Postby boxhill » Fri Aug 24, 2018 7:38 am
I think that genetic testing can only benefit you and your children/sibs. More information always helps battle the disease and manage risks.
You don't indicate what the initial results were: as stewsbetty pointed out, initial pathology may have tested for KRAS, BRAF, and mutation in the genes associated with Lynch Syndrome. You should know whether your tumor was MSSI-H, MSSI-I, or MSS. You ought to have access to this information.
As a guess, I would think that your initial results indicated that further testing would be advisable. For example, my tumor showed abnormalities associated with dMMR, associated with Lynch. It was important to do further testing of the tumor and of my blood to determine whether this was a somatic mutation--in the tumor only--or germline, meaning I had Lynch, while would have had major implications for me and my son, if he inherited it, and possibly for my sister and four nieces and their children. Happily, it was somatic. The genetic testing DID reveal a germline mutation that carries an increased risk of breast cancer. There is no breast cancer in our family, so maybe it's just me, but I am trying to get my sister, who is very weird about medical things, to get tested, because she has four daughters. If she has it, they need to be tested. If she doesn't, they are probably in the clear.
As to the expense, our potential exposure if insurance denied it was limited to $200. But because of my initial dMMR results insurance immediately approved it. You should ask the genetic counselor about this.
If you don't know the results of the basic tests done with initial pathology--and I am assuming that they are standard of care, but I don't know for sure--look at your pathology report. I was given a copy of mine and also have online access. If you can't find it, ask the genetic counselor.
AFAIK, it is currently illegal to discriminate against an applicant for health insurance on the basis of genetic testing. If the ACA is dismantled, who knows. I would not let that stop me. Your kids can decide what to do in future years. Who knows how medicine will have advanced.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED