Hereditary GI Cancer Resources & FAQs

Very broadly, people are referred because their personal and/or family history of cancer may be due to a specific genetic change. This change may be causing them, and relatives, to be at an increased risk to develop certain types of cancer in their lifetime. A genetic counselor will talk to them about their family history and genetic testing in hopes of providing: 

• An answer for their diagnosis of cancer/their family history of cancer 
• More personalized recommendations for cancer screenings 
• Information for their children/other relatives about cancer risk 
• For active cancer dx, may help guide treatment or surgery decisions 

Having genetic counseling does NOT automatically commit them to genetic testing. Our discussion is meant to provide them the information and context they need to make an informed decision about if  they want to proceed with genetic testing. 

Learn more about genetic testing:

• A Guide To Genetic Testing For Hereditary Cancer
• Facing Our Risk of Cancer Empowered - Hereditary Cancer and Genetic Testing
     

The appointment lasts about one hour. In the first 20-30 minutes, the genetic counselor will  collect your family history and draw out a family tree. The last half will involve a discussion  about the risks and benefits of genetic testing. Having the appointment does NOT automatically commit them to genetic testing. Our discussion is meant to provide them patient the information and context they need to make an informed decision about if they want to proceed with genetic  testing. 

If testing is desired after, sample can be collected using a blood draw or saliva sample. 

Pancreatic and ovarian 

• All cases are referred 

Breast cancer 

• Diagnosed before 50 years old
• Strong family history of breast/ovarian/prostate/pancreatic cancer 

Colon cancer 

• Diagnosed before 50 years old
• Strong family history of colon/uterine/other GI cancer 

Rare types of cancer 

• Known genetic mutation in the family (ask them to bring their relative’s genetic testing results)

About an hour, plus an extra 20-30 mins to get blood drawn if testing is desired. 

We have a combination of counselors who have completed their masters in genetic counseling and also MDs who have a specific interest in hereditary cancer syndromes.

After the appointment, if the patient wants to do testing, we will give them a special genetic testing kit  and send them up to the lab on the 6th floor of the Buck Pavillion to get their blood drawn. No fasting required and no concerns about it interfering with vaccines/drugs they're taking. The only concern would be if they had a blood  transfusion recently. If patient says they had a blood transfusion, they will need to wait 28 days from the  transfusion to get tested. We can also do a saliva test if they prefer. Both blood and saliva are equally accurate, but saliva samples need to be submitted very carefully—no eating or drinking (including  water) for an hour before collecting the sample. 

It takes three weeks from when the sample (blood or saliva) is submitted to get results. 

The cost is split into two parts:

1. The cost of the appointment itself: Genetic counseling is usually covered by insurance but will depend on factors such as if  they have met their deductible, what their copays are and their annual out of pocket. To be sure, they can call their insurance provider and provide the CPT code 96040 to find out if they are covered for  genetic counseling. The CPT code for Medicare is G0463. Prior authorization is usually not required for the actual appointment. 
2. The cost of the genetic test: Genetic testing is often covered in full by insurance. Four out of five patients pay <$100. Prior  authorization is required by many insurance companies, but not all. If it is, the lab (either Ambry Genetics or Invitae) will handle the prior authorization for genetic testing. The max out of pocket for testing is $250 if the patient doesn’t meet criteria (not thousands of dollars, like many patients think). The genetic counselors will talk about this with the patient more at the appointment. We cannot provide the CPT code or diagnosis codes for genetic testing.  

There is a small possibility that the genetic testing results could provide information that informs your treatment options. If patients have further questions about this, please refer to genetic counselors for discussion. 

In-person appointment:  

• Blood: can be drawn at the lab on the 6th floor of the Buck Pavillion or during their next short stay visit with their pre-treatment labs 
• Saliva: we will have the patient spit into a tube after they have consented to testing 

Virtual: 

• Blood: they can pick up a kit at the front desk on 2th floor of the Buck Pavillion and go up to get drawn at the lab on the 6th floor or we can coordinate to have the sample drawn during their next short stay visit
• Saliva: a kit from the lab will be mailed to the patient's address (return shipping materials included)