I was diagnosed in 2016 at the age of 42. Prior to diagnosis, I was in the best shape of my life, running/hiking daily, and practicing great healthy habits both physically and mentally. I was in utter dismay when a sore shoulder from a hike the previous day landed me in the ER and led to my diagnosis of stage IV colorectal cancer.

I was discouraged to find out locally that my cancer was not able to be surgically removed, only treated with systemic chemo. Locally, I was given grim news of a 6-11 month life span after diagnosis even with chemo that would only be palliative.

I traveled to the Cleveland Clinic in Ohio to seek out a second opinion from leading experts in the field. I was offered genetic screening in addition to germline screening and tumor testing to determine where my cancer was coming from, from a genetic perspective. It was there that I learned all cancer is genetic, some are somatic, and some are hereditary.

I found out through genetic testing that my cancer was, in fact, hereditary and came from a BMPR1A gene defect caused by a hereditary difference from my paternal side. My cancer is caused by Juvenile Polyposis Syndrome, a line under the FAP [familial adenomatous polyposis] umbrella (family) of hereditary cancers. As a result of my diagnosis and through screening done on my family members, we discovered my children all carry the defect. One son had 3 pre-cancerous polyps at age 19, my sister was diagnosed with the defect and was subsequently diagnosed with stage 0 colorectal cancer. Several aunts, uncles, and cousins were also screened, and it was determined they all carry the same hereditary marker. My diagnosis saved the lives of my family members and my children.

I began chemo in 2016 and the result was positive. After 10 rounds of FOLFOXIRI, it was determined that I had significant enough cancer death to go forward with surgical removal of the primary tumor and associated liver metastasis. This was done over a process of 3 intense and difficult surgeries. I also received the HAI [hepatic artery infusion] pump implanted in my abdomen to administer chemotherapy after tumor removal as a method of post-surgery "clean up" of lingering cancer cells.

During this process and the chemo administered through the HAI pump, my liver began to fail and inflammation in the biliary tract became difficult to combat. After 19 surgeries and multiple biliary stents and biliary drains, in October 2017, in the Cleveland Clinic parking lot, I had a liver aneurysm and things became grim yet again. I was rushed back into the clinic and admitted into immediate surgery to fix the aneurysm.

After the surgery, the physicians determined my liver was not going to work and my life was again on the line. The Cleveland Clinic physician team was researching a novel new procedure from Norway involving [liver] transplantation for patients with colon cancer limited to their liver. I was approached with the possibility that this could be an opportunity to extend or maybe save my life. The doctors felt there was no more we could do with my liver and that it wouldn't withstand any more intense chemo.

My surgeons were sure that the transplant would work and asked me to seek out people that might want to donate a part of their organ to me. Much to my surprise, my congregation had 50 people willing to pass along a spare part. Who knew the liver could be split or that people would be ok with giving part of theirs? Jason (my donor) was a friend from church, and he felt he was called to donate his liver. He was the sixth person to be considered by Cleveland and, ultimately, my perfect match.

On April 23, 2018, Jason and I underwent a 14-hour surgery, number 20 for me in 3 years. The surgery was followed by a 6 week stay in Cleveland to make sure all was going well. I became the first person in the U.S. to undergo this type of transplant after being diagnosed with colorectal cancer. Currently, I live in Connecticut and strive to bring more awareness to the disease and the inequity in care and opportunities related to care. I believe that through genetic family history evaluations my children's lives were spared and we can do more to save others' lives.

Through the research of new novel approaches to treatment, I received life-saving opportunities to survive, and these opportunities need to be available to everyone, no matter what. We are fighting for life or death. I believe that we can achieve these goals by offering better access to information to patients as they are being diagnosed and bringing them the information that is necessary to save more lives.

Interview Update, September 2022

How has life been since you last shared your story with GCCA?

Since I became involved in the GCCA Know Your Biomarker campaign, my life has certainly had many new opportunities in the advocacy space. Several highlights are that I have continued to partner with organizations such as GCCA and FightCRC as an ambassador to promote early age education, screening, and diagnosis. Along with my Cleveland Clinic physician team of four, I presented a conversation on transplant opportunities for mCRC patients at GCCA’s annual meeting in 2021. I was honored to be named as a member of the Cleveland Clinic YOCRC (young onset colorectal cancer) patient advisory board. I presented my story of advocacy at the first annual symposium at the Clinic this spring. I have also joined the Pfizer Colorectal Cancer patient/advocacy advisory board. Many opportunities have presented themselves, from podcasts and interviews to many speaking engagements, to tell my story and continue to raise awareness. I was recently asked to speak at the 2023 American Association of Colorectal Surgeons annual scientific meeting. Mike (my husband) and I participated in the Climb for a Cure in Tahoe and the Cologuard Classic in 2021, where the PGA and Exact Science provided yet another opportunity to continue the narrative and make a difference.

I returned to my roots as a member of The Colon Club, and this year, 2022, attended Colon Camp. I currently serve as the social media manager for TCC. Most recently I served as the “Captain” of the National Reunion Tour with The Colon Club, traveling the nation (over 5000 miles) for 20 days to reunite and be together in an effort to continue to raise awareness at a national level. Additionally, I established the Michael Mancini HERO Award and Fund with FightCRC and held the first ever Michael Mancini Invitational Golf tourney to provide an opportunity to raise funds for access equity for patients everywhere to be able to participate in events and be together.

Carole and Mike with their dog on wedding day

In the personal space, life has definitely seen its challenges. After a recurrence of CRC in early 2021 and a year of acute care, drive, and determination, my love, my hero, my best friend, Michael, passed away from CRC. That was not before we both fought like hell to use every morsel of time together to make memories. Michael and I promised each other that we would do all the things that were important and we were married on Feb. 6th 2022 just 1 month before he marched to heaven. We had the mindset through to the finality of Mike’s life that we would take the grip away from cancer by allowing life to flow in and love to flow out. Mike and I remodeled our home and added a new backyard oasis and pizza oven and spent a lot of time together there last summer and fall. We took a lot of trips and visited beautiful places. We even made it back to Ohio for Christmas with my family.

Prior to Mike’s passing we adopted a puppy, INDIANA JONES-Mancini, who is the joy of my world. We spend a lot of time hiking and playing catch! He is my travel buddy and protector, and I am so glad Mike gave in after 3 years of me begging for a puppy. I don’t know what I would do without him!

Carole and her puppy INDIANA JONES-Mancini

In the fall of 2021, after 5 years, I returned to the classroom in a different role as a para-educator in middle school Special Education. In the face of grief that can be overwhelming sometimes, I have been spending personal time traveling and being with friends. I have eaten so many tacos and I have taken up golfing and golf lessons. I will be playing in the Cologuard Classic in 2023 in Mike’s honor, with Jerry Kelly! I have certainly been busy and enjoying celebrating and honoring Mike and living a life of love and celebration of every moment purposefully.

How is your health?

I am fortunate to report my most recent scans continue to show no evidence of metastatic disease. My current protocol is to scan and do blood work every 3 months for my transplant and CRC.  

What challenges have you faced over the past few years?

The most challenging part of my life as I play a dual role as a caregiver and a survivor, is caring for and losing my husband on March 4th, 2022 to the disease. The grief, along with survivor’s guilt, has been the most significant challenge I have navigated through in my entire life, even more so than my own diagnosis and treatment challenges.

Carole and Mike on wedding day

Have you had any further biomarker testing? Have biomarkers been used in your follow-up care to monitor you?

I just recently decided to repeat complete biomarker testing both in tumor and ctDNA as a Guardant test result showed some irregular % of specific biomarkers in my ctDNA that have an unknown relevance. My physician team felt that it was important to relook at things and possibly dig deeper to rule out any considerations that may apply to my diagnosis and treatment plan. I have used biomarker testing throughout my treatment to know we have a deep dive into treatment options and relevant opportunities to continue my positive health track proactively.

Kathy hiking

What advice do you have for anyone who isn’t sure if they’ve had biomarker testing?

If you’re not sure the first step is to ask. If the testing has not been done then I would recommend, without any considerations otherwise and unapologetically, to have the testing done. You must become an advocate for yourself. You’re the one that knows the most about you. Don’t ever feel bad for asking questions and demanding testing, this is your life you are fighting for. Precision medicine is the next frontier to chipping away at disease and allowing more models of therapy to effectively save/extend life. Knowing you could potentially have a targetable marker that could change treatment opportunities or offer newer and more novel and effective treatments is how you take the control away from cancer, and it doesn’t continue to win. Knowledge is power!

Carole

Meet Carole, a colorectal cancer (CRC) survivor, advocate, and a spokesperson for our #KnowYourBiomarker campaign.