My Voice: Stories of Colorectal Cancer in North Dakota

Welcome to My Voice: Stories of Colorectal Cancer in North Dakota, where we will share the stories of colorectal cancer (CRC)survivors, caregivers, and others affected by this disease.  CRC is the second-leading cause of cancer death in North Dakota when men and women are combined, yet it can often be prevented or detected at an early stage.  As a local physician, I urge you to please talk with your doctor about getting screened.  You can learn more of colorectal cancer and screening here.

We also hope that you will share your voice in the links below.  Whether you are a survivor, caregiver, or someone who has benefited from screening, it is stories like yours that help raise awareness and also provide comfort to those touched by this disease.

Sincerely,

 

Dr. Fadel Nammour, MD, Gastroenterologist

Chair, North Dakota Colorectal Cancer Roundtable

 

Share Your Story

Have you or someone you love been affected by colorectal cancer? Help us raise awareness in North Dakota by sharing your story. It’s stories like yours that help raise awareness about the importance of screening & prevention, and also provide comfort to others whose lives are touched by this disease.

If you submit a story, remember to upload a signed talent release from.

Lisa’s Story (Milnor, ND)

“It (screening) really is an easy thing and so worth it, especially if they find something that can be treated early. Plus, the ease of mind after you are done is so worth any ‘hassle’ of the prep and testing!”  – Lisa

Lisa, of Milnor, ND, went in for a colonoscopy because she knows that early detection is important. Thankfully, Lisa’s colonoscopy showed that she was healthy and cancer-free. Now she lives with peace of mind and will continue to keep up with her colon cancer screening. While some might feel hesitant to go through with screening, Lisa shares this advice about colon cancer screening: “Get it done. It really is an easy thing and so worth it, especially if they find something that can be treated early. Plus, the ease of mind after you are done is so worth any ‘hassle’ of the prep and testing!” Take Lisa’s advice, and talk to your doctor about getting screened.

Dena’s Story (West Fargo, ND)

““I encourage everyone to not be afraid to talk to your doctor about any issues you are experiencing … Colon cancer is a treatable cancer if caught early.”  – Dena

In 2015, one day before her 24th birthday, Dena of West Fargo learned that she had stage IV colon cancer. “It all started with blood in my stool, which started only occasionally, and I otherwise felt well. Then the blood became every day and came with horrible stomach pains. I knew something was wrong…this was not normal.”

Dena visited her primary care provider with these symptoms multiple times but found that, due to her young age, her symptoms were not taken seriously, and she felt dismissed. “I needed to find my own voice and be my own health advocate,” recalls Dena. She demanded a colonoscopy, which revealed a mass in her sigmoid colon. The mass was malignant and had spread to her liver. Less than a month later, Dena was at Mayo Clinic to have the first step in her journey of treatment, a colon and liver resection. This was followed by 6 months of chemotherapy which she completed in June 2016. Just as her life was getting back to normal, Dena learned that the cancer had returned, this time in her ovary. She went through another surgery and 6 more months of chemotherapy. After going on maintenance chemotherapy for about 6 months, the cancer returned in her remaining ovary. She recently had another surgery, and she and her care team are now determining next steps in her treatment.

Looking back on this experience, Dena wants to remind others to be seen early if they notice any signs of colon cancer. “I encourage everyone to not be afraid to talk to your doctor about any issues you are experiencing … Colon cancer is a treatable cancer if caught early. A colonoscopy can be an intimidating procedure, especially for a young adult, but it can save your life,” says Dena.

Routine screening for colorectal cancer is not recommended until age 50, but it is important to know that if someone younger than 50 is having symptoms, they need to be evaluated. Colorectal cancer might not cause symptoms right away, but if it does, it may cause one or more of these symptoms:

  • A change in bowel habits, such as diarrhea, constipation, or narrowing of the stool that lasts for more than a few days
  • A feeling that you need to have a bowel movement that is not relieved by having one
  • Rectal bleeding with bright red blood
  • Blood in the stool, which may make the stool look dark
  • Cramping or abdominal (belly) pain
  • Weakness and fatigue
  • Unintended weight loss

As Dena says, “Early detection is key to survival.” She adds, “I may never know the meaning of why this happened to me, but I want to make sure everyone, regardless of age and family history, is heard when they have colon cancer-related symptoms and don’t have to go through what I have.”

Laurie’s Story (Rugby, ND)

“It is important to follow guidelines that catch cancer early. Thanks to early detection, my mom is a 12-year colon cancer survivor this year.”  – Laurie

Laurie remembers being surprised when her mom was diagnosed with colon cancer in 2005, but she was also relieved that it had been detected early through screening. “My mom had been getting screenings since she turned 50, so when she was diagnosed I was so thankful that the screenings were able to find the cancer early at a time when it was treatable,” Laurie recalls. Regular screenings, like colonoscopy, help in early detection and treatment of colon cancer. “We are so lucky it was detected early so that my mom is still with us today.”  After 12 cycles of chemotherapy lasting 6 months, Laurie’s mom finished her treatments in January 2007. “It is important to follow guidelines that catch cancers early.  Thanks to early detection, my mom is a 12-year colon cancer survivor this year,” says Laurie. She adds, “Please talk with your doctor about getting screened, and remind your loved ones to do the same.”

Elliott’s Story (Fort Yates, ND)

“Because of early detection, treatment, and aftercare, I am able to spend many more years with my wife, my children, and my grandchildren.”  – Elliott 

When Elliott noticed traces of blood in his stool, he talked to his wife and daughter about what he saw. They all agreed this was not normal, and he decided to go to the Indian Health Service hospital to get a physician’s opinion. “I seen a PA, he informed me immediately that I should have a colonoscopy done. I went to Bismarck for the procedure. I was told by the doctor that they found a large tumor that was cancerous, and he told me to go back to the hospital and the PA would make arrangements for surgery,” he recalls.

Within a week, Elliott returned to Bismarck and went through colon cancer surgery. After the surgery, Elliott went through radiation and chemotherapy for 6 weeks. The treatments were successful, and Elliott is now a 12-year colon cancer survivor. He  now uses his experience to encourage others to get screened for colon cancer, because he knows that early detection helped save his life. “I am so thankful and fortunate that the doctors insisted I receive treatment. Because of early detection, treatment, and after-care, I am able to spend many more years with my wife, my children, and my Grandchildren,” says Elliott.

Watch Elliott’s share his story here: https://youtu.be/9gwTmwu52z4

Deb’s Story (Fargo, ND)

“Today I remain cancer free and faithful to my screenings … Life is too short to let your fears get in the way.” – Deb

Deb’s brother was diagnosed with colon cancer in his 40s. As his caregiver, she can recall her brother’s oncologist saying that she should get screened for colon cancer early because of her family history. Two years later, Deb kept thinking about that recommendation and decided to get screened. She is so thankful that she got screened, because she too had colon cancer. Thanks to early detection, the colon cancer was very treatable. “Today I remain cancer free and faithful to my screenings.” As her friends turn 50, Deb encourages them to get screened for colon cancer. “People find it difficult or embarrassing to talk about or to get the screening. I am glad that it didn’t stop me. Life is too short to let your fears get in the way,” says Deb.

Candace & Todd’s Story (Bismarck, ND)

As a result of testing, but Todd & Candace have peace of mind … They want to encourage others to go ahead and get screened for colorectal cancer. 

Candace had been encouraging her husband to schedule a colonoscopy for some time, even going as far as scheduling “his and her” appointments. However, due to a scheduling conflict the appointment was cancelled. Upon hearing of the take-home stool test she encouraged him to call his Dr. and see if it could be arranged. Both Todd and Candace were candidates for the test. Todd’s test came back with trace of blood and Candace’s came back clear. A colonoscopy was scheduled for Todd and the results came back clear. As a result of the testing, both Todd and Candace have peace of mind and are not hesitant to complete their next tests as indicated. They want to encourage others to go ahead and get screened for colorectal cancer.

Lisa’s Story (Valley City, ND)

“Prevention is so very important, and screenings are a part of that. I want to use my losses to encourage as many people as possible to take advantage of the medicine that is out there so we can all be around many, many years from now.”    – Lisa 

Lisa of Valley City, ND, lost her mom to colon cancer that was found too late for effective treatment. After caring for her mom both emotionally and physically, Lisa is very passionate about cancer prevention and screening. She says, “I am also a Registered Nurse and understand the importance of screening, so I got my first colonoscopy this past year. I would love to allay people’s fears and stress the importance of screening and preventive care.”

When she was told that her mom had stage 4 colon cancer, Lisa told herself, “You have a year … make it count.” She chose to set aside a lot of her emotions at the time and instead focused on making sure her mom got to go on the Norway trip of her dreams, while also helping her family navigate the medical world. Later, Lisa would have to cope with the emotions of losing her mom. “You don’t realize how important that unconditional mother-love is until you know you are going to lost it,” she recalls.

Lisa’s family has been hit hard by cancer. “I have lost my grandparents to cancer. I lost my Mom to cancer. My father is currently living with cancer, and my step-mother is a cancer survivor. Many, many other relatives have dealt with cancer of different types,” she reflects. “I want to be around for my kids and, some day, my grandkids. I want the years that my Mom didn’t have.”

Lisa is using her experience to encourage others to complete their cancer screenings. “Prevention is so very important, and screenings are a part of that. I want to use my losses to encourage as many people as possible to take advantage of the medicine that is out there so we can all be around many, many years from now.”

Kristy’s Story (Minot, ND)

“If you suspect something isn’t right with your health, see a medical doctor. Be proactive. Make the time. Take the steps needed to take care of you.”

After a year of struggling to manage an anemia diagnosis, Kristy noticed streaks of blood in her stool. She went to see her nurse practitioner, who referred her for a colonoscopy. On Good Friday, at the age of 35, Kristy was diagnosed with colon cancer. Recalling that time in her life, Kristy says, “Like most, if not all people diagnosed with cancer, I was terrified! Never did I imagine that this was going to be the outcome! I have a beautiful daughter, an amazing fiancee, a wedding to plan, and a career. I did not have time for cancer!”

Soon, she was sent to Mayo Clinic and had surgery to remove the diseased part of the colon. After surgery, Kristy learned that she would also need to undergo chemotherapy. She soon returned home from Rochester and began chemotherapy back in Minot. About halfway through her chemotherapy treatments, a complication made things even tougher for Kristy. Still, she made it through all of her treatments.

Kristy reflects on this time: “I finally reached the end of the chemotherapy journey. Seemed like this day would never come, but it did and I survived! Since then, I have had routine PET or CT scans to make sure the cancer has not returned. I am proud to say that my scans, to date have been free and clear of any signs of cancer. In April of this year, it will be 5 years since my diagnosis.”

Since her diagnosis, Kristy has married her fiancée (who stood by her throughout treatment). Kristy shares, “We not only have the daughter, who loved me endlessly throughout the cancer process, but we now have a 2 year old daughter and another one on the way. Life does go on! If you suspect something isn’t right with your health, see a medical doctor. Be proactive. Make the time. Take the steps needed to take care of you.”

Amanda’s Story (Fargo, ND)

“It may be tough or seem embarrassing to talk to your family about colorectal cancer screening, but encouraging a loved one to get screened could save their life! If you could prevent cancer, would you? A colonoscopy can prevent cancer!”

After struggling with symptoms for years (symptoms I now know are symptoms of colorectal cancer), I finally went to my doctor and asked to have a colonoscopy. I knew some of my symptoms could be colorectal cancer but always had an excuse to dismiss them. In the summer of 2013, I could no longer ignore what was going on with my body. I was fatigued, constipated to the point of extreme pain and when I did have to have a bowel movement there was an urgency to go. And blood, blood with every bowel movement and sometimes even when I just passed gas. Too much information for you? Well everyone poops, and I’m sharing my story honestly in hopes that if someone who reads this is experiencing the same things, they will speak with their doctor.

At age 34, I went in for my first colonoscopy, I awoke after that scope to learn that there was in fact a tumor in my colon. At age 34 with no family history at the time I was diagnosed with colon cancer. I was quickly sent for a CT scan to see if there was evidence of cancer else where in my body. The results of that scan were good, and it appeared the cancer was only in my colon. My first step in my treatment would be surgery to remove the cancer. I was scheduled for a colon resection where a surgeon removed about 10 inches of my colon to remove my cancer. My surgery was uneventful, and I recovered very quickly. There was a large sampling of lymph nodes removed, and testing showed they were all negative of cancer. This put me at stage 2 cancer and required no further steps to treat my cancer. That means no chemo! All my cancer had successfully been removed with that operation. Everything happened so fast, I went from diagnosis to being cancer free in a matter of weeks.

Because of my young age, we started to look closely at my family history. Although there was (at the time) no colorectal cancer history in family, there were other cancers. I was sent for genetic counseling and was tested for Lynch Syndrome or HNPCC, a genetic condition that puts individuals at risk for developing colorectal cancer and other cancers. I was positive for Lynch Syndrome. My medical team and I started to look at where I may have inherited this syndrome. I spoke with my parents and learned that my father had been screened twice for colon cancer with colonoscopies and neither test had shown even a polyp. It was also at this time that I learned my mother, who was age 60, had never had a colonoscopy (she should have had a screening test at age 50). So, of course we encouraged her to get screened right away. She did, and the results were not good, she too was discovered to have colon cancer.

My mother was scheduled for the same surgery I had just received 3 months earlier. Her results were very similar to mine, cancer removed and no lymph nodes were positive. WOW! We were elated and relieved at her good news! Fast forward 3 months and my mother did not receive good news at her follow up scan; there were spots on her liver. She was re-diagnosed with Stage 4 colon cancer. My mom fought courageously, and today she has no evidence of disease. She had a great outcome, but to see her go through multiple surgeries and chemo treatments has been tough, especially knowing that if she had been screened at age 50 her cancer could have been caught at a much earlier stage or even prevented!

We have both since learned so much about colorectal cancer and our genetic disorder. We know the importance of knowing your family history and on time screening for colorectal cancer. We encourage everyone to speak with their family members about colorectal cancer screening and to know the results of those screenings. If there is a family history of cancer or polyps, please speak with your doctor about when colorectal cancer screening is right for you, it may be before age 50! It may be tough or seem embarrassing to talk to your family about colorectal cancer screening, but encouraging a loved one to get screened could save their life! If you could prevent cancer, would you? A colonoscopy can prevent cancer!