Laura Kieger advocates for those with rare cancers | APC gene mutation | naproxen | duodenal

DESCRIPTION

Laura Kieger became an advocate for those with rare cancers when she learned members of her family carried the APC gene mutation.  Her family learned of the mutation after her mother was diagnosed with colorectal cancer.  The combination of her mother’s diagnosis and learned of the mutation resulted in her siblings going in not only for colonoscopies, but also for upper GI endoscopies, which examine the duodenal and periampullary areas.  Whereas at the time of her mother’s diagnosis, treatment consisted of chemotherapy and radiation treatment, today there are options including immunology and anti-inflammatories, such as naproxen to keep the polyp burden down.

How rare is APC gene mutation?  Kieger says perhaps one in 10,000 individuals may have it.  Nonetheless, once her family learned about the mutation, she went in for a colonoscopy at age 13.  Based on that procedure and other colonoscopies going into young adulthood, doctors told Laura it looked like she didn’t carry the gene; but because at that time there was no specific genetic test, so she had to keep going in frequently for more colonoscopies.

Laura Kieger says there are some who are skeptical about genetic testing; but she believes anyone who has been told they would benefit from genetic testing and chooses not to, does so at their peril.  She cites Lynch Syndrome, which can exist in one out of 280 individuals.  If one has family members diagnosed with cancers, but doesn’t have cancer themselves, and avoids genetic testing, they could be walking around with Lynch Syndrome and not know it; but by undergoing genetic testing, one can learn they have Lynch Syndrome or another type of cancer, become what Laura calls a ‘previvor,’ meaning they have an opportunity to get in front of cancer, and with any type of cancer, early detection is so important. 

In Laura’s case, she became a previvor when a doctor told her she didn’t have the gene mutation that beset many members of her family, but thanks to genetic testing, she learned she had a villous adenoma, a pre-cancerous growth in her colon that had to come out along with part of her colon.

Because of the ensuing surgery, Laura Kieger says she can do she can physically do just about anything she could do, pre-surgery.

Additional Resources:

Website: https://www.laurakieger.com

Book: “Summer’s Complaint,” available on Amazon

Twitter: lkiegerauthor

TRANSCRIPT

Bruce Morton: Greetings, and welcome to the Cancer Interviews podcast.  I’m your host, Bruce Morton.  The number of cancers goes well into triple digits.  We are familiar with some of them, but most of us have never heard of the others.  Our guest on this episode is an author and an advocate for those with rare cancers.  She is Laura Kieger of Lino Lakes, Minnesota, and we are going to hear her story, and Laura, welcome to Cancer Interviews.

Laura Kieger: Thank you, Bruce.

BM: We want to start off the way we always do, and that’s to learn more about our guest, which would be you, exclusive of your involvement with cancer.  So, Laura, if you would, tell us about where you are from, what you do for work and when time allows, what you do for fun.

LK: I am a child of the 60s and 70s.  I grew up in the beautiful state of Minnesota and I grew up in a large family, eight kids, I was number six of the eight, and I had kind of a typical upbringing, which lots of snow and skating and tobogganing and all of those wonderful things that happen in Minnesota.  I have three children, am married and outside of writing and advocating, I am a human resources consultant who happened to be really fortunate to work in health care for much of my career.  In my off time, I like to travel, I like writing, I like listening to people’s stories and seeing my kids.  All three of my adult kids live in other states, so I am pretty much a frequent flier these days.

BM: The launching title of our interview, Laura, is your book entitled, “Summer’s Complaint,” which chronicles the life and times of your family and how it was affected by a rare form of cancer.  You’re the one who wrote the book, so tell us a little bit more about it.

LK: The book is kind of an accumulation of things that I have learned about my family’s health history and my own personal experiences.  Someone has referred to it as a “medical memoir,” only I would say less emphasis on the memoir part and more emphasis on the family journey.  This journey was about a hundred years, or several generations of me observing and kinda taking it in, my family’s health history that included many early cancers that could not be explained until mostly the last fifty years, so, I decided in 2015 that it was time for me to cut back on work a little bit and start delving into my family’s history and asking my family questions and verifying dates and pulling it all together in what I think is I would describe as almost a creative non-fiction medical memoir which chronicles what we were going through at a time when science and medicine were diagnosing and treating our particular cancers.

BM: And what type of cancer affected your family?

LK: At first, with my mother’s grandmother, and her own mother and her aunt and her uncle, they just knew it was cancer.  They would call it “bowel cancer,” that’s what they were told that’s what people succumb to.  As time went on, and we learned more about the disease, especially courtesy of the Human Gnome Project, which released all kinds of information globally about these cancers, we discovered that it was more than a colon rectal cancer syndrome, and actually, there were other cancers that our family who had this gene mutation, which by the way is called the APC gene mutation.  We were told that there would be other higher risks to other cancers in the GI tract and then also unfortunately we learned that there were cancers we had to watch out for in terms of the brain, also the thyroid and the stomach, which was part of the GI cancers, but it became a whole system much more far-reaching consequences kind of cancer syndrome from originally the colorectal cancers.

BM: I want to veer off track just a little bit, Laura.  I have a relative who loved gardening and spent a lot of time in the sun.  In the 50s and 60s, there wasn’t a lot of awareness about UV rays, there was no sunblock, just Coppertone and Sea & Ski.  She was eventually diagnosed with skin cancer.  I would like to think if she were today the same age she was when she did all that gardening that she would have more awareness about skin cancer and take the proper precautions.  Getting back on point, do you think if your mother knew as much as about the gene mutation with which she was diagnosed as medicine and science know today, she might have acted on that knowledge?

LK:  If she were alive today, at the time our family’s colorectal surgeon told us we had something running in our family, which was most likely genetic.  Today she would, I think, be amazed at what medical genetics has contributed to our knowledge base, how treatment has changed.  My mother only worried about going in for colonoscopies on a regular basis, whereas my siblings and my nieces and nephews have not only been going in for colonoscopies, but also upper GI endoscopies to take a look at the duodenal and the periampullary area.  Also, the treatments when my mother was alive, it was surgery followed by chemotherapy and radiation.  Now they are looking at treatments like immunology, taking a closer look at the actual tumors that can happen as a result of the polyps becoming cancer and also little things like what does it means to avoid a certain kind of diet and embrace another kind of diet.  They are looking at naproxen or aspirins as anti-inflammatories to keep the polyp burden down, so, I think she would be very happy and amazed at how far we have come, but she would be sad because it took such a toll on our family, and again, for generations going back to the early 1900s.

BM: This brings us to the subject of rare diseases and some of those rare diseases are cancers.  They often get very little attention because they are indeed rare, but that diagnosis is not insignificant to the individual who has been diagnosed, your family a case in point.  There are 7,000 rare diseases, some of them cancers.  Lump them all together and you get a large number.  You had mentioned being an advocate for those with rare diseases.  How do you go about advocating?

LK: That’s a great question.  I put my advocacy work in a couple of buckets that are driven not only by my story and my book, “Summer’s Complaint,” but also just my personal journey and my values and what I find is important to me.  I can advocate when others can’t, and so it starts with just being visible, going to author events and book fairs, talking to people who stop by my table and say they have breast cancer that runs in our family and it’s important to find out that there are other families struggling with this.  I also like to be available to write pieces for journals that are genetics related, I like to talk about my family’s disease because it is considered rare.  Maybe one in 10,000 individuals may have the APC gene mutation, so I do make myself available for interviews, writing, and all those things to talk about, because I have an interesting point back to when I decided to write the book in 2015.  I was shopping for an editor, and I talked to a gentleman that I thought would be a great fit, and remembered him saying to me, “I didn’t know cancer could run in families,” and he was just completely amazed.  When I started telling him, and I showed him our family’s pedigree chart, our family tree, and those that had died younger than fifty of cancer, he was pretty amazed.  So, my journey, my goal to get the book written and become an advocate, kind of became his in a way because he really felt strongly about it.  The other thing I do in terms of awareness and advocacy is it’s important for me to fund people who are working in my field to try to find a cure or better treatments for familial adenoma polyposis, or FAP, and I love contributing to health care workers, especially primary care practitioners, medical students, their continuing education and training around this disorder.  For example, I was so fortunate to talk to the program director of a symposium on GI cancers at MD Anderson, and I funded several RNs to go to that three-day event.  That’s a result of sales from the book.  So, I go both ways on awareness and advocacy and funding for my disease.

BM: Laura, I want to go back to something you had mentioned earlier because you were one of those in your family who did not inherit the gene, however, with all the subsequent doctor visits that you have had to make in sort of a cautionary way that did affect you, and if you would, tell us how that did affect you from a physical perspective?

LK: You know, it is not your average 13-year-old that gets told they need a colonoscopy.  That in itself is just bizarre, and so we unfortunately in the early 70s, the kids that were over a certain age, we kinda got marched through the GI doc’s office and they wanted to check our colons because they felt we would have this syndrome.  So, that was the first colonoscopy, and then I had colonoscopies growing up into my young adulthood and my doctor said it looks like I don’t carry the gene, but at the time it looked there was no specific genetic test, so we all had to keep up with the surveillance, with our colonoscopies.  Those small sacrifices, we saw what our mother was going through, so we did what we were supposed to do.  We were pretty compliant kids, there were eight of us.  Then as I got older and we started learning more about the disease, they also started doing a better job of genetic testing.  So, I eventually got a couple of genetic tests and absolutely one of the huge positives was, I got a chance to sit down with a genetic counselor.  That meant a lot because when I first met the genetic counselor, I was young and I was pretty recently married and I was planning my family, so that was pretty important. 

BM: It sounds like you are a proponent of genetic testing.  I have run into some skeptics on this, but most, when they learn more about genetic testing, they become supporters.

LK: I think I would agree with you on that.  As with just about anything else, once you know, you can’t undo it.  Skeptics might want to live their life in blissfully not knowing, but in our family in particular, especially those that fall under the umbrella of colorectal, I think of another syndrome, Lynch Syndrome, which is much more prevalent in the general population, maybe one in 280 individuals are walking around with what are called mismatch repair genes, and they don’t know they have something going on, but they notice they have family members being diagnosed with cancers, like skin cancer or ovarian cancer at a younger age, and colon cancer.  In my case, knowing is knowledge that helps us with prevention, helps catch things early and it contributes to members of my family being ‘previvors,’ versus survivors, and so, it was what we were dealt with and again, now is my time to talk about it and to encourage others if they think that there is something running in their family and they have noticed young adults and young onset cancers happening in their family, especially their first degree relatives.  To them, I say talk to your doctor and please get a genetic test.  You will be advocating for yourself and for your loved ones.

BM: You mentioned previvors, which is sort of a derivative of the word prevention, and prevention and early detection come from research and without money, there is no research.  You had mentioned funding some RNs going to a symposium, but I am guessing rare cancers might be a tough sell when there is so much competition out there to grab those research dollars.  How difficult is it to get people to fund research for rare cancers especially when the rare cancers have a bit of an identity problem?  They are so rare, many people don’t know they exist.

LK: Unfortunately, I hate to call it a numbers game, but it is affecting fewer people.  In my experience, with the mutation affecting my family over generation, compared to Lynch syndrome, I have noticed an uptick in funding for Lynch syndrome, which I am thrilled about.  I am glad for that because if they are studying Lynch syndrome, it has a cascading effect in terms of funding for other cancers that can be treated in the same way.  They could be looking at a vaccine or immunotherapy, so we all kind of benefit, but I think the hardest part is when a cancer is diagnosed that is so rare that what I have found is almost the families themselves that get out there and raise awareness and raise money to get clinical trials going and that’s become more common.  I think with social media we hear about those rare cancers more often than we would have fifty years ago.  I do what I can, and I advocate, but what I want those families to know about those rare cancers is, we hear you and we understand how hard this is.  You might feel you are all alone, but you are not; hopefully you have good physicians you can trust, that are going to a good medical center that has a good care team and if at any point you feel the team is not listening, you need to look out for yourselves.

BM: Laura, you are an author and with any publishing experience an author has an editor, and editors edit.  As a result, there could be some parts of your rough draft that, using some film industry parlance, end up on the cutting room floor.  In your experience, was there anything of significance in your experience, that didn’t make it into your book?

LK: That’s a great question, and I would like to start off by saying how much it meant to me to have family’s permission because they had to relive some difficult some really difficult times, and there were a few moments where I remember sitting in my car and thinking, “I can’t do this.  I can’t do it.  It’s too painful,” and my editor said, “Yes, you can, and you’re not releasing any information on family members that isn’t already publicly known.”  I kept my opinions on some of the medical guidance one or two of my siblings had been given before they moved on and found other physicians; but I think I did a pretty good job of balancing their concerns over privacy and also what I wanted to write about.  To make it an interesting story, I really wanted to be a story that people found fascinating and to follow our journey.  The other thing I would say that did not get in the book, when was in my early 40s, which is right around the time that some of these cancers crop up or diagnosed in both Lynch syndrome and FAP, I happened to go in for a routine colonoscopy and thinking this would be the last one they will have to do for ten years because they are not finding any polyps.  What happened was my doctor called me and said he wanted me to come to his office.  That’s something that will set you back a little bit.  So, I went into his office with my husband and the doctor said, “This is hard to believe because you don’t have that gene mutation,” and I had not yet taken a genetic test, but, “You have a villous adenoma, a pre-cancerous growth in your colon that has to come out with some of your colon.”  My family was shocked, but this syndrome actually saved my life because if I wasn’t regularly going in for colonoscopies, they would not have found that.  I decided not to include that in the book because I didn’t know why it happened.  Some people might say that’s really bad luck, you know, you don’t have symptoms of that disease, but you still end up with what is called an advanced adenoma, and you know, it irritated me for awhile, but since the book came out, I have found more and more research being published that if you are related to a first-degree relative, a full sibling or a parent or a child that is diagnosed with an early colon cancer, you have a higher chance, unfortunately, of potentially having colon cancer.  Now they are advocating you be very aware of your family history.  In my history, my siblings were handed, not all of them, they given this genetic mutation, which affected the entire family, but also had one rogue polyp that turned into an adenoma that my doctor just happened to find because we too surveillance so seriously.  I am definitely a previvor and a survivor, I could probably fall into a lot of categories, but very blessed and thankful for being able to catch that early.

BM: Anytime we have a guest who is going through a cancer journey, we ask them post-treatment, what they cannot do that they could do, pre-treatment, so we will put that question to you, even though your rogue polyp was diagnosed as pre-cancerous.

LK: Nothing really out of the ordinary.  It was just surgery only because they caught it early enough, so it was just a surgical procedure.  But as I get older, I am more aware that stuff comes with aging.  I have to take care of myself and watch my diet and make sure I don’t catch bad viruses going around.  Working in health care, I am probably more aware of infectious diseases and how masks help or don’t help, so that’s more of the precautions I take versus physical precautions.

BM: We’re going to wrap up now with our guest, Laura Kieger, author of “Summer’s Complaint,” and I am guessing for those diagnosed with rare cancers or friends or loved ones of those diagnosed with rare cancers, your book would resonate in a big way.  With them in mind, they might want to purchase the book.  How can they go about doing so?

LK: They can do so by going on to Amazon, by checking out the book.  It’s got reviews, it’s out there in both paperback and e-book form.  If they are interested in finding out more about the story or they want to contact me, I have a website, www.laurakieger.com, and there is a contact page in which you can send me questions or comments.  It’s entirely confidential.  Again, growing up the way I did and working in health care, I am well aware of people’s concerns about getting on social media and talking about their health, and for good reasons.  I am also on Twitter if anybody wants to follow me.  I am lkiegerauthor on X, formerly Twitter.  I would highly encourage people to read the book.  I think it is a very hopeful family story.

BM: Laura, thank you very much for sharing a wealth of information, the sort of which we have not had on our previous interviews, your talking about your journey and that of your family and how it has been affected by scientific knowledge and in some cases, lack thereof , but the trend is going in a good direction where that’s concerned.  So, again, Laura, thanks for your time and thanks for being on Cancer Interviews.

LK: Thank you for letting me talk about my book and my wonderful family.

BM: Thanks so much, Laura, and again we want to remind you that if you or a loved one is on a cancer journey, you are not alone.  There are people like Laura ready to advocate for you.  So, until next time, we’ll see you on down the road.

Additional Resources:

Website:

www.laurakieger.com

Book:

“Summer’s Complaint,” available on Amazon

Twitter:

lkiegerauthor

SHOW NOTES

TITLE: Laura Kieger, Author/Advocate – Lino Lakes, Minnesota, USA

Laura Kieger’s family found itself in a century-long struggle with a rare genetic cancer syndrome, familial adenomatous polyposis (FAP).  This battle became the subject of a book she wrote, “Summer’s Complaint.”  Through her work as an author, Laura has gone on to become a fierce advocate for those diagnosed with FAP and other rare cancers.  She shares her story with the @CancerInterviews podcast.

Additional Resources:

Website: www.laurakieger.com

Twitter: lkiegerauthor

Book: “Summer’s Complaint,” available of Amazon

Time Stamps:

06:16 Laura said her family’s colorectal surgeon explained the family had a rare form of colorectal cancer.

08:45 Describes how she serves as an advocate for those with rare cancers.

14:23 Laura says she supports genetic testing.

15:45 Suggests you consult with your doctor about whether you would benefit from genetic testing.

21:35 Although Laura wasn’t diagnosed with FAP, a colonoscopy revealed a pre-cancerous growth in her colon, resulting in removal of part of her colon.

KEYWORDS (tags):

colorectal cancer

advanced adenoma

cancer

gene mutation

APC gene mutation

cancer interviews

colonoscopy

Lynch’s syndrome

cancerinterviews.com

inherited cancer syndromes

chemotherapy

bruce morton

radiation treatment

naproxen

familial adenomatous polyposis

endoscopy

duodenal

villous adenoma

periampullary