Ed R.

Colorectal Cancer - Stage IV

Ed-R
quotation

Right from the start, I felt so comfortable with the doctors, nurses and clinicians who were providing me treatment recommendations. They explained to me that they could not cure my cancer, but they would help me live with my cancer. When new cancer advancements become available, they will seek them out to incorporate into my treatment as necessary.

I grew up in South Florida. I met my wife, Sandy, at a volleyball tournament she was playing in. I had recently graduated high school, and I was back visiting the school. We met after the game and soon started dating. When Sandy’s parents announced they were moving, I asked Sandy to marry me so she could forever be by my side.

We have been married for almost 40 years. Sandy and I have three wonderful daughters, Jennifer, Jaime and Kaitlyn. Jennifer is married to a great husband, Eric, and they have a daughter, Leah. Along with being proud grandparents to our granddaughter, we have several grand-cats and grand-dogs.

We spent most of our life in Homestead, Florida. I was a detective in the Special Investigations Unit with the City of Homestead Police Department and also a K9 handler for narcotics detection. Sandy was the Performance Improvement Manager at Turkey Point Nuclear Plant. We both retired in 2016.

We have always enjoyed a healthy lifestyle. We enjoy playing sports, being active and exercising. We planned to enjoy our retirement and fulfill our bucket list. Then, a few months after retirement, I didn’t feel like myself. I noticed blood in my stools. I had dealt with a hemorrhoid several years earlier, so I thought that was the issue. I followed the same self-care steps that my doctor previously instructed. But as time went on, I started feeling a lot of pressure and I was losing weight.

When my condition worsened, I scheduled an appointment with my doctor, which happened to fall just days after Sandy retired. We met with the colorectal surgeon, who said he was 99 percent sure that I had a malignant tumor, but biopsy results would need to confirm it. I was devastated and in shock. My whole world turned upside down. Terrible thoughts went through my mind. I worried about how I would tell our kids if I had cancer. My mind was racing with worry.

Test results confirmed that I had a large malignant tumor, it was rectal adenocarcinoma. Then I had a PET scan that identified pulmonary metastases—three very small spots—on my left lung. June 16, 2016, was the day I found out that I had stage IV rectal cancer. That moment changed our lives in a way that we could have never imagined.

Starting treatment

I followed my doctor’s referrals, and I started treatment locally at a hospital close to me. My treatment started with radiation therapy and oral chemotherapy. Radiation therapy shrunk the rectal tumor by 80 percent. The results were fantastic, and the doctor felt that I was making great progress. Then I started infusion chemotherapy and completed 12 cycles. I tolerated the side effects. I knew I had to stay focused and get through this. Testing revealed that the cancer in my lungs had started growing and my rectal cancer was unchanged. At this point, my doctor recommended surgery to remove the rectal tumor.

I scheduled the surgery, and it was to take place almost a year after my original diagnosis. Before the surgery, I completed another scan, which showed the cancer had spread to my right lung. I was shocked and disappointed. However, the surgery was still focused on the rectal tumor.

The surgeon removed my rectal tumor, and the margins were good, so he performed a resection. But my recovery was really tough. My hospital stay doubled from the anticipated four days to 10. I was in tremendous pain and on heavy pain killers. I was taken off food at the hospital, and I lost a lot of weight. When I finally got home, recovery was long and hard.

I started another cycle of chemotherapy with different drugs in September 2017. I had a lot more side effects from this treatment. I was very weak and experiencing a lot of pain. I carried a pillow with me everywhere to sit on. My quality of life was diminished. Then, test results showed that the cancer was not slowing down.

As the cancer continued to grow and spread, I felt I was losing the battle. I started losing hope. My oncologist and pulmonary surgeon recommended lung surgery. I had seven large nodules in my lungs that they wanted to remove. I was scared when they told me that the surgery would be very painful, and recovery would be difficult. I was hesitant about another surgery. Sandy was adamant that she wanted to find me other options, and she started researching treatments.

One day, Sandy was looking at a bill for lab work, and she started studying the bill. Sandy researched the codes to see what each one meant. Through her research, she read about advanced genomic testing and its role in identifying targeted therapies. Sandy then searched online for cancer treatment facilities that offered advanced genomic testing, and Cancer Treatment Centers of America® (CTCA) came up in the results. After reading more about CTCA®, we called the phone number to get more information.

Hope returns

Our phone call with CTCA impressed us from the start. We decided to go to the hospital in Newnan, Georgia, to meet with a team of doctors and nurses who would personalize a treatment plan for me. I was excited to get a second opinion.

We drove from our home in Florida to the hospital in Georgia in April 2018. CTCA arranged for us to stay at its guest quarters during my three-day evaluation. After completing an array of tests and scans, we met with my care team. My medical oncologist discussed options and proposed advanced genomic testing to try to identify the mutations that were driving the growth of my tumors. The thoracic surgeon recommended a wedge resection on my right lung to remove the tumors and to obtain the necessary tissue samples.

Right from the start, I felt so comfortable with the doctors, nurses and clinicians who were providing me treatment recommendations. They explained to me that they could not cure my cancer, but they would help me live with my cancer. When new cancer advancements become available, they will seek them out to incorporate into my treatment as necessary. I chose CTCA because the doctors I met with explained everything. They discussed the possibilities and answered my questions. I was part of the decision process, which was very important to me.

One month later, the CTCA surgeon performed surgery on my right lung in May 2018. I was able to leave the hospital the day after surgery, and I didn’t even need to take pain medication. Importantly, they also gathered tissue for genomic testing, which showed my mutation as HER-2 positive with amplification.

The results of my genomic testing identified targeted therapies specific to my cancer. The doctors explained precision medicine to us. They discussed the types of targeted therapies that would be used and told us about potential side effects. After we reviewed my options, I decided to have surgery on my left lung to remove the remaining nodules. I knew that if the cancer returned, my oncologist had a sound plan based on my specific cancer mutation.

My next lung surgery was June 2018. They took out four nodules and removed my lower lobe completely on my left lung. Recovery was again quick, and I was out of the hospital in two days. A month later, X-rays showed my lung capacity improved, and it was almost back to pre-surgery levels. I felt great. I felt like I had my life back. I wasn’t just existing, I was living. I was able to return to the lifestyle I had before cancer.

In September 2018, a CT scan showed the cancer had returned. I had three new large nodules in my left lung. Although disappointed, I didn’t panic. I knew my oncologist had a plan just in case this happened. I started targeted therapy in November 2018 and began an infusion of trastuzumab and pertuzumab, which I continued every three weeks. The only side effect I experienced was a slight rash, which went away after a few treatments. I worked with the supportive care team to proactively address my side effects. I didn’t dread going for treatment. In fact, I looked forward to going to the hospital. CTCA took care of what we needed, even things we hadn’t thought of yet. The team there genuinely cares about their patients and families. 

The best news I’ve gotten came eight weeks after starting targeted therapy. Scans showed the nodules in my lungs were disappearing and breaking up. Shortly after that, it was declared that I had no measurable disease. I am still in active treatment but living with a fantastic quality of life. In June 2020, I had my 27th treatment. I will continue to go back to CTCA every three weeks for treatment.

We recently moved to Central Florida. We are busy building a house about 20 minutes from our oldest daughter. The location is also closer to CTCA than before. I feel so much more like myself again.

Sandy and I are dedicated to helping others and giving back. I share my cancer story. I have a strong desire to help other people in similar situations. I tell people, “If you are diagnosed with cancer, get a second opinion.” I also tell everyone I meet about CTCA and what the doctors and clinicians have done for me. Sandy and I are part of Cancer Fighters® program to support fellow CTCA patients during their cancer journey.

I am looking forward to my future and making plans. I will always have cancer, but I am living life to its fullest. We are looking forward to spending more time with our growing family. We are looking forward to traveling together, and I have always wanted to go on an Alaskan cruise. With my cancer managed, I feel like we can truly start living our best retirement life. 

I will forever be thankful that I found CTCA. It was the answer to our prayers.

Diagnosed:
June 2016
Treatment at: