Follow-Up After Lung Cancer Treatment

A support group sitting in a circle

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What do you need to know about follow-up after lung cancer treatment? How often do you need to have clinic visits, blood work, and scans? What comes next?

Follow-Up and Survivorship

Understanding follow-up is but one aspect of what’s now been coined “survivorship.” It’s finally becoming recognized that people change as a result of cancer treatment. And just as we usually recommend rehabilitation if someone has a stroke or even a knee replacement, it’s important for those completing lung cancer treatment to understand the next steps in healing.

If you’ve reached this stage in your journey, you’re probably surprised about some of your feelings. You may have pictured yourself as ecstatic and celebrating the moment treatment is finished, and wonder why you don’t really feel that way after all. In fact, many people who are in the process of taking the step — actually the wide jump across a chasm from active cancer treatment to follow-up and survivorship — feel a bit depressed. What now?

Survivorship Plan

Follow up after cancer is seldom discussed during treatment, or even at the end of treatment. Cancer care is changing and it’s now recommended that everyone has a survivorship plan completed. The comprehensiveness of these can still vary tremendously, but there are resources online if you're not familiar with these. Where do you begin? The American Society of Clinical Oncology offers the ASCO survivorship care plan that you can print off. We'll also be sharing more here quite soon.

Follow-Up Clinic Appointments

When you finish treatment your doctor will recommend that you come back at certain intervals. This will vary a lot depending on your particular type of lung cancer, as well as response and side effects during treatment. These follow-up appointments will become less frequent with time, but the majority of cancer survivors will be seen by their oncologist, at a minimum yearly, for the rest of their lives.

The purpose of these visits is 3-fold:

  • To Monitor for Signs of Recurrence: Nearly anyone who has had lung cancer carries a risk that the disease will recur. Your doctor will ask you questions (take a history) do a physical exam, and likely order lab tests and imaging studies to look for any sign of lung cancer recurrence.
  • To Check for a Second Cancer: Once you have had lung cancer, you are at a greater risk of developing second primary lung cancer. In addition, some of the treatments for lung cancer including chemotherapy and radiation therapy may increase the risk of developing a second unrelated cancer such as lymphoma (called secondary cancers.)
  • To Check for Persistent Late Effects of Cancer: Side effects of treatment may linger long after cancer treatment has been completed. In addition, some late effects do not begin until years, or even decades after treatment has been completed.

Maintenance Medications

Upon finishing the treatment, some people are given maintenance medications to take. These may be medications to keep your cancer stable if you still have evidence of cancer or to decrease the risk of recurrence. It's important to take these on a regular schedule and at the same time each day.

Follow-Up Scans

If you know anyone who has finished cancer treatment, you're probably familiar with follow-up scans. These cause enough anxiety to have been given their own term: scanxiety

The frequency of these scans will decrease with time and varies for everyone, with chest CT scans often done every three months for three years, then at least yearly. It's not known when these can reasonably be stopped, nor whether or not low-dose CT scans may be sufficient after a while. Other tests such as bronchoscopy, abdominal ultrasound, brain CT's and bone scans may be ordered on a regular basis for a while.

With scans, you may hear about the controversy in follow up with CT scans. The question regarding these scans is about whether or not there is a survival benefit. Will finding a recurrence of cancer before any symptoms are present either result in longer survival or a better quality of life for survivors? Many of these questions are now being addressed in clinical trials.

Staying Healthy

When you’re in the midst of cancer treatment, the focus is primarily on surviving. The goal of eating is to get calories and protein, not eating an aggressive antioxidant diet which could, in theory, even be harmful in that it could "protect" cancer cells.

When you have finished treatment it is a good time to address these concerns. Eating a healthy diet is important, but for fun, there are some foods that may reduce the risk of second lung cancer or foods that may help fight lung cancer, however, there is no evidence in randomized trials to support these claims.

Exercise is important in reducing the risk of recurrence, and even though insomnia may seem to be primarily a nuisance, addressing this aggressively may even improve your outcome.

Coping With Physical Effects of Cancer

Though it’s not talked about often enough, many people cope with the late effects of lung cancer treatment. In fact, most people do. One study found that 10 years after diagnosis, 80 percent of cancer survivors were still dealing with the physical side effects of cancer treatment significant enough to affect their quality of life. There are several long-term side effects of chemotherapy as well as long-term side effects of radiation therapy. In addition, many people cope with chest pain following lung cancer surgery referred to as post-thoracotomy pain syndrome. Talk with your doctor about any symptoms you are experiencing. The most common for people with lung cancer include:

  • Pain (especially post-thoracotomy pain)
  • Fatigue
  • Shortness of breath
  • Coughing

Pulmonary rehabilitation ("lung therapy") is a relatively new area, but studies suggest this may help people cope with long-term breathing problems related to lung cancer.

Coping With the Emotional Effects of Cancer

Body and mind go hand in hand, so it’s not a surprise that most people experience some lasting emotional scars after cancer treatment. These can be severe — as in posttraumatic stress disorder in cancer patients — or less severe, as in adjustment disorders and mild depression. Cancer changes people, and you may find that your response to situations differs from what it would have been pre-cancer. For example, it’s been found that cancer survivors tend to approach some non-cancer issues in their life with avoidance — hoping that whatever is occurring will just go away. It makes sense. After cancer, the small stuff really does become small stuff, yet addressing changes that disrupt your ability to live fully after cancer is a good idea.

Coping with the emotional shock waves of cancer doesn’t mean you have to see a therapist — through studies with breast cancer survivors suggest this may even improve long-term survival. There are many ways people can cope with the emotional aftermath of lung cancer. You may want to join a support group. Or perhaps, begin journaling your cancer journey. Other people find that mind/body therapies for cancer patients can make a tremendous difference in both the emotional as well as physical healing after cancer.

Connecting With Others In the Lung Cancer Community

Even if you shunned support groups during treatment, and especially if you want to get on with your life, becoming active in some way in the greater lung cancer community is one of the best things you can do for yourself. This can help in many ways:

  • For Education: If you've just finished treatment you're probably well aware of how dramatically the treatments for lung cancer have changed — and how rapidly. Between 2011 and 2015 there were more new treatments approved for lung cancer than in the 4 decades prior to 2011. Just as we are gaining knowledge daily about treatments, we are learning more about recurrence. Being involved in the lung cancer community allows you the opportunity to hear about these advances — sometimes even before your community oncologist does. 
  • For Support: Simply having the opportunity to talk to others who have "been there" is priceless.
  • To Give Back: You've gained all of this knowledge, now what are you going to do with it? Giving back doesn't mean you have to spend vast amounts of time — in fact, after lung cancer, you probably have a lot of catching up to do in your life. Take a moment to check into some of the options. Perhaps you could be available to talk to someone who has a similar lung cancer type who has just been diagnosed? There is also a flip side to this. We know, unfortunately, that lung cancer sometimes comes back. If that would ever happen, you now have a community of people who have likewise lived it, right at your fingertips.
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