Cancer survivors, and their families and friends, are increasingly determined to take responsibility for living with cancer. They do this usually in collaboration with their medical advisors and often with practitioners offering complementary therapies and advice. A Survivorship Plan may eventually be a seamless and normal part of the cancer treatment and care pathway, from the outset.
But survivorship is broader than medical care, and is about caring for the whole person including non-medical issues eg access to transport, financial impact, practical aspects like cooking, supermarket shopping, cleaning, childcare arrangements etc when you're not feeling well.
Participating in your cancer care and a roadmap for the path ahead
"There is no guidebook for a cancer diagnosis, you don’t know what to do, how to act, what to say. Everyone feels sorry for you and they don’t know what to say either. Do they ask if you are cured? Will it come back? How was treatment? You feel completely isolated, because again, people just don’t get it. (Joe Schneider, My musings, ramblings and thoughts, 6Aug2010)
Beyond the initial shock of diagnosis - get involved in caring for the whole person
Caring for the whole patient (CancerNet, US, American Society of Clinical Oncology)
Patient information and support
Access to transportation
Financial assistance and advice
Managing health care information
Managing life disruptions (work, family, ..)
Participating in your cancer care (self-advocacy ... CancerNet, US, American Society of Clinical Oncology))
"Self-advocacy is an ongoing process, from diagnosis to follow-up care after treatment. The following suggestions may help get you started:
Learn more about your type of cancer from reliable websites, such as Cancer.Net and the National Cancer Institute or from your doctor. Cancer.Net also lists patient information resources, which provide educational material for people with cancer and their families. Discuss this information with your doctor or nurse.
Ask about and take advantage of other services offered at your doctor's office, hospital, or clinic, such as counseling, support groups, nutritional counseling, and fitness or movement classes. Before you begin an exercise program, consult your doctor.
Make connections with other people living with cancer, and learn from those who have had similar experiences. Some patient information organizations have programs that pair survivors with people who have been recently diagnosed with cancer. Some examples include the American Cancer Society’s Reach to Recovery program and the Pancreatic Cancer Action Network's PALS (Patient and Liaison Services) Survivor and Caregiver Network. Learn more about finding a support buddy.
Consider seeking a second opinion about your diagnosis or treatment plan, which may help you feel more confident about your choice.
Don't be afraid to ask for help managing nonmedical issues, such as the cost of cancer care, health insurance, transportation, and childcare. Learn more about how to address psychosocial issues." (CancerNet, US, American Society of Clinical Oncology).
"Husband and wife - "we heard the same words from the surgeon, but had vastly different interpretations of his meaning!" (Cancer Conversation participants)
“Don’t just accept that ‘whatever you get’ is OK. Be proactive in your own care decisions.” (PG, Cancer Voices SA member)
After intial cancer treatment ends: What to expect (CancerNet, US, American Society of Clinical Oncology)
At the completion of active treatment, the "safety net" of regular, frequent contact with the health care team ends. Some survivors may miss this source of support, especially because anxieties may surface at this time. Learn more about after completing treatment. Some survivors have difficulty adjusting to and learning to live with uncertainty. Others may have physical problems, sexual problems, fertility concerns, experience discrimination at work, or find that their social network feels inadequate. Find out more about coping with such concerns, and how to make positive lifestyle changes after a cancer diagnosis.
The lack of survivorship support, or awareness meant being unprepared for how challenging the ‘post treatment’ period can be. “People around you expect ‘life is now back to normal’, but that’s when the whole emotional impact hits. I held it together during treatment, and can’t understand why I’m going to pieces now that I’m supposed to be cured”. JM, Cancer Voices SA member)
Fear of recurrence
Fear of recurrence (the return of cancer) is common among most cancer survivors. It may lead a person to over-interpret the significance of minor physical problems, such as a headache or joint stiffness. It is simply hard to know what is "normal," and what needs to be reported to the doctor. Discussing the actual risk of recurrence with your doctor and the symptoms to report can often reduce a person’s anxiety. Maintaining your schedule of follow-up visits can also provide a sense of control. Although many cancer survivors describe feeling scared and nervous at the time of routine follow-up visits, these feelings may ease with time.
Financial impact – need to get back to work despite wanting time-out to heal physically, mentally and emotionally. Fear that this stress could trigger a relapse.(JD, Cancer Voices SA member)
Relationships with family and friends may be tested during this transition. Some friends may become closer, while others distance themselves. Families can become overprotective, or may have exhausted their ability to be supportive. Relationship problems that may have been ignored before cancer can surface. The entire family is changed by the cancer experience, but they may not recognize these changes. Open communication helps with adapting to life and shifting relationships after cancer.
‘Confronting’ is how I would describe my cancer experience. I learnt a lot about myself and life, but this knowledge came at huge personal cost. Would I want it to be different if I had my chance again? Mmmmh ……maybe not. Many positives in there amongst the negative aspects.(JD, Cancer Voices SA member)
Getting back to "normal"
Returning to work is a sign of regaining a normal routine and lifestyle, and 80% of people with cancer return to work after a cancer diagnosis. Most people need their job and the health insurance it provides. Studies show little, if any, difference in the work performance of survivors. Although obvious discrimination has decreased, there can still be subtle discrimination. Learn more about dealing with discrimination. When planning your return to work, it may be helpful to anticipate questions from coworkers, and decide how to answer these questions in advance. Coworkers may want to help but not know how. It may be up to you to start the conversation and set the limits. Disclosing and discussing a diagnosis is a personal decision. Find out more about sharing your story.
After treatment: Life After Cancer Treatment: The "New Normal"
A short list of cancer survivorship issues
There are many cancer survivorship issues and challenges. People often don't recognise that these may be cancer or treatment related ...
"symptoms I experienced were not addressed because no one told me they were side effects of treatment" (HOW CANCER HAS AFFECTED POST-TREATMENT SURVIVORS: A LIVESTRONG REPORT, Jun 2010)
- cognitive changes (eg. chemo-brain)
- lack of transport
- urinary incontinence
- chronic pain
- second cancers
- sexual dysfunction
- anxiety &/or depression
- body image
- fear of recurrence
- grief and loss
- setting priorities
- communicating with others (eg partner, family, colleagues..)
- families and young children
- dating and new relationships
- living with uncertainty
- food & nutrition
- exercise, physical activity
- palliative care
- financial impact
- employment issues, return to work
Where or who can you go to for help or guidance? Many items on this list have helpful information resources provided at www.livestrong.org or our website links.