Could that pain be ovarian cancer?

The symptoms of ovarian cancer can be extremely vague, particularly in its early stages,” says Chai chief executive, Lisa Steele. Signs include loss of appetite, pain in the abdomen as a whole or in the lower part of the abdomen that doesn’t go away, bloating and increase in the size of the abdomen, needing to pass urine more often and feeling full quickly. Other possible indicators could be unexpected tiredness, unexplained weight loss, changes in bowel habit or symptoms of irritable bowel syndrome, especially if this starts after the age of 50, irregular bleeding or bleeding after the menopause. “In many cases these may also be symptoms of other less serious conditions, but if you experience them or anything else that is not normal for you, then check with your doctor,” says Steele.

Over the past decade, ovarian cancer incidence rates have decreased by five per cent in females in the UK, although it is the sixth most common cancer, with around 7,300 new cases in 2017, according to Cancer Research UK.

In some cases ovarian cancer can be a result of mutations in the BRCA 1 and 2 genes (as explained opposite). These are strongly linked to an increased risk of breast, ovarian, prostate and pancreatic cancer. The Ashkenazi population has a high rate of carriers of BRCA mutations: about one in 40 compared to one in 800 in the general population. Although not every person who tests positive will get cancer, the risk can be greatly reduced if preventative measures are taken.

At the age of 56, Claire* was diagnosed with breast cancer: “In 2014, a routine mammogram showed I had DCIS (ductal carcinoma in situ), a non-invasive breast cancer, meaning the cancer had not spread beyond the milk ducts into any surrounding breast tissue. I was told I would need surgical intervention only and referred to have a mastectomy and reconstruction. With a very apparent family history of cancer in my grandparent’s generation, I asked if I needed to be tested for the BRCA gene but it wasn’t offered to me.

“Recovery from surgery was difficult, not only physically but emotionally too. I was just starting to feel like myself again when I found out my husband was not well and sadly he passed away in 2019.

“We went into lockdown when I was still dealing with bereavement and slowly piecing my life back together. A few months in, I started to feel like something wasn’t right, with constant bloating and discomfort, putting it down to possible IBS — I didn’t think for one minute that it would be ovarian cancer.

“I had blood tests, a CT scan, MRI scan and biopsy; it was horrendous. I was diagnosed with stage three/four ovarian cancer and underwent three cycles of chemo, a radical hysterectomy, followed by another three cycles of chemo.”

“Somebody mentioned Chai to me a few years ago but I didn’t think it was something I wanted or needed — but clearly I did! Chai has been an ongoing support for me and initially the big pull for me were the creative workshops. I have massively benefited from physiotherapy, acupuncture and reflexology and during lockdown music therapy over Zoom has really been my lifeline. Without it I would have completely fallen apart.

“I feel aggrieved that all of this could have been avoided if I had been offered the BRCA test earlier. I fell through the net but thankfully my most recent scan was clear. In two years’ time, I will have another mastectomy and reconstruction, but for now I am living in the moment.”

“It is important that people are aware that there is genetic testing available,” says Steele. “However, the decision of whether to be tested is very much up to the individual and their family dynamic. It is quite complex and there are implications for several generations in the family.”

Chai has responded to the increasing number of people who have tested positive for the BRCA gene with one-to-one or group support through the BRCA Awareness Group. “It’s very important that people are given the tools to make informed choices — knowledge is power,” says Lisa.

To find out more about Chai’s specialised cancer support services, call 020 8202 2211 or go to chaicancercare.org *Name has been changed due to client confidentiality