Ed-R-Colorectal

Four things to remember when you hear the words, “You have stage 4 cancer”

Ed R. was diagnosed with stage 4 rectal cancer shortly after retiring in 2016. His cancer had metastasized to his left lung, where he had three extremely small nodules. He underwent radiation, chemotherapy, rectal surgery and then more chemotherapy during his initial 18 months of treatment at a local cancer treatment facility. The rectal tumor was removed, but the cancer in his left lung grew and spread into his right lung. After experiencing severe side effects and a poor quality of life, Ed came to Cancer Treatment Centers of Atlanta® (CTCA), Atlanta, for a second opinion on treatment options. Three years after he began treatment at CTCA® in 2018, scans showed that Ed had no evidence of disease.

As Cancer Fighters volunteers, Ed and his wife Sandy set a goal to use encouragement, education and empowerment to change others’ initial reaction to the words, “You have cancer.” Now, Ed and Sandy are sharing the four pieces of advice that helped their family navigate a metastatic cancer diagnosis.

  1. Don’t let fear determine your future. Ed: When I found out I had cancer, it felt like I had been handed a death sentence. Terrible thoughts went through my mind: “How do I tell our daughters?” I was the strong, invincible dad—now this. I decided that for them to have confidence, I was going to fight as hard as I could. They had to see that, even though I was scared, I wouldn’t give up. We didn’t question why this happened, but instead, we asked, how can the cancer be treated? I completed the treatment plan my oncologist recommended, but the treatments didn’t work as expected. Although Sandy and I were scared, worried and unsure of my outcome, we didn’t give up. We knew if I remained on the standard treatment plan, the outcome wouldn’t be good. Sandy researched clinical trials, new radiation therapy options and advanced genomic testing. We left no stone unturned. At this point, I knew I’d need to leave the oncologist I had trusted for 18 months to try other treatment options, travel to a new facility and trust a new doctor. My fears resurfaced, as if I was starting all over again from square one. I knew I had to make this change, and I did. I began a new treatment plan that I chose with my new oncologist. After several weeks, it was clear that, with the new treatment plan, I was making very good progress. I know that everyone may not have the same results, but this story is about our approach to our journey, not the destination. No matter what my outcome ends up being, Sandy and I know that we fought a good fight, and we found and used valuable tools for our journey. I’ve been a survivor, not a victim, during my treatment. Don’t give up hope, and trust in your faith.
  2. Consider a second opinion before deciding on a specific oncologist or treatment facility. Ed: Not all treatment facilities and oncologists are the same, and they all don’t offer the same treatment options, or precision medicine techniques. It’s important to understand the treatment options and goals the care team is proposing for you. Ask about innovative techniques and clinical trials the treatment facility offers. Based on what I had experienced during my initial treatment, we wanted an oncology team and treatment facility that were proactive, and provided personalized, advanced treatment options.
  3. Be your own advocate. Sandy: You and your caregiver should research your cancer type and the options that may be available to treat them. Learn as much as you can. As my husband’s caregiver, I would prepare for medical appointments by writing down any questions we had about his treatment, side effects, test results, etc. Some of the medical terminology used in the scan reports can be confusing. I would research new-to-me words, and if necessary, develop questions prior to meeting with his care team. My husband’s oncologist and his team welcomed any questions we had and encouraged discussion on treatment options. In the end, treatment decisions are yours. Be sure you have a full understanding of your treatment and progress to make educated decisions about your care.
  4. Ask about advanced genomic testing. Ed: Understanding your cancer’s mutation, if possible, is paramount to understanding and choosing the treatment options that are best for you. We were extremely pleased with the personalized treatment option offered based on the genomic test results of the DNA profile of my tumor. Advanced genomic testing identified the specific mutation of my cancer, and my team was able to use that information to recommend targeted therapy drugs that were known to work against that mutation.