Living With Uncertainty: The Fear of Cancer Recurrence

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Some common questions after treatment

Can I ever be sure the cancer will never come back?

No, it’s not possible to guarantee that once you have completed cancer treatment the cancer will never come back. Although your doctor may say, “The cancer is gone” or “I think I removed all the cancer” or “I see no evidence of any cancer,” the fact remains that there’s always a chance that there are some cancer cells left in your body that survived, even though they cannot be seen or found with any test used today. Over time, these cells can begin to grow again, and the cancer recurs.

And while you don’t want to ever think about the chance of having a second cancer – one that’s not related to the first cancer – this is also possible. Having one cancer doesn’t make you immune to having a second or even a third different cancer.

Some people find it very hard to get these thoughts out of their minds. While it is useful to take some measures to prepare for the chance that the cancer can return, for some people the thought becomes a fear that interferes with daily life. Some people deal with these thoughts by distraction, or by focusing on what’s most important to them each day. Others take measures such as joining a peer support group or seeing a mental health professional. After the stress of cancer, the way you deal with the emotional pain can be key to moving on with your life.

Can my doctor give me a “no-cancer guarantee?”

Cancer is not predictable. No doctor can guarantee cancer will stay gone forever.

A recurrent cancer starts with cancer cells that the first treatment didn’t fully remove or destroy. This does not mean that you got the wrong treatment. It does not mean that you did anything wrong after treatment, either. It means that a small number of cancer cells survived the treatment you had. There were probably too few to be detected on tests or scans. But over time, these cells grew into tumors or the same type of cancer as the first one.

Not all of the growth factors for cancer cells have been found yet. Even though treatment might seem to have gotten rid of all of the cancer, there may be just one tiny cancer cell left someplace in the body. This cell may not cause any harm for many years. Suddenly, something can happen that will change the immune system and “wake up” the cell. When it becomes active, it can grow and make other cells. Finally, it’s big enough for your doctor to detect it as a recurrence.

Just as it happened the first time, there is also a chance that your normal cells may, for any number of reasons, develop damage in their DNA. (DNA holds genetic information on cell growth, division, and function.) This damage then causes a gene (a small section of DNA) to change (mutate). When genes mutate, they can become oncogenes, which can allow cells to become cancer cells that divide quickly and out of control. Damage to DNA can result in a second type of cancer, just as it caused the first one.

There are also tumor suppressor genes, which tell cells when to repair damaged DNA and when to die (a normal process called apoptosis, or programmed cell death). These genes are like the brakes on a car. Just as the brakes keep a car from going too fast, a tumor suppressor gene keeps the cell from dividing too quickly. When tumor suppressor genes are mutated or turned off – that is, when the brakes fail – the cells divide very fast, allowing cancer to develop. Changes in tumor suppressor genes can be inherited (you are born with them), but more often, they happen during your life. (See our document called Genes and Cancer to learn more about this.)

What should I look for if I am worried about a recurrence?

It’s easy to obsess about every ache and pain if you’re worried about cancer returning. But really, there are only a few major symptoms that could mean serious problems. If you have any of the problems listed below, tell your doctor at once.

  • Return of the cancer symptoms you had before (for example, a lump or new growth where your cancer first started)
  • New or unusual pain that seems unrelated to an injury and does not go away
  • Weight loss without trying
  • Bleeding or unexplained bruising
  • A rash or allergic reaction, such as swelling, severe itching, or wheezing
  • Chills or fevers
  • Headaches
  • Shortness of breath
  • Bloody stools or blood in your urine
  • Lumps, bumps, or swelling
  • Nausea, vomiting, diarrhea, loss of appetite, or trouble swallowing
  • A cough that doesn’t go away
  • Any other signs mentioned by your doctor or nurse or any unusual symptoms that you just can’t explain

Whenever you have a symptom, your first thought might be that your cancer has returned. Remember that there are illnesses and medical problems that have nothing to do with the previous cancer. You can still get colds, infections, arthritis, heart problems, etc. – just like anyone else. As with any illness, your doctor is the best person to find the cause of your symptoms. But if you are seeing a new doctor, be sure that he or she knows about your history of cancer and its treatment.

What about future health problems I might get from cancer treatment?

You should also know that some cancer treatments may cause health problems later on. These problems might not appear right away and some don’t show up until years after treatment. Ask your doctor:

  • If the treatment you had will put you at risk for short- or long-term problems
  • What those problems are and how you can recognize them
  • What you should do if you notice them
  • What you should do to take care of your health

What does “5-year survival rate” mean?

The 5-year survival rate refers to the percentage of patients who are alive at least 5 years after their cancer is diagnosed. Many of these people live much longer than 5 years after diagnosis, but the 5-year rate is used as a standard way to discuss the prognosis (outlook).

You may also hear the term 5-year relative survival rate. Relative survival compares survival among cancer patients to that of people of the same age, race, and sex who don’t have cancer. It’s used to adjust for normal life expectancy when cancer is not present. Five-year relative survival rates are considered a more accurate way to describe the prognosis (long-term outlook) for groups of patients with a certain type and stage of cancer. But they cannot predict how long you or any other person may live.

If you look at these survival rates, keep in mind that 5-year rates are based on patients who were diagnosed and treated more than 5 years ago. These statistics may no longer be accurate because improved treatments often result in better outcomes for those who were diagnosed more recently.

There’s another point to remember when talking about survival rates: Survival rates look at survival only, not whether the person is cancer-free 5 years after diagnosis. They are based on a group of people of all ages and health conditions diagnosed with a certain type of cancer. These statistics usually include people diagnosed early and those diagnosed late. As with any statistics, they should only be used to get an idea of the overall picture. They cannot be used to predict any one person’s outcome.

Why won’t the doctor say, “You’re cured”?

Most doctors avoid using the term “cure” because it implies that the cancer is gone forever. As we have discussed, this is almost impossible to say in any case of cancer. The best a doctor can do is say that they can find no signs of cancer in your body at this time. This is most often stated as “No evidence of disease.”

Your doctor may continue to watch you closely for many years and do tests to watch for any signs of cancer recurrence. There’s no harm in assuring yourself that you are cancer-free if that’s what all the evidence shows. Enjoy the feeling that you do not have cancer. But it’s still possible for cancer to come back even after you have been cancer-free for 5 years or more.

What does it mean if the doctor says, “The cancer is controlled”?

A doctor may use the term controlled if your tests or scans show that the cancer is not changing over time. Controlled means that the tumor doesn’t appear to be growing. Another way of defining control would be calling the disease stable. Some tumors can stay the same for a long time, even without any treatment. Some stay the same size because of the cancer treatment and are watched to be sure that they don’t start growing again.

What does it mean if the doctor says, “The cancer has progressed”?

If the cancer does grow, the status of your cancer changes and your doctor might say that the cancer has progressed. Most clinical trials define a tumor as progressive when there is a 25% measured growth in the tumor. (See the section “The difference between recurrence and progression” for more on this.)

How is the response to treatment described?

When a treatment completely gets rid of all tumors that were seen on a test or that doctors can measure in some way, it’s called a complete response or complete remission. The decrease in tumor size must last for at least a month to count as a response. A complete remission does not mean the cancer has been cured, only that it can no longer be seen on tests.

In general, a partial response (or partial remission) means the cancer responded to treatment, but still has not gone away. If you’re in a clinical trial this usually is defined more precisely. A partial response is most often defined as at least a 50% reduction in measurable tumor. The reduction in tumor size must last for at least a month to qualify as a response.

How long is treatment given before the doctor can tell if there’s a response?

The first treatment given for cancer is based on the last 20 to 30 years of clinical experience in treating that kind of cancer. But no 2 cases are exactly alike, and response to treatment can’t be predicted.

Standard practice is to wait for 2 full cycles of treatment before looking for any response to it. This usually takes about 2 to 3 months. Response is checked by repeating the tests that show the cancer. If the tumor doesn’t respond to the first treatment, changes will be made, perhaps to another chemotherapy combination that has shown promise in similar cases.

Last Medical Review: 06/19/2013
Last Revised: 06/19/2013