandchildren and for my son to marry his girlfriend, soon.   I survived the mastectomy, adjusted, I'm fine, happy and now taking care of my 88 yr old parents!  Some retirement!   But …..  I learned to live with this beast after letting it define me, take over me emotionally, letting it take up my precious time, allowing it to cover my life with worry.   I learned to deal with it.   It's not easy to shove it behind you, but it can be done!   Good luck to you and to your daughter.

CarolA

I entered this trail, back in Feb/March 2005*.    I had two nodes (left axilla/underarm) with detection of very small (don't know the medical terminology micro?macro?) evidence of melanoma detected via SNB.    I opted to enter the trial, rather than go for the total elective lymph node dissection (ELND).   I was monitored, if I recall correctly, almsot every 2 or 3 months via ultrasound to the underarm.   In September, there were two nodes they were monitoring and they were approaching a compromising size (again, don't remember the medical #'s of concern).   I had the ELND in October 2005 and  those two nodes of concern and the rest, had no evidence of melanoma disease!! 

I felt comfortable proceeding on this trial, made confident by my oncologist/surgeon, and felt secure with the u/s monitoring.    I was 57 yrs old at the time.    

The way it was presented to me, 80% of the time, total LND results in finding no more evidence of melanoma in those extra nodes that are removed.   Plus, there is the risk of problems having the LND, range of motion issues, lymphedema (swelling).    I did have extensive physical therapy and have compromised range of motion (not debilitating) and I do have some lymphedema, again not compromising to my lifestyle.  

FIRST, however, your daughter would have to come up with positive lymphnode from the SNB.   Hopefully, this will not happen.   IF SHE does have a positive node…. maybe that's where they want to know "now", but I don't know why…. I thought those nodes (or node) removed from the SNB would go through pathology first, and THEN the decision, IF NECESSARY, for a total LND would be made if the node came back positive with melanoma.   And that surgery would take place at another time.

*I see this trial (which I found under google, via NCT00297895, is now dated Feb 2006, but trust me, I was in this trial originally, controlled by John Wayne Cancer Institute, participating in it through my oncologist in Buffalo NY (Not through Roswell Cancer Institute, although their 2nd opinion also talked of this trial). Fe7T0029T 

I know this is all so confusing, and the jargon new to you and your daughter.    And I know it's extremely frightning.  I was diagnosed at Stage IIIB, two nodes positive.   I did have recurrences, on my breast, several of them.   I am a little older, still I was fearful of not seeing my children graduate college, marry. . .    I saw two marry, all graduate from college, am praying for grandchildren and for my son to marry his girlfriend, soon.   I survived the mastectomy, adjusted, I'm fine, happy and now taking care of my 88 yr old parents!  Some retirement!   But …..  I learned to live with this beast after letting it define me, take over me emotionally, letting it take up my precious time, allowing it to cover my life with worry.   I learned to deal with it.   It's not easy to shove it behind you, but it can be done!   Good luck to you and to your daughter.

CarolA

I entered this trail, back in Feb/March 2005*.    I had two nodes (left axilla/underarm) with detection of very small (don't know the medical terminology micro?macro?) evidence of melanoma detected via SNB.    I opted to enter the trial, rather than go for the total elective lymph node dissection (ELND).   I was monitored, if I recall correctly, almsot every 2 or 3 months via ultrasound to the underarm.   In September, there were two nodes they were monitoring and they were approaching a compromising size (again, don't remember the medical #'s of concern).   I had the ELND in October 2005 and  those two nodes of concern and the rest, had no evidence of melanoma disease!! 

I felt comfortable proceeding on this trial, made confident by my oncologist/surgeon, and felt secure with the u/s monitoring.    I was 57 yrs old at the time.    

The way it was presented to me, 80% of the time, total LND results in finding no more evidence of melanoma in those extra nodes that are removed.   Plus, there is the risk of problems having the LND, range of motion issues, lymphedema (swelling).    I did have extensive physical therapy and have compromised range of motion (not debilitating) and I do have some lymphedema, again not compromising to my lifestyle.  

FIRST, however, your daughter would have to come up with positive lymphnode from the SNB.   Hopefully, this will not happen.   IF SHE does have a positive node…. maybe that's where they want to know "now", but I don't know why…. I thought those nodes (or node) removed from the SNB would go through pathology first, and THEN the decision, IF NECESSARY, for a total LND would be made if the node came back positive with melanoma.   And that surgery would take place at another time.

*I see this trial (which I found under google, via NCT00297895, is now dated Feb 2006, but trust me, I was in this trial originally, controlled by John Wayne Cancer Institute, participating in it through my oncologist in Buffalo NY (Not through Roswell Cancer Institute, although their 2nd opinion also talked of this trial). Fe7T0029T 

I know this is all so confusing, and the jargon new to you and your daughter.    And I know it's extremely frightning.  I was diagnosed at Stage IIIB, two nodes positive.   I did have recurrences, on my breast, several of them.   I am a little older, still I was fearful of not seeing my children graduate college, marry. . .    I saw two marry, all graduate from college, am praying for grandchildren and for my son to marry his girlfriend, soon.   I survived the mastectomy, adjusted, I'm fine, happy and now taking care of my 88 yr old parents!  Some retirement!   But …..  I learned to live with this beast after letting it define me, take over me emotionally, letting it take up my precious time, allowing it to cover my life with worry.   I learned to deal with it.   It's not easy to shove it behind you, but it can be done!   Good luck to you and to your daughter.

CarolA