Cancer survivors face crippling anxiety and isolation after treatment

Cassie Burns fought to return to normal life after being given the green light with concerns about her physical changes and fears her ovarian cancer could return

Like many women diagnosed with ovarian cancer, it was gastrointestinal issues that prompted Cassie Burns to seek medical attention in July 2019. Her GP’s quick response meant Cassie received prompt treatment and ‘everything is clear’ in December 2019.

For the casual observer, everything was going great: Cassie then landed her dream job in health and social services, moved in with her devoted boyfriend, and had options in place so she could day to have children. But in reality, she was still in turmoil.

“A few weeks after my last chemotherapy session, I had a CT scan and there was no sign of cancer — it was gone,” says Cassie, 31, who had a cyst the size of a large watermelon on her ovary, which turned out to be early stage 1 ovarian cancer.

“I felt numb, despite the celebration. For about two years, I told myself that my cancer was a small problem in my life that I had to overcome. It’s only now that I realized how much it affected me. I keep wishing I was the person I was before and I find it hard to accept the person I am now.

It’s a story Macmillan Cancer Support staff know all too well.

“We find that people often need as much emotional support when they enter recovery as when they are diagnosed or during treatment,” says Rebecca Stead, service knowledge specialist at the charity.

“The consequences affect people in different ways. Some mistakenly believe that they should feel lucky or relieved, celebrate “returning to normal” and focus on the future.

“However, we find that survivors can feel isolated after treatment ends, when they don’t have this ‘bubble’ of health care and support.

Or they may feel guilty about the impact of their cancer on their loved ones and compare themselves to incurable cancer patients or those who did not survive. After treatment, many fear that the cancer will return.

Being upset in this way is known to trigger anxiety and it’s something Cassie, from Sheffield, has experienced.

“I have really depressed and anxious days,” she says.

She even avoided her parents because she felt guilty for putting them through such a difficult time.

“I get quite paranoid if I get a twinge and think the cancer might be back.”

Psychologist Simone Ruddick, who works with Perci Health, the UK’s first virtual cancer care clinic (percihealth.com), says this is far from uncommon.

“Everyone affected by cancer will experience some level of anxiety,” she says.

“Half of all people living beyond cancer struggle with fear of cancer recurrence. It is important to understand your personal triggers. Are there situations that cause anxiety, such as having a follow-up exam? Or can you notice ruminative thoughts that anticipate anxious feelings?

“If you learn to spot these triggers, you’ll be able to spot them when they happen and use techniques like CBT or mindfulness meditation to lessen them.”

The ongoing physical impacts of cancer may also be underestimated.

“There may be visible signs such as hair loss, weight changes and scarring,” says Rebecca.

“But there are also non-visible signs, such as fertility problems, changes in libido, fatigue and intestinal problems, which can have a significant psychological impact.”

Cassie even started to avoid going out with friends due to her anxiety and changes in her appearance.

“I was lucky not to lose all my hair during chemotherapy, but I lost chunks and as it was uneven I had to cut it short. I also took two stones, lost many the muscle mass and shape of my body and metabolism completely changed, so I can’t move the weight.

These changes often leave survivors feeling very alone.

Nevo Burrell, image consultant and stylist at Perci Health, says, “Peer support is often key here because if you experience something as a result of treatment, you can guarantee that others do too. You can always talk to your oncology nurse or cancer imaging expert for advice.

Charity Look Good, Feel Better offers online workshops to improve body image after cancer (lookgoodfeelbetter.co.uk).

Rebecca advises people to keep talking to their cancer teams about what to do after treatment is over.

“They can highlight symptoms to watch out for, explain how side effects or symptoms of treatment can be managed, and provide ideas for becoming more active and improving overall health,” she says.

“Talking can be really beneficial, so if you don’t want to open up to family and friends, Macmillan’s specially trained helpline counselors have no expectations and welcome open and honest conversations.

“They can also provide practical advice on things like getting back to work and how to talk to colleagues, or just provide someone to listen. Nothing is too big or too small.”

Cassie had counseling in the spring of 2020, but thinks it was too soon, as she was going through what she calls the “guilt phase” of her recovery.

“I don’t think I realized I had cancer,” says Cassie, who is now returning to therapy. “It’s only now, almost three years later, that I’m starting to emotionally process the trauma.

“It was only after I got my new job that I realized the effect my diagnosis had on me and how much my changed appearance affected me. Now I work very hard to try to accept myself and come to terms with what happened. I can’t wait to get on with my life.”

Macmillan’s free and confidential helpline (0808 808 00 00) is staffed by trained nurses and counsellors. Website be.macmillan.org.uk offers brochures on topics ranging from body image to emotional health after cancer. Contact the charity Ovacome ( ovacome.org.uk; 0800 008 7054) about ovarian cancer

Read more

Read more