Imaging Protocols

Posted By
Anonymous
1/13/2014 2:22pm
Activity
Replies: 4

I recently had my 2nd melanoma removed.  The first was in 2009 on my left shoulder, the 2nd on my lower left leg.  After wide exsision, SLN & margins were clear.  My official diagnosis statis is "Stage 1B (T2a NO MO) 

I wanted to find out what the standard protocol is for both imaging tests (PET, etc.) as well as treatment protocols others are using. 

I fully appreciate that, at this point, I am considered early stage...and I am profoundly thankful for that.  But given that I have now had "2" primaries, I would sleep better if I were given a PET scan or something to put my mind at ease!

Thoughts....experiences???

Janner - (1/13/2014 - 4:24pm)

Scans haven't been shown to improve survival.  As much as they are done, they have limited benefit especially to someone of your stage.  PET scans are not useful until you have a tumor of significant size - they do not catch microscopic disease.  So what happens when a stage IB person is scanned is they either find nothing or they "rule out metastases".  They find some benign beastie that we all have on a scan.  Then you have to have more scans or tests or surgery only to find out it has absolutely nothing to do with melanoma.  This is why they don't scan stage I people.  Your prognosis is good.  In fact, those with multiple primaries actually have a better prognosis than those with a single primary (study out of Australia a while back showed this).  So even if you were to have a PET scan and had microscopic disease at this point (highly unlikely), the PET scan wouldn't pick it up.  A PET scan won't catch additional primaries either.  Unless you have some type of symptoms, it will also be hard to convince your insurance company of any benefit at your stage.  Scans are pricey!

Janner

Stage IB since 1992, 3 MM primaries

triciaches - (1/14/2014 - 9:58am)

Janner-

Thanks for your insight on the imaging concern.  If I may ask, do they check your LDH levels regularly?  If so, (if you don't mind sharing) what are yours?   My November LDH level was 219 with the standard range of 125 - 250 U/L. Since this is on the high side of the range, I am a little concerned.

Don't mean to sound paranoid...but I guess I kinda am! 

Tricia

Tricia Chappell - Chesapeake, VA

Janner - (1/14/2014 - 1:16pm)

No blood work done.  Blood tests are not specific for melanoma and are not always a great indicator even if you are stage IV.  I don't see the point for early stages since the most likely areas of spread are local or the nearest lymph basin both of which won't affect blood work.  One poster here had 70% liver involvement and still normal values.  If your levels are in the range, they are normal.  Doesn't matter where in the range they are since many things can affect them.  Relax and don't  create trouble for yourself!

JerryfromFauq - (1/15/2014 - 2:20pm)

DITTO, to what Janner said.

I'm me, not a statistic. Praying to not be one for years yet.