For 10 years Bina Dhaliwal had been going to the doctor with strange but very persistent symptoms. Each time there would be a scratch of the head over the latest problem. Everything from bloating and cramping to heart palpitations.
It was only when she was settling into her life with her new husband that the 38-year-old Customer Experience Manager from London discovered the grim reason behind her many trips to the doctor. “I was in my early thirties, recently married to the love of my life,” Bina remembers.
“We were thrilled to begin our journey together as we settled into our new home and were planning for a future that included children, career progression and all the things one would expect at that juncture of life. It took years of visiting my GP with symptoms of anaemia and anxiety before things became clearer.
“One day, a locum doctor I’d never met before decided to refer me for an ultrasound to check for any underlying issues. During the scan, they noticed abnormal fluid and recommended an MRI for further investigation. After the MRI, I was referred to a gynaecologist.
“The consultant explained the MRI results showed tumours in my abdomen, reproductive system, and on several vital organs. A Macmillan nurse was also present during the consultation, and that’s when I realised the severity of the matter.
“I recall visiting my GP a number of times due to heart palpitations and high anxiety, I was even admitted to hospital because of this but it was dismissed as depression and I was offered antidepressants – it turns out I was actually going through perimenopause as the cancer had spread to my ovaries. My surgeon said I could have been carrying my cancer for as long as 10 years. The symptoms are generally nonspecific and included bloating and cramping that worsened during my period.”
She was diagnosed with pseudomyxoma peritonei (PMP), a rare form of cancer that affects just one in a million people each year. Even once Bina found out that she had cancer, the journey to a full diagnosis was complicated.
“The diagnosis for pseudomyxoma peritonei isn’t straightforward and with that comes a rollercoaster of emotions,” she explains. “In my case I was diagnosed with suspected ovarian cancer, then cystic mesothelioma before being referred to a specialist who finally told me I have pseudomyxoma peritonei which originated from my appendix.
“At each intersection I was met with blow after blow of bad news followed by stern looks from the different consultants I was referred to. I was upset that I had to leave work and put my career and ultimately my entire life on hold.
“When I saw the consultant that diagnosed me with pseudomyxoma peritonei I was told I could have curative treatment. That gave me hope but the procedure was a significant 16-hour operation with the removal of many organs and a hysterectomy, robbing my husband and I of our chance of being parents.”
Bina had to undergo a gruelling treatment plan that included the “Mother Of All Surgeries” (MOAS). The only treatment option for PMP patients, it consists of a total hysterectomy, splenectomy, appendectomy, peritonectomy, right-side hemicolectomy, cholecystectomy and scraping of the liver and diaphragms.
After the organs are removed the entire abdomen is pumped full of heated chemotherapy but despite all of these efforts many patients experience recurrence. Unfortunately, Bina did too.
“I would say that the build-up to treatment is worse than the process of the treatment,” she said. “The first week of recovery after such a huge procedure was indeed hard but a price I was prepared to pay to be cancer-free.
“Sadly, in my case and for so many others, the cancer returned, so it makes the sacrifice of organs and a year in recovery harder to accept. The idea of being unconscious for an entire day whilst having multiple organs removed and then wondering what type of person you will be when you wake up and the quality of life to expect are all terrifying thoughts that haunted me, including the fear of not waking up.
“The staff at Basingstoke Colorectal looked after me really well. Meeting with them was a turning point for me. They knew when to be empathetic and when to be serious and coached me towards having the strength I needed to go ahead with the procedure which ultimately saved my life.”
Bina wants to raise awareness of her rare cancer, and wants there to be more research and finances allocated to treating it. “Pseudomyxoma peritonei is a cancer that starts in the appendix,” she explained.
“It has robbed the lives of so many people, including that of Audrey Hepburn. Because it’s classed as a rare disease there is little to no research in identifying new treatment strategies.
“It’s been treated the same way for more than 30 years. Chemotherapy for patients who have recurrence or inoperable cancer shows little to no efficacy and just makes them unwell. It’s a terrifying disease that seems to be overlooked by mainstream cancer researchers and pharmaceutical companies.”
Bina and her husband have now set up https://binatherapeutics.com/ to improve the treatment strategy for pseudomyxoma peritonei.
“My husband connected with researchers from the UK and USA to improve the treatment strategy for pseudomyxoma patients,” Bina said. “He named it Bina Therapeutics and I hope that someday our experience will be able to help others.
“I feel better than I did having gone through the operation and recovery period. I was diagnosed with recurrence 12 months to the date of my surgery and in my recent scans show signs of progression so I will soon be starting chemotherapy.
“I am of course scared, but I am reassured by my loved ones and husband who has stood by me and built an organisation to help find and treat pseudomyxoma peritonei.”