Terry

Age at interview: 61
Outline:

Terry’s family has a strong history of cancer— in his grandfather, mother, uncles and aunts, cousins, and siblings. Several family members were diagnosed with Lynch syndrome but because of busy work obligations, he did not make time to get tested until a few years later. Prior to diagnosis, he received colonoscopies regularly every three-five years. Because of the recommendation for yearly colonoscopies for those with Lynch, he received one sooner, and colon cancer was found. He found it helpful to talk to family members who had survived colon cancer about their experiences. He had 80% of his colon removed laparoscopically and did not need chemotherapy or radiation.

Background:

Terry is a 61-year old White male and lives with his wife and dog in a house they had built in a rural area in the Midwest. He has 3 adult children. He is a retired executive.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Lynch syndrome

See full story

Given their strong family history of cancer, a sibling recommended that the family all receive genetic testing. While some were positive for Lynch syndrome, others were not, which allowed Terry to hope that he would not have it. Because of his busy working life, he did not make time for testing for ~10 years. He was receiving regular colonoscopies and every 5 years from ages 30-50, and then every three years until his diagnosis with Lynch syndrome at age 59. He reports the worst thing about a colonoscopy is the prep – its unpleasant taste and spending the time in the bathroom. The procedure itself is “not a big deal,” taking only a couple of hours and not causing any pain.

After deciding to get genetic testing, Terry and his wife had to work with the insurance company in order to get it covered. This involved paperwork, a series of telephone calls, and providing details about the rationale for testing and family history. From testing, Terry learned he had a variant of Lynch syndrome that put him at increased risk for stomach, colon and prostate cancer. It was recommended that he receive colonoscopies every year. Even though his colonoscopy three years earlier was normal, the colonoscopy he had after diagnosis revealed colon cancer. He says getting genetic testing and a colonoscopy sooner “saved his life.”

Although hearing he had cancer was frightening, Terry was able to talk to his family members who had already experienced cancer. They helpfully explained, “This is what happens. This is what you need to do.” A sibling also suggested that he find a surgeon who had experience. This surgeon was great because he explained “the details of what was going to happen, what could happen, the worst case and best-case scenario.” Surgery was done laparoscopically and Terry was in the hospital for five days. Afterwards he lost his appetite without clear explanation. He lost a lot of weight because he wasn’t eating or drinking. Eventually, he was hospitalized for dehydration. His appetite gradually improved over time. He recently was diagnosed with prostate cancer, noted because of a high PSA level.

Terry advise those in a similar situation to “definitely get the testing done, and then follow the advice that they give you, as far as what you should do after if you come up positive or not.” He also has found it helpful to not keep things inside and to talk to others for support. He says “So the more you're able to talk to family, friends, your doctor, you are able to get an ease of, well, maybe this isn't that big of a deal. It's still a big deal, but try and get it out.”

 

Terry knew several of his family members have Lynch syndrome but did not undergo genetic testing until after his own cancer was diagnosed.

Terry knew several of his family members have Lynch syndrome but did not undergo genetic testing until after his own cancer was diagnosed.

SHOW TEXT VERSION
PRINT TRANSCRIPT

Well, with my job, I did a lot of moving around. And you know, I just really didn't make the time to go get the testing. The testing is real simple. I just didn't come up with the time. And I would definitely encourage getting that testing done, because it changes a lot. And without having colonoscopies more routinely, you know - it could be pretty bad if your cancer-- because there's no symptoms.

Mm-hmm.

You don't feel any different. It's all of a sudden, wham, your doctor's telling you, you got cancer and you had no idea. So the Lynch syndrome, if I would have known 10 years ago or 15 years ago, I would have done probably more of the colonoscopies, more of the testing, just to make sure I catch it early enough. You know I was fortunate, they did catch it early enough. But it spread quite a bit, and quickly, within a year-and-a-half. It went from everything is fine to we gotta do surgery.

 

Being diagnosed with Lynch syndrome messed with Terry’s life for just a few weeks.

Being diagnosed with Lynch syndrome messed with Terry’s life for just a few weeks.

SHOW TEXT VERSION
PRINT TRANSCRIPT

It might mess with your life for a few weeks, but better that than forever. As far as the downside, you know I guess it's a bummer to hear that you have Lynch syndrome and your odds of cancer is even greater. But again, on the flip side, because I know that, it helped me and helps my doctors to determine what kind of test I should get or how often I should get it.

 

Terry describes trying to get his insurer to pay for screening.

Terry describes trying to get his insurer to pay for screening.

SHOW TEXT VERSION
PRINT TRANSCRIPT

It's just calling them, and they needed as much information as they can. Why did you need this testing done? And your family history. And they needed some background in order to make their decision, “are we going to pay for it or not, or did this guy just decide to do a bunch of testing?” And once we were able to get it approved, it wasn't that big of a deal.
---
And I'm not trying to say insurance companies are bad. They have reasons, they're trying to keep their costs down. But on the other hand, sometimes you wonder, really?
---
But I was surprised that, for whatever reason, they fought paying for this testing. But part of it might have been the lack of knowledge. You know, the more I told them why I needed this testing done, in the long run, it saves their expenses, too, colonoscopy versus surgery, so.

 

Terry advises others to talk about fears instead of keeping them inside.

Terry advises others to talk about fears instead of keeping them inside.

SHOW TEXT VERSION
PRINT TRANSCRIPT

I'll definitely talk about it. And I've talked to other people that maybe this is their first colonoscopy. And I've had plenty of them and you know, talk them through that. Again, the first time, for a lot of people, they're scared of the unknown factors out there. So the more you're able to talk to family, friends, your doctor, you are able to get an ease of, well, maybe this isn't that big of a deal. It's still a big deal but try and get it out. The worst thing you can do is just keep it inside and driving you crazy. And that's easy advice, because personally, I internalize a lot of things. But the more I am able to talk to other people, the more at ease I am thinking, “well, this isn't that big of a deal and it's going to be OK.”