I believe that over 93 different gene mutations have been identified to cause or perpetuate myeloma, with 12 in particular being associated with almost all known myelomas, hence the idea that there are 12 subtypes of the disease.
Has anyone had genetic testing? (Outside of clinical trials)
I have had a second cancer since diagnosis, and one that is strongly associated with one particular gene mutation which can, but rarely, causes myeloma. I am keen to have genetic testing as people with myeloma who have this gene have been known to respond to a couple of drugs not usually effective with myeloma. (My hunch is that I have an unusual gene involved as my myeloma presentation is unusual, not involving lytic lesions or infections, but possibly involving autoimmune responses. )
I have been referred to an NHS genetics dept but from reading their referral guide, doubt whether I will qualify for an NHS service as familial cancers, though they could be genetically linked, have occurred in family members over the age of 50.
Has anyone sought private genetic testing, if so, what was your experience?
