Patient Stories

In 2016, Mike had run a marathon and had a personal best time, beating his record from 15 years earlier. He was in his physical prime and lived an active, outdoor lifestyle but had ignored signs of not feeling right. He was more fatigued than normal and had seen blood in his stool that his doctor thought was irritable bowl syndrome. In February of 2017 Mike just wasn’t feeling like his normal energetic self. He was more fatigued than normal and his body felt like it was slowing down. He asked his doctor if he should get a colonoscopy and the procedure took three months to schedule. When he finally woke up from the routine procedure the gastrointestinal doctor diagnosed him with a rectal tumor and referred him to an oncologist. His oncologist diagnosed stage 4 colorectal cancer with liver metastases and told him his liver was not resectable. 

“As an entrepreneur and son of a retired gastroenterologist, I was used to investigating new technologies and learning how medical treatments worked.” When his doctors told him the NIH guidelines for treating liver metastases from colorectal cancer were built around seventy-year-old males, he felt confident he could do better than the 5-year-survival rate of about 1 in 10 the doctors quoted. He called on six different oncologists at six different hospitals.

In 2008, at age 32, Stacy had just given birth to her first child after a completely normal and uncomplicated pregnancy. Two weeks later, she spiked a fever and both her ObGyn and internist found her glands were a little swollen and sent her home with an antibiotic for a week. When the fever persisted and then spiked, Stacy sought the opinion of another physician who conducted a battery of tests which ultimately led to a sonogram revealing lesions on her liver.

 Stacy received a stage 4 colon cancer diagnosis with liver metastases on a Friday and by the following Monday she had consultations with surgeons and oncologists to understand her options. The first recommendation was to remove the colon tumor, followed by systemic chemo and then re-evaluate the possibility of resecting the liver. The second was to start with systemic chemo to reduce the colon tumor and then implant a pump for hepatic artery infusion (HAI) to provide regional delivery of chemotherapy directly to the liver.

  “The whole idea of the pump was scary to me; it was a foreign object in my body,” Stacy recalls. “I wondered whether I would be able to fit into my jeans if I had a pump”. Ultimately, she felt it was the best decision to lead to the possibility of liver resection and with encouragement from her doctors she was ready to move forward.

In March 2015, after a successful cardiac ablation procedure, Rick returned home and developed pain in the area around his liver. Following an evaluation and analysis of his MRI, a mass was discovered. The diagnosis was bile duct cancer that had metastasized to his liver also known as  cholangiocarcinoma. His doctors recommended he start on aggressive systemic chemo regimen right away. For the next 9 months he underwent bi-weekly 6-hour chemotherapy sessions in an effort to shrink the tumor with the ultimate goal of liver resection. Finally, in December, the doctors told him that the chemo stopped the tumor from spreading, but there had been no reduction in its size. Rick needed to consider other options.

Rick was told surgery and long-term recovery were no longer options. Due to the inoperable nature of the tumors in his liver and the lack of success from a regiment of systemic chemotherapy, he started to consider radiation therapy. Uncertain that radiation therapy was the treatment he should undergo, Rick sought other opinions and alternatives. At a third opinion, Rick learned about a treatment called hepatic artery infusion (HAI) therapy that could deliver concentrated chemo to the tumors in the liver without the systemic toxicity via a pump that would have to be implanted. He was understandably concerned about having a pump implanted, but after talking with the doctors who perform HAI therapy and implant the pump, he decided to move forward.

When visitors to Don’s home ask about the large, fully decorated Christmas tree behind his desk – that is up 12 months of the year – it’s an opportunity for Don to tell about his pump. According to Don, his wife loves everything about Christmas and looks forward to putting up the decorations every year and is sad to see them go back into boxes. After his cancer diagnosis in 2016, they decided to keep Christmas around permanently in the form of a decorated tree in their living room. It is their symbol of hope and everyday joy.

In May of 2016 after a routine colonoscopy, the GI doctor gave Don the difficult news he had Stage 2 colorectal cancer. Although the GI doctor said he removed the polyps he found, Don would need to have a follow-up surgery to have half his colon removed.

That July Don had robotic surgery, a right hemicolectomy, with half of the transverse colon and all ascending colon removed. The pathology showed nothing penetrated the colon wall and all lymph nodes were negative – this was welcome news. Chemotherapy was not discussed or suggested. However, something nagged Don. He had seen some small spots on one of the scans and although his oncologist, radiologist, and surgeons all said the spots were benign, he had read that the chances for recurrence for his type of cancer were high. So he pushed for a follow up scan earlier than was recommended.

“It all started with stomach pains that grew worse over time, until one day, it felt like somebody was stabbing me in the stomach with knives.” In August 2016, Marsha went to see a gastroenterologist who thought the cause might be bacterial colitis, then, ultimately, through a colonoscopy, discovered an obstruction. After a biopsy, the doctor  diagnosed her with colon cancer. She was 41 years young with 2 children, ages 5 and 7. As she tells the story, “I had no family history of any type of cancer. I exercised, I ate well and I was BRCA negative. Cancer wasn’t supposed to happen to me, but it did.” She was told it was stage 3 and went to have a colon resection and a grueling 12 rounds of chemotherapy. After the end of the treatment, she had a follow up CT scan and a colonoscopy and was given a clean bill of health. She thought she could finally put the nightmare behind her.

Unfortunately, shortly thereafter, routine blood work picked up an elevated CEA level. A PET scan confirmed that there was a large tumor on her liver and her cancer diagnosis was changed to stage 4. She was immediately referred to a liver surgeon for a consultation. The surgeon recommended liver resection immediately. “I had heard of hepatic artery infusion (HAI) therapy through a friend who had been treated with it 9 years earlier and had had no evidence of disease for over 8 years.” She asked the liver surgeon about HAI and was told it was “overtreatment” in her case, because her tumor was already operable.

Josh says looking back on the time before his diagnosis that “I was running a business, raising a two young kids, eating hamburgers and spicy fries, not sleeping well and really out of shape. I had pretty much given up on my health.”

In July of 2016 Josh was out on Saturday night and got an intense pain in his stomach. He went home and called his sister, a pediatrician, who said it could be gallstones. “She said if I could get through the night I was okay, if not, I should go to the emergency room.” Josh got through the night but decided to go to the emergency room the next day. They sent him home. At his wife’s urging he followed up with his doctor to get an ultrasound just to be sure it was really nothing to worry about.

His doctor called him after the ultrasound and told him there were some big spots on his liver. Josh’s reaction was “I was only 40 years old so there’s no way it’s cancer”. Further testing revealed elevated CEA levels. Now, Josh was scared. A follow up colonoscopy revealed “more polyps than could be counted”. The gastroenterologist told him to go to an oncologist immediately.