In this episode of the @CancerInterviews podcast, we will hear from Robin Centner of Ryland Heights, Kentucky. She learned she has the PMS2 gene, which is one of the genes that causes Lynch Syndrome, a form of colon cancer. She found this out through genetic testing. She was inspired to get tested because her father died of colon cancer at age 52 and her mother passed away from kidney cancer at 49. Robin is what is known as a previvor. Because of genetic testing, she learned of the PMS2 gene and because of its presence, with additional and frequent testing, if she is diagnosed with colon cancer, it will be detected at the earliest possible stage, positioning her for a positive outcome.
When Robin learned that one of her cousins has Stage IV colon cancer, at age 46, she went in for her first-ever colonoscopy. It revealed one polyp, but it was non-cancerous and was removed. Her gastroenterologist asked her to come in for another colonoscopy a year later. This time she saw a different GI specialist who said that second colonoscopy indicated Lynch Syndrome and urged Robin to see a genetic counselor for testing. This was in 2012, when genetic testing was in its infancy and cost more than $1500, a procedure many insurance companies would not cover.
Nonetheless, Robin Centner got the genetic testing, which later led to her immediate family getting it as well. One of her boys, Connor, tested positive for Lynch Syndrome, but because of genetic testing, the Syndrome was detected early.
She says if one’s family history includes colon cancer and/or kidney cancer, genetic testing is an excellent idea, as it positions family members for early detection if cancerous polyps are found. Robin says among the symptoms of colorectal cancer are that of lingering abdominal pain, lingering diarrhea or constipation.
Robin Centner says very simply, “genetic testing saved my life,” and that the same procedure that cost her more than $1500 in 2012, now runs about $300, and that is if it not covered by insurance.
Additional Resources:
Colon Cancer Prevention Project: https://www.coloncancerpreventionproject.org
Transcription
Bruce Morton: By definition, a cancer previvor is a person who takes action to reduce or eliminate a genetic cancer before the cancer develops or is detected in his or her body. That sounds like a mouthful, but on this episode we are going to hear from a previvor, what she has experienced in this area and what she has done about it. She is Robin Centner of Ryland Heights, Kentucky. For your sake, and/or for the sake of a loved one, when she speaks you should listen. So, here she is, and Robin, welcome to Cancer Interviews.
Robin Centner: Bruce, thanks for having me. I am so glad to be here.
BM: Robin, before we get started, we would like to learn more about you and your life exclusive of cancer. If you would, tell us about where you are from, what you have done for work, and what you like to do when it is time for fun.
RC: As you mentioned, I am in Ryland Heights, Kentucky. I was born in nearby Covington. As we say in Ryland, we are centrally located. We are 30 minutes from everywhere. My dad was one of 19 children, and I am one of 64 cousins and 88 second cousins, so we have quite a large family on my dad’s family. On my mom’s family, not so much. When my dad passed away when I was 16, I saw how those nurses took care of my dad and that is what made me become a nurse. I got my bachelor’s degree when I was married and had kids. I later went back to school and got my Master’s degree in nursing and nurse midwivery. I did that until 2016 when I was in a severe car accident. It ruined my career, and I was no longer able to practice; but I have found other work to do and that is advocacy work. I go to the statehouse and speak to lawmakers. That led to a relation with the Colon Cancer Prevention Project in Louisville, which is how I met Dr. Whitney Jones. Now I volunteer with the Colon Cancer Prevention Project. We have a lot to do because on my mom’s side, I have the gene for Lynch Syndrome, the PMS2 gene, which is one of the genes that causes Lynch Syndrome. On my dad’s side, you would think that it is much more significant. His side is known as ‘Family X’, which means they know something cancer-related is going on, but they just haven’t found it yet.
BM: Robin, I gave a thumbnail sketch as to what constitutes a previvor. If you would, fill in some blanks and tell us more.
RC: A previvor is someone like me, who has been fortunate enough to find out a genetic condition, which predisposes one to some sort of cancer. So, if you know about it beforehand, you can take steps to mitigate or eliminate your risk of developing cancer.
BM: It sounds like this process begins with genetic testing. For you, tell us how the process began.
RC: My dad had colon cancer at age 51 and died very shortly after he had the cancer at age 52. So, I should have begun screening at age 42. My mom, just a year after my dad passed away, she would have been 49, she had kidney cancer. That is a cancer associated with Lynch Syndrome. As I said, I should have begun cancer screening at age 42, but being a busy midwife, raising three young children, I put it aside. Then I guess I was 45 or 46 maybe, I found out that one of my cousins had Stage IV colon cancer. When I found out, he was already two years into his journey. What I later found out was that he was going through a lot of pain. His treatment was horrible and that led me to go to a GI specialist about getting a colonoscopy. Being a practitioner, I started doing research on my own about Lynch Syndrome because I suspected I probably fit the criteria for it, and I assumed that if the GI specialist thought I fit the criteria for Lynch, that he would say something, but he didn’t. I had my first colonoscopy, but my prep did not work as well as it should have. He did find one polyp, which he did remove, and it was precancerous, and so he had me come back in a year. Well, he had left the practice, so he had me come back and see another GI specialist. This second specialist asked me if anyone had mentioned Lynch Syndrome to me. I said no, but I knew a little bit about it because I researched it on my own. He said, “Well, I’m looking at it,” meaning I had it. He said he wanted me to see a genetic counselor and that he wanted me to get genetic testing. It is a very big decision to make because you may find out that you have something, and you may not want to know that. It is scary, and I get that, but knowledge is power. I did act on it, but sure enough, I came back positive. I called my siblings, and I told them. One of my sisters said to me, “Robin, this is not a good day for you to tell me that I have cancer,” and I told her I didn’t say that. I told her that I have a gene and that she is at risk for having the gene, too, and that she should get tested because it can save her life. Anyway, my siblings did not get tested because at that time when I got tested, it was 2012, and the cost of getting tested was very high. Back then, they would only test for eight genes, and it cost over $1500, and a lot of insurance companies would not cover the cost of the test, which is just ludicrous. They would rather you have cancer and cover the treatment for the cancer than to cover the genetic testing. I just don’t understand it, but that’s the way it was. Two of my nieces got tested because their insurance would cover it, and l and behold, they had`the gene as well. So, that’s how we found out that my sisters had it. The reason we know that is because Lynch Syndrome can be passed down, so you get the gene from having one parent having the abnormal gene, meaning you have a 50-50 chance of that gene being passed down to you. If it is passed down to you, you get the abnormal gene. So, if my nieces were positive, that means they got it from my sister. That’s how we knew that my sisters were positive. We have the PMS2 gene, and out of the genes that cause cancer, if you have Lynch Syndrome, it is the best gene to have because it carries the lowest percentage of risk, lower than other genes.
BM: We’re confident you’ll be able to learn some tips and tools to help you through your cancer journey, but first we’d like to invite you to give us a ‘like,’ leave a comment or review below and share this story with your friends. Kindly click on the Subscribe button below, then click on the bell icon, so you’ll be notified when we release our next cancer interview. And if you or a loved one are facing a cancer diagnosis, please click on the link in the Description and Show Notes below to check out our free guide, “The Top Ten Things I Wish I Knew When I First Got Cancer.” Finally, we want to remind you we are not purveyors of medical advice. If you seek medical advice, please contact a licensed healthcare professional.
Now, Robin, we just want to be clear. After your screening, you were diagnosed as being predisposed toward cancer, but not diagnosed with cancer. Is that correct?
RC: Yes, that’s correct.
BM: And for going through genetic testing, how are you better off?
RC: If I had not undergone genetic testing, my family would not have undergone genetic testing, my children would not have undergone genetic testing, and for Connor, the one that is positive, he would not have gotten early screening. Right now, we are seeing more young people being diagnosed earlier and earlier with colorectal cancer, and so for Connor especially, and for my nieces, had they gone through the genetic testing, they would not have found out that they have an increased risk. That is for me the biggest thing. As for me, I would have been the busy nurse raising kids, and I don’t know if I would have gotten the colonoscopy, and I wouldn’t have gotten the other screening besides the colonoscopies that go along with Lynch Syndrome. Kidney cancer, which my mom had and several of her cousins had as well, I mean, kidney cancer can be deadly. For most people, it is deadly. I feel very fortunate that I have gotten the screening that I have gotten, and that’s what you need to do to keep yourself healthy.
BM: You knew about the cancer history in your family and you’re a nurse practitioner, but there are a number of people out there who are not health care professionals, and they might have this extensive cancer history in their family. In your mind, what should push them toward genetic testing?
RC: Family history is first. One out of 297 people have Lynch Syndrome, and Lynch Syndrome is the number one inherited colon cancer, and other associated cancer gene, and 95 percent of those who have it don’t know they have it. So, knowing your family history is paramount. There are other cancers that go along with this syndrome besides colon cancer. If you have a family member who has had colon cancer, a parent, a
sibling, who has had colon cancer under the age of 50, kidney cancer, endometrial cancer or ovarian cancer, you need to talk to your doctor. If you had colorectal cancer symptoms, abdominal pain that doesn’t go away that lasts a couple weeks, diarrhea that doesn’t go away, constipation that doesn’t go away, rectal bleeding, you need to go see your doctor right away. If they find polyps like I had, adenomatous polyps, serrated sessile polyps, those are the kinds of polyps that are precancerous. Dr. Whitney Jones, who is the founder of the Colon Cancer Prevention Project, he would like anyone who has a polyp of one millimeter, he wishes that people would report that polyp to their family members. I would advise you to alert your provider if your family’s cancer history changes.
BM: You talked about the insurance industry and how for the most part it has not been very friendly regarding coverage of genetic testing, but what about the healthcare industry? Would you say yes or no, that it has dropped the ball by not amplifying the plusses of genetic testing? Could the healthcare industry do a better job?
RC: I think so, Bruce. One of the things we are trying to do at the Colon Cancer Prevention Project is to get the message out about genetic testing. One thing that has been done here in Kentucky, Dr. Jones got through the legislature a bill that has insurance companies pay for genetic testing if the patient meets NCCN guidelines, which are the National Comprehensive Cancer Network guidelines. That is a really, really big deal. If patients think that they meet the criteria, if they have the history of these types of cancers in their family, they can go talk to their doctor, talk about their family history, and if their provider thinks they need genetic counseling, they can determine if you need genetic testing. Then your insurance should not charge you for genetic testing. The good thing is that the price has really come down on the testing and the testing is for more mutations right now, so we have a lot more information at our fingertips than we had when I was tested in 2012. We need to do a better job and what we have done in Kentucky has been really helpful, and usually what gets done here in Kentucky, other states will follow. At the same time, providers need to be aware of what these associated cancers are and need to be looking for the Lynch Syndrome.
BM: Robin, we are going to wrap up now, but I do want to go back to something you mentioned earlier when mentioning Dr. Whitney Jones, and that is the Colon Cancer Prevention Project in Louisville, which has vital information regarding all things colon cancer. If you would, tell us about some of the things it can do.
RC: It was founded by Dr. Jones as a place for advocacy, for education, for support for colon cancer patients, people like me, people who have cancer, people who are survivors. It is based in Louisville and southern Indiana, but of course because of the website, people anywhere can go there for information, they can go there for online support, they can donate, there are educational materials you can download. We have gone to speaking engagements all around the country to amplify the message of what we are doing in Kentucky.
BM: And the Project’s website can be found at https://www.coloncancerpreventionproject.org. Robin, that is going to wrap things up. Robin Centner, Ryland Heights, Kentucky, you have had a great deal of information. This should be thought-provoking for anyone who has a cancer history in their family that genetic testing is a very real and viable resource to get out in front of cancer for one’s self or one’s family. So, Robin, thanks very much for being with us on Cancer Interviews.
RC: Thank you, Bruce. I was glad I was here to join you.
BM: And as we say when we conclude, if you or a loved one are on a cancer journey, you are not alone. There are people like Robin Centner, organizations like the Colon Cancer Prevention Project that are there to help. So, until next time, we’ll see you on down the road.
Additional Resources:
Support Group:
Colon Cancer Prevention Project: https://www.coloncancerpreventionproject.org
Robin’s e-mail: www.rcentner@kickingbutt.org
Show Notes
TITLE: Robin Centner, Colon Cancer Previvor – Ryland Heights, Kentucky, USA
Driven by a family history of cancer and her expertise as a nurse practitioner, Robin Centner was proactive when she learned she carried a gene tied to colon cancer. She called upon a genetic counselor and underwent genetic testing. She says this screening saved her life, as from it she learned the gene is predisposed to colon cancer. Thanks to annual colonoscopies, if she is diagnosed with colon cancer, she will be positioned for early detection, maximizing her chance of survivorship. This is her story of being a colon cancer previvor.
Additional Resources:
Support Group: https://www.coloncancerpreventionproject.org
Robin’s email: rcentner@kickingbutt.org
Time Stamps:
02:10 Robin explains the meaning of the term ‘previvor.’
03:08 What led to her seeking genetic testing.
12:48 Robin is asked how, after her screening, she is better off.
15:19 What should push someone to undergo genetic testing.
19:50 Asked if the healthcare industry could do a better job of educating people about genetic testing
KEYWORDS (tags):
lynch syndrome
genetic testing
previvor
pms2 gene
endometrial cancer
robin centner
colon cancer
genetic counselor
serrated sessile polyp
kidney cancer
bruce morton
adenomatous polyp
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