Editor’s Note: We are heartbroken to hear of Sue’s transition from this world on Jan. 3, 2016. She was a force larger than life and will be missed greatly. This story was originally posted as a Survivor Story.
Diagnosed at age 39 with 2 small children, Susan promised herself in recovery that no matter the outcome, she would fight for other colorectal cancer patients. Her personal mission is to raise awareness of young onset colorectal cancer. She knows it can happen to anyone at ages much younger than 50. Misdiagnosed cases have often occurred, in her opinion, because most people and doctors rely heavily on the statistics. Susan was no exception to the rule.
Colon cancer was something brand new to her having no known family history. As she began to research any genetic links with her extended family, she learned of some cancer (distant cousins) and of her brother’s removal of a large non-cancerous polyp at age 25. Susan also encountered the unwillingness of many to tell his or her story.
Prior to diagnosis, Susan had experienced (in general, laymen’s terms) bloating, flatulence, bleeding, very slight and intermittent. Doctors assumed it was from hemorrhoids. She had what was thought to be an internal hemorrhoid that would appear from time to time. It was actually a polyp. No one examined it, they just took her word.
In 2003 she underwent a colonoscopy. They found one small precancerous polyp. At the time, she was told to repeat the procedure in 5 years. Struggles with bowel issues continued along with being gently placed in the Irritable Bowel Syndrome (IBS) category.
After the birth of her daughters she went to a new GI who sent her home with a laxative and said she wasn’t ready for a colonoscopy. The GI assured her the bleeding was from hemorrhoids and found no reason to perform an exam.
Eighteen months later, in March of 2008, she found a colon and rectal surgeon. Two days before her scheduled appointment, the bleeding was severe enough that she was able to see the doctor that same day. By the time she left the office, she was scheduled for a colonoscopy and transanal excision surgery to remove the polyp. The surgery was successful and two days later she was diagnosed with a T1 rectal tumor. After second, third and fourth opinions doctors determined that her tumor was a T2 and the “waiting and watching” approach would be too risky.
On May 21 2008, 90% of Susan’s rectum and a portion of her colon were removed. They were able to directly reconnect the colon to the remaining rectum. Not all surgeons were willing to spare her life without a colostomy bag. After seeing many doctors, she found the one skilled and confident enough to offer better odds. There were no guarantees, but in the end she was spared the bag.
It was a scary time with two young children. Family supported Susan, her kids and her husband. The entire family focused on the clinical side of things and kept the emotional side at bay. This helped everyone focus on the goal and what needed to be done instead of worrying about the “what ifs.” She will never be able to truly thank her entire family. Her husband became the hero in her recovery. He worked tirelessly to take care of the kids, clean the house, pay the bills, attend school functions in her absence and he never once complained (…he slept a lot, but never complained). He even made sure both of the girl’s hair had bows. He probably was terrified on the inside, but if Susan believed she would get well, then he believed too.
In recovery, Susan has made some lifestyle changes including:
- Juicing a few times a week.
- Cutting out red meat.
- Reviewing chemical content of foods.
- Avoiding the center isles at the grocery store.
- Making homemade chocolate chip cookies over boxed versions.
- Adding vitamin D supplements.
- Exercising to a point of running a 5k in December 2008, the Get Your Rear in Gear 5k in March and a 10k in April 2009.
- Recognizing her system works differently so she needs to make accommodations.
Susan by nature is a positive person and kept her sense of humor throughout treatment. She considered the experience an opportunity instead of a challenge. Fun at every stage was part of the game; she even had a surprise party for her sister in the hospital after her radical resection. Other words of wisdom she offers to those diagnosed:
1. Delegate: Be willing to ask others to help. Her Dad is always researching something. He was more than willing to find information on the disease, hospitals and doctors that specialized in the surgery needed. He even found her surgeon on a golf course.
2. Communicate: Tell your story to any willing party. Learn from others who battle cancer. You hear the news and stories of tests while giving and receiving support. Tell others what you know to help prevent cancer.
3. Take Charge: “Do this for your health care, and your life. Think positive thoughts!!! This sounds like what every one else is going to tell you, but believe in the power of positive energy. Do whatever it takes.” Susan wrote the diagnosis she hoped for on her bathroom walls. T1 N0 M0. She even had her family write it out. She taught them what the diagnosis meant and they all were more than happy to help visualize the success. As her diagnosis progressed, she never stopped seeing the goal. “Heck, I couldn’t, it was written on my walls.” The walls have since been painted over, but the vision is the same.