‘Cancer Patient from Hell’ and the Fight for Life

Feature

Feb 18

This was a feature written in June of 2023

Nina Hillenberg, 49, found herself caught in a harrowing battle against cervical cancer. The initial diagnosis in January 2021 revealed she was in stage 2B, leading her to undergo the standard treatment prescribed in Australia. After only seven months of treatment, and one month in remission, Ms Hilgenberg’s condition took a tragic and unexpected turn when she was faced with stage 4 terminal cancer. It wasn't until she went against the standard of care and discovered genomic testing and immunotherapy that saved her life.

Ms Hillenberg was a healthy and active mid-forty-year-old, with two children, one being seven years old at the time of her first diagnosis. With her whole life ahead of her, together with her devoted partner, they were determined to beat the disease, even though it was the “hardest thing [she] has ever done”, Ms Hillenberg said.

“I was told my cancer would be contained and that my standard of care would involve a series of chemotherapy and to conclude, brachytherapy. I googled it and was horrified. I was told that this treatment most likely would kill it all off”, she said.

Ms. Hillenberg was emotionally and physically drained from the grueling treatments by the standard of care. Despite being advised that the radiation and chemotherapy had “done wonders” with her type of cancer, shrinking the tumors down to almost nothing from an initial 6cm, the worst was still

Ms. Hillenberg was traumatised even before the brachytherapy part of her treatment started. She asked whether she needed to do it and was told “It was all or nothing”.

“Brachytherapy is when one is placed under an epidural on a bed in complete isolation with no food or drinks for two and a half days. The sticks (five or so) are inserted vaginally and connected to a radioactive machine near the bed which gave impulses every 30 minutes. Every 30 minutes, for two and a half days”, she said, “the mattress was hard as stone and my back was aching. I cried and I thought of my girls - I did this for them, my partner, and my family”.

After undergoing six months of treatment, doctors declared Ms. Hillenberg cancer-free and in remission. However, celebrations were cut short, for merely one month had passed when she experienced “excruciating pain” in her hip, leaving her barely unable to walk.

In July 2021, the same practitioner who declared her cancer-free denied her a lifesaving MRI, due to the fact it was outside the standard of care. Ms Hillenberg pushed the system and unaware that the pain in her hip which was brushed off as being a sports injury would result in a devastating phone call with the worst news imaginable– her cancer had spread to her hip and her lymph nodes. She was terminal and there was nothing that the standard of care could offer her.

Her partner, Michael Sommer, who had been by her side throughout the ordeal, found himself thrust into the role of caregiver. “It was difficult to adjust to, not knowing what my role was”, he said.

“When hearing the news that the cancer had spread, I was obviously devastated. I remember crying, it is one of those things that you always hear of people getting cancer but when it happens to someone you love, it is a surreal feeling”.

All that could be offered to her was a sincere apology from her practitioner, and even though her situation was now critical, Ms. Hillenberg described “waiting for weeks at a time to get any answers”.

“Nina is a fighter, and her initial reaction was “no, this cannot be right”, said Mr. Sommer, “she was what is called the ‘patient from hell’ – in the best way – where she had to push the system to be heard”. Dr. Jim Coward, a social professor and UK-trained medical oncology specialist in South Brisbane's Icon Centre, took on Ms. Hillenberg's case, giving her and her family hope that her

Dr. Jim Coward, a social professor and UK-trained medical oncology specialist in South Brisbane's Icon Centre, took on Ms. Hillenberg's case, giving her and her family hope that her cancer wouldn't be a death sentence.

Going against the standard of care, Dr. Coward requested a genomic test to be done, an expensive but necessary tool that cost Ms. Hillenberg over $10,000. This test uncovered that her body exhibited sensitivity to radiation, implying that her previous treatments not only failed but also exacerbated her already existing mutated cells.

Dr. Coward exclaims, “The problem with [Nina’s] case is that she had a nasty cancer where it was resistant to [the standard of care treatments]. The advantage is that we were able to treat her with immunotherapy which is not within the standard of care”

“The treatment that she had before upregulated certain inflammatory pathways which inhibited the immune system to overcome the development of cancer”, he said.

This was the first time Ms. Hillenberg had heard of genomic testing or immunotherapy – ten months into treatment and after being declared terminally ill.

“I will never forget the feeling of leaving Dr. Coward’s office. For the first time in ten months, I felt heard”, Ms. Hillenberg said. She became patient 01 in an experimental treatment called SHR1701 shortly after first seeing Dr. Coward.

This unique case was a breakthrough as Dr. Coward said, “She is still responding to this day [more than 18 months after starting treatment]. I have never ever seen this before for someone that has chemo and radio-resistant disease”.

Genomic testing is a tool that is relatively well known and used in various parts of the world but a new concept to the Australian healthcare system. According to the Genomics for Life website, “cancer is caused by errors in the genome, known as mutations which can occur randomly when copying, by environmental damage or a genetic predisposition” (Genomics for Life, 2023).

This type of testing is a breakthrough within the cancer community as it helps understand the individual's body and aids in appropriate treatment. The only problem is the lack of funding, making it incredibly difficult to access, with extensive test costs starting from $10,000.

The initiative at the start of 2023 to provide free testing for cancer patients under the age of 18 is a step in the right direction, but the question remains: what about all the existing patients like Ms. Hillenberg where bodies are not suited for the standard of care and a genomic test is what could not only prolong their life but potentially save it?

Dr. Jim Coward sheds light on the situation, “The big hole lies in patients who get cancers that aren’t familiar, there is not a framework for that, and the number of patients I have changed the outcome of their disease [with genomic testing] but they have had to pay for it… this shouldn’t be the case.”

“The case should be that all patients that come through clinics like mine sign a form whereby their tissue or blood is sent off to a lab for genomic analysis. This is what can prolong someone’s life with the treatments that they're on.”

“What we need is all tumor types and all patients at every stage of their journey to have this test… that can inform what particular treatment we can add on to the standard of care chemotherapy”, he said.

According to the National Library of Medicine, funding for genomic testing varies in different countries like the United Kingdom, the United States, and Canada. Both the United Kingdom and Canada's funding is provided at a national level by the WES and WGS, whereas the United States' funding is depended on the payer and the tests taken, but still, some financial aid is provided (Phillips et al., 2021).

This is still a massive difference in comparison to Australia where funding is completely dependent on the individual, and all of it is out of pocket.

Dr. Jim Coward has seen many patients with similar circumstances to Ms. Hillenberg, where genomic testing could have saved a lot of time and resources.

He highlights, “It’s the expense at the moment that is the main problem, but it is a relatively new [form of testing in Australia] where the horrible thing is I have to get people to pay for it in large if it lies outside the influence of Standard of Care”.

Ms. Hillenberg has fought for her life for more than two years, enduring extensive

treatment. Reflecting on her life prior to her cancer diagnosis, Ms. Hillenberg was a beloved and devoted teacher. “I lecture design at Torrens University full-time for over ten years- or I did. I loved my job very much and would go well beyond what was asked of me to support our talented students at university and, when spreading their wings, help them look for employment”.

Ms. Hillenberg has had to adjust to a new way of living, dealing with the consequences of radiation and chemotherapy. “Intensive radiotherapy caused my hip to fracture. A fracture that, after 18 months, still has not healed and most likely never will. It also caused internal damage to my lower bowel, another health problem I today have to deal with”.

Severe radio damage to her lower bowel made it impossible for Ms. Hillenberg to maintain a nutritious diet. This led to her weight to plumet to 38kg, just over the average weight for her daughter – now 10 years old – and is required to be fed through a tube to gain the strength needed to fight her cancer.

“I have been failed by the system”, Ms. Hillenberg said. This situation has led to an official complaint, hoping to bring about changes to the standard of care so that others won't have to experience what she has gone through over the past 30 months.