Cancer survivors face crippling fear and isolation after treatment

Cassie Burns struggled to return to normal life after being given the all clear over concerns about her physical changes and fears her ovarian cancer would return

Like many women diagnosed with ovarian cancer, it was stomach issues that prompted Cassie Burns to seek medical attention in July 2019. Her GP’s quick response meant Cassie received prompt treatment and was given the “all clear” in December 2019.

For the casual observer, everything went smoothly: Cassie then landed her dream job in health and social care, moved in with her faithful boyfriend, and had options to have children one day. But in reality she was still in turmoil.

“A few weeks after my last chemotherapy session, I had a 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 ovarian cancer early on be stage 1.

“I felt numb even though I celebrated. For about two years I told myself that my cancer was a little slip-up in my life that I just had to get over. It’s only now that I’ve realized how much it has affected me. I keep wishing I was who I was before and I have a hard time accepting who I am now.”

It’s a story Macmillan Cancer Support staff are all too familiar with.

“We find that people often need as much emotional support early in recovery as they do at diagnosis or during treatment,” said Rebecca Stead, service knowledge specialist at the charity.

“The consequences are affecting people in different ways. Some mistakenly believe they should feel happy or relieved, celebrate the return to normal, and focus on the future.

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

Or they may feel guilty about the impact their cancer has on their loved ones, comparing themselves to patients with terminal cancer or those who did not survive. After treatment, many fear the cancer may return.”

Being unsettled in this way is known to induce anxiety and is something Cassie from Sheffield has experienced.

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

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

“I get pretty paranoid when I get a sting and think the cancer might be back.”

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

“All people who are 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 trigger fear, such as B. a follow-up examination? Or do you notice pensive thoughts that forestall anxious feelings?

“If you learn to recognize these triggers, you can recognize them when they occur and use techniques like CBT or mindfulness meditation to alleviate them.”

The enduring physical effects of cancer can also be underestimated.

“There can be visible signs like hair loss, weight changes, and scarring,” says Rebecca.

“But there are also non-visible signs like fertility issues, changes in libido, fatigue and gut issues that can have major psychological implications.”

Cassie even started avoiding dating friends due to her anxiety and changes in her appearance.

“I was lucky not to lose all my hair during chemotherapy, but I did lose strands and as they were uneven I had to have them trimmed. I’ve also gained two pounds, lost muscle mass, and my body shape and metabolism have completely changed, so I can’t shift the weight.”

These changes often leave survivors feeling very alone.

Nevo Burrell, Perci Health’s image consultant and stylist, says: “Peer-to-peer support is often key here because if you experience something as a result of treatment, you can guarantee that others will too. You can always contact your cancer nurse or cancer imaging expert for advice.”

The charity Look Good, Feel Better offers online workshops on improving body image after cancer (lookgoodfeelbetter.co.uk).

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

“They can highlight symptoms to look out for, explain how to manage side effects or symptoms of treatment, and offer ideas for getting more active and improving overall health,” she says.

“Talking can really help. If you don’t want to open up to family and friends, Macmillan’s specially trained support line advisors have no expectations and welcome open, honest conversations.

“They can also offer practical advice on topics such as getting back to work, talking to colleagues, or just providing someone to listen. Nothing is too big or too small.”

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

“I don’t think I was aware I had cancer,” says Cassie, who is now returning to therapy. “It’s only now, almost three years later, that I’m beginning to deal emotionally with the trauma.

“It was only after I got my new job that I realized how much my diagnosis was affecting me and how my changed appearance was affecting me. Now I’m working really hard to accept myself and come to terms with what happened. I look forward to moving on with life.”

Macmillan’s free, confidential telephone line (0808 808 00 00) is manned by registered nurses and advisers. 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