A woman has said her ovarian cancer diagnosis was delayed after her symptoms were wrongly dismissed as menopause or irritable bowel syndrome (IBS) – accusing her doctor of misogyny and medically gaslighting her.
Sbba Siddique, a 55-year-old business owner, told The Independent that “unconscious bias and cultural incompetence” were also to blame for her delayed diagnosis.
Ms Siddique, who lives in Berkshire, said she began to feel unwell around October 2021 but did not get diagnosed with late-stage ovarian cancer until March the following year.
“I was feeling really tired all the time. I had no energy. I was piling on weight that wasn’t there previously despite not changing my eating habits. I was needing to wee more,” the mother of three recalled.
“I was going back and forth with my GP trying to get an appointment. I couldn’t get a face-to-face – every consultation was on the phone or via online forms. That was part of the problem of the misdiagnosis.”
Her GP was “very dismissive” of her symptoms and attributed them to IBS or the menopause, she added.
“At the end of the day, I’m not the expert, the GP is – I believed him,” she said.
Ms Siddique, co-founder of Asian Star Radio, said she accepted his diagnosis until a routine in-person appointment with her dermatologist who sensed something was wrong.
“She said: ‘Are you OK? Your tummy doesn’t look right.’ My tummy looked like I was six months pregnant,” she recalled. “I wonder what would have happened if I hadn’t seen my dermatologist. I would have believed what my GP was saying. It would have got worse. I would have probably gone in by A&E admission.”
Ms Siddique went on to be diagnosed with stage 3 cancer – the stage of the disease, she explained, that comes just before stage 4, which is often terminal.
She added: “As women of colour, we are unintentionally disadvantaged. It is a system that is just not designed for someone like me – for a middle-aged woman of colour. There are unconscious biases at play; the system isn’t designed for diverse patients.
“There was unconscious bias, cultural incompetence and medical gaslighting to some extent. It was easier to fob me off and dismiss me as a menopausal woman making a fuss.”
Ms Siddique said it is likely she would have avoided invasive treatment that has now left her with permanent disabilities if her cancer diagnosis had not been delayed.
“I had IV chemo – four rounds through a cannula on the arm. I did that for 12 weeks. One of the side effects is peripheral neuropathy from damaged nerve endings in the hands and feet.
“I have a lot of pain when walking and sitting, I can’t sit on the floor any longer, I can’t walk long distances. I can no longer wear high heels. I was extremely active prior to my diagnosis.”
The IV chemo also caused debilitating fatigue, nausea, vomiting, constipation and hair loss, she added.
She explained how the oral chemotherapy resulted in her developing a rash, adding that she still suffers from PTSD as a consequence.
“The rash started on my face and it looked like teenage acne. Then it literally spread to my chest and then to my whole body – by this time it had mutated and its appearance had changed,” Ms Siddique added.
“I was on that medication for seven weeks and was hospitalised four times. A&E doctors said the rash was what an acid burn victim would look like. The rash was dry, flaky, red, raw and itchy. I would stand up and there would be a puddle of skin.”
She explained side effects from the rash caused her to pass out from exhaustion – adding that she was “broken physically and mentally”.
It is now just over a year since Ms Siddique was told she was wholly cancer-free – something she describes as a miracle and attributes to her Muslim faith keeping her grounded as well as the support of her loved ones
“There is no doubt the NHS needs more funding,” she concluded. “This needs to be sustained and not a sticking plaster but a long-term policy around cancer care. But there also needs to be systemic change to account for patients’ cultural and religious nuances. You know your body best. You know what your normal is and if something doesn’t feel right, then go and get it checked.”
Janet Lindsay, chief executive of women’s health charity Wellbeing of Women, warned ovarian cancer is often diagnosed at the late stages when treatments can be less effective.
“We know that those from ethnic minority backgrounds in the UK require more visits to the GP, have to wait longer for diagnosis, and are often diagnosed with later-stage cancers,” she added.
Ms Lindsay, whose organisation has launched a fundraising campaign for research into the treatment and diagnosis of gynaecological cancers, said: “Every year, 7,500 women are diagnosed with ovarian cancer in the United Kingdom, and around 4,100 die of the disease, which is 11 women each day. There’s an urgent need to improve survival.”
Dr Victoria Tzortziou Brown, vice chair of the Royal College of GPs, said: “We want all women, regardless of their background or circumstances, to feel comfortable approaching their GP if they are experiencing any painful or worrying symptoms and we are always concerned to hear reports of patients not feeling this has been the case.
“We can’t comment on specific cases as we don’t have all the details but GPs aim to do the best for their patients; we are highly trained and experienced in having open, confidential and honest conversations, working with our patients to come up with the most appropriate treatment plan, based on their unique health needs.
“However, we currently have a severe shortage of GPs and it is becoming increasingly difficult to give patients the time and safe care they deserve, which is why we are encouraged by the new government’s pledge of more funding and support for the family doctor service.”
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