"Life is tough, but you are tougher"
- Caitlin Kochheiser, 32, was diagnosed with appendix cancer in 2018. She had surgery, underwent chemotherapy, and was declared cancer free in 2019.
- When her cancer returned, Kochheiser was ready to give battling the disease everything she had. But the cancer spread aggressively, and her doctors advised her that treatment would not make much difference.
- When Kochheiser stopped treatment, she filled her life with adventures and small moments of love with the people that mattered to her most. She even fit in a wedding on the beach.
Caitlin Kochheiser passed away on January 25 from a one-in-a-million cancer. She was 32-years-old. But even in her weakest days as the appendix cancer took hold, Kochheiser was focused on the people around her. She spent some of her final hours writing letters to her niece and nephew.Read More
The Kochheiser family had no luck trying to find a specialist with the expertise to treat Caitlin in Indianapolis, so they traveled to Pittsburgh where she endured an invasive 10-hour-long surgery. Kochheiser described the operation as one of "the scariest, but also the best moments of my life." Writing on a personal blog, Kochheiser reported, "They took about eight things outâ€¦ Please keep praying that the cancer is gone forever and it won’t come back"
Kochheiser showed an unbreakable toughness through her chemotherapy treatment, which began in December 2018. In May 2019, she finished chemotherapy and was declared cancer free, but her family knew that keeping the cancer away would be an uphill battle. "We were all hoping it wasn't going to come back," her father said, "But knowing there’s probably a 99% chance that it was going to. That’s the nature of the disease."
For over a year, Kochheiser got to live the best version of her life she could imagine. She worked her "dream job" as a wellness teacher, and kept up coaching track. "The girls loved being around her," said Katie Kelly, who coached with Kochheiser. "She was who they wanted to be." She even faced her fear of rollercoasters.
But cancer cut things short. Testing in early 2020 showed that Kochheiser's risk had increased, and by the end of that year, her disease was back in full force. Kochheiser endured another operation and more chemotherapy, but her doctors advised her that it would not likely make much of a difference. Kochheiser made the heart-wrenching decision to stop treatment.
Even in the face of all this, Kochheiser's love with her parter Brian continued to deepen. The months after Kochheiser stopped treatment were filled with "every emotion you can imagine," Brian said. "But I wouldn’t change anything for the world. The ups and the downs have been a true privilege. We just wish the outcome was a little bit different."
A beautiful beach wedding was one part of the couple's love story that Kochheiser had always dreamed of, but it became clear that it might not be possible due the appendix cancer advancing. So they improvised. Friends flew in from all parts of the country for a bachelorette party on Fourth of July weekend. Kochheiser wasn't healthy enough to eat or drink, but it was enough for her to see her friends.
Caitlin and Brian were married in July on Marco Island, Florida. "It was a dream wedding. It ended up being exactly what she wanted and needed," Brian said. Caitlin had five bridesmaids in matching dresses. "It looked like they'd planned the wedding for six months," Caitlin's father said. "They put it together in a week."
Caitlin and Brian packed her last months with enough memories to last a lifetime. They traveled to Cape Cod and to Michigan. They wore costumes for Halloween and attended the Indianapolis Symphony Orchestra's Yuletide Celebration over the holidays. Caitlin Kochheiser's family has lost so much, but they find peace in their faith that they will see her again. "We all know she's going on to a better place," Kochheiser's father said. "We all look forward to spending eternity with her."
How to Find Help After a Rare Cancer Diagnosis
Tens of thousands of people are diagnosed with rare types of cancer every year. People facing an uncommon diagnosis may find it difficult to find a doctor who specializes in their illness. SurvivorNet experts have specific guidance on ways that rare cancer patients can find helpful resources and take the initiative to get the help they need.
Here are some ways to find help:
Many SurvivorNet experts say that once they've exhausted all other options for treating their patients' cancer, or if they have a rare cancer, they'll recommend looking into clinical trials. How can you find active clinical trials that may be right for you? Check out clinicaltrials.gov.
Clinical trials may offer life-saving treatments for some people but they are also extremely important for scientific research.
This website is a database that the U.S. government maintains. It compiles privately and publicly funded clinical trials conducted around the world. It can be a particularly useful resource for cancer patients with rare conditions as a tool for finding doctors who are experts on their diseases.
Oftentimes, the most specialized doctors in a specific field end up leading clinical trials that push our understanding of diseases forward. If you know what the name of your disease is, you can search the disease name on clinicaltrials.gov and find the names of doctors leading these kinds of studies. This tool can help you identify the doctors who are best qualified to help you.
Academic Centers & Comprehensive Care Centers
For many cancer warriors, community oncology can be a great treatment resource. However, people with rare cancer might require specialized evaluation. Most of the time, the most effective place to find a specialist is at academic centers and comprehensive care centers.
A major benefit to seeking care at a comprehensive cancer center is that there will be a team approach to finding the best treatment.
"A comprehensive cancer center is a cancer center that has been essentially vetted by the National Cancer Institute, and provides outstanding clinical care in addition to basic and translational science and research," Dr. Ted Teknos, president at University Hospitals Seidman Cancer Center in Cleveland, Ohio, tells SurvivorNet.
Across the U.S., there are only about 50 accredited comprehensive cancer centers. There are also various cancer cancers.
What's the difference between the two, you might ask? Well, an NCI-designated cancer center means that a center has met NCI standards for cancer prevention, clinical services or research, but not all three. If a facility is an NCI-designated comprehensive cancer center, that means it meets NCI standards in all three categories.
Dr. Kenneth Miller, a clinical instructor at Mount Sinai, tells SurvivorNet about what differentiates a comprehensive cancer center from other treatment providers, like community medicine.
"Pretty much automatically, there's going to be a team approach (to your care)," Dr. Miller says. "Surgical oncology, medical oncology, radiation oncology and all the support services and also wonderful pathology and radiology." Dr. Miller explains that at a comprehensive cancer center, all of these different specialists work together to help you find the best treatment.
"We call it a tumor board a group to go through all the details of your case â€¦ so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well."