Barry
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Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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Barry was diagnosed with prostate cancer in 2014. He had surgery, and radiation. His doctors at the time told him “things, but didn’t tell... everything... [like] what other procedures could I have went through.” Barry takes very good care of himself, particularly by exercising twice a day, which he finds “very rewarding.”
Cancer has had a big impact on Barry’s family. People both in his parents’ generation, and in his own generation, have had a variety of cancers including stomach, prostate, and perhaps colon. In 2018, Barry’s doctors recommended testing to find out “about my different cells,” and to see if his own cancer is hereditary. Barry described that part way through the testing, there was an issue with his insurance company, who said they were not going to pay for the testing. Initially they had approved it, but then said they considered it experimental. Barry says this situation was “kind of confusing,” but that perhaps not knowing what the test says was “meant to be.”
Although Barry doesn’t know about his genetic test results, his team of doctors has recommended he regard himself as at increased risk and that he now get colonoscopies every year. He intends to follow through on this recommendation. He thinks about this as “just one more test you have to go through” amidst a lot of doctor appointments he has related to – among other things – issues with his back and hip as well as the earlier cancer he had. He has talked with his sister a little bit about cancer in the family, but other health issues various family members are “kind of going through” have been a bigger focus.
Barry takes great comfort in his relationship with the Lord above, who he says is “the only counselor I’ve really been talking to.” Although he hasn’t talked about his cancer with many of the people in his life, he is grateful for the kindness and support he has had from those he did tell. Since his cancer, he tries to “take one day at a time, just stay strong, stay positive,” and remember that “it could’ve been worse... I could be gone, not here.” He has a poem about cancer he reads every day – a meditation on all the parts of a person cancer cannot touch: memory, peace, confidence, love, hope. It ends with the line “Our greatest enemy is not disease, but despair” – an idea which Barry lives by and holds close to his own heart.
Barry’s troubles with insurance coverage lead to confusion about his testing.
Barry’s troubles with insurance coverage lead to confusion about his testing.
It was to find out-- my doctor said to find out about my different cells, making sure, you know, I guess it was hereditary or something, making sure that none of the family members-- I don't know how they could tell. But, you know, but I guess it's almost like doing experimentation.
Right.
Yeah.
But you haven't gotten the results from that yet?
But it wasn't-- because I didn’t finish the test. [INAUDIBLE] three times. but only did I-- not even once in the machine. And the insurance company wasn't going to pay for it no more after that. You know, they said we're not going to pay for experimental. And they wasn't too happy, my insurance company, you know, because they feel these doctors are just doing experimentation.
Hm, and that they don't need this information?
Yeah, yeah, uh-uh.
And this test was--
But they approved but then they-- when they found out I guess that after it didn't really affect me or anything, they said no, we’re not-- you can't do it unless you got to pay for it on your own. You know. And that's, who has-- who knows how much it would cost.
What do you mean when they found out it wouldn't affect you?
They found out that it was experimentation. Like, you know--
Uh-huh, yeah.
So I-- because I told them before, before I do it, I said “well, if the insurance company approve it, then I’ll take the test. I'll do it. But if they don't approve it, then I can't do it.”
Right.
So they approved it. But then after about a week after this, I get another note from the insurance people saying, “we're not going to do this anymore. We're not approving anymore.”
Hm.
It was kind of confusing to me, you know. But maybe it just wasn't meant to be.
Barry doesn’t feel like his primary care doctor told him everything he wanted to know.
Barry doesn’t feel like his primary care doctor told him everything he wanted to know.
I don't want to say that my—that my primary doctor— you know, he told me things. But he didn't tell me everything I don't think for some reason. Just like my primary doctor was also dealing with my workers Comp doctors. You know.
Right, so you had--
So I had--
--a few different directions.
Directions, you know.
Yeah, yeah.
You know--
But when you said he didn't tell you everything, were there things you wished he had told you that he didn't tell you?
Yeah, mm-hmm.
Like what?
Well I think I would appreciate rather not, well, first, if I really needed it done or what other procedures could I have went through if they could’ve been. You know.
Barry refused to leave the hospital too soon after surgery.
Barry refused to leave the hospital too soon after surgery.
When I was in the hospital, they wanted to discharge me. But I—I demanded—I said “I'm not ready to go home.”
Barry says it’s important to be positive and let people know that you are there for them.
Barry says it’s important to be positive and let people know that you are there for them.
Well, I would just say, you know, you know, continue to treat them the same way and—and to be positive. You know. You know, don't—don’t feel sorry for them. You know. Just, you know, make sure their spirit is up. You know. And if you see somebody, you know, if somebody doesn't want to talk about something, you know, just let them know that they might not want to talk now, but you'll be there for them. You know.