Lung cancer


Life after lung cancer

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Follow-up appointments | What if the cancer returns? | Question checklist | Lillian’s story

 

Life with a lung cancer diagnosis can present many challenges. Take some time to adjust to the physical and emotional changes and establish a daily routine that suits you and the symptoms you’re coping with.

Your family and friends may also need time to adjust. Because lung cancer is often diagnosed at an advanced stage, treatment may be ongoing, and it may be hard to accept that life won’t return to normal. If the cancer was diagnosed at an early stage, you may have mixed feelings when treatment ends, and worry that every ache and pain means the cancer is coming back.

Cancer Council 13 11 20 can provide you with information and help you connect with other people with a similar diagnosis.

“My family members don’t really understand what it’s like to have cancer thrown at you, but in my support group, I don’t feel like I have to explain.” – Sam

Follow-up appointments

Whether treatment ends or is ongoing, you will have regular appointments to manage any long-term side effects and check that the cancer hasn’t come back or spread. During these check-ups, you will usually have a physical examination and you may have chest x-rays, CT scans and blood tests. You will also be able to discuss how you’re feeling and mention any concerns you may have.

Check-ups after treatment are likely to happen every 3–6 months for the first couple of years and 6 to 12 months for the following three years. When a follow-up appointment or test is approaching, many people feel anxious.

Talk to your treatment team or call Cancer Council 13 11 20 if you are finding it hard to manage this anxiety. Between appointments, let your doctor know immediately of any new health problems or change in symptoms.

What if the cancer returns?

For some people, lung cancer does come back after treatment, which is known as a recurrence. Lung cancer is more likely to recur in the first five years after diagnosis. If the cancer returns, your doctor will discuss treatment options with you. These will depend on the type of lung cancer, where the cancer has recurred, and the stage and grade.

Whichever treatment you are given or choose to have, support from palliative care specialists and nurses can help you live with fewer symptoms. Talk to your doctor about how to get this support.

Question checklist

Asking your doctor questions will help you make an informed choice about treating and managing lung cancer. You may want to add some of your own questions to the following list:

Diagnosis

  • What type of lung cancer do I have?
  • Has the cancer spread? If so, where has it spread? How fast is it growing?
  • Are the latest tests and treatments for this cancer available in this hospital?
  • Will a multidisciplinary team be involved in my care?
  • Are there clinical guidelines for this type of cancer?

Treatment

  • What treatment do you recommend? What is the aim of the treatment?
  • Are there other treatment choices for me? If not, why not?
  • If I don’t have the treatment, what should I expect?
  • How long do I have to make a decision?
  • I’m thinking of getting a second opinion. Can you recommend anyone?
  • How long will treatment take? Will I have to stay in hospital?
  • Are there any out-of-pocket expenses not covered by Medicare or my private health cover? Can the cost be reduced if I can’t afford it?
  • How will we know if the treatment is working?
  • Are there any clinical trials or research studies I could join?

Side effects

  • What are the risks and possible side effects of each treatment?
  • Will I have a lot of pain? What will be done about this?
  • Can I work, drive and do my normal activities while having treatment?
  • Will the treatment affect my sex life and fertility?
  • Should I change my diet or physical activity during or after treatment?
  • Are there any complementary therapies that might help me?

After treatment

  • How often will I need check-ups after treatment?
  • If the cancer returns, how will I know? What treatments could I have?

Lillian's story

"Two days after my 34th birthday, I woke up with a sore shoulder and arm. I didn't think too much of it because the pain went away quickly.

After I felt a lump on my left collarbone, I mentioned it to my dad and brother because they're doctors. They said it was probably because I'd had a cough in the past few weeks but to get an ultrasound. After some further scans and tests, it was confirmed to be stage IV non-small cell lung cancer. I was devastated.

When I first tell someone that I have lung cancer, the first thing most people say is did you smoke?  While I think that people have the best intentions and it’s human nature to want to find the cause of a problem, does it really matter whether I had smoked or not? I'm a never-smoker, but if I did smoke, even if it was just one cigarette, should I feel that somehow it's my fault?

I want to reduce the stigma suffered by lung cancer patients and their families who are already going through so much. I use statistics to educate people and raise awareness. I explain that many other lifestyle choices are linked to cancer and that smoking causes other health conditions, such as cardiovascular diseases and other cancers. I let them know that one in three women diagnosed with lung cancer is a never-smoker such as myself.

A lot of the people I've met with lung cancer say they're guarded about their diagnosis. One carer said she didn't tell anyone for three years that her spouse had lung cancer for fear of being stigmatised.

There needs to be a lot more compassion. I think that taking away the stigma will lead to greater funding for research. I am feeling hopeful about my future. It's important to me to stay in the moment and appreciate what I have."

Tell your cancer story.

 

Expert content reviewers:

A/Prof Nick Pavlakis, President, Australasian Lung Cancer Trials Group, President, Clinical Oncology Society of Australia, and Senior Staff Specialist, Department of Medical Oncology, Royal North Shore Hospital, NSW; Dr Naveed Alam, Thoracic Surgeon, St Vincent’s Private Hospital Melbourne, VIC; Prof Kwun Fong, Thoracic and Sleep Physician and Director, UQ Thoracic Research Centre, The Prince Charles Hospital, and Professor of Medicine, The University of Queensland, QLD; Renae Grundy, Clinical Nurse Consultant – Lung, Royal Hobart Hospital, TAS; A/Prof Brian Le, Director, Palliative Care, Victorian Comprehensive Cancer Centre – Peter MacCallum Cancer Centre and The Royal Melbourne Hospital, and The University Of Melbourne, VIC; A/Prof Margot Lehman, Senior Radiation Oncologist and Director, Radiation Oncology, Princess Alexandra Hospital, QLD; Susana Lloyd, Consumer; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Nicole Parkinson, Lung Cancer Support Nurse, Lung Foundation Australia.

Page last updated:

The information on this webpage was adapted from Understanding Lung Cancer - A guide for people with cancer, their families and friends (October 2020). This webpage was last updated in March 2021. 

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