Cancer survivors follow up lacking

Young cancer survivors need better information about the serious complications that can result from treatment, says a Nelson mother.

Kristin Paterson chose to have a double mastectomy several years after being diagnosed with Hodgkin lymphoma, because of her risk of developing breast cancer.

She met another mum who also battled lymphoma, and it brought home the potentially devastating consequences of not knowing that the radiation treatment could itself cause cancer later in life.

The woman had been diagnosed with breast cancer after discovering a lump in her breast, 10 years after she had first battled cancer.

‘‘I went and met her, we had a cup of coffee and a chat and she said to me, ‘you need to be vigilant with having had radiation but at least we caught mine early, I am going to be fine, I just need to get through this second round of cancer treatment’.’’

She completed treatment, was in remission but six months later the cancer returned. She died soon after, leaving behind a husband and three young children.

‘‘I felt it was a real wake up call to be proactive about my health,’’ Paterson said.

‘‘I looked at my kids who were six months old and three when I underwent radiation and were then 10 years old and 13 and said we are not doing this again.’’

The Breast Cancer Foundation NZ says young children or adolescents who have had radiation treatment to the chest for diseases such as Hodgkin lymphoma are at increased risk of developing breast cancer.

Paterson said New Zealand had a long way to go when it came to young adult cancer survivors being informed about the longterm effects of their treatment and the risk of developing secondary cancer.

‘‘What concerns me now is that years out, no one is monitoring those long term risks.’’

She wanted to see a better link between oncology and post-cancer care.

‘‘We’ve got to see more than awareness, we have to see it trickle down to actual conversations between patients and GPs, actual screening programmes.’’

She started the Whole Lotta Life Foundation in 2013 after discovering there was no New Zealand based support system to help young cancer survivors improve their long term chances at reaching old age.

Ideally, she wanted to see patients leave their oncologist’s office with a document that detailed their cancer, the drugs they had been administered, how much radiation they had, longterm risks and the need for any ongoing screening.

‘‘There is nobody looking out for that.’’

Cancer Society medical director Dr Chris Jackson said the level of ‘‘survivorship’’ care for people after cancer treatment varied throughout the country.

Childhood cancer survivors were covered by a Ministry of Health initiative up to the age of 24. Patients who had radiation treatment for lymphoma had also been added to the national breast cancer screening programme.

But Jackson acknowledged post-cancer care was ‘‘patchy’’.

The late effects of cancer were specific to the cancer itself and the treatment the patient had received.

He said it was common to hear from people who had a similar experience to Paterson’s.

The Cancer Society was working with the Ministry of Health to develop a national survivorship strategy.

‘‘We recognise that gap and we want to fix that at a national level and ensure that everyone who has completed oncology treatment, gets good long term follow up and reintegration into normal life, life beyond cancer.’’

Jackson said cancer survivors in Otago had the choice of entering the Bridge to Health programme after their oncology treatment. Led by the Cancer Society, it had been developed by general practitioners, physiotherapists, nutritionists, physiological support services and oncologists.

‘‘It goes through issues like diet, physical activity, sexuality, spirituality, late effects of treatment – all those issues that are important in the survivorship space.’’

He said survivorship was complex and required a comprehensive approach from health professionals.

‘‘It is critical not to get too obsessed with the medical, to realise that survivorship is more than just tests and screening.’’

As part of the programme, the Cancer Society funded a GP visit for patients who had completed cancer treatment so they could reconnect with their GP as their lead medical carer and establish a long-term care plan.

It was a model he hoped could be rolled out in other regions.