Genetics testing might save my life. But it did have me crying on the kitchen floor first. 

My first foray into genetic testing was about six years ago. My mother underwent genetic cancer testing and was told she had a hereditary genetic mutation that made her more likely to get breast cancer, colon cancer and a few others. She then told me this and told me to get tested. 

I promptly ignored her. 

It’s a reaction many cancer survivors have. We outrun the cancer and try to put it in the rearview mirror. It’s particularly easy to ignore genetics if no one discussed it with you at the time of your treatment. We figure, if it was important, someone in oncology would have said something then. 

Fast forward to this Fall and I was spending most of my time talking to genetic counselors, specialists and scientists for Chapter 6 of my book. I mentioned what I was learning to my mom and she brought up the results again. 

“Oh crap, I need to do that,” I said to her. 

And so I did. 

Suffice to say, the past eight weeks have been nothing like I’ve experienced before. My genetic results were scary – pointing to a higher likelihood of colon cancer. A gastroenterologist said I’d need a colonoscopy as soon as possible. The earliest they could fit me in was in about three months. 

About a week after that meeting, however, I got many of the symptoms of colon cancer. At my worst moment, I was crying on the kitchen floor, pooping blood, doubled over with stomach pain, worried about what would happen to me. There were many sleepless nights and a real sense of doom. 

Some of it could be chalked up to my mind playing tricks on me. Some of it couldn’t. 

What helped? Time, advocacy, and my doctors. 

About two weeks after these symptoms emerged, I told my gastroenterologist what was happening to my body. She immediately ordered a CT scan and the colonoscopy was also moved up. 

The colonoscopy was benign. 

The scan was less so as there was deterioration in my lungs and two small neoplasms that concerned doctors. For the fourth time in a decade, a doctor told me I would need a biopsy to rule out cancer. 

I have since had a bronchoscopy, which luckily ruled out cancer, and am now discussing treatment options with my doctors for the lung issues that are likely related to an autoimmune disorder. 

In many ways, this was quick good news. It happened quickly because I spoke up about my symptoms instead of waiting them out and because I have doctors who listen. But I’m still not quite right and slowly trying to make sense of how quickly things went so sideways so fast. 

Despite the terror, my reporting points to a fact: It does seem wise for just about anyone who has had cancer to get genetic testing. 

Doctors are finding breast cancer, colon cancer and dozens of other cancers earlier than ever because of these kinds of blood tests. Genetic testing tells them to screen earlier and then they do. Or, you make lifestyle changes to lower your likelihood of cancer. 

While genetics aren’t the only reason you get cancer – they simply play a role, along with your lifestyle, health, eating habits, and several other factors – genetic testing has come so far that the science can’t be ignored, particularly if you are a cancer survivor. You are MORE likely to get cancer again.

And genetic testing is more open than it’s ever been, thanks to a Supreme Court ruling about a decade ago. It is also being covered by insurance and hospitals more often, with costs falling for out of pocket testing as well. Many labs charged about $250 today.  

“If someone had cancer and they come in now, I will usually recommend genetic testing,” says Whitney Maxwell, director of Huntsman Cancer Institute at University of Utah's Inherited Cancer Research Shared Resource and clinical genetic counselor in the Family Cancer Assessment Clinic. “Particularly because there is so much more we know about genes causing multiple cancers. If someone already had breast cancer and then they also have an ovarian cancer risk, we can do some things to help prevent that.” 

The answer to my internal terror is to handle it better mentally, not to ignore the test. 

This is information that can not only save my life, but those of my children and other family members. 

For many, these results may be the difference between having a family and not. If there is a higher likelihood you might need to have your ovaries or testicles removed early, you know earlier and can take fertility precautions. A few weeks of pain and sleeplessness feels like a small price to pay with so much at stake. 

I polled ten genetic counselors to ask them where to get a genetic test. Only two answers came up repeatedly: Your doctor’s office and Color Health.

The benefits of Color Health is the cost and simplicity. There is also a chance that a hospital or insurance company can’t use the information against you as you are the only one with access to the results.

That said, a hospital or doctor’s office remains the gold standard given the labs they use will be board certified and comprehensive.

For most of this year, Business Insider has been detailing the ongoing young cancer crisis in America. If you only read one of the articles, read this one. It floored me.

But if you are reading this newsletter because the issue of rising colon cancer rates resonated with you, read this one.

So many of us cancer survivors blame ourselves after we are diagnosed. We spend years wondering about the foods we ate and the decisions we made. We search and search for the reason we got cancer. It eats us up inside.

I remember demanding a radon test at my apartment and my parent’s house in the year after I got diagnosed. I also spent way too many hours trying to figure out if we used Roundup and throwing away anything plastic in our kitchen.

Some of that is good. After cancer, you should aim to live healthier with the best available knowledge. But as the BI article lays out, young people with clean diets and healthy lives are getting colon cancer at alarming rates. It’s not likely anything specific you did.