Cancer survivors struggle to find help with physical, mental effects of treatment

A Manitoba cancer survivor says she still struggles to get help with the aftermath of her treatment, years after beating cancer.

Sandra Dudych was diagnosed with breast cancer in 2010. After 16 rounds of radiation, a mastectomy and six rounds of chemotherapy, including five years of tamoxifen, she is now cancer-free but still suffers from the after-effects.

"My body changed after treatment," Dudych said. "I didn't have the same kind of mobility. I had pain, I had nerve damage, and then cognitively, which was probably more difficult, I had trouble doing numerical calculations. I displaced numbers, I had trouble finding words.

"These are not uncommon for people who have gone through cancer, but sometimes you get over them and sometimes you don't. And in my case, I still struggle with some of the cognitive challenges."

The Canadian Partnership Against Cancer released a report Monday that surveyed 13,000 cancer patients across the country about their experiences after cancer treatment was over. 

The report shows survivors deal with physical, emotional and practical challenges after successful cancer treatment — and many of them either do not or cannot receive followup care to help with those challenges.

"Patients continue, individuals continue to have symptoms, both physical and emotional symptoms, that happen after the treatment is finished," said Esther Green, spokesperson for the Canadian Partnership Against Cancer. "And while all of us, generally in the public, think 'Yay, you finished your treatment. You're great. You can go back to normal,' what this report says is 'No, that's not normal.'"

The report is the first to gather Canadian data that focuses on what the patient emotionally and physically experiences before, during and after treatment, and it contains some surprising numbers, Green said.

'So this last year I was diagnosed with, I would call them, latent symptoms of having gone through cancer … and a relatively new diagnosis called cancer PTSD. That's basically going through the trauma of dealing with cancer.'- Sandra Dudych

On average across the country, about 20 per cent of cancer patients say no one discussed different treatment options, 25 per cent say they did not receive enough emotional support during outpatient care, and 80 per cent say they had physical problems afterward. Of those physical problems, increased fatigue, sexual health and fertility were top of the list, and were among the hardest to find care for.

Dudych said she was lucky to have good support and a care team that answered her questions, but she had to do a lot of the outreach herself to find services to help her. 

"In my case, I was proactive. I chose to address the physical challenges the day after my radiation ended. I started to pursue what those changes would be like and how would I try and do my part to make them better, because I knew I was going to be living with them."

However, she did not prepare for the emotional impacts, which caught up to her after treatment, she said.

"You're so busy going through tests and scans and treatments and appointments that you really are getting through the treatment, and then you return to work, so then you're dealing with returning to work. So I put aside the emotional," she said.

"So this last year I was diagnosed with, I would call them, latent symptoms of having gone through cancer … and a relatively new diagnosis called cancer PTSD. That's basically going through the trauma of dealing with cancer."

The report says many times, patients are told their pain or mental stress is normal and they're not given subsequent treatment to help, said Green.

"So they continue to have fatigue, they continue to have anxiety … and it's not anything that is even close to normal.

"So we've really shone a spotlight on that part in particular."

The group hopes the report will help improve the patient-doctor care process before, during and after cancer treatment and encourage provincial health-care systems to address gaps in care. 

"[Many studies contain] data, data, data. That's great; that's the quantitative parts of it. But we really need to understand the qualitative, from the person, and their family, what the impact has been … so we can address that.

"The biggest issue is, for us, how can we improve quality of life for cancer patients overall?"