Steve K.

Age at interview: 65
Outline:

Steve K had early stage colon cancer in his early sixties. He has a significant family history of cancer, but tested negative for both Lynch syndrome and BRCA gene mutations. His cancer experience has not had a big influence on his life.

Background:

Steve K is a 65-year old White male, retired from a varied career. He lives with his wife, and sometimes other family members, in the East.

Cancer-Related Experience: Cancer

Type of Inherited Risk: Family history of cancer

 

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Steve K was diagnosed with early stage colon cancer in 2015 after a routine colonoscopy. Steve K appreciated that the surgery “wasn’t that urgent,” and could wait until after he completed some travel for work. His wife provided tremendous support, and recovery from surgery went fairly easily.

A number of Steve K’s family members on both sides have had cancer, but the only cancer in his most immediate family was breast cancer that occurred later in life and was not fatal. Steve K himself “wasn’t expecting to have cancer,” or identifying as someone with a notable family history for cancer, at the time of his diagnosis. After Steve K’s colon cancer diagnosis, however, Steve K’s sibling’s doctor wondered if Steve K had been tested for Lynch syndrome. This led Steve K to investigate, and discover that his pathologist had already tested for Lynch and that the negative result was in an addendum to a report he had received earlier from his doctors. Since Steve K himself tested negative for Lynch syndrome, other family members were not advised to get tested. He and others did go to the genetics clinic afterward, however, and proceed – based on family history – with testing for BRCA gene mutations. Those test results were also negative.

Overall, Steve K says that having colon cancer “didn't change my life that much.” He thinks if the “cancer had been more significant” or he had needed more treatment, his diagnosis would have had a bigger impact. His providers collaborated well with one another, and used MyChart well to facilitate communication and coordination. Steve K has now made a family tree indicating who had cancer and what kind, but because he himself tested negative for both Lynch syndrome and BRCA gene mutation, his kids don’t “really care that much.” Steve K has told them “at this point, there’s no indication you’re going to get it, but there’s no guarantees.”

Steve K hopes studies on genes will continue so, though we “may never know everything,” we can at least “know more.” He encourages others to get regular colonoscopies, because when cancer is caught early (as his was) the “problem [can be] contained.” And he hopes all doctors will be as open and compassionate with patients, and as willing to discuss treatment options and risks, as his team has been.

 

Steve K.’s experience suggests the impact the decision may have on family members.

Steve K.’s experience suggests the impact the decision may have on family members.

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I, you know, told them. I think I had to do it by phone, because they're not all around here. Anyway, I mean, I told them all at the time. I told them that it was going to be because it was really being done as a precaution, so they should not worry. It doesn't mean necessarily they're going to have cancer. You know, no guarantees there, but basically, don't jump to conclusions.

 

Steve K. talks about how important it is for information to be presented compassionately.

Steve K. talks about how important it is for information to be presented compassionately.

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I think that they need to be very open with the patients. They need to be very compassionate. And I think that, you know, when they're talking to the patients, they need to tell them what the options are and what the risks are, before they, the patient, can make an informed decision. And I think the doctors I have are, you know, are like that.