Ning Yu, Hertfordshire

Ning shared their story with us in 2022. Sadly Ning passed away in July 2023. The following article was originally published in March 2022.

I was diagnosed with bowel cancer in March 2020 at the age of 41.

The first symptoms I experienced were around three years before my diagnosis. I had lingering discomfort of bloating, bad lower back pain and a few episodes of urine/kidney infections. I was referred for a private endoscopy and was told it was to do with stomach acids. I put this down to my high stress life and long commute to work. Two year before my diagnosis, I started regular exercise, including running and aerial silk, to ease my back pain.

Then on Saturday 15 February 2020 I suddenly started to get pain. I noticed discomfort when sitting down and within a day, even walking was causing pain. I sought an out-of-hour GP who thought it was possibly some sort of infection. On Sunday, I started to experience some brown spotting. On Monday 17 February 2020, the pain was getting worse when walking, so I called a private GP in the morning. She had concerns of bleeding in the higher GI track and recommended I go to A&E straightaway. By the time I was seen at 8pm there was blood in my urine and I became really ill. The A&E doctor thought I may have a kidney/bladder infection and gave me a CT scan and fluids as I was about ready to collapse. I was admitted as an inpatient that night.

The CT scan showed a 10-12cm mass in my right ovary which they thought may be a fibroid so they admitted me and carried out an ultrasound and MRI the next day. Although my CA-125 was normal (blood biomarker for ovarian cancer), they thought the fibroid may still be cancerous and wanted to open me up to explore on Wednesday. However the surgery was cancelled due to too many emergencies using the only emergency surgical theatre. To compensate, the doctor ordered a colonoscopy, which took place on Friday afternoon. I requested to be released from hospital as nothing would happen over the weekend and I'm a single parent with two young children.

Following this I was given an outpatient appointment to see a gynaecologist and a CNS nurse about my ovarian cancer. At the appointment I asked her my colonoscopy report and she said it was not her speciality. I asked her to read the report out as I work in oncology. From that point, I knew it was a bowel cancer with ovarian metastasis. I was then referred to a colorectal consultant in addition to gynaecology, and I had a further thorax scan. At this point, my manager at work recommended a colorectal surgeon to me and persuaded me to go private in light of COVID-19.

On 10 March 2020, I underwent a repeat colonoscopy by my private surgeon. He found a tumour in the sigmoid colon and could not complete the colonoscopy any further. I transferred all my NHS imaging reports to him. The multidisciplinary team reviewed my NHS notes and said there was also something on my liver as well however it was probably benign but just in case they organised a PET scan and liver MRI, and pencilled me in for open colon surgery on 17 March, as well as to remove my ovarian metastasis.

On 13 March after the PET scan, I felt really sick and in pain shortly in my taxi ride to home. The driver was worried that I had COVID as people were just starting to get sick. I told him I didn't but was a cancer patient. He took me back to the private hospital and I asked staff to save me. I passed out. The duty staff gave me fluids and painkillers and called my friend and doctors. However, it was just before lockdown was announced so all my private surgeons were out of London. An ambulance transferred me to University College London Hospital where I was given an ultrasound and fluid. I was kept in hospital until 16 March 2020.

I had my surgery on 17 March 2020 as planned. There were three surgeons working on me. One gynaecologist for my ovarian metastasis and two colorectal surgeons for my bowel cancer. When I woke up they told me it was the most difficult ovarian mass they had removed an almost 15cm diameter mass together with my right ovary. They fitted a stoma bag and told me chemotherapy was my only hope to live. I was also told my liver metastases which can be removed at a later stage after chemotherapy. I stayed in hospital until 26 March and was sent all my histology reports at the end of March. My diagnosis was pT4aN2bM1b (8/20 LN+), Synchronous ovarian deposit and liver two metastases, aka Stage 4 bowel cancer with ovary and liver metastases.

From April 2020, I became under the care of my current oncologist, who told me I would need six cycles of bi-weekly chemotherapy of FOLFOX-Bevacizumab followed by another PET-CT, then potential liver surgery. I had a port-cath fitted on my chest and began my chemotherapy at the end of April. The first round hit me like a big red bus. My body then got used to it from the second cycle however they did have to reduce the dose. I was very fortunate to receive my chemotherapy at home amidst COVID lockdown. By mid-July, I completed all six cycles of neo-adjuvant chemotherapy and the PET-CT showed no sign of cancer except in the liver. I was working full time throughout my treatment with ad hoc sick leaves only for my treatment hours.

On 11 August 2020, I had my liver surgery performed with robotic arms. Although the procedure was minimal invasive, the recovery was painful as it had damaged the surrounding diaphragm. I was kept in hospital for a week. Walking was the best way to recover from post-surgical pain. On 25 August, I was informed disease free by my liver surgeon. I had to give up work and be on sick leave, to allow me concentrating on my recovery, looking after my two young children with home schooling, as well as continuing through extremely stressful divorce proceeding for domestic abuse.

I was told to start another six cycles of peri-operative chemotherapy. At the end September I resumed same regimen from home. Unfortunately, I had an acute allergic reaction to Oxaliplatin at in early October and completed passed out. The nurse and ambulatory team saved my life. They tried desensitizing my reaction at hospital but had to give up Oxaliplatin completely post cycle eight.

I finished all twelve cycles of chemotherapy on Christmas Eve 2020 and then had a PET scan in January 2021 which showed I was cancer free. I had my port-cath removed in March 2021. Unfortunately, at my three-monthly checkup in June 2021, it showed lymph nodes recurrence. Due to the multiple lymph nodes involved, I could not receive radiotherapy. The plan was to receive another six cycles of bi-weekly chemotherapy first and then to consider radiotherapy. I started my chemotherapy again in July 2021 which was given via a PICC line. This time was FOLFIRI-Bevacizumab, replacing Oxaliplatin with Irinotecan. I developed heart palpitations with the treatment. The cardiac doctors could not identify any systematic heart problems but said it doesn't mean I won't have sudden heart problem, and the reaction should to do with 5FU. I stopped after five cycles as I couldn't cope anymore.

My follow up in September 2021 showed no new occurrence. I could be a candidate for radiotherapy. However, after learning that the treatment would be daily treatment for five-consecutive weeks with cumulative side effect, I decided to wait and watch.

In October 2021, I started to experience severe back and abdominal pains. There was concern of spinal cord compression. I was admitted to hospital as a medical emergency and the scan showed a 5cm mass on my left ovary but no bone lesion. Fortunately, a week later, on both PET-CT and MRI scans the mass has disappeared. It was apparently a physiological one. However PET-CT indicated the lymph nodes appeared to be more active and radiotherapy would not be the ideal option. Therefore, I was re-challenged with four cycles of CAPIRI-Bev, which was IV infusion and two-week oral capecitabine every three week. I had to stop days after my third cycle due to COVID-19 infection. I received COVID-19 infusion on the third day of positive COVID test. Although I lost my sense of taste and smell completely, I felt significantly better after the infusion. Upon negative COVID PCR test, I resumed my fourth cycle and completed all treatment on the 24 February 2022. Following my recent repeat PET-CT scan, I was informed with amazing news of complete metabolic response on the 4 March 2022. I and my family and friends are thrilled with the news. There is still plan for some radiotherapy to consolidate the treatment, of which, I am waiting for further confirmation.

Apart from living through a very high-intense life, I do not drink or smoke, I did not have any other co-morbidity prior to my diagnosis. My diagnosis at my age was nasty. Compounded with all the other factors (COVID-19, endless aggressive divorce proceeding for domestic abuse, home schooling of two young children) my journey of fighting in the past two years has been extremely brutal. Nevertheless, I am surviving into my two-year mark as a stage 4 cancer patient. Despite being in oncology research, I have been holding "knowing the bare minimum" attitude towards my own condition, so that I would not be put off by the scary statistics. However, I did seek for psychological therapist help since March 2021 which has provided me valuable tools to cope with the stress and fear. I was introduced to PennyBrohn in August 2021, through which I was connected with a wide range of resources, including Bowel Cancer UK. They have been an immense help and uplifting to me. Being part of a new cancer community made me feel part of a big family. I am keen to share my story with the hope to help anybody with similar experiences, to seek early diagnosis and to cope with their treatment.

Listen to Ning talk about her bowel cancer diagnosis by watching the video below.