THINGS EVERY CANCER PATIENT SHOULD KNOW

How to Get Your Oncologist to Order NextGen Tumor Sequencing and 8 Common Roadblocks You Can Overcome

Five years ago this month (November 15, 2017), the FDA approved the first comprehensive NextGeneration Sequencing tests for finding actionable genomic aberrations in cancer.

To explain in simpler terms, a small piece of a cancer patient’s tumor (usually from the original biopsy that was taken to diagnose the cancer) is sent to a lab to be analyzed.

By looking at the mutated DNA in the tumor, they can find the exact genes that are involved in causing the cancer.

Knowing this allows oncologists to provide more personalized treatments that are designed to attack the tumor’s weaknesses.

This technology is fairly new, but already leading to massive benefits to patients on and off clinical trials.

Not all oncologists are familiar with NextGeneration Sequencing. Or they may not know what to do with the results once they get them,

However, if a patient gets NextGeneration Sequencing, in about 70% of cases they will match to a novel treatment in a clinical trial.

We help our patients get NextGeneration Tumor sequencing and we can’t believe how hard it can be sometimes.

We wanted to share our approach and how we’ve helped cancer patients overcome common objections.

The Ask

This is what you tell your doctor:

Given the risk for the cancer to return or grow, I would like to request that the archival tumor tissue is sent for genetic analysis with next-gen sequencing.

Handling the Objections

Your doctor might tell you not to worry about it or give you other objections. Here’s how to handle the common ones:

#1 - IF THE DOCTOR SAYS:

Well, if it comes back, we would perform the test then.


YOU SAY:

I understand that it can take weeks to complete. While this happens the only treatment available would be old fashioned standard chemotherapy. This is why I would like to have it done now, so we are ready with answers if it ever comes back or grows.



#2 - IF THE DOCTOR SAYS:

There may be insufficient tumor left to perform the test.


YOU SAY:

Please let's try. The sequencing methods have improved over the last few years, so if there is any tumor remaining, we can send it and try. If not, we can discuss getting another biopsy or ordering a liquid tumor biopsy from my blood.



#3 - IF THE DOCTOR SAYS:

It is expensive to run that test and health insurance may not cover it.


YOU SAY:

I know this testing costs money, but it is important to find out now. If the cancer comes back, it would be considered incurable, and I want to do everything we can now. I believe most insurance plans now pay for this sort of testing, so please let’s try.  



#4 - IF THE DOCTOR SAYS:

We run a smaller panel.  We can start there and see if more is needed.


YOU SAY:

Thank you, but I would like to assess not only the genes that use standard medicines, but also those that may be linked to emerging therapies. Can we start with a Next-Gen Sequencing Panel of 300 or more genes from whichever company you think is best?



#5 - IF THE DOCTOR SAYS:

I would not want to get it now, because if the cancer returns, it may have new mutations or other changes, and we would want to find out about those.


YOU SAY:

Yes, but the new mutations would likely be added to the original ones, so I would like to find out the original ones now so that we can plan a strategy and then find out more later as needed from a fresh biopsy if it ever returns or grows.



#6 - IF THE DOCTOR SAYS:

I don’t think the test is worth getting or will be useful.  I have never had a patient get a test that turned out to be actionable.


YOU SAY:

I understand, but read that many new targeted therapies are now available, so while only 10% of patients had actionable results 5 years ago, that number has increased to over 72% today.



#7 - IF THE DOCTOR SAYS:

Our cancer center offers its own next-gen sequencing.  Is this OK or do you want it from a specific company?


YOU SAY:

Whichever lab or company you think is best, would be also fine with me, as long as I can get a copy of the results.  The most common companies in the US are Foundation Medicine, Caris, and Tempus.



#8 - IF THE DOCTOR SAYS:

We don't have the tumor here to test and you would need to fill out paperwork or contact the original location to get the tumor released for testing.


YOU SAY:

If you provide me with the paperwork, I will sign whatever is needed to get the process started today.



Your persistence will pay off. Get this test any way you can. If you need help getting the test or finding a clinical trial based on the results, we’re here to help.