In the back of every cancer patient’s mind is the possibility that the disease may return. And yet, when it does, the first reaction often is “How can this be happening again?”
The shock is back. The fears are back – of telling your family and friends, of more treatment, and possibly of death. The anger is there too – after all you’ve been through, it should have been enough. And the unanswered question is “Will the treatment really work this time?”
Even though you may feel some of the same things you felt when you were first diagnosed, now there’s a difference. You’ve been through this before, faced cancer and its treatment and the changes that came to your life.
You know that medical and emotional support is available to you. Facing cancer again is a difficult challenge but one you can handle.
This page is about cancer that has returned – its diagnosis and treatment, suggestions, for coping, and where to get help. As you read this, remember that there are more than 100 different types of cancer. Each person’s cancer is different, and each person responds to treatment differently. No single article can cover every situation for every person.
Many people who have faced cancer’s return say that knowledge and understanding help. By learning more about your illness and treatment, you give yourself the option of participating in your care. By maintaining a positive attitude toward treatment, you may be able to control some of your emotional and physical reactions to it.
By drawing on your own strengths and borrowing support from the people and resources around you, you can meet this challenge again.
Why Cancer Can Recur
“Recur” means “to happen again”. When cancer recurs, it means that the disease that was thought to be cured, or was at least inactive (in remission), has become active again. Cancer may recur after several months or years.
Cancer that has recurred is very much like the first cancer in the way that it starts: An abnormal cell begins growing and multiplying quickly. If not stopped, cancer cells can eventually replace normal cells.
Recurrent cancer gets its start from cells that broke away from the original tumor and traveled through the lymph system or bloodstream to start new cancer growths. Your previous treatment was meant to destroy the original cancer and many of the cells that may have become detached from it.
However, sometimes a small number of undetectable cancer cells may survive and be found later after they have multiplied.
In recurrent disease, the cancer that reappears is the same type as the original cancer – no matter where it appears. This means, for example, that if breast cancer recurs in the lung, it is not lung cancer, it is breast cancer that has spread to the lung.
Where Cancers Can Recur
Not every cancer cell that breaks away is able to start a new growth elsewhere. Most are stopped by the body’s natural defenses or destroyed by treatment with radiation or anticancer drugs.
Just as different cancers vary in their response to treatment, they also differ in their ability to recur and the places where they may recur. For this reason, recurrent cancers are classified by location: local, regional, or metastatic.
Local recurrence means that the cancer has come back in the same place as the original cancer. The term “local” also means that there is no sign of cancer in nearby lymph nodes or other tissues.
For instance, a woman who has had a mastectomy could later have a local recurrence of breast cancer in or around the area of the surgery.
A regional recurrence involves growth of a new tumor in lymph nodes or tissues near the original site, but with no evidence of growth at distant sites. A woman who has been treated for breast cancer, for instance, might have a regional recurrence in the lymph nodes under her arm.
In metastatic recurrence, cancer has spread to organs or other tissues at some distance from the original site. For example, a woman with breast cancer could have metastasis to the bone.
Diagnosing Recurrent Cancer
Over the last several months or years, you may have had a number of tests and checkups to see that your treatment was effective. Most likely you were told to watch for changes in your body and to report any unusual symptoms to your doctor.
Perhaps you noticed a weight change, bleeding, or continuing pain, or the doctor may have found signs of further illness while examining you. In either case, several kinds of tests are used to find out the exact cause of the problem and the best treatment.
Specific procedures and tests (some of which are described below) help your doctor answer these questions:
- Are the signs and symptoms caused by cancer or by some other medical problem
- If there is cancer, is it a recurrence or is it a different type
- Is cancer present in more than one site
Because certain types of cancer tend to recur in certain parts of the body, your doctor is likely to test those locations. How often a test is done is based on the type of cancer you had and the way it spreads.
Each piece of information from exams and tests helps the doctor make an accurate diagnosis so that your treatment is the best one for your problem.
In addition to a manual exam (feelings for lumps, swelling, and so on), your doctor may need to use instruments to look at certain internal organs.
Depending on the type of cancer you originally had, you may be examined through various special “scopes” that provide a direct view of the lower colon, upper digestive tract, breathing passages, bladder, or cervix.
In some cases, the doctor may even take a tissue sample through the scope that will be looked at under a microscope.
A number of lab tests are used to help diagnose recurrent cancer. Many of these same tests are also used to detect other conditions.
For example, blood samples can be tested to check the levels of certain proteins or enzymes that may change when cancer recurs. Using other fluid samples, doctors can look for signs of cancer cells in the tissues that produce the fluids. A Pap smear to test for cancer of the cervix is an example of this kind of test.
Another test is used to detect internal bleeding that may be too slight for you to notice. A stool smear or sample of fluid from the stomach may show whether blood vessels have been broken.
If any blood cells are found in the sample, a series of X-rays or another type of test would be needed to find out whether the bleeding is caused by cancer or by some other problem, such as an ulcer.
X-Rays and scans
To learn the location and size of suspected cancer, the doctor can use X-rays, CT scans, nuclear scans, or ultrasound.
These advanced tests use radiation, computers, magnets, and other very sophisticated equipment. If you have questions about how they are used, their risks, or benefits, or what you should expect during the procedure, be sure to discuss your concerns with your doctor, nurse, or technician.
X-Rays. Tumors that are fairly large and more dense than the normal tissue around them can often be seen with the standard X-ray (the chest X-ray, for example) that most people have had.
Other tests combine X-rays with a barium solution, dye or air to give sharp pictures of organs that cannot be seen clearly with X-rays alone, such as the stomach, kidney, and colon. Many people are familiar with the “GI series” (upper gastrointestinal X-ray and barium enema), an example of this kind of study.
CT Scan. A newer type of X-ray study, the CT (computed tomography) scan, takes a series of pictures from several directions.
The CT scan gives pictures that are more detailed than standard X-rays for certain parts of the body and is often used for soft issues such as the liver and brain.
Nuclear Medicine Scans. Nuclear medicine scans are often used to see the brain, liver, bone, spleen, and thyroid. A weak radioactive substance is swallowed or injected into the bloodstream, and then the scanner takes pictures of the areas to which the substance is attracted. A cancer can show up in the pictures as an area of higher or lower radioactivity than the tissue around it.
Ultrasound Scans. An ultrasound scan uses a microphone-like device that is passed over the patient’s skin and sends out sound waves that bounce off internal organs. The sound-wave echoes form a picture that shows whether a tumor is present and whether it is solid or filled with fluid.
A biopsy is often the best way to tell if cancer is present. Even though a tumor can frequently be seen through scopes or on X-ray films, a biopsy shows whether or not it is made up of cancer cells.
For some cancers, the doctor can do a needle biopsy to withdraw fluid or remove small tissue samples. When a surgical biopsy is needed, the entire tumor or a piece of it is removed. Surgical biopsies are done under local or general anesthesia.
After either biopsy procedure, the sample of cells or tissues that was removed is examined under the microscope. The doctor can tell whether the sample contains cancer cells and, if it does, what type of cancer it is.
If your cancer has recurred, an accurate diagnosis is the first step in getting the disease under control again.
In planning treatment for recurrent cancer, many of the same factors that affected treatment choices for the original cancer will be taken into account. The type of cancer, its size and location, your general health, and other treatments you’ve had are all considered before a treatment decision can be made.
In many cases, doctors are able to treat recurrent cancer with more intensive use of the therapies that were used during the first series of treatments. Your doctor may recommend further surgery, radiation to new sites, or more anticancer drugs.
For certain cancers, such as those in the reproductive organs, the doctor may suggest hormone therapy to limit tumor growth.
Discussing treatment goals, methods, and effects with your doctor will help determine which treatment will be best for you. It is important that you take an active part in the decision by asking questions and expressing your feelings about specific treatments.
The following paragraphs describe the most common treatments, some of the newer methods that are now under study, and “unproven” treatments that you may have heard about. You will also find a list of questions that patients often ask about the various treatments.
Surgery is often the treatment of choice when cancer first occurs, but it is used less often in recurrent disease. For many sites of recurrence, other methods have been shown to be more effective.
The doctor may recommend an operation to remove a local or a single metastatic recurrence that appears on the skin or in the lung, liver, bone, brain, or lymph nodes. In some cases, the surgery may be followed by radiation therapy or chemotherapy.
When a patient has metastatic cancer in a weight-bearing bone (such as in the leg), there may be a threat of fracture caused by the growing tumor. In such a case, the doctor may suggest an operation to support the bone and prevent a break.
This can help to relieve pain and keep the patient active while going through other forms or treatment to control the cancer.
Radiation treatment – the use of high levels of radiation (tens of thousands of times the amount used, for instance, to produce a chest X-ray) directed at a cancerous tumor – destroys the ability of cells to grow and divide. Both normal and diseased cells are affected by radiation, but many normal cells can replace themselves quickly.
Doctors are using radiation to treat cancer in almost every part of the body. Sometimes radiation therapy is used before surgery, to shrink a cancerous tumor. After surgery, it may be used to stop the growth of any cancer cells that remain. In some cases, doctors prefer to use radiation and anticancer drugs, rather than surgery, to destroy a cancerous growth and prevent its reappearance.
The type of cancer, location, stage, and other factors will determine whether radiation therapy is right for a patient, Metastatic sites that may be treated with radiation included the brain, lung, and bone. For most patients with metastatic recurrence in the brain, radiation therapy, is the treatment of choice.
Radiation treatment can cause side effects, but most are not serious. They usually disappear within a few weeks after treatment ends, although some are more lasting. The type of side effects you may have often depends on the part of the body that is being treated.
Nausea is one common side effect. Diet changes and medicine can help control it. Fatigue is another common side effect. Many patients have no side effects at all. If radiation therapy is prescribed for you, ask your doctor to explain the side effects that might occur and how you can best manage them.
Chemotherapy is the treatment of cancer with anticancer drugs. Drugs can be very effective in the treatment of some cancers. They may be used alone or in a treatment plan that also includes radiation therapy and/or surgery.
Chemotherapy may be given by mouth or by injection into the veins or muscles. The drugs reach and destroy cancer cells in nearly every part of the body. The speed with which the cells are destroyed varies with different types of cancer and different drugs. As a result, the length of treatment varies among patients. Treatment may consist of a single drug or a combination of two or more.
Because anticancer drugs can reach sites that are far away from the original cancer and can destroy cancer cells circulating in the body, chemotherapy is the primary treatment for many kinds of recurrent cancers.
It is often the treatment of choice for metastases in the lung and liver. When combined with radiation treatment, chemotherapy has also been useful in the control of brain metastases.
Side effects may occur during chemotherapy because the drugs can affect any rapidly growing cells in the body – normal cells as well as cancer cells. The normal cells most likely to be affected are those in the bone marrow, digestive tract, reproductive organs, and hair follicles. However, many normal cells are able to replace themselves quickly.
Every person reacts differently to chemotherapy. Some people have few or no side effects; others say their side effects were less severe than they expected; others say their side effects were less severe than they expected; others have a more difficult time.
Ask your doctor, nurse, or pharmacist about side effects that could occur with the specific anticancer drugs prescribed for you. They can give you suggestions to help manage problems that may occur during treatment.
Most side effects gradually stop before or shortly after treatment ends. However, the fatigue that some patients experience during chemotherapy sometimes lingers for a while.
Some cancers are sensitive to changes in hormone levels. By adding, removing, or limiting the activity of a given hormone, doctors can influence the growth or activity of cells affected by that hormone.
For example, if breast cancer is the kind that is stimulated by the female hormone estrogen, an antiestrogen medicine that helps to limit the tumor’s growth may be given.
Sometimes surgery or radiation treatment is used to stop the body from producing a specific hormone. Other hormones or drugs that keep hormones from being produced may be given along with other anticancer drugs.
A treatment plan that includes hormone therapy may be used for cancers of the breast, uterus, and prostate, and for some types of lymphoma and leukemia.
When you were first treated for cancer, you may have had physical therapy or used the services of a psychological counselor or social worker. Consider seeking those kinds of help again.
Two other types of supportive therapy that could also be important to you now – nutritional support and pain management – are discussed below.
Nutrition. Maintaining good nutrition during cancer therapy is very important. Studies have shown that patients who eat well may be able to cope with the effects of cancer and its treatment more successfully.
Eating well means choosing foods that have the vitamins, minerals, and other elements needed to keep the body working normally. It also means getting enough calories to avoid weight loss and enough protein to rebuild damaged tissues. Dieting during treatment is not advised because it deprives the body of needed calories and nutrients.
You could have problems with eating and digesting food because of treatment side effects, but coping with diet problems may be easier that you expect.
If keeping up your food intake and maintaining normal weight continue to be a problem in spite of your efforts, ask a dietitian on your treatment team to suggest a diet plan to help you. For severe nutrition problems, special treatments can be given at home or in the hospital.
Pain Control. Although many people with cancer do not have serious problems with pain, others need help with pain management. Pain from cancer or its treatment may need only a light medication-such as aspirin- to relieve it.
If the pain is not helped by light pain relievers, talk to your doctor about prescription medicines or other nonmedical methods or pain relief. If you’re having radiation therapy or chemotherapy, be sure to check with your doctor before taking any medicines.
When describing a pain to your doctor, be as specific as you can. To recommend the best pain treatment for you, your doctor will want to know the following things:
- Where exactly is your pain? Does it ever move from one spot to another?
- How does the pain feel (dull, sharp, burning, etc.)?
- How often does it occur?
- How long does the pain last?
- Does it start at a specific time (before or after meals, after certain activities, etc.)?
- Does anything (lying down, sitting, eating, etc.) seem to relieve the pain
Because pain can be worse when you are frightened or worried, you may find some relief by using relaxation exercises or meditation. These activities, which usually involve deep, rhythmic breathing and quiet concentration, can be done almost anywhere.
A number of other ways to reduce pain have been gaining attention in recent years. Hypnosis and biofeedback have been helpful for some people with serious illness. These and other methods are being studied to see if they can help cancer patients.
If you want to learn about them, ask your doctor or nurse to refer you to a health professional who is trained to teach these methods.
Experimental and Unproven Treatments
The words “experimental” and “unproven” are very similar in meaning, but there are important differences when they are used to describe cancer treatments. Understanding the difference can help you when discussing and choosing among your treatment options.
Experimental Methods. Experimental (or investigational) treatments are given under strict scientific conditions. These methods have been tested on animals, and they have shown promise for treating cancers in humans.
Examples of experimental treatments under study at this time include a new combination of drugs, hyperthermia (heat treatments), and drugs that make radiation treatments more effective. If proven effective, the experimental treatments of today could become standard treatments in the future.
For most cancer patients, standard treatments offer the best hope for control of cancer. Sometimes, however, your cancer might be more effectively treated with an experimental method and you might want to consider entering a clinical trial, which is a scientific study using new types of cancer treatments.
Clinical trials involve the use of new substances (such as new anticancer drugs), a new way of using a treatment, or a new combination of anticancer drugs and other forms of treatment. The doctors who are approved to conduct clinical trials follow detailed guidelines for treating patients.
Participation in a clinical trial is always voluntary. The doctor handling your experimental treatment will explain to you which parts of the therapy are experimental and which are standard, what risks are involved, and what side effects might occur. The treatment cannot begin without your consent.
Unproven Methods. A treatment method described as “unproven” is one for which the substance used (a vitamin, food, etc.) or the way it is given has not been shown, by accepted scientific methods, to be effective.
Perhaps the most widely known unproven cancer treatment involves Laetrile, a product made from apricot pits. Other unproven methods you may have heard about use various diets, vitamins, herb mixtures, and serums.
Findings from experimental treatments are usually first reported in medical and scientific journals and may later be reported in newspapers and magazines directed to the general public. Unproven methods are usually reported only in newspapers and magazines.
They generally rely on first person accounts by patients and do not discuss scientific data. Use of these unproven treatments may actually be harmful because it may delay or interfere with treatments of proven benefit. Some of them may even cause dangerous reactions themselves.
Questions to Ask the Doctor
Before you and your doctor agree on a treatment plan, you should understand why one treatment is recommended over others. You should also be aware of how the treatment compares to others in terms or possible benefits, risks, side effects, and impact on your lifestyle.
The questions listed below are examples of what patients often want to know about their treatment. You may want to add your own questions to the list to discuss with your doctor, nurse, or social worker. Family members or others close to you may have questions too.
Questions to ask about any recommended treatment:
- Why do you think this treatment is the best one for me?
- Is this the standard treatment for my type of cancer?
- Are there other treatments? What are they?
- What benefits do you expect from the treatment?
- Are there side effects with this treatment? Are they temporary or permanent?
- Is there any way to prevent or relieve the side effects?
- How safe is this treatment? What are the risks?
- How will you know if the treatment is working?
- Will I need to be in the hospital?
- What will happen if I don’t have the treatment?
- What does my family need to know about the treatment? Can they help?
- How long will I be on this treatment?
- How much will the treatment cost
About radiation therapy:
- What benefits do you expect from this therapy?
- What type of radiation treatment will I be getting?
- How long do the treatments take? How many will I need? How often?
- Can I schedule treatments at a certain time of day?
- What if I have to miss a treatment?
- What risks are involved?
- What side effects should I expect? What can I do about them?
- Who will give me the treatments? Where are they given?
- Will I need a special diet?
- Will my activities be limited
About chemotherapy and hormone drug therapy:
- What do you expect the drugs to do for me?
- Which drugs will I be getting? How is each one given?
- Where are the treatments given?
- How long do the treatments take? How many will I need?
- What happens if I miss a dose?
- What risks are involved?
- What side effects should I expect? What can I do about them?
- Will I need a special diet or other restrictions?
- Can I take other medicines during treatment?
- Can I drink alcoholic beverages during treatment
About experimental treatments or unproven methods:
- What benefits can I expect from the treatment?
- What can you learn from it?
- Is there scientific evidence that the treatment can help?
- What are the known or potential risks? Possible side effects?
- Can I continue my regular treatments while I’m trying the new one?
- Will I have to get the new treatment from a different doctor?
- Will my insurance cover the costs of treatment?
- Will I have to travel to get the treatment? How often?
From your own experience, you may remember that much of the fear and anxiety that you felt the first time cancer appeared in your life was “fear of the unknown”. Once you had the tests and went through the treatments, you knew what to expect.
This knowledge may have helped you cope. Important ways that you can help yourself again are to gather information, to participate in your treatment as much as possible, and to learn to deal with your feelings about your cancer recurring.
If you know how your illness can affect your body and if you stay informed about the progress of your treatment, you have a better chance to take part in your care. Some people prefer to leave treatment decisions entirely to their doctor; this is not unusual. However, it may still help you to know the reasons behind your doctor’s decisions.
Learn as much as you can about what is happening to you and around you. If you have questions, ask your doctor and other members of your treatment team. Your pharmacist is another good person to talk to if you have questions about your medicines. If you don’t understand the answer to a question, ask it again.
Some patients hesitate to ask their doctors about treatment options for recurrent cancer. They may think that doctors resent having their recommendations questioned, or that they may be unwilling to discuss experimental treatments or unproven treatments they may have heard about. Many doctors, however, believe that coping with treatment is easier when patients understand as much as possible, and they encourage patients to discuss their concerns.
When you see the doctor to talk about possible treatments or to get help for problems that come up during treatment, take along your list of questions and ask a friend or relative to go with you. You’ll get the most useful advice if you and your companion speak openly to the doctor about your needs, expectations, wishes, and concerns.
Participating in Your Treatment
Taking an active part in your care can help you maintain a sense of well-being. There are many ways you can contribute. One is to follow the care measure recommended for you, such as a special diet or exercise program or avoiding tight clothing or too much sun.
Another way you can help is to keep your doctor informed. Report honestly how you feel, and if problems arise, be as specific as possible when describing them. Don’t ever hesitate to report symptoms to your doctor or to request advice on what to do about them.
Although many health-related signs and symptoms may seem unimportant to you, they could provide valuable information to your doctor. Know what signs you should look for, and if any of them appear, tell your doctor as soon as possible.
Remember the difference between “doing” and “overdoing”. Rest is very important to you now – both physically and emotionally.
Some things you can do to keep up your strength are to:
Eat well. This may be one of the most important things you can do to improve your body’s response to treatment.
Get extra rest. Your body will use a lot of extra energy during treatment. Get more sleep at night and take naps whenever you feel the need.
Adjust activities. Try not to demand too much of yourself. Ask other people to take over some of your tasks if necessary. If your energy level becomes low, do the things that are most important to you and cut back on the others
If you find your strength limited by your illness or the side effects of treatment, you may want to seek out less tiring activities. You can try things that you may not have taken time to enjoy before.
Managing Your Emotions
The diagnosis of cancer, whether for the first time or when it recurs, can threaten anyone’s sense of well-being. Some people where they first find out that cancer has returned, feel shock and denial.
Many had put their experience with cancer completely behind them, and the new diagnosis hits them as hard as – or even harder than – it did the first time. Others are not surprised, as if they had been expecting it all along.
There may be times when you’ll feel overcome by fear, anxiety, depression, or even rage. These emotions are common ways to cope with a difficult situation, and many people with recurrent cancer experience them.
Feel free to express these feelings if they occur. None of them are “wrong” reactions, and letting them out will help you deal with them.
Starting cancer treatments again can place demands on your spirits as well as your body. Your attitudes and actions really can make a difference. Remember that you have coped with this situation before. Keeping your treatment goals in mind may help you keep your spirits up during therapy and see you through “down” spells that may occur.
As you go through treatment, you’re bound to feel better about yourself on some days than on others. The uncertainty of living with recurrent cancer can sometimes contribute to ups and downs. When a bad day comes along, try to remember that there have been good days and there will be more.
Feeling low today does not mean you will feel that way tomorrow or that you are giving up. At these times, try distracting yourself with a book, a hobby, or plans, for a new garden. Many people say it helps to have something to look forward to – even simple things like a drive, a visit with a friend, or a phone call. Sometimes, however, you may just want to cry – this is okay too.
You may need to rely more on the people closest to you to help during your treatment, but this may be difficult at first. Many people do not understand cancer, and they may avoid you because they’re afraid of your illness. Others may worry that they will upset you by saying the wrong thing.
At a time when you might expect others to rush to your aid, you may have to make the first moves. Try to be open in talking to others about your illness, your treatment, your needs, and your feelings.
Once people know that you can discuss these things, they may be more willing to open up and lend their support. By keeping the lines of communication open, you can help to correct mistaken ideas, and you and your loved ones will be better able to help each other through a difficult time.
At times you may want a listener who’s more objective than your family or friends. Try talking to someone on your treatment team with whom you feel comfortable. The health professionals caring for you have your overall well-being as their primary goal.
When they know about your personal concerns, how your household has been affected, and what changes in your situation you’d like to see, they will be better able to provide the best types of physical and emotional support for you.
At times you are likely to feel stressed by the continuing changes in your life. Some stress can help because it may prompt you to take action. Too much stress, though, can harm your health and emotional well-being. You may not be able to remove all the stress around you, but you can try to limit it. Relaxation techniques can be used to reduce stress and improve your sense of well-being.
Rhythmic breathing, imagery, and distraction are among the techniques that are easy to learn and use whenever you need them.
If you are interested, ask your doctor or nurse to refer you to someone trained to teach these techniques. The local library also has useful books on relieving stress.
There are many reasons for the emotional problems cancer patients experience. You can probably manage a number of these problems on your own or with the help of family, friends, or clergy, but for others you may want professional help.
A counselor trained to help cancer patients deal with their emotions may be a valuable addition to your health care team. These counselors understand the special problems that go along with serious illness, as well as the various ways of coping that others have found useful.
If you think this kind of professional support could help you, ask your doctor or nurse for the name of an appropriate counselor.
If you are currently experiencing symptoms or need help with consultation, please contact Dr Gan if you have any concerns and need to schedule an appointment here.
Adapted from National Cancer Institute Publication No. 87-2709