7 year old with melanoma. No scans. Can I relax or should I request them?

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7/10/2014 12:08pm
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My 7 year old daughter was diagnosed with Melanoma about 2 months ago.  It was a T1b.  She had a wide excision and a SLNB with 4 nodes removed.  They all came back clean.  So now the protocol is just to go in for skin checks every six months.  No scans.

But I am worried there might be something inside her that we don't know about.  I know it is a good sign that the nodes were clear, but I keep reading here about people who had no signs until a metastisis was later found in a remote area.

Should I ask for an MRI to check lungs / brain? (I don't want CT for her -- too much radiation at that tender age).  It isn't called for given the size of the tumor and the clear SLNB, but I feel helpless wondering if there is something growing that we don't know about.   

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

Your anxiety is completely understandable, but the standard of care in this situation is the regular skin checks. The fact that the nodes were negative is a good sign. The T1b staging indicates ulceration or mitotoc rate over 1. Do you know which of those apply, or both?  

Pediatric melanoma is relatively rare, but is increasing in incidence. The MRF has volunteers who are very plugged in a network of families dealing with exactly this kind of issue. We are holding a summit in September for those families. If you want to be connected to that group or learn more about the summit feel free to contact me offline.

Tim--MRF

tturnham@melanoma.org

 

 

Thank you so much Tim!  I have sent you an email separately.  I have had litle luck finding pediactric melanoma support groups or information, so connecting with others would be fantastic.

In answer to your question re: T1b.  It was the mitotic rate: equal to 1. The tumor itself had a breslow depth of .47 mm.  Clark level III .  Brisk tumor infiltrating lympocyte was present.   It was in the center of her back so the lymph drained to both sides.  nodes removed from each armpit (1 on one side, and 3 on the other).

7 year old daughter recently diagnosed with melanoma. T1b.  SLNB results clear. 

The problem with scans at this point is that, even if there were melanoma cells, the scans wouldn't catch them.  There has to be a tumor of a certain size before it's even visible on a scan.  Remember, on the internet you will be reading worst case scenarios, not best.  I've had two stage 1b primaries both deeper than your daughters and no recurrence.  Most stage 1b indivuals don't hang around to post their five or ten or 22 year success stories (me).  Reading the internet at this point will do nothing for your daughter, just cause YOU more anxiety.  

Please email me at janrguard-mpip@yahoo.com so I can put you in touch with a group of pediatric melanoma parents.