The Colon Club

I just got off of the phone with my husband's oncologist . . . we are having the DNA sequencing testing done at Yale, and hopefully there will be a clinical trial available . . . I'm really pissed at myself right now because I thought this testing had been done already. My husband sees a local oncologist, but we've been checking his treatment every step of the way with his doc at MSK. Part of me feels like I should have been more vigilant, but I thought we were covering all of our bases. My husband has tried 3 different types of chemo, and he also did radiation to the colon. Is this abnormal to wait this long to do the DNA sequencing test? I feel like this should have already been in place . . . I've been reading up on it, and some sources suggest that this type of testing is done when more standard meds aren't working . . . can anyone chime in here and let me know your thoughts . . . I really appreciate it . . . we have no clear answers right now . . . surgeon thinks we should do radiation to the lymph nodes . . . oncologist isn't sure about radiation and wants to get the sequencing results first . . . we have an appointment at MSK on 9/18, and I'm in panic mode . . . please help.
Thank you all,
jep

I am sorry I don’t have an answer but I didn’t want to read and not respond—just hoping you get answers and can get out of panic mode bc we all know that’s the worst feeling. ((Hugs)).

There are two types of DNA testing: Genomic testing which looks at the DNA of the tumor, so a tumor biopsy is required, and, Genetic testing which is DNA of the person (as in a blood test). Genomic testing can tell you the specific mutation or mutations in the tumor. My mutation is KRAS G12D, either the most common or among the most common mutations in Colorectal Cancer. There are some mutations that are aggressive and I think that it would be good to know that up front. Some mutations may have targeted therapies. Sometimes knowing the mutation tells you that a particular therapy shouldn't work. Sometimes there are genetic factors that would indicate that some targeted therapies may work.

Genomic testing is not standard of care so insurance may not cover it unless the doctor argues for it. I asked my local oncologist for genomic testing and he blew me off. My son's manager offered to do it for me which is why I know what it is.

Thank you Punky, and thank you Mike!
Yes, I have read quite a bit lately (on this forum) about the difference between genetic testing and genomic . . . so we are finally getting the genomic testing done. My husband's only mets that we know of are these 2 para aortic lymph nodes and a very small spot (that has been radiated) very low in the colon (basically his rectum). I am very upset with myself for not pushing for this sooner, but we can't look back now . . . we have to get a healthy tissue sample done at Yale ASAP and get things rolling. I guess there are other more standard types of chemo that we can try as well, so that's good. I'm just happy that the genomic testing will be done and in place if/when an appropriate clinical trial becomes available.

My husband's surgeon (who actually had eyes and hands on the lymph nodes) thinks that radiation is still a viable option, but not everyone on the tumor board agrees with him (but they also weren't in there like he was). I think I need to take some deep breaths and let these consultations at Yale and MSK happen before I totally lose my mind. Thank you all for your knowledge and support . . .
jep

We had our genetic testing all done at MDA and I remember it taking about 4-5 weeks.

Wow, really? I didn't realize that it would take that long . . . thank you for the heads up . . . I will ask my husband's doctors about that.

I asked my son how long it typically takes and he said two to four weeks. If it’s not done on-site, it has to be shipped to a hospital or lab to do it. I should ask my son for more details but I think that lab techs have to prepare the sample, queue it into the sequencing machine, anspd then process the data. I’ve looked at some of the code that processes the genomic data and it takes a long time to run on very powerful computers. Then a pathologist has to review the results and do a write up.

Thank you Mike . . . I wonder if Yale/Smilow does theirs on site (?) . . . again, I will definitely ask the docs when we see them or speak with them.
jep

Many leading oncologists now recommend tumor sequencing to be done at diagnosis. It’s important, but also not all that likely to identify an actionable mutation. I can’t comment on the radiation / lymph node issue. I’d consult with a radiation onc now and get his opinion. I see no benefit in waiting for NGS results before getting a rad oncologist consult.

Thank you pyro70 . . . my mom's friend is an oncologist and he told me the same thing last night . . . "speak to a radiation oncologist" . . . I totally agree with you . . . we can't wait for those results to take action . . .
I appreciate your advice!
jep

jep wrote:I think I need to take some deep breaths and let these consultations at Yale and MSK happen before I totally lose my mind.

Exactly! Very wise advice to yourself! Let the experts pore over all the information. Make sure both locations share their notes and possibly get them involved in a group phone conference if necessary.

Hugs to you!
Juliej