Navigating Your Lung Cancer Care

The cancer care system can seem overwhelming at first, but we’re here to help you navigate it in a way that makes you feel empowered and supported.

In this section:

  • Your lung cancer care team
  • Advocate for yourself!
  • Stigma Spotlight: When Care is Turned Down
  • Treatment access
  • What to do if you live a long way from your cancer centre
  • Advanced Care Planning

Need one-on-one advice? Talk to a Certified Respiratory Educator through our Lung Health Line. We’re available Monday – Friday, 8:30 a.m. to 4:30 p.m. EST. Chat live at lunghealth.ca, email us, or call us toll-free at 1-888-344-LUNG (5864).

Your Lung Cancer Care Team

Treating lung cancer is a team effort, so you may interact with a number of new faces during your cancer diagnosis and treatment journey.

Your lung cancer care team may include:

You: Yes, you! You are the most important part of your care team. Don’t be afraid to speak up, ask questions, and communicate with other members of your care team.

Medical Oncologist: A specialized physician who will oversee your care. They may prescribe chemotherapy, immunotherapy or targeted therapy as part of your treatment.

Surgical Oncologist: A surgeon who has special training in treating cancer. Your surgical oncologist may be called in to diagnose cancer with a biopsy. Surgical oncologists also treat cancer by removing tumors or other cancerous tissue.

Radiation Oncologist: A specialized physician who uses radiation therapy to treat cancer

Respirologist: A specialized physician who treats lung diseases. They perform procedures at the time of diagnosis, and may also assist with symptom management.

Palliative care doctor: A specialized physician who can help relieve symptoms and side effects in order to improve your quality of life.

Oncology Nurse: A registered nurse who specializes in the care of people with cancer. They may deliver your chemotherapy treatments, or assist with radiation therapy. Oncology nurses provide both emotional and practical support during your treatment.

Social Worker: A registered professional who provides emotional support and financial counselling. They can help you find community resources.

Pharmacist: A registered professional who can counsel you on your medications and help you manage side effects.

Dietician: A registered professional who can help you meet your nutritional needs while in treatment.

5 Ways You Can Advocate for Yourself!

Now that you’ve met the other members of your lung cancer care team, it’s time to learn the habits that will make you the best possible self-advocate:

  • Ask questions – lots of questions. This will help you understand what’s next, avoid misunderstandings, and figure out where to go for help when you need it.
  • Take notes: Keep a record of the decisions made at each appointment, any medications discussed and any educational materials provided. If you are feeling overwhelmed, this will allow you to go back and review what has happened and why. It will also help you ask informed questions when you communicate with your healthcare team members.
  •  Know your rights: By law, patients are allowed to see their own medical records and can keep copies of these reports for themselves. Some institutions use electronic medical records, allowing patients to access their own charts online.
  • Keep tabs on your symptoms: Without appropriate management, some symptoms can become worse and lead to other problems – like how coughing can interrupt your sleep, leaving you irritable and fatigued. That’s why it’s vital that you talk with your care team about any side effects or symptoms you’re experiencing.
  • Team up: Family members and/or friends can also be a key resource in navigating the healthcare system. They can provide support, be a voice for you if you are struggling, ask questions that might be useful, and help you remember information provided by members of your healthcare team. Think about having someone go with you to appointments if you are concerned about remembering everything or finding your way through the healthcare system on your own.

Access to treatment: a lung cancer patient story

“I’m a unicorn,” says Anne Marie Cerato. “I’m a rarity.” Anne Marie was diagnosed with stage III lung cancer in 2009, when she was just 30 years old. At the time she wondered if she would live more than a year or two. “Cancer changed everything,” she reflects.

Six months into an intensive treatment plan, Anne Marie was given the opportunity to take part in a clinical trial that would change her life. The trial gave her access to crizotinib, a targeted therapy that she could take in pill-form. In addition to causing less intense side effects, this new therapy meant that she could fight her lung cancer comfortably from her own home. Game changer.

Anne Marie’s game-changing treatment wasn’t widely available at the time, and it wasn’t publicly funded by her home province of Ontario. In fact, years passed between the drug’s approval in the United States, to approval in Canada, and finally to funding by the province of Ontario. If it wasn’t for the clinical trial, accessing the treatment would have been an uphill battle – maybe an impossible one.

More than a decade later, Anne Marie has defied survivorship statistics thanks to unprecedented advancements in lung cancer treatment. In fact, her experience with targeted therapies has lead her to advocate harder than ever for treatment access.

Around 30,000 Canadians are diagnosed with lung cancer each year. Without access to the right treatments, few will survive to call themselves unicorns.

Why treatment access matters

  • Because acting fast is everything when it comes to lung cancer treatment. More treatments (unlocked by early molecular testing) mean a better chance of finding a fit that’s just right for you as early as possible in your treatment journey.
  • Because access isn’t just about getting the treatments – it’s also about making sure that you can afford them. Nobody should go broke while fighting lung cancer.

What we’re doing about it

The Lung Health Foundation is confronting the issue of treatment access in three key areas: increasing access & affordability, improving the diagnosis and molecular testing system, and finding efficiencies in health technology assessment (HTA) processes/approvals. Read more in our Precision Medicine policy paper, The Right Treatment for the Right Patient at the Right Time.

When care is far from home

It is often more difficult for people in rural and remote areas to access lung cancer screening, screening, diagnosis and treatment. If you live a long way from your cancer centre, you may need some extra help.

The first step is to talk to your cancer care team about the time and travel commitments for the treatment you have chosen. If your treatment requires regular visits (for example, radiation
can require daily appointments at the cancer centre) then you may need to find a place to stay close to the cancer centre for a period of time. You may be able to make arrangements for this type of stay through the staff at the cancer centre. Some cancer centres have hostels or partnerships with local hotels.

If you require fewer trips to the cancer centre, you might make travel arrangements with family and friends. You should also talk to your healthcare team to see if some parts of your treatment are available at a healthcare facility closer to your home. This would mean you would not have to make a lengthy trip to the cancer centre.

Many cancer centres have arrangements for parking passes that cancer patients can use when they come for an appointment. Be sure to ask the staff at the cancer centre about such arrangements.

 

Advanced Care Planning

Advanced care planning is a process of thinking, talking and telling others about what we want for the healthcare we want to receive in the future. When you have a serious illness, it is important to talk with your healthcare team about several things: what might lay ahead, what type of care you might need, what choices might be available for you, and the type of decisions that might need to be made. Talking these things over with your family and your healthcare team members, and letting them know about your wishes, will help you feel comfortable and confident about future decisions that could be made on your
behalf.

Taking the time to write your instructions down is another important step. This document is called an advanced care plan. Visit advancarecareplanning.ca to learn more.

Lung Cancer Screening

Lung Cancer Screening

“Screening” means checking for cancer before symptoms develop, even if you feel healthy. Screening can help detect cancer in its earliest stages.

Middle aged man hugs his adult son. He looks supported.

Diagnosis and Staging

Being diagnosed with lung cancer is often life-changing, and emotional distress is common. Understanding the steps and procedures can help you feel more in control, prepare you to advocate for yourself during your treatment.

Navigating Your Lung Cancer Care

The cancer care system can seem overwhelming at first, but we’re here to help you navigate it in a way that makes you feel empowered and supported. 

young female doctor comforts older man in doctors office

Treatment

Your treatment team will consider a number of factors when choosing treatments that will fight your cancer most effectively. They will consider your overall health, age, and personal situation.

An elderly man comforts his wife

Questions and Answers About Coping with Lung Cancer

The questions we list here are the top coping questions reported by people with lung cancer. Our answers provide some basic information, but we encourage you to discuss any concerns or questions with your oncologist and other members of your cancer care team.

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