Genetic testing

I gave my family history at the City of Hope when i was diagnosed with breast cancer. They asked if i would like to have a genetic test with my blood. Honestly, I was a platelet donor at the Red Cross for 25 years and i figured they knew a lot about my blood. Why not have City of Hope get to the next level. I ended up with Brca2 which changed my treatment plan. I also have another variant that at this time does not have an illness associated. It was free for me at this cancer research hospital. I have been told there are low-cost options. My 2 siblings could have been tested for free. Two went to other places and 2 i do not think got tested. The two tested carry the Brca2. My vote will always be to get it.
I googled it and it says it will under conditions. Does the doctor deem it medically necessary?

My Medicare advantage paid for it. But I wasn’t sure if they would so I looked up the company that the cancer center was using, Invitae. At that time, Invitae had a program to subsidize the cost of genetic testing and the most I’d have to pay was something like $150. So I said to go ahead. With a sister with breast cancer and a history of other concerning cancers on my fathers side I thought I’d sleep better at night if I had the results. I only had to pay a co-pay for the blood draw, nothing else.

MD Anderson and Memorial Sloan Kettering Cancer center both use Invitae (at least they were in 2022). It looks like Invitae and Labcorp are now working together, from the logos on the Invitae website.

If you can’t get a straight answer from the insurance company, you might find out which genetic company your doctor is planning on using and contact them. They would almost definitely know whether Medicare would cover it!

I had genetic testing but my surgeon was so sure my test would be negative she was ready to do a lumpectomy without waiting for the delayed results. I insisted on waiting and I have both the BRCA2 and CHEK2 mutations so we changed to double mastectomy. Now she uses me as a case study in her presentations that the results can be surprising. I would recommend everyone have the genetic testing even if it’s not covered and you have no family history of breast cancer or the mutations. My son did his genetic testing thru color.com because he didn’t have insurance when he reached 35 and he has both of those mutations as well. Currently you can get a whole battery of genetic tests thru color.com for $300. Best of luck to you.

Invitae is used by City of Hope and my sisters NY hospital Roswell Park. Labcorp is where i just had a blood test for my return to a primary care doctor. I agree with all who shared. A functional medical dr i listened to does not believe genetic testing is needed. Eating right and other things like sleep, eating healthy and various vitamins are enough. For me, I am sticking with genetics.

Thank you! So much info to digest but I will definitely pursue. Frustrating the hoops to jump through with insurance.

I have traditional Medicare (not Medicare Advantage) and AARP Supplemental (Medigap) insurance. I had two genetic tests: 1) a test of my own genes (by Invitae) and 2) Oncotype DX which tests the cancer's genes. Both tests were completely covered by Medicare & AARP Supplemental--except for $20 copay. The $20 copay is standard with my particular insurance.

I'm not sure what genetic counseling entails, but it wasn't offered to me. Maybe it should have been since there is quite a bit of cancer on both sides of my family. I have two children--I'm wondering if they should be getting the genetic tests and counseling. Does anyone know?

Thanks for your experience re: insurance. I was scheduled for a genetic consult via video and I simply wanted to be sure my insurance covered this thinking this was just the beginning of maybe further testing. So I'm really wanting to ward off expensive testing. I was told the cost of $250 if my insurance refused payment. Which could lead to more costs I imagine. Hopefully I’ll get some clarity soon. Thank you.

@peggydobbs
Was it determined you had genetic mutations?
Because I have the BRCA2 and CHEK2 mutations, that meant my son had a 50% chance of getting each so I was told he should be tested at 35 years old. He was tested and inherited both mutations.

My mom her got tested for BRCA2 right after my diagnosis so we could determine which side of the family it came from and free one side from worry. I didn’t know about CHEK2 until I did additional testing 5 years later with my son. Mom was negative so we knew BRCA2 came from my dad who died young in a car accident. Two of dad’s siblings then tested for BRCA2 and were negative so their children didn’t test. I don’t know which side CHEK2 came from since mom and dad had both passed when that was discovered.

I hope this info helps you decide.

Interesting! So if I undergo genetic testing and do not have the mutations as you mention, does that end the testing? Or are there more testing that would be needed? I have one son; no grandchildren. At age 78 I’m trying to understand if the genetic testing is beneficial for me?

Since you have breast cancer, having mutations may change your treatment plan. It’s an easy test. You also might save your children or grandchildren, but I can tell you if you want to do it for your family not everyone wants to know.

When I found out I had the BRCA2 mutation and recommended other family members be tested, my emails received no response. Even the aunt and uncle that tested didn’t tell me. I found out two years later. Being the messenger wasn’t welcome with open arms.

When my mother reluctantly tested to identify which side of the family had the mutation, she was upset and feared she’d be blamed for any cancer in the family as if having a mutation and passing it on is by choice. She said she had already told everyone the various cancers my brothers and I all had were from my dad’s side of the family. That made me laugh. They were divorced. Luckily for her, she turned out to be right.