Angela Nardi never imagined that she would face cancer once — let alone three times.
Angela’s story began with a rare cancer diagnosis. Her long journey has involved multiple treatments and hospitalizations, many surgeries — including a liver transplant —and later being diagnosed with two more types of cancer.
“I would have preferred not to have such a story, but since I do, I want to try to be useful and help other people, especially patients,” Angela said, adding that when she goes to the hospital, physicians she has never met often come into her room to see her because they have heard about her incredible case.
Although Angela has suffered through extremely challenging circumstances, she has also seen the best of medicine and humanity in the tremendous efforts that her medical team made to save her life and in the ways her family and friends supported her. She recently reached out to myTomorrows to share her incredible story.
Her symptoms started in 2017. Angela, who is from Pisa, Italy, had been very tired and went to the doctor. Blood tests showed abnormally high levels of Calcium and then a scan revealed a 14 cm tumor.
She was diagnosed with a rare cancer called cholangiocarcinoma, which is also known as bile duct cancer. Bile ducts are thin tubes that go from the liver to the small intestine. Bile, which is a fluid that helps with digestion, travels through these tubes from the liver and gallbladder into the small intestine.
“This was a very usually large tumor for this type of cancer,” said Angela, 62.
Her doctors told her it was impossible to remove it with surgery and recommended chemotherapy. Angela asked her sister, who is a physician, to search for a surgeon who might be willing to try to perform the surgery. Her sister helped her navigate her medical care each step of the way, Angela explained.
Meanwhile, Angela had to give up her career as an English teacher for high-school students.
Her sister eventually found a surgeon in Padova who was willing to operate on her, but he cautioned that it would be risky with an uncertain outcome given the size and location of the tumor. In November 2017, she had surgery to remove the tumor.
“It was a 15-hour surgery and very complicated,” Angela recalls. “I’d say this surgeon performed a miracle.”
Doctors warned her there likely would be more nodules that would occur even though the primary tumor had been removed. She had additional surgeries to remove them, as well as TACE procedures to remove nodules that could not be removed by surgery or thermal ablation. TACE (transarterial chemoembolization) is a procedure where chemotherapy is delivered directly to the tumor through the artery.
Her liver function began to decline, and doctors put her on a strict diet and limited her fluid intake.
“This was my thirsty period,” she recalls, adding that she was not allowed to consume salt or sugar on this diet.
Meanwhile, her oncologist went to a medical conference focused on leukemia and other types of blood cancers. At the conference, there was a presentation about a leukemia drug that also showed potential for treating a certain type of mutation found in cholangiocarcinoma.
It was the same type of mutation found in Angela’s tumor. Her physicians requested access to the drug via compassionate use from the Italian Medicines Agency (the country’s regulatory authority) and also requested the drug from the American pharmaceutical company manufacturing it.
Compassionate use programs, which are also referred to by other terms, such as Expanded Access Programs or Managed Access Program, are possible pathways for patients with serious or life-threatening illnesses to potentially access a drug outside of a clinical trial when they are not able to enroll in a clinical trial and have exhausted their standard treatment options.
“The concept of compassionate use was totally new to me, and I was very grateful to have this possible option,” she said. “We tried every avenue to get this drug.”
Angela feels fortunate that her oncologist kept looking for treatment options for her cholangiocarcinoma.
“I think most patients don’t even know about clinical trials and compassionate use,” Angela said. “I was lucky that my oncologist told me that this was a possibility, and I was lucky to have such incredible doctors who did all of this for me.”
Angela has since told other patients about how myTomorrows offers a free service to help patients and physicians search for clinical trials.
Her doctors were eventually able to access the drug. She took the drug at half-dose for six months and had a positive outcome and very few side effects.
When oncologists determined that she was in remission, she was able to be put on the transplant list in April 2021.
On December 30, 2021, Angela underwent a liver transplant.
While any organ transplant surgery would be complex, hers was especially complicated. Due to her previous surgeries, Angela had a lot of scar tissue surrounding her liver which was problematic and made it very difficult to position her new liver, she explained.
Following the transplant surgery, she suffered from blood clots and complications with the closure and healing of her incision. She was kept in a medically induced coma for a month and spent more than six months in the intensive care unit in the hospital. When she was released, she had to relearn how to walk and perform basic motor skills as her muscles had atrophied from being in the hospital bed for more than six months.
“This was an especially hard time and having the tracheotomy for all of those months was so difficult,” she said.
Angela says her amazing family made it possible to persevere, especially her sister, Silvia Nardi, who is an anesthesiologist.
“I owe my life to my sister,” Angela said. “She was completely devoted to my cause, and she did everything she could to help me by finding the best doctors, booking the exams, speaking to the doctors during my surgeries and treatments.”
Her partner, Ennio Parente, was a major source of support throughout. He rented an apartment in Padova where she had her liver transplant so he could be with her at the hospital every day, as Padova is 3.5 hours away from their home in Pisa.
“He was wonderful and always right there next to me,” Angela said. “He was positive and cheerful even though I know he suffered to a lot, too.”
Her daughters, even though lived hours away from the hospital in Padova, created a schedule where one of them would visit her every day. Her brother also came to visit once a week.
“We fought this battle together — they were always with me,” she said of her sister, her partner and her daughters. “I was really supported by my family and friends.”
The dedicated nurses and doctors helped her through the ordeal.
“I had the best ICU nurses who were so cheerful and caring and my doctors were really wonderful,” she said.
After six months in the hospital without eating any outside food or even seeing the sun, Angela said she learned to appreciate all of the little things in life. Angela enjoys things to the fullest extent, such as gardening, traveling, reading and exercising.
“I remember when I came out of the doors and I felt the sun on my skin for the first time in so long,” she recalls. “I lost more than 10 kilos during that time, and I was frail and being wheeled into an ambulance, but I felt so happy to see sunshine.”
When she was finally released and sent home to Pisa, but soon got COVID and ended up back in the hospital. She had a weakened immune system from long-term use of immunosuppressants to prevent her immune system from attacking her transplanted liver.
“I came home from the hospital in July, and I have been fine,” she said.
However, she soon developed skin cancer on the scar from her liver transplant surgery. Doctors said it was likely caused by taking immunosuppressants. She had surgery to remove the cancerous lesion in December 2022.
“It was very simple, and I felt fine afterwards,” Angela recalled.
This second experience with cancer would not be her at last.
She had been having some unusual gynecological bleeding since 2021, and although her pap smear tests and exams were normal, she felt that something was wrong and sought opinions from two different Gynecologists.
In January 2023, she went back for a routine check-up and was diagnosed with stage 3 uterine cancer. She had a laparoscopic hysterectomy that went well, but then she ended up back in the hospital with a bacterial infection and a high fever. Angela has fully recovered from the surgery and is currently undergoing chemotherapy for uterine cancer.
“I have had cancer three times and I have had a total of 16 surgeries, but I am still alive,” Angela said. “I am going to become a grandmother soon, and I plan to live for a lot more years.”
As she waits for her grandson’s arrival, she reflects on how her odyssey has changed how she views life.
“I don’t give importance to stupid things; I just smile and know that they truly do not matter,” Angela said. “I appreciate the people around me more, and I appreciate life more in general.”
She offers some advice for other patients who are facing cancer.
“Always be positive and think that you are able to defeat the cancer,” she said. “This was always my deep conviction; I never thought about not winning.”
Of course, this became very tough at times, especially during the excruciatingly difficult months following her transplant surgery.
“I stayed convinced I could do it, even with the suffering, problems, and complications,” she recalls. “I had all the complications I could possibly have after the transplantation — even pneumonia, but I never gave up. This is the most important thing — to never give up.”
myTomorrows helps physicians and patients search for clinical trials.
myTomorrows Team 5 Apr 2023