WWYD...What Would You Do?

Among the many tests I have had and that have been suggested or recommended to me is one called a pan-cancer test.  So…going back to the gene mutation testing I had early on, let me explain my understanding of all this.  (Keep in mind I might be full of crap.) 

In the past few years there has been a lot of research and excitement about tumor mutation testing.  A simple explanation:  Tumors have their own genetic information that is different from our other healthy body cells.  Researchers have found that some tumors have gene mutations, (alterations in the normal sequence of DNA), which make the cells cancerous.  Researchers now know how some gene mutation(s) change a normal cell into a cancerous one…one that grows and divides too fast, doesn’t function as a normal cell, and/or that doesn’t die away properly when it gets too old to function properly.  Researchers have also found what are called “targeted therapies”, which are medications (not chemotherapies) that go right to the tumor mutation and essentially correct the mutation allowing the tumor cell to “act” more like a normal cell should. 

These targeted therapies are pretty cool.  They are one-a-day pills – and for example in my case, if I had had the EGFR mutation that I wanted so badly, the targeted therapy would have helped shrink my lung tumor and the metastatic disease to my liver and bones.  Sounds almost too good to be true, right?  Well…you’re correct.  I understand that targeted therapies, like chemotherapies, don’t work forever.  Much like bacteria that mutate in the face of antibiotics so that the antibiotic is no longer effective, cancer cells change their genetics so the targeted therapy, (or chemo), will no longer retard the growth of the cancer.  Targeted therapies can work for as little as a few months, or their effectiveness can be measured in years.  I don’t think anyone knows yet why some people can benefit from a targeted therapy for many years and others for a much shorter time. 

So far, I’ve had tumor mutation analysis for the most common mutations associated with adenocarcinoma of the lung, but there are a few labs out there that will test my tumor for all known gene mutations by using a newer technology called Next-generation sequencing.  These labs can test for ~280 different mutations, for ~$5,800-6,000 and results take ~3-4 weeks. (Insurance coverage for this testing is “iffy” at best.) The results will tell me about any mutations they find in my tumor, what therapies are available (both FDA approved and not yet FDA approved) and about any therapies that are only available through a clinical trial.  The other piece of information I would learn is if I have a mutation that is resistant to therapy.

So here’s my dilemma:  Do I want to know if I have a tumor-type that doesn’t respond to currently available therapies?  I suppose some folks would want to know that information and then opt for only palliative care – and maybe even skip the chemotherapy.  So far, my team of doctors has advised me to wait on this testing.  One doctor said that I should save any tumor tissue in case I need it in the future for a clinical trial.  The other doctor said to wait because in the oncologist’s community, this testing is controversial since a clear treatment may not be known for many of the mutations that may be found. 

For now…the decision to have this testing is ‘on hold’.  So…WWYD?

(No response is being requested here…it’s just food for thought.  And remember...I might be full of crap.)