When cancer treatment ends, does that mean that you just ‘get back to normal'? For most survivors, while treatment ends, the effects continue. Psychologist and Cancer Council behavioural scientist Jane Fletcher explains.
It's difficult to define when someone becomes a ‘survivor'. We often use end of treatment to indicate the survivor phase but what about women on tamoxifen or men on Zolodex? Technically they are still undergoing treatment
I like the definition from the National Coalition for Cancer Survivorship in the US: ‘An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition'.
In my view, every day you're living with cancer you're surviving. When people walk away from a train wreck, they're called a survivor, no matter what might happen in the future. So, in the time that you're surviving and living with cancer, you're a survivor.
There can be many issues facing cancer survivors, including physical changes, employment and relationship issues, and emotional effects such as fear and anxiety.
Fatigue is very common among survivors. It is underreported, because it's often dismissed or people think they have to ‘put up with it'. Yet people can experience fatigue years after treatment. There are a number of physical and emotional reasons for post-cancer fatigue and we know that some people are more at risk. We also know that exercise helps to lift mood and help fatigue. There's increasing evidence that exercise is beneficial. It doesn't have to be going to the gym; it can be gentle walking, balanced with rest if needed. Your GP or oncologist can give you good information.
Stomas, scar and disfigurement can lead to social isolation and can disrupt work, social lives and intimacy. If you're having pain and discomfort, talk to your GP.
Lymphoedema is also a big issue, especially with breast, gynaecological and prostate cancer and melanoma. It can be painful and has a big impact on quality of life. The impact can be especially relevant in summer, when travel can be difficult and the swelling is particularly difficult to manage in the heat.
The Lymphoedema Association of Victoria is a good contact for support and information on self-care: www.lav.org.au
Many people return to the same job, but a lot of people have difficulty doing this. Sometimes the employer is difficult, and sometimes the person feels they're not able to return.
Unemployment or early retirement puts financial strains on many survivors and their families. There can be role changes when the person with cancer was the main income earner and can now no longer work or is unable to find suitable employment.
The social worker at your treating hospital can usually advise about financial difficulties, or call the Cancer Council Helpline or talk to your GP.
New relationships can be hard. The cancer experience is ‘additional baggage' for a single person to bring to a new relationship. Questions are going to come up such as: When's the right time to tell them I have had cancer? What will the reaction be? What might happen?
Friends and family often want the cancer experience to be over; they want to leave it behind and move on. However, for the survivor, it's not helpful to be told to ‘just move on'. The cancer experience is part of their identity and if they have residual symptoms or scarring they will have a daily reminder of what they went through. Cancer is part of who they are and this needs to be acknowledged.
For some people, their body image changes and so do their feelings about sex. There may be physical reasons for reduced desire, but there's also been a huge psychological trauma and this needs to be understood.
Fertility is especially an issue for the young. Previously, it wasn't talked about much, because there wasn't much that could be done. If your treatment has made you infertile, you may have feelings of grief and loss because you can't have a family. Adoption may not be possible because of uncertainty about the future. If you are having issues in this area contact the Cancer Council Helpline or talk to your GP.
Cancer is a huge insult to someone's psyche. It changes someone's life forever. People with scars and side effects from treatment have a bodily reminder: every day they look on the mirror and see it. The physical change is a constant reminder that things are different.
With cancer comes the realisation that you're fallible. Suddenly you're aware of your own mortality. You feel you've lost control. You're concerned about recurrence. You may have an existential fear about death and dying.
There's anger too, which sometimes never leaves. You might think, ‘Why me?' and wonder why life hasn't turned out the way you thought it would.
There may be guilt and self-blame, wondering if there's something you did to cause the cancer. Some people have survivor guilt, because they have survived and someone they know hasn't.
Feelings of grief, sadness and loss can go on indefinitely. Grief can be anticipatory-a grief for what might not be there because of the cancer, or about what might be lost in the future.
Twenty per cent to 50% of people who have had cancer have clinical depression, compared to 17% in the general community. Anxiety affects around 35% of people who've had cancer. It can be difficult to diagnose depression in people who have had cancer, since a lot of the symptoms commonly used to diagnose depression are often long-term side effects of cancer treatment such as fatigue, low energy, sleep and appetite changes.
We have to ask, does the fear of recurrence ever leave? It's especially strong if the survivor had lymph node involvement. Any swelling or lump is going to bring on fear of a secondary cancer.
Follow-up testing can be stressful for all survivors. There's a build-up of tension before the test and the appointment, then relief after the appointment, when it's clear-then the cycle repeats. Even five or ten years out, people can still be anxious. When someone they know has a recurrence, they think, ‘Does that mean it will happen to me?'
Cancer is not universally negative. Twenty-five per cent of people who've had leukaemia say it had a positive effect on their life and there is evidence of the positive impact in a number of other cancer types.
Cancer doesn't have to be a terrible experience. Most people find positives: there can be personal growth, and they know now they have the ability to cope with a major life event. They got through it. While it's not always the case, life can still be rich and rewarding. But it is important to remember that it may not be the same.
If you're having problems, there are lots of places to get help. Call the Cancer Council Helpline or talk to your GP. Even if you're 10 years down the track-it's important to talk to someone about things if you are having trouble as just sometimes speaking about what is troubling you can help.
A hugely popular relay-style event that raises money for cancer research.
