Life-Altering Misdiagnosis Can Lead To Unexpected Places

Written By Debra Gellbart
October, 2019

Diagnosed: April 2019
Status: Tumors Are Shrinking. Presently Taking Chemotherapy

Ulf Larsson is A Long Way From Home

The pancreatic cancer warrior from Sweden is being treated at the HonorHealth Research Institute in Scottsdale, Arizona.

Ulf Larsson and his wife Lena .have been staying in Scottsdale temporarily, having traveled there from Sweden after learning that Ulf, a retired leadership consultant, has Stage 4 pancreatic cancer. “I wasn’t satisfied with answers from Swedish doctors,” Ulf said. “They said my cancer was incurable and the only thing they could do was to postpone my death with chemotherapy.”

How The Journey Started

Living in Sweden, Ulf began experiencing stomach pain in January 2019. A month later, he was suffering from pain in different parts of his legs, sending him to his primary care doctor. He was diagnosed with muscle inflammation and prescribed pain medication. His leg pain did not resolve and his primary care doctor then told him he has high blood pressure and tried to treat that problem.

By March, his stomach pain was intensifying. Doctors mistakenly diagnosed him with diverticulitis. His problem worsened and on April 4, he was sent to a hospital emergency department near his home. He underwent a CT scan and was told the preliminary diagnosis was pancreatic cancer that had spread to his liver and lung. He had blood clots in his legs and lung, so he was kept at the hospital to receive care.

A Swedish surgeon told Ulf and his family that he might be eligible for chemotherapy as a treatment but that there is no cure for the cancer.

About three weeks later, a biopsy confirmed the diagnosis. Ulf, who has no known risk factors for pancreatic cancer, had a meeting with a Swedish oncologist on May 17, who suggested treatment with Folfirinox, a combination of chemotherapy drugs. But by then, not satisfied with what he was being told, he and Lena already had planned to go to Arizona for a consultation.

From Sweden to Arizona

While he didn’t seek a second opinion in Sweden, Ulf visited two other facilities in Europe while awaiting the May 17 visit with the Swedish oncologist.

At a hospital in Heidelberg, Germany, he learned that even with surgery, the outlook would still be grim. He also visited a cancer hospital in Helsinki, Finland. “We got a lot of good advice and information there, but we were still looking for more,” Lena said.

Around the same time (early May), the Larssons’daughter-in-law and son, researchers at Cambridge University in London, found a scholarly article that talked about a clinical trial underway at HonorHealth Research Institute in Scottsdale, Arizona that incorporated administration of chemotherapy and Vitamin D. “This was the only study that my daughter-in-law found that seemed like it might work for me,” Ulf said. He contacted the Research Institute and was able to schedule a consultation with Erkut Borazanci, M.D.

But before they could leave for Arizona, “we first had to collect all of my medical records, scan images and translate everything into English (my daughter- in-law and my son did this with help from one of their friends who is a doctor) and scanned everything so we could email it to HonorHealth for review, in order to get qualified for a consultation,” Ulf said. “We got word that I qualified for the consultation because I had stage 4 adenocarcinoma and had no prior treatment.”

Ulf and Lena left behind their comfortable life in Sweden and set out for Scottsdale on May 20. Two days later, Ulf had his consultation with Dr. Borazanci. At the consultation Dr. Borazanci suggested the vitamin C study for him instead of the vitamin D. The study that Ulf, 64, is enrolled in is called the Trial of Ascorbic Acid (AA, otherwise known as Vitamin C) + Nanoparticle Paclitaxel Protein Bound + Cisplatin + Gemcitabine

Read More About This Pancreatic Clinical Trial Held At HonorHealth Research Institute

He has been receiving infusions of the regimen of three chemotherapy medications plus Vitamin C in three-week cycles. Ulf said he expects to be in treatment until February or March of 2020. He has imaging scans and blood work every two months and so far, his tumors are shrinking.

Perceptions of Care in Europe Compared to Scottsdale

“I had never heard of Scottsdale before coming here,” Ulf said. “I knew nothing about pancreatic cancer when I got the first diagnosis. I am still more surprised finding myself having this illness than being in Scottsdale. I am grateful being able to get this treatment but I am also angry that so little seems to be done in Sweden about this severe illness that causes so many deaths. It would be a huge improvement if this treatment could be available in Europe! For someone living in Europe, there are huge obstacles to overcome to be able to receive this treatment. The support and help I get from my wife, children and my daughter-in-law has been essential to be able to come to Scottsdale for this treatment.”

Hope is His Energy

“All the articles and stories online about the treatment and survival gave me hope,” Ulf said. “Dr. B. informed us that the small vitamin C study had more than 80 percent improvement for the patients compared to 30 percent with conventional treatment. I think it was the positive attitude from everybody at the HonorHealth Research Institute that also gave me hope right from the start. The goal is to make me as well as possible and to make this a chronic disease instead of a life-threatening one. When the treatments started and I had positive results and my pain disappeared, all of this has given me hope for the future. I am feeling fine, and this gives me hope.”

Appreciation for Seena Magowitz Foundation

Ulf is delighted that the Seena Magowitz Foundation invited him and Lena to attend the Foundation’s 17th annual Golf Classic event in Phoenix at the beginning of November 2019.

“It was unbelievably fantastic,” Ulf said. “We haven’t seen a gathering like that before.”

“It gives us so much hope to see all those people surviving who also have pancreatic cancer,” Lena said. “And it was also great to see all the wonderful work that the Seena Magowitz Foundation is doing.” Ulf noted that he is unique among the patients in attendance at the Magowitz Foundation event because he comes from so far away. “I haven’t met many foreigners facing what I’m facing here in the United States,” he said.

Advice for Others

Ulf said what he would tell others who are diagnosed with pancreatic cancer or another scary disease is “don’t give up and don’t listen too carefully to any doctor who says you only have months to live or that there’s not much (or anything) that can be done for you. Do your own investigation to find out where else you might be able to go for help, even if it’s halfway around the world.”

“Get as much knowledge as you can,” Lena said. “It really can save your life.” Always seek a second opinion.