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Summary: What You Need To Know

Recurrence is when your cancer returns. It is not a new cancer. 

Learning that your cancer has returned can be devastating. It can even feel worse than the first diagnosis. However, the fact of a recurrence by itself is not a cause for undue alarm. Rather than focus on the fact that cancer came back, it is better to think about what to do about the situation.

To help cope with the emotions that are bound to appear, use whatever mechanisms and relationships you used the first time around. You survived cancer at least once. You also have the advantage of everything you learned since then. It may help if you think of cancer as a chronic condition which sometimes has acute phases. 

Look for humor. It helps.
 
A recurrence presents challenges for your medical team. However, even if the range of treatments is the same as during your first encounter with cancer, the specifics may be different. Treatment decisions are based on the type of disease, timing of recurrence, location of the recurrence, extent of spread, your overall health, and your personal wishes. For example, if you received chemotherapy, your cancer doctor may recommend a different chemotherapy. If you received radiation, you cannot generally receive additional radiation in the same area. You can receive it in a different area. 

There may be newly approved treatments, or promising treatments that are being scientifically investigated in clinical trials You can access such treatments through a process known as a clinical trial. 

Before deciding on a treatment, ask your cancer doctor about the pros and cons of each potential treatment, his or her suggestion, the reasoning behind the suggestion, and how long you have to make a decision. It is not likely that a decision must be made right away. With a time frame in mind, get a second opinion from a reputable source such as a doctor at an NCI Comprehensive Cancer Center both as to your diagnosis and your treatment. You can find an NCI center by clicking here offsite link.

There are services you can hire that will research treatments, vet the pros and cons, and make a recommendation.

If there are no treatments in the U.S. that can reasonably be said to work for you, it may be worth exploring what is happening in other countries. If you use this option, (known as "medical tourism") be cautious. There are signs to look for to help spot phone treatments. Also see: What Happens If Cancer Treatment Is No Longer Working

Keep in mind that at least one person survives every illness. There is no reason that person isn't you.

Use the practical experience you have gained to help avoid unwanted side effects and to deal with those you can't avoid. Keep in mind that with time, treatments get smarter with fewer side effects. Plus, the ability to control side effects gets better.

If paying for cancer treatment is an issue, or if finances of any type are an issue, Survivorship A to Z provides information on what to do when you are uninsured or have what we refer to as a financial crunch.

If your recurrence throws you off balance financially, when things settle, take a few moments to do financial planning that takes account of your health condition. A bit of planning will help maximize your resources. We even have tips on dealing with creditors if that is problem. (If financial planning is difficult for you, ask a trusted family member or friend to do it for you.)

This is not a time to beat yourself up if you haven't been living a cancer preventive lifestyle, or if you have, thinking that you could have done more. As the American Cancer Society says: "Although eating right, exercising, and seeing your doctor for follow-up visits are important, please understand that there probably was nothing you could do to keep your cancer from coming back… Even if you do everything just right, you can't change the possibility that cancer will come back. "

Look around you. Is your home environment peaceful and conducive to healing and healthy life? If not, do what you can to change it. For instance, repaint walls to restful colors.

If you haven't before, now is the time to get your legal affairs in order. If you have, check what you did to be sure it still reflects your wishes. 

CAUTION

  • Continue to think of non-traditional therapies as complementary to medical treatment rather than instead of medical treatment until the therapy is subjected to carefully designed, scientifically controlled patient studies. If money is the problem, there are alternatives for obtaining free or low cost care described in our information for people who are uninsured. (Please see "To Learn More").
  • Let your doctor know about everything you put into your body and all treatments you receive. Herbs, supplements and high dose vitamins can cause a drug interaction that interferes with treatments.

NOTES

  • Even though you have been there before, it is at least worth skimming the Survivorship A to Z document: Newly Diagnosed With Cancer. There may be tips there that you didn't know the first time around that would be helpful now. 
  • When you start treatment, see In Treatment
  • When treatment ends, see Post Treatment.

Get Your Legal Affairs In Order.

If you haven't before, now is the time to get your legal affairs in order. As you read this, keep in mind that this is advice we give to everyone, including people who are at the top of physical fitness. Life is fragile. No one knows what will happen in the next minute. We could all get hit by the proverbial bus. 

If you have tended to these matters already, revisit what you did to be sure it still reflects your current wishes. What we want can change over time. 

At least:

  • Make arrangements for your children in case you become unable to care for them or die. 
  • Consider what you want to happen medically if you become unconscious or otherwise unable to speak for yourself. The documents to write are called Advance Directives. 
  • Write a will. 
  • Consider preplanning a funeral. Bring the family in on the discussion so you can make it about what everyone wants for themselves instead of focusing on you.
If you execute a DNR (a do not resuscitate order), remind people you live with not to call 911 in an emergency. To learn about the steps to take, see the articles in "To Learn More." 

What Is A Cancer Recurrence?

A cancer recurrence is the return of cancer after treatment and after a period of time during which the cancer cannot be detected. A recurrence may be in the same location in the body it was the first time, or it may be in another part of your body all together.

A recurrence may be at the same stage as originally, or it may be more advanced. Even if it is an advanced stage, keep in mind that at least one person survives every cancer - and that person could be you. Even a 1% chance of long term survival means that one in one hundred people will survive.

A recurrence results from cells from the original cancer which have become reactivated. Once reactivated, the cells grow and possibly spread. The recurrence may have different DNA than the original cancer because cancer cells constantly change. (DNA holds genetic information on cell growth, division, and function.) Still, it is basically the same cancer.

If the cancer is not related to your first cancer, it is not a recurrence. Instead, this is called a Second Primary Cancer

Recurrence Or Progression: What Is The Difference?

Progression is when cancer spreads or gets worse. Sometimes it is hard to tell the difference between recurrence and progression.

There is no standard period of time within the definition of recurrence, but most doctors consider a cancer to be a recurrence if you had no signs of cancer for at least a year. If your cancer has been gone for only 3 months, this would most likely be a progression of your disease. In this case, the doctors would assume that the cancer (even though they could not find it in any of the tests) never totally went away.

Your doctor will tell you whether your cancer is a recurrence or a progression and what that means to you.

What Are The Different Types Of Cancer Recurrence?

There are three different types of cancer recurrence. The different types are defined by where in your body the cancer appears.
  • Local recurrence: The cancer appears in the same place where it was first found, or very close by.
  • Regional recurrence: The cancer appears in the lymph nodes and tissue near where it started.
  • Distant recurrence: The cancer appears in another part of the body which is further away from where it started. This is known as "metastasized."

Where your cancer recurs depends on your original cancer type and stage.


 

Emotions That Surface With A Recurrence And How To Cope With Them

A recurrence can bring up all the emotions that accompanied your first diagnosis - plus the additional distress of realizing that your cancer was not gone despite suffering through treatment and doubt about whether you chose the right doctor or treatment.

A recurrence is likely to bring up all the emotions that you experienced when you were first diagnosed with cancer. You may also feel any of the following:

  • Anger -- especially if you have been following a cancer prevention lifestyle.
  • Distress at realizing that your cancer was not gone despite suffering through treatment.
  • Doubt about whether you made the right treatment decision originally, or had the right doctor(s).
  • Fear that was greater than before because of a feeling that you are closer to death - whether it is true or not.
  • "I know what this is like. I can't go through this again."

Focus on what got you through your first bout with cancer. You made it through once. You can do it again. In fact, it may be a bit easier this time because you have a relationship with your doctor and his or her staff. You likely also know your way around the treatment facility. 

If you didn't before, consider speaking with a breast cancer buddy - another woman who is living through a recurrence of breast cancer. Your cancer center may have a survivors program. You can also contact the American Cancer Society's Reach To Recovery program: www.cancer.org offsite link or call 800.ACS.2345. 

Also consider joining a support group of other women living through breast cancer recurrence. In addition to the support, you are likely to learn practical information. In addition to in person meetings, you can attend a support group on line or on the telephone. See the document in "To Learn More" which lists organizations which sponsor or know about breast cancer support groups. 

When fear comes in, keep in mind that it is a thought, a projection. You can change the thought. It takes practice and time, but you can do it. The more you practice it, the easier it becomes. Plus there are techniques to help deal with stress. 

When it comes to doubt, keep in mind that you made the best decision you could with the facts you had at the time. There never was a guarantee that your cancer wouldn't return. All we can ever do is our best. 

Stay hopeful. Breast cancer is becoming a disease that doctors can manage. To help build your sense of hope:     

  • Plan your days as you have always planned your days.
  • Don't limit the things you like to do just because you have cancer.
  • Look for your own reasons to have hope.
Look for humor. It helps. Art Linkletter got it right when he said that "Laughter is the best medicine." 

You can help assure your comfort with the treatment decision you have to make now by doing the following:

  • Tell your doctor about the emotions the recurrence has brought up just as you tell him or her about your other concerns. If you don't like the way decisions were made the first time, discuss making a change. If you are no longer comfortable with the doctor, consider changing doctors. Changing doctors is not something to do lightly, but your health is the issue. You may find that a fresh start with a new health care team will help you improve your attitude and feel better about your current situation. Survivorship A to Z provides suggestions for working through issues with your doctor, and changing doctors if things don't work out. See "To Learn More."
  • Get a second opinion - particularly from an NCI designated Comprehensive Cancer Center.  offsite linkSecond opinions are generally covered by insurance. Our treatment evaluator can help you compare treatments.
It can help to set goals. Planning something takes your mind off the disease each day. Aim for small goals each day, such as: 
  • Exercising 
  • Completing tasks you have been wanting to do 
  • Making phone calls 
  • Having lunch with a friend     
  • Reading one chapter of a book or doing a puzzle 
  • Listening to music or a relaxation tape. 
Many people also set longer-term goals. They say that they do much better if they set goals or look forward to something special. It could be an anniversary, the birth of a child or grandchild, a wedding, a graduation, or a vacation. If you set a long-term goal, make sure you are realistic about how you will achieve it. 

Remember that being flexible is important. You may have to change your plans if your energy level drops. You may have to adjust your goals if the cancer causes new challenges. Whatever your goals, try to spend your time in a way that you enjoy.

Review the tips we provide in "To Learn More" about coping with specific emotions if they appear.  

A Wake Up Call To Life And To Meaning

Some people use recurrence as a wake-up call. Other people look for meaning in their live

Wake-Up Call 

What a wake-up call means is different for each of us. For example, it could be: 

  • Enjoying the little things in life. 
  • Traveling somewhere you always wanted to go. 
  • Spending more time with loved ones. 
It may be hard at first, but you can find joy in your life. Take note of what makes you smile. Pay attention to the things you do each day that you enjoy. They can be as simple as drinking your morning coffee, sitting with a pet, or talking to a friend. These small, day-to-day activities can give you comfort and pleasure. 

Or it could be playing golf or some other sport that you love. Whatever you choose, embrace the things that bring you joy when you can. 

Meaning 

At different times in life, it is natural for people to look for meaning in their lives. Many people with recurrent cancer find this search for meaning important. They want to understand their purpose in life. They often reflect on what they have gone through. Some look for a sense of peace or a bond with others. Some seek to forgive themselves or others for past actions. Some look for answers and strength through religion or spirituality. 

For more thoughts about meaning, see the document in "To Learn More." 

To Learn More

How To Find Clinical Trials/Medical Tourism Outside The U.S.

Clinical Trials
  • When looking for a clinical trial that works for you, search through the available databases.There is no one source that lists every clinical trial in the United States. 
  • Before starting your search, pull together the information needed to determine eligibility. Survivorship A to Z provides a list in the document in "To Learn More." You do not need a doctor's referral to enter most trials.
  • Before entering a clinical trial, be an informed consumer. Learn the questions to ask. For instance, learn about your costs. The drugs are free but you may have to pay costs for check ups. Most costs are covered by health insurance. Survivorship A to Z provides a list of questions to ask. It couldn't hurt to ask your doctor for his or her opinion before joining a trial.

If no treatments or clinical trials are available for your situation in the U.S.

It is worthwhile to at least explore what may be available outside the United States.

Be sure to study any out-of-the mainstream treatment carefully before pursuing it - particularly if it means not taking a mainstream treatment that could be helpful. Keep in mind the difference between drugs and treatments which have been scientifically studied or are being scientifically studied, and treatments which have not been subjected to scientific scrutiny.

Watch for phony treatments that have no scientific credibility.

Out of the mainstream treatments are not covered by health insurance.

 

What Are The Chances The Treatment Will Work?

As you may suspect from your previous experience, the answer depends entirely on your situation. Factors that influence the answer include:
  • The type of cancer you have
  • The length of time between the original diagnosis and recurrence
  • The aggressiveness of the cancer cell type
  • Your age
  • Your overall health status
  • How well you tolerate treatment
  • The length of time you are able to take treatment
  • The types of treatment you get.

Ask your doctor about your specific situation.

NOTE: If the treatment doesn't work, read the document in To Learn More.


What If I Don't Want To Go Through Treatment Again?

Repeated recurrences can become exhausting and discouraging.

It is up to you to decide whether to go through treatment again. There is no right or wrong. It is your life and you are in charge. 

Before you decide not to take a treatment, consider the following: 

  • Check for depression. It may be the depression, rather than you, that is evaluating the situation. Survivorship A to Z provides a list of symptoms to look for, as well as suggestions for treating depression.
  • Speak with your religious or spiritual advisor.
  • Speak with your closest loved ones.

Keep in mind that even if there is no cure for your cancer, treatments can help prolong life and possibly turn your cancer into a chronic condition like diabetes.

NOTE: No matter what your decision, there is no reason to be in pain. Pain can be controlled and possibly eliminated. This is known as Palliative Care. If your doctor cannot control your pain, there are Palliative Care specialists with whom you can consult. 

Other side effects of your cancer can also likely be reduced or eliminated with the use of traditional medicine or complementary therapies. Speak with your doctor.


If You Work, Consider Whether This Is A Time To Stop Work And Receive A Disability Income.

Check to find out whether you are entitled to a disability income from work, or even whether your employer voluntarily pays people in your situation.

You may also be entitled to an income from Social Security Disability Insurance (SSDI) and or Supplemental Security Income (SSI).

  • You paid the premiums for SSDI through withholding at work.
  • Survivorship A to Z provides information about SSDI and SSI and how to apply for both programs in a manner most likely to get an award. Only one third of SSDI applicants receive an award. We show you how to better the odds.
NOTE: "Disability" for purposes of disability insurance or government benefits can be mental as well as physical, or a combination of the two. For instance, depression can be considered to be a disabling condition. Consider starting to see a mental health therapist now to help you cope with the emotional issues that are bound to surface and help a possible disability claim.

Spouses and Partners

  • Try as much as you can to keep your relationship as it was before you got sick.
  • Talk things over. This may be hard for you or your spouse or partner. If so, ask a counselor or social worker to talk with both of you together. 
  • Be realistic about demands. Your spouse or partner may feel guilty about your illness or about any time spent away from you. He or she also may be under stress due to changing family roles. 
  • Spend some time apart. Your spouse or partner needs time to address his or her own needs. If these needs are neglected, your loved one may have less energy and support to give. Keep in mind that you didn't spend 24 hours a day together before you got sick. 
  • Body changes and emotional concerns may affect your sex life. Talking openly and honestly is key. If you can't talk about these issues, consider talking with a professional. Don't be afraid to seek help or advice if you need it. 
For more information about couples, see the document in "To Learn More."

To Learn More

More Information

Couples

Family and Friends

Your loved ones may need time to adjust to the news that your breast cancer has returned. They need to come to terms with their own feelings. These may include confusion, shock, helplessness, anger, and other feelings. 

Let family members and friends know that they can offer comfort just by:

  • Being themselves 
  • Listening and not trying to solve problems 
  • Being at ease with you. 
Being able to comfort you can help them cope with their feelings. 

 Bear in mind that not everyone can handle the return of cancer. Sometimes a friend or family member can't face the idea that you might not get better. Some people may not know what to say or do for you. As a result, relationships may change, but not because of you. They may change because others can't cope with their own feelings and pain. If you can, remind your loved ones that you are still the same person you always were. Let them know if it is all right to ask questions or tell you how they feel. Sometimes just reminding them to be there for you is enough. 

 It is also okay if you don't feel comfortable talking about your cancer. Some topics are hard to talk about with people you are close to. In this case, you may want to talk with a member of your health care team or a trained counselor. You might want to attend a support group where people meet to share common concerns. 

Family Meetings 

Some families have trouble expressing their needs to each other. Other families simply do not get along. If you don't feel comfortable talking with family members, ask a member of your health care team to help. You could also ask a social worker or other professional to hold a family meeting. This may help family members feel that they can safely express their feelings. 

It can also be a time for you and your family to meet with your entire health care team to solve problems and set goals. Although it can be very hard to talk about these things, studies show that cancer care is a smoother process when everyone remains open and talks about the issues. 

Children

Keeping your children's trust is very important at this time. Children can sense when things are wrong. So it is best to be as open as you can about your cancer. 

Children may worry that they did something to cause the cancer. They may be afraid that no one will take care of them. They may also feel that you are not spending as much time with them as you used to. Although you can't protect them from what they might feel, you can prepare them for these feelings. 

The document in "To Learn More" provides general guidelines for telling underage children and tips for different age groups. 

Adult Children 

Your relationship with your adult children may change now that you have cancer again. You may have to rely on them more. And it may be hard for you to ask for support. After all, you may be used to giving support rather than getting it. 

Adult children have their concerns, too. They may start to think about their own mortality. They may feel guilt, because of the many demands on them as parents, children, and employees. Some may live far away or have other duties. They may feel bad that they can't spend as much time with you as they would like. Often it helps to: 

  • Share decision-making with your children. 
  • Involve them in issues that are important to you. These may include treatment choices, plans for the future, or activities that you want to continue. 
  • If they are not able to be there with you, keep them updated on your progress. 
  • Make the most of the time you have. Share your feelings with them. 
  • Try to reach out to your adult children. Openly sharing your feelings, goals, and wishes will help them adjust. It will also help prevent problems in the future. 

Remember, just as parents want the best for their children, children want the best for their parents. They want to see your needs met effectively and with compassion. Your children don't want to see you suffer. 

To Learn More

More Information

Children: Telling The News

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Children 101

WHEN YOU START TREATMENT, READ SURVIVORSHIP A TO Z "IN TREATMENT" AS A REMINDER OF WHAT YOU NEED TO KNOW TO HELP YOU THROUGH TREATMENT

You can see "In Treatment" by clicking here.