New L1 CAM Patient

Portal Forums Lung/Thoracic Cancer Screening / Prevention New L1 CAM Patient


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April 5, 2015 at 3:01 am  #1269127    


I am so scared.

I was adopted in 1985 and my adoptive mother just came to me with all of this information that my biological mother and my biological sister both have the L1 CAM mutation gene.

My big question is: How likely is it that I have it? A family friend keeps saying its 50/50, but how sure can he be when there is SO LITTLE research on this disorder? He may be right, but I want to hear it from the horse’s mouth.

My other question: has anyone on this forum done IVF to have the “non L1 mutated eggs” fertilized and implanted?

My fiance and I were wanting to have a honeymoon baby.

I have gotten a Dr, referral to get my genetic testing expedited, but the earliest they can take me is June. Luckily, my biological sister is an angel and sent the adoption agency her medical records, so hopefully I will know sooner than most, but that hasn’t stopped me from crying hysterically.

This whole situation has been a double whammy for me, as my birth family has reached out through the adoption agency,

Any words of wisdom are welcome. I am just so sad and so scared.

April 5, 2015 at 8:18 am  #1269129    
JimC Forum Moderator
JimC Forum Moderator

Hi Lizzy,

Welcome to GRACE. I am sorry to hear how this information has caused you such worry.

Unfortunately your question is outside the expertise of the faculty on this site, and you are correct to consult with a genetics expert, who would be best suited to provide answers to your questions. One thought which does come to mind is whether your biological sister shares both parents with you or just your birth mother (in other words, is she a half-sister). That would be important for the genetics expert to know.

Wishing you a good consultation with good news.

Forum moderator

Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then:

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