“I’d been to my GP for help more times than I can remember…but each time sent away and told that the issue was my fat body - not the 4kg cancerous tumour growing and advancing inside me.”
Sarah-Jane (She/Her) describes herself as a 47-year-old unapologetically queer, fat woman from Manchester. In October 2019 her world was turned upside down when she was diagnosed with ovarian cancer and womb cancer.
She’d been suffering for more than two years with pain, fatigue, bloating, sickness, changes to her bowel habits, irregular bleeding, an inability to eat more than a couple of mouthfuls of food, shortness of breath and weight loss. Despite her body telling her that something was wrong, every time she went to see a doctor, she was given pain medication or anti-sickness tablets to help with her symptoms. She vividly describes how she was fat shamed: repeatedly being sent away and told that all her symptoms were happening because she was fat; and would stop if she lost weight. She wasn’t examined, offered a blood test, or referral. Her unexplained weight loss was celebrated, and her shortness of breath was because she ‘was unfit’. Her inability to eat wasn’t believed.
Sarah-Jane told me:
“It took a doctor that looked like me to listen. She was the first doctor in two years to physically examine me, and as soon as she did, she could feel my tumour. Six hours later after an emergency CT scan I was told that they had found a 4kg mass measuring 20cm x 20cm x 19cm which was filling my abdomen, crushing other organs, causing damage to my bowel and pushing up into my diaphragm - reducing my lung capacity and ability to breathe. Eight weeks later after major abdominal surgery to save my life; removing my tumour, appendix, omentum, womb, cervix, ovaries, vagina, and a bowel resection I heard the words that nobody wants to hear…
“We found advanced ovarian cancer and womb cancer”.
“Two primary cancers”
“Too advanced to cure”
“Should see 4 years”.
I was 42 and had every symptom of womb and ovarian cancer. I’d been to my GP for help more times than I can remember with every one of those symptoms, but each time sent away and told that the issue was my fat body - not the 4kg cancerous tumour growing and advancing inside me, limiting my life. My life has changed so much since my surgery and diagnosis, I very much ‘live with cancer’ daily medications, and in 3-month cycles of blood tests and scans waiting for the day when tell me my cancer is growing again.”
Sarah now shares her lived experience with healthcare professionals and medical students: the reality of the medical weight stigma she experienced before and during her cancer treatment; the impact of the unhelpful heteronormative assumption’s about her sexuality made by the people treating her; and the added layer of shame that was caused by her doctors and nurses who weren’t able to say the words “vulva” or “vagina” without being embarrassed. She describes how that embarrassment means she was never fully informed about the surgery she had consented to; nobody told her that she would be left with only 2cm of vagina; nobody explained how a surgery that removed the whole of her reproductive system causing a surgical menopause would change how she feels and experiences sex and intimacy with a body changed by cancer.
She told me:
“Ovarian cancer is classed as a ‘rare’ cancer but one that still kills 22 people born with ovaries every day in this country. If we are ‘lucky’ enough to have our symptoms taken seriously and our cancer found at an early stage we have a 92% chance of living 5 years or more, but that’s not how it happens with gynaecological cancers particularly ovarian cancer. Seen by society as an “old woman’s cancer” means that there’s no funding for research, our survival rates haven’t changed since the 1970’s. With no effective screening it’s often called “a silent killer” but this just isn’t true my body was screaming out that something wasn’t right, like so many others with this cancer. Medical weight stigma allowed my cancer to grow unchecked, many others are medically gaslit and told that we don’t know what’s happening to our bodies or the pain we are experiencing is considered a ‘normal’ part of ‘womanhood’, leaving our symptoms to go unheard, untested and untreated until it’s too late.”
With huge thanks to Sarah-Jane for sharing her story with me, and for encouraging me to keep exploring this topic. You can follow Sarah and find out more about her experience through the following links.
Sarah’s Instagram.
Sarah’s story: we need to talk about sex and cancer Macmillan Cancer video.
One of the most common stories that my Whose Menopause? project highlighted was the inequitable and inequal experiences of the LGBTQ+ community when accessing the healthcare system with gynaecological complaints. I’m exploring this further in some new R&D work.
Are you LGBTQ+? Do you have a gynae or gynae cancer story you think is important to share? I’d love to hear from you.