We need to talk about how ovarian cancer affects mental health
Ovarian cancer is the 6th most common cancer in females in the UK, with around 7,100 new cases being diagnosed each year. Incidence rates for the illness in the UK are highest in females aged 75-79, but it can affect women of any age.
Many women are unaware of the main symptoms, and often believe they are suffering from IBS, or a food intolerance, which can delay diagnosis allowing the cancer time to spread. Principal symptoms include persistent stomach pain, persistent bloating, difficulty eating and feeling full more quickly, and needing to wee more frequently. If your symptoms are persistent, severe, frequent, and out of the ordinary it is worth going to be checked by your doctor, although there is no cause for alarm as the same symptoms can be indicative of a range of less serious conditions, such as PCOS.
Fortunately, the outlook for some women with ovarian cancer can be positive, and more than a third of women diagnosed with ovarian cancer in England and Wales survive their disease for ten years or more. Survival rates are improving and have almost doubled in the last 40 years in UK.
While information about symptoms and prognosis can be found online, conversation around the emotional impact of being diagnosed with ovarian cancer is still lacking, however. This is despite the fact that the prevalence of depression and anxiety in women with ovarian cancer is much higher than that in the healthy female population.
Mental health prior to diagnosis
Gemma Thomas is one woman who suffered emotionally, as well as physically, prior to receiving a diagnosis of ovarian cancer aged 23. After originally being told she had IBS, she went back to her GP in severe pain but was told there was “nothing wrong physically”. “I left feeling completely embarrassed and despondent,” she says. “This emotional toil increased as the GP’s failure to diagnose me led to my family becoming less convinced that I was in as much pain as I claimed.”
Dr Steve Iley, medical director for Bupa UK, says that it is completely normal to feel worried or stressed if you’re experiencing symptoms and you’re not sure what’s causing them, and empathises the need of HCPs to take remember to take a holistic approach when treating someone with cancer.
Joan Idris, a nurse adviser at Target Ovarian Cancer adds that it is also a normal reaction to ‘fear the unknown’, which is why many people avoid going to the doctor in the first place. “Sometimes there is guilt that they ignored their symptoms and didn’t go to the doctor sooner, and worry that their health situation may be worse because of this,” she says.
The effect of diagnosis on mental health
Because of such a traumatic experience when her symptoms originally appeared, the actual diagnosis of ovarian cancer came almost as a relief to Gemma. She was admitted to A&E after suffering excruciating pain, and had her left ovary and fallopian tube removed as the result of a cyst. “The surgeon reassured me that I could still conceive with one ovary and left the ward,” says Gemma. “At no point was cancer ever discussed. I was emotionally fragile and confused, but I also felt relieved – a sense of vindication – to be taken seriously”
When she received the diagnosis a week later, she became “emotionally cold”, almost as if her diagnosis was fate. “I thought this was the universe’s way of teaching me a lesson,” she says. “And to some extent I accepted my fate.”
Of course, diagnosis of ovarian cancer will affect all women differently. While some women may find themselves experiencing depression or anxiety, others experience a process similar to grieving. “Others may have PTSD-type symptoms,” Joan adds, “because of traumatic experiences associated with the disease.”
Carol Bareham, 44, is one woman who felt her mental health was particularly affected by her diagnosis of ovarian cancer in 2015, and she says waiting for treatment to start was harder on her mental health than actually going through treatment. “Each day I was eating less, feeling weaker and living on painkillers,” she says. “All I wanted was for the chemo to start. My mental health was at its lowest a few days after each session of chemo as I suffered from severe constipation and nausea.”
How does ovarian cancer treatment affect mental health?
Conversely, for Gemma, the period after diagnosis and when she was going through treatment was the point at which Gemma says her mental health was probably at its best. “Strangely, my brain knew how to protect my body,” she remembers. “I had to conserve all my energy – mentally and physically – to get better.”
The main thing that got to Gemma during treatment, however, was that, aged 24, she was too old to be put on the young person’s ward, but everyone else having chemo was in their 60s, so she felt isolated. Nonetheless, the routine ‘bloods-clinic-chemo’ gave her a sense of purpose. It was only when she was discharged from ‘active treatment’ that her mental health struggles really started to become a problem.
Unfortunately, Gemma does not think she was given the mental health support that she needed. “I now feel that there is a real gap in services existing for younger women,” she says. “I wasn’t given any counselling or support – it was all just very clinical; and psychologically that was difficult to deal with after entering remission.”
Some five years after entering remission, Gemma ended up seeking counselling privately to deal with the repercussions of not having talked about or dealt with the mental effects of her counselling diagnosis at the time.
Carol, too, did not receive any specific treatment for her mental health while going through treatment for her cancer. “I was extremely lucky that I had all the support I needed in the form of some very dear “chemo buddies”,” she says. “A cancer patient’s mental health is seldom discussed while going through treatment. In fact, I found that my mental health suffered much more once treatment ended, and I felt like I’d been left in limbo.”
“Managing mental health needs is a crucial part of the treatment process, and may even impact prognosis but many cancer patients that are clinically depressed do not get the help they need,” says Joan. “Further education, training, and resources are needed to increase knowledge and awareness of this under-recognised issue.”
What emotional support is there available if you have been diagnosed with ovarian cancer?
Dr Iley highlights the role support networks can play in helping yourself deal with the emotional implications of diagnosis, treatment and after care. “Speak to your GP, as they should be able to let you know about any support networks for you. There are also lots of online resources, such as Bupa’s Oncology Support, Macmillan Cancer Support, and Mind.”
The main advice Gemma would now give to other young women in her situation is to not Google their prognosis. Web forums often contained horror stories, which left her with extreme, and at times crippling, anxiety. “Having cancer is life changing, of course it is,” she says. “But there is life after cancer. Talk about how you are feeling. Do not feel like you are being ‘silly’ or ‘dramatic’; your emotions are yours and you are entitled to every one of them.”
If support groups work for you and you are available to go, Gemma encourages people to use them. Otherwise, she advises one-to-one counselling. “Don’t just do nothing,” she says. “Repressing your feelings will only lead to a bigger problem to deal with later down the line.”
Carol, too, emphasises the need to build up a support group, which can even just be done by talking to fellow patients while you are having chemo. She adds that joining ovarian cancer support groups on Facebook has also been hugely beneficial. “No-one knows what it is like living with an ovarian cancer diagnosis, so finding a network of fellow cancer patients has really made a huge difference to my, and their, mental health.”