Charlene

Age at interview: 54
Outline:

Charlene, age 56, has been sick since childhood. Her constant nausea, vomiting, headaches and nosebleeds were mistakenly attributed to scarlet fever. At about age 15, several polyps were found and surgically removed, but they grew back. At age 50, she was diagnosed with Stage I thyroid cancer, declined treatment, and soon had Stage IV cancer with massive doses of radiation. Four years later, she tested positive for the HHT gene mutation, which explains her (and family members’) symptoms, polyps and thyroid cancer.

Background:

Charlene is a White woman who lives in a small Midwestern city with her husband and dog.

Cancer-Related Experience: Cancer

Type of Inherited Risk: A polyposis syndrome

See full story

Charlene has had a lot of sorrow and a lot of blessings. She’s been sick and in and out of hospitals since she was eight years old. Doctors attributed her constant nausea, vomiting, headaches and nosebleeds to a high fever when she had scarlet fever. Finally, when she was 15, her doctor ordered every possible test. It turned out she had polyps in her colon “the size of two golf balls.” They were surgically removed, but just kept growing back. When she was about 18, a colon cancer specialist removed a large part of her colon, reconstructed her, leaving all but 12 inches of colon, and told her she had “familial polyposis.” As she understands it, the polyps throughout her body burst and caused blood to run out of her nose, into her throat, and everywhere else.

When diagnosed with Stage I thyroid cancer, Charlene’s local endocrinologist said she did not have to do the radiation iodine treatment if she didn't want to. Thinking, “Well, I don't want poison in me if I don't have to,” Charlene declined the treatment. Then seven months later, she felt like a huge “slug.” Her endocrinologist found lymph node involvement and referred her to an academic comprehensive cancer center, about a two-hour drive from home. Upset, Charlene went to her family doctor, who confirmed that she needed to be seen at the academic cancer center. The surgeon there removed about 30 lymph nodes; 22 were cancerous. “It’s Stage IV,” she recalls the surgeon saying, “there's not a surgeon in the world that can get all the tissue out.” Charlene agreed to undergo a really high dose of radiation. She credits her wonderful oncology team for being alive today. Talking with her minister and a counselor has been very helpful.

Tragically, Charlene’s first-born grandson died about four years ago. He had asthma and was constantly out of breath even with multiple medications. Shortly thereafter, Charlene, at the age of 50, learned that the familial polyposis was due to a mutation on the HHT gene, which is also associated with thyroid cancer. Looking back, she wonders if her grandson was positive for an HHT gene mutation. His nose bled all the time and he had other signs. She has urged her family members to get tested themselves—so they and their children can be monitored and treated to manage symptoms and prevent cancers that run through the family tree. Some have been tested and others have not.

Despite all she’s been through, Charlene counts her many blessings. She has a loving dog and a wonderful husband whose family has adopted her as one of their own. After some angry moments after her grandson’s death, Charlene has a deep Christian faith and is thankful that, “He's given me so many chances to stay here on Earth.” She loves life and gets so much joy from helping others and making them smile. She volunteers for a local animal shelter and veterans’ organization. In return, she has so many friends, family, former co-workers and members of the community who have supported her when she w

 

Charlene describes feeling good that her doctor takes time to call her.

Charlene describes feeling good that her doctor takes time to call her.

SHOW TEXT VERSION
PRINT TRANSCRIPT

There's wonderful doctors you know out there. [LOCATION] rocks. I mean, they care. And the concern is amazing. You know, when your doctor calls you personally and talks to you, and it's not like, “Oh, I've got 10 minutes,” you know? No, they can sit there talk to you for 45 minutes, and you can hear the care, the concern in their voice. That means the world to you.

 

Charlene uses her “second chance in life” to give back to others.

Charlene uses her “second chance in life” to give back to others.

SHOW TEXT VERSION
PRINT TRANSCRIPT

And that's why I just keep going. There’s, you know, 12 months of the year. People say because of animals, I love animals so much, I do all these activities with these animals. I do benefits for animals. I do a bowling sweeper for animals and take it to the local veterinarians to help them. And then, I do it for the shelters, Christmas critter party. And right now, I'm working on the veterans. I'm doing a bean bag tournament, and then there's a motorcycle ride for them. So that takes up like the rest the five months. People are so important, you know? A lot of people don't get second chances in life. I feel like I've gotten so many chances of life that I just want to help people.
A lot of gratitude.
I do. You know, and I thank Him every day.
Yeah. Yeah.
For so many chances to see my children and to let me keep seeing my grandchildren grow, because being a grandmother is like the best feeling in the world to me. You know, when you see their babies being born, it's like, thank you.

 

Charlene details her fight to get care at a comprehensive cancer center. 

Charlene details her fight to get care at a comprehensive cancer center. 

SHOW TEXT VERSION
PRINT TRANSCRIPT

So back to [LOCATION], because, you know, we're [comprehensive cancer center]. We're going to help you, and we're not going to stop till we find out. So it's always been specialists with [comprehensive cancer center]. Insurance has always been great, except for, well, my husband went from, I have United Health now. But before, I'm trying to think of the name of the insurance, where they did have [comprehensive cancer center]. And then, all of a sudden, a year later, they were not covering [comprehensive cancer center]. And I said, “Oh,” I just started crying. I said, “What am I going to do without [comprehensive cancer center]?” Because this is not going to happen. So my endocrinologist cancer doctor that I see for the last six years, Dr. [NAME] is wonderful. And she works with everybody on my case with HHT. I told her, and she said, “No, you are going to stay here in [LOCATION].” So she wrote this letter. And then the board at UnitedHealthcare kept it. And they said, “How can you say no to this letter?” So I got to stay at [comprehensive cancer center]. So I was like grandfathered in. So that was a good thing. So then, it switched back to UnitedHealthcare. And I have, her name is [NAME]. She's wonderful. She's a nurse that, because I have so much going on, she calls me once a week or every two weeks to see what's going on. And she sees all the medical that's gone on, and she knows that [comprehensive cancer center] rocks, and she said, you are where you need to be. So she's saying, you know, I don't think we'll ever deny you. They would not deny you from going, because you are where you need to be. And I said, well that's what I need to hear, because I will fight tooth and nail to stay at [LOCATION]. That's where all my doctors are.

 

Charlene notes that when her polyposis syndrome was finally discovered, she needed several surgeries to remove the polyps and, eventually, most of her colon.

Charlene notes that when her polyposis syndrome was finally discovered, she needed several surgeries to remove the polyps and, eventually, most of her colon.

SHOW TEXT VERSION
PRINT TRANSCRIPT

And then when I was 15, I was losing weight, did not have appetite. My mom was taking me to all these specialists, and they could not find nothing wrong, did all these testing, and nothing was showing up. So then, she took me to our family doctor, and he admitted me to the hospital and put me through the wringer with, I think, every test there was and said I had polyps in my colon the size of two golf balls. And he said so we have to do surgery and get them out. So that’s when it started, when I was like 15. And like every six months to eight months, they just kept growing back over and over. And back in that day, there was not modern technology like there is now, where they would just go in there and snip them out. It was like cut and cut and cut. So when I was like 18, 19, I went to a colon cancer specialist. And he took a lot of my colon out, where they just kept growing back. Because he said there’s like cancer cells there. There was a cancerous-- but there was like evidence of cancer cells. So he reconstructed me, and I literally have 12 inches of colon left because he kept chopping and chopping, because it kept growing back, and he told me I had familial polyposis.