Cancer Recurrence and Concerns
You have completed your cancer treatment and are ready to move on with your life. You’ve gotten used to seeing your health care team less often and things are getting back to normal. Maybe you feel as if you are ready to go back to work full time, or become a more active member of your household. Or, you may still feel emotionally exhausted and tired from the treatments you had. Maybe you feel tired in body and spirit and need a long rest. You think you’ve just survived the biggest battle of your life, but now the doctor tells you it’s not over – you haven’t won the battle yet. The cancer has returned.
Once treatment is completed, many cancer survivors find they have still have issues and concerns that they did not expect. The one people fear the most is the news that the cancer has come back.
Common questions about cancer recurrence
No, it’s not possible to guarantee that a person who has completed cancer treatment will never have the cancer come back. Even though your doctor says, “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 is always a chance that some cancer cells are left in your body and survived, even though they cannot be seen or found with any test used today. Over time, these cells can begin to grow and cause the cancer to recur.
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.
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 cancer of the same cells as the first one.
Not all of the factors that help cancer cells grow have been found yet. Even though treatment may seem to get rid of all of the cancer, there may be just one tiny cancer cell left someplace in the body. This cell might not cause any harm for many years. Suddenly, something can change the immune system and “wake up” the cell. When it becomes active, it can grow and divide to make other cells. Finally, it becomes big enough for your doctor can detect it as a recurrence.
Just as it happened the first time, there is also a chance that some of 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 too quickly and out of control. DNA damage can cause 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 cells to develop. Changes in tumor suppressor genes can be inherited (you are born with them), but more often they happen during your life.
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 for survival).
You may also hear the term 5-year relative survival rate. Relative survival compares survival among cancer patients to that of people 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. 5-year relative survival rates are considered to be 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.
Most doctors avoid using the word “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. Be aware that it’s still possible for cancer to come back even after you have been cancer-free for 5 years or more.
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 then progressed. Most clinical trials define a tumor as progressive when there is a 25% measured growth in the tumor.
When a treatment completely gets rid of all tumors that were seen on a test or that doctors can measure in some way, it is 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 partly 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.
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.
Emotional support can be a powerful tool for both patients and families. Talking with others who are in situations like yours can help ease loneliness. You can also get useful ideas that might help you from others.
“I tried going to a support group after I was diagnosed with recurrence. Everyone in there was newly diagnosed. I felt really out of place and like I was bumming everyone out. Plus I didn’t get any support….”
Counseling and support groups
It’s very important that you gather information about any support group you are thinking about joining to make sure that there are patients in all phases of treatment, including some with recurrence and disease progression. Ask the group leader or facilitator to tell you what types of patients are in the group and if anyone in the group is dealing with recurrence.
You can find support programs in many different formats, such as one-on-one counseling, group counseling, and support groups. Some groups are formal and focus on learning about cancer or dealing with feelings. Others are informal and social. Some groups are made up only of people with cancer or only caregivers while others include spouses, family members, or friends. Other groups focus on certain types of cancer or stages of disease. The length of time groups meet can range from a set number of weeks to an ongoing program. Some programs have closed membership and others are open to new, drop-in members. RCC and the Erie community offer many different support groups patients and caregivers can take advantage of.
Religion and spirituality
Religion can be a great source of strength for some people. Some find new faith during a cancer experience. Others find that cancer makes their faith stronger or their faith provides newfound resilience. For some people, religion is an expression of their spirituality. If you are a religious person, a minister, rabbi, other leader of your faith, or a trained pastoral counselor can help you identify your spiritual needs and find spiritual support. Some members of the clergy are specially trained to help minister to people with cancer and their families.
Spirituality is important to many people, even those who don’t practice a formal religion. Many people are comforted by recognizing that they are part of something greater than themselves, which helps them find meaning in life. Spiritual practices can help foster connection to others, to the present moment, and to the sacred or significant. Meditation, practicing gratitude, and spending time in nature are just a few of the many ways that people seek and express spirituality.
Support in any form allows you to talk about your feelings and develop coping skills. Studies have found that people who take part in a support group have an improved quality of life, including better sleep and appetite.
“I can’t afford to have cancer again. Even though I have insurance, the coverage is not very good. My deductible is really high and my medicines cost a lot. I’m already working fewer hours because my last treatment left me unable to think as quickly as I could before. I feel really trapped. I can’t afford not to have treatment, but I can’t afford to have it either…”
Financial issues are often very real concerns for cancer survivors facing recurrence. For many, as this survivor describes, the problems began with the first cancer illness.
Hopefully, you have been able to keep your health insurance coverage. Sometimes there are insurance options cancer survivors have that they may not be aware of. Please talk to your Primary Care Health Provider, RCC doctor, financial counselors, or a social worker for more information and help.
Information from The American Cancer Society.