Join our ImmunoCommunity and share your story!
“I don't have a problem with dying. For me, the problem is living and living well.”
In dance, timing is everything. It can mean the difference between catching one’s partner and letting her fall.
Cancer, too, obeys a cruel clock. Delays in diagnoses can be deadly.
No one knows this better than Helena Benítez, a medical technician living in Bogotá, Colombia. Originally trained as a bacteriologist, Helena now works at the National University of Colombia, bringing diagnostic radiology to remote regions of the Amazon, where access to healthcare is extremely limited.
“It’s important to detect certain forms of cancer early,” says Helena. “After waiting 20 or 30 days, it’s too late and there’s nothing more you can do.”
Helena’s professional interests emerged out of her own experience. In 1994, while traveling in California, Helena discovered a lump in the inner thigh of her right leg. Upon returning to Colombia, she was diagnosed with malignant melanoma. By this time, the cancer had spread to surrounding lymph nodes and her prognosis was dismal: the average 2-year survival rate for patients with metastatic melanoma is less than 25%.
Helena had surgery to remove the affected lymph nodes and began radiation and chemotherapy. The cancer went away for a time, but eventually it came back and had to be removed once more. This would become a painfully familiar process: over the next two years, Helena had nine surgeries to remove recurrent melanoma. When the cancer attached itself to her femoral artery, doctors told her they could no longer hope to spare her leg; it would need to be amputated.
Helena balked at the suggestion. “You know what?” she said. “No. My leg is going to stay with me. I don't have a problem with dying. For me, the problem is living and living well, and that means living with my leg.”
With the defiant spirit that characterizes all her pursuits, Helena went in search of other options.
Small World, Big Medicine
The same week that Helena’s doctors recommended amputation, Helena learned about a potential treatment alternative. A colleague had just returned from a medical conference where he heard an American researcher named Bruce Beutler, M.D., lecture on tumor necrosis factor (TNF).
Tumor necrosis factor is a molecule, released from immune cells, that causes tumors in laboratory mice to shrivel up and die. It was discovered in 1975 by former Cancer Research Institute medical director Lloyd Old, M.D., and colleagues at Sloan-Kettering Institute.
In the lecture, Beutler, who would eventually go on to win a Nobel Prize, explained that TNF was an incredibly powerful molecule, able to smite tumors practically overnight. Initially, doctors had high hopes that this molecule could become a miracle treatment for cancer. Unfortunately, those hopes were dashed when it was discovered that TNF is incredibly toxic; the doses needed to kill tumors would also be lethal to the patient.
Finding a way to use TNF safely became the focus of the Belgian oncologist Ferdy Lejeune, M.D., Ph.D. In the mid-1980s, Lejeune began experimenting with using TNF in isolated limb perfusions. The procedure involves what’s called extracorporeal circulation, in which the blood supply of the affected limb is isolated from the rest of the body and hooked up to a heart-lung machine. The isolated limb is then flooded with TNF. Because TNF is restricted to the affected limb, it can be administered at much higher doses without harming the patient.
Helena’s colleague approached Beutler at the conference and asked if he would speak to Helena about using TNF to treat her cancer. He agreed. Dr. Beutler recommended that Helena go to the Ludwig Institute in Switzerland, where Dr. Lejeune was performing the TNF limb perfusion technique on patients.
The operation was not without significant risk, but if it meant possibly saving her leg, Helena was willing to try it.
Far From Home
Helena arrived in Lausanne, Switzerland, in November 1996. Though bound to a wheelchair and very sick, Helena found her spirits uplifted by the breathtaking Alpine surroundings. “You can't imagine how beautiful it is,” Helena recalls. “Una absoluta belleza: the Alps right there, the Lausanne Cathedral, the lake … I looked at all that and I said ‘Lord, don't let me die now, I love this place.’”
Helena also made some lasting personal connections while in Lausanne. A young Colombian tumor immunologist named Pedro Romero, M.D., was working with Dr. Lejeune at the Ludwig Institute. When he heard about Helena’s case, Dr. Romero introduced himself to her, and they hit it off immediately. It turned out that Helena’s brother-in-law had gone to grade school with Dr. Romero. Helena had found a small piece of home halfway across the world.
The day before her surgery, Helena told Dr. Romero that she didn’t want to die without first seeing the Alps. The empathetic doctor arranged for Helena to leave the hospital and accompanied her on a trip to the mountains. “He really helped me so much,” says Helena. “He showed me that there were still reasons to be happy.”
Bucking fate, Helena successfully underwent the TNF limb perfusion procedure and was subsequently able to have surgery to remove the necrotic tumor and save her leg. “When they finally took off the bandaging and I looked down at my leg, I saw that it was all worth it. It was a miracle.”
In early 1997, Helena returned to her life in Bogotá, instilled with the hope that cancer was finally behind her. Unfortunately, not four months later, she suffered a relapse: the melanoma appeared in the other leg. Soon, she would be repeating the TNF procedure all over again. This time, however, Dr. Lejeune recommended that Helena be treated in Miami, FL, since it was closer to home.
It was in Miami while recovering from the surgery that Helena met a physical therapist named Marina Maduro, who became a powerful influence in Helena’s life. Marina told Helena that dancing would be an excellent form of physical therapy. “I said, ‘Alright, I'm willing and ready. Just tell me how, when, and where.’”
Marina took Helena out dancing. First, they went Flamenco dancing, but Helena didn’t take to it. “You have to dance alone and I couldn't do that.”
Next, they visited a tango class. This was a better fit for Helena, since it’s a couples’ dance. It was also good exercise for someone with weak inner thigh muscles. “What I didn't have were the abductor muscles,” says Helena. “And those are the ones you need to do los ochos in the tango.”
Helena began practicing the tango in her own home, with the help of a dance instructor. What started out as simple physical therapy, however, soon became much more.
One afternoon, as the sounds of the bandoneón wafted through her apartment complex, Helena heard a knock at the door. A neighbor came by to request that she turn down the music.
The neighbor explained that an old man who lived next door was dying. The dying man had loved the tango and his family was very upset by the music.
Helena turned down the music, but her dance therapy had piqued her neighbor’s interest. Why was she dancing the tango in her apartment?
“I told him that I had had cancer and I take tango classes to heal my leg. And he asked me if one day he could talk with me more about that and I said, ‘Well, OK, why not?’”
Helena and her neighbor eventually became dance partners, then friends. The more time the couple spent with each other dancing the tango, the more they realized that this was no ordinary dance partnership. The couple eventually married, and they are now celebrating their fourth wedding anniversary.
This was the first of many important changes that Helena would make in her life after successfully battling cancer. She shook off numerous personal and professional shackles that had burdened her life before her bout with illness.
“Now I have a new life and I am happy because I have someone to dance the tango with,” says Helena. “The tango really ended up being a very good therapy for all the troubles in my life!”
Interview with Helena Benítez conducted in Spanish and translated into English by Braden Marks.
Others may benefit from hearing your experience and treatment journey.
Emily Helck was 28, and fresh off a writing residency in Rome, when she was diagnosed with breast cancer. No...
Everyone needs an advocate sometimes. For KayEllen Gebhart, 61, who was facing stage 3 ovarian cancer, that...
Michelle Boyer should probably have an honorary degree in tumor immunology. Diagnosed with metastatic melanoma in...
Join the ImmunoCommunity to access an important resource for all things related to cancer immunotherapy. Connect with others who have shared experiences and learn about new treatment options.
To continue to find the answers to cancer, it takes funding for research. Donate to the Cancer Research Institute today to help us continue to search for answers.