Sara’s Story

In October 2023, I celebrated turning 50. In February this year, I enjoyed walking 73.5kms of the Queen Charlotte Track. In April, I got a shock diagnosis of Stage IV bowel cancer.

I consider myself fit and healthy. Working in the wellness industry as a massage therapist, I was the one advising others on how to maintain good health. I ate a balanced diet, exercised regularly and was proactive about managing my health. Leading up to the diagnosis, my only symptom was an irritated stomach over a few months. This intensified to stomach spasms with pain that moved around but was mostly concentrated on the right-hand side. I had eaten a salad of raw cabbage the day before and thought it was strange that my digestion system was having trouble processing it. This prompted me to visit the doctor to request a colonoscopy, which I had the following week.

After the colonoscopy, I was taken to a small room, still groggy from sedation, and handed some photos. I was told I had cancer in my hepatic flexure, which that the scope could not get through as it was obstructing the bowel. I was given forms for a CT scan and a blood test. I needed to go across the road in an hour for an urgent CT while the IV line was in my arm and there was no food in my stomach. Shock set in when the doctor left the room. I started shaking and crying and could hear my mum distantly telling me to breathe and saying a prayer for me. Mum and I walked, dazed trying to find radiography. I was taken straight in and instructed to lie down on a machine. I felt the warmth of something being injected while I slid in and out of the machine. I tried to follow its instructions to breathe in, hold my breath and breathe out while trying not to cry.

The afternoon was full of tears, googling, and sending messages to people to share the sad news. I received the results of the CT scan late on Friday afternoon. The doctor said there was no spread to the lungs or the liver, but there might be something showing in the peritoneum. Initially, I thought this wasn’t so bad, but after googling, I realised this was one of the worst places for cancer spread.I was referred to a surgeon the following week. The surgeon confirmed I had a hepatic flexure adenocarcinoma. My blood tests were normal, except from low ferritin. My CEA, a cancer marker, was within normal range, but she confirmed the CT results had detected some deposits consistent with peritoneal metastases. She explained that she wanted me to have an urgent PET scan to determine whether these lesions seen on the CT scan were indeed hot spots. She found it strange given that they were on the opposite side from the tumour.

The wait for the PET scan felt excruciating. I visited the GP to get something for the overwhelming panic and anxiety I was feeling. With some Lorazepam and a new prescription for sleeping tablets, I went home to try and process the news and had honest conversations about what may happen with my family. I am a mother of three girls. Two are young adults who have left home but still need their mum. My youngest is 15 but has a rare chromosome disorder that causes autism, epilepsy, and intellectual disability. I am her advocate and caregiver. I felt as though I was waiting for a sentence to be passed down. I had no control over determining not only my future life, but that of everyone around me.

Over the next week I learnt that the PET scan showed hot spots on my peritoneum. An MRI investigated a cyst on my liver (thankfully just a cyst), and an ultrasound checked my thyroid (no malignancy discovered, but it is being monitored). The oncologist told me I have stage IV cancer and am “palliative”. It was explained that palliative in this instance did not mean end-of-life care right now but is a medical term used because the cancer is not curable. A drug trial was suggested, but there are strict criteria, and I need to pass all the requirements. This would give me two lines of treatment at once, rather than giving one and offering another if that doesn’t work.

The bad news kept coming. The biopsy of the tumour showed a BRAF mutation. This means there was a mutation in the BRAF gene that causes the gene to turn on the protein and keep it on, signaling certain cells to keep dividing indefinitely, which can cause tumours.

I am advised to watch my diet and eat low fibre to avoid a bowel obstruction, and surgery is set for the end of May. The plan was for a staging laparoscopy to assess the extent of the spread. If widespread, the primary tumour would be removed, and I would start chemotherapy. If it is not widespread, I would get a stoma bag, the primary tumour would remain in situ, and chemotherapy would start immediately. If the tumours responded to chemotherapy, they would all be removed later with open surgery.

It felt like my life had come to a standstill and lost all meaning. I was aware I should be trying to enjoy this time feeling relatively well, but nothing had any appeal other than being with the people I love. At the same time catching up with people felt emotionally exhausting. There were a lot of tears – actually, not just tears, heart-wrenching sobs. It felt strange that people were grieving for me when I was still here. People did not know what to say. I wouldn’t know what to say either. No one was telling me it was going to be okay.

Just when I was wondering how I would survive the unbearable wait until surgery, a meal of creamed mushrooms (who knew they had so much fibre) landed me in the ER at Auckland Hospital with a partial bowel obstruction. I stayed for four nights, hoping to bring my surgery forward through the public rather than the private health system. This did not end up happening, and I was kept on a liquid diet until the surgery.

The surgery took place at the end of May. Shock twist – the peritoneal metastases were not cancer! The lesions that did not look like cancer were biopsied during the operation and came back clear, so a decision was made to continue with the right hemicolectomy.

My husband was told the cancer is curative and had not spread. However, this news was a little premature. The surgeon found three suspicious spots on the omentum, the fatty part of the peritoneum close to the tumour, and managed to remove these as well. I was relieved not to wake up with cancer still inside me, relying on the drug trial and chemo to shrink it. Upon waking, I learned that I lack an enzyme (DPYD) that processes one of the chemotherapy drugs (5-FU). It is a rare deficiency affecting 2-8% of the population, which immediately made me ineligible for the trial.

I have four port marks from the laparoscopy that are glued and healing well, and an incision through my belly button. A significant portion of my bowel has been cut away, rejoined, and moved around inside that I cannot see. After spending five nights in the comfort of Mercy Hospital, I returned home, to concentrate on healing.

I once again received the dreaded call from the surgeon, asking whether I had support with me. Although this was better than the original prognosis, it still wasn’t great. From the histology report I am stage IV, T4N2M1. Stage IV means the cancer has spread to other parts of the body. T4 indicates it has gone through four layers of the bowel wall. N2 means that 4 out of 19 lymph nodes taken were positive for cancer (n1 is up to 3 lymph nodes, n2 is 4 or more lymph nodes). M1 indicates five deposits on the omentum were positive for cancer from the colon. The primary tumour size was 30x60mm.

When visiting the oncologist to get my treatment plan, he apologised for giving me the previous palliative staging and pointed out several people reviewed the scan. I would soon get a portacath under sedation, which would be placed under the skin on my chest and is how the chemotherapy is administered rather than through an IV in my arm. Then I would start the Folfox chemotherapy regimen. One part is given via infusion at the clinic, and then I am sent home with a portable pump that runs for 46 hours. The plan is to have this treatment every 14 days for six months. The list of side effects is daunting. I am also more at higher risk of developing severe diarrhea and colitis due to the DPYD variant I have.

Having now completed three rounds of the “liquid gold” (aka chemotherapy), I am tolerating it well, much to the oncologist’s surprise. I started at 50% and now am on 70% and will soon move to 80%. During the first round, I had bad reflux and a come-down from the steroids they give you for a couple of days to help with side effects. Some omeprazole and some extended tapered steroids have helped. The seven days of chemotherapy effects start with cold sensitivity from one of the chemo drugs, followed by nausea and fatigue. The mental challenge during this time is harder than the side effects for me. I know I cannot be positive all the time, but I prefer it when my mind is a more pleasant place to be.

I am trying a holistic approach to give my body the best chance to heal and deal with the toxic load I endure every fortnight. I do light exercise every day, even when I really do not want to, such as yoga and walking the dog. I eat well, take supplements, meditate, and write to offload to a group of supporters who accompany me on this rollercoaster journey. The support from my family, friends and community has been so crucial.

After my treatment I will be scanned and have blood tests regularly and a colonoscopy once per year. Like any cancer patient, I am simply, deeply hoping it does not come back.