It can be devastating when cancer comes back and you may feel more cautious, guarded, less hopeful and disappointed in your body and cancer care team. CCGYN is here to support you on your cancer journey and can provide support every step of the way. You can also sign up for our newsletter here, to begin receiving encouragement, events, and more, straight to your inbox! Check out the article below for more on the many issues and questions that come with cancer recurrence.
Could I have done something to prevent the recurrence?
Many people blame themselves for missing a medical appointment, not eating right, or putting off blood work or imaging test. But even if you do everything just right, cancer can come back.
Even with our current knowledge of how cancer develops and grows, it’s still a mystery in many ways.
For some people, looking for an answer to “Why me?” can cause sleepless nights and incredible soul searching. Others find that it doesn’t really matter why something has happened – how best to deal with it is more important.
Worry can drain people of energy that is needed to help cope with the illness. If you find yourself unable to move beyond this question, talk with your cancer care team. You may need a referral to a mental health professional who can help you work through these feelings.
Treating cancer recurrence
If cancer comes back, your doctor will talk with you about treatment options and how effective each one is likely to be.
Be sure you understand the goal of each treatment you are considering. Is it to control the cancer? Is it to cure? Is it to make you more comfortable? You might also decide to get a second opinion or get treated at a cancer center that has more experience with your type of cancer.
Clinical trials usually are offered for patients with cancer recurrence, too. If you’re thinking about a clinical trial, you’ll want to know the goal of the clinical trial and its chances of helping you.
Please remember: It’s very important to check on your insurance coverage along with the medical care options you are thinking about.
“Why can’t I get the same treatment for the recurrence as I did the first time?”
Some people do end up having some of the same types of treatment that they had for their first bout with cancer. For instance, a woman with breast cancer that recurs in the breast may have surgery again to remove the tumor. She may also get radiation therapy, especially if it had not been given before. Next, she and her doctor may consider chemotherapy and/or hormone therapy.
Treatment decisions are based on:
- Type of cancer
- When it recurs
- Where it recurs
- How much it has spread
- Your overall health
- Your personal values and wishes
Another thing to think about is that cancer cells can become resistant to chemo. Tumors that come back often do not respond to treatment as well as the first tumors did.
Another reason your doctor may use a different treatment is because of the risk of its side effects. For example, certain chemo drugs can cause heart problems or nerve damage in your hands and feet. To keep giving you that same drug would risk making those problems worse or lead to long-term side effects.
Ask your cancer care team why a certain course of treatment is recommended for your recurrence at this time. Discuss your options with your team, with members of your support group, and especially with members of your family.
“I need surgery for my cancer recurrence but we can’t schedule it for a month and a half. I want this thing out! How long is too long to wait – how much will the cancer spread while I am waiting for the doctor to work me into his schedule?”
Research is still being done on questions like this, but for most cancers there’s time before you must decide on or start treatment for recurrence. Remember that cancer cells multiply until they grow enough to form a tumor or something that can be seen in a blood test or on a scan. This takes time. Usually there’s some time to make a thoughtful decision about the right treatment option for you.
You might take time to get a second opinion. And be sure to discuss all the options with your cancer care team and your family. You need to feel like you’ve made the best decision for you. Talk to your doctor if you are worried about waiting to start treatment
“What are the chances of treatment working this time? What are the chances of the cancer coming back again after this treatment? It seems like it will just go on and on and keep coming back…”
These questions are very hard to answer. There’s no way to answer with exact percentages. The answers depend entirely on your situation and many different factors including
Type of cancer you have
- Length of time between the original diagnosis and recurrence
- Aggressiveness of the cancer cell type
- Your age
- Your overall health status
- Your treatment regimen
- How well you tolerate treatment
- The length of time you are able to take treatment
Scientists are studying genetic tests that may predict how likely it is that cancers such as breast, colon, and melanoma will come back. There are formulas that can help estimate the chance of recurrence for a few types of cancer. But even with such predictions, the uncertainty of recurrence cannot be avoided. This is one reason recurrence is so hard to cope with. There are no guarantees that you can hold on to.
How do I know if I should keep getting treatment?
There’s no one answer to this question. It depends on the type of cancer, how it’s affecting you, what your cancer care team is telling you, and what you and your family are thinking and feeling about the situation. During cancer treatment (even if the treatment isn’t working well), you’re under a doctor’s care, the cancer’s progress is being slowed, and side effects and symptoms are being watched and treated. For some, getting cancer treatment helps them feel better and stronger, because they’re doing something to fight the cancer. For others, being in treatment works the opposite way – it might make them feel more tired or less free. Only you can decide how you want to live your life. Of course, you will want to hear how your family feels about it, too. Their feelings are important since they are living through the cancer with you. But keep in mind, the final decision is up to you.
Whether or not you want cancer treatment, you should always get supportive or palliative care. This care treats any symptoms but is not expected to cure the cancer or prolong life. It’s care that focuses on making your life the best it can be, even if there’s not a good chance of curing the cancer.
Treatment is given even though a cure isn’t expected. For many patients, cancer can be controlled this way for years. Treatment can be used to shrink the cancer, help relieve symptoms, and help you live longer. Even though it can be hard to do, many families adjust to this kind of treatment schedule.
How do people cope emotionally when cancer recurs?
Not everyone has the same emotions and thoughts when cancer comes back. And not everyone has the responses shared here, but many have concerns and questions like these.
“I am so angry and upset! The cancer was gone! These are supposed to be my golden retirement years. Now I’m facing more treatment. It’s all my doctor’s fault.”
It’s understandable to be very upset when you expect one thing to happen and the opposite does. The last thing anyone expects is to have to go through more treatment for a cancer that they thought was gone. It’s normal to want to blame someone. A natural choice is your doctor. After all, this is the person who treated you the first time and said you appeared to be cancer-free.
You may think your doctor didn’t do something right during your first treatment. Maybe you think your doctor didn’t follow up with you closely enough. Or maybe you feel you were not listened to as closely as you should have been. Whatever your feelings, they must be dealt with now. There are some things you can do to help resolve any issues you have at this time. You might try discussing your concerns with your doctor. See if you can clear up any bad feelings you have about how your treatment was handled.
It’s highly unlikely that any doctor would intentionally not treat you as well as possible the first time. When you think about it that just doesn’t make sense. Your doctors want you to do well; this is what makes the doctor successful, too. But if you feel it’s not possible to work with your current doctor, it may be wise to find a new one. You might find that a fresh start with a new cancer care team will help you improve your attitude and feel better about your current situation.
Feeling angry and upset about a cancer recurrence is completely normal, and you might need support and someone to talk to about these feelings. There are different sources for this type of support. For some, their support community is their place of worship. For others, a formal support group or online support group can be helpful. Other cancer survivors who have faced recurrence can understand and offer support like no one else. Still, some people prefer the privacy of one-on-one counseling. Ask your friends, family, or a trusted doctor for a referral. Just make sure that you are finding an outlet for your feelings. You deserve to be heard.
Depression and anxiety
Some degree of depression and anxiety is common in people who are coping with cancer recurrence. But when a person is emotionally upset for a long time or is having trouble with their day-to-day activities, they may have a depression or severe anxiety that needs medical attention. These problems can cause great distress and make it harder for you to follow a treatment schedule.
Even if you are clinically depressed or anxious, you have some things going for you.
- Depression can be treated and treatment usually works well.
- Improving your physical symptoms and taking action may help make your mood better.
- You’ve already been in a battle with cancer once and you learned a lot along the way. Try the things you that helped you then. Those same relationships and coping skills may help you now.
Family and friends should watch for symptoms of distress. If they notice symptoms of depression or anxiety, they should encourage the person to seek the help of a health care professional. Anxiety and clinical depression can be treated many ways, including medicine, psychotherapy, or both. These treatments can help a person feel better and improve the quality of their life.
Fear of death
“I am only 35 years old. How am I supposed to deal with cancer recurrence? I’m too young to die.”
Cancer is hard at any age, but it’s especially hard to cope with when you are young and believe you have a full, long life ahead of you. Cancer recurrence may seem even more unfair then. Worse, it’s often more aggressive in the younger cancer survivor – it may grow and spread faster. This aggressiveness means that it could come back earlier and be harder to treat.
Death is a painful prospect, one that calls for thoughtful processing and even preparation. First of all, a talk with your cancer care team can give you some idea how realistic your fears and concerns are. You need to get support that works for you so you can talk about and express your feelings about recurrence. You can also learn more about yourself and explore the meaning of your life. Sometimes our lives have a purpose and meaning we cannot see clearly. It can be very helpful to discover that purpose and take pleasure from it when it seems there’s no hope.
There are different ways to look at and talk about cancer that has come back. Is there a chance you might not survive your cancer recurrence? Yes. Does that mean there’s no hope? No. When cancer comes back, you may find that your hopes are very different from those you had when you were first diagnosed.
There’s no denying the situation is more serious if the cancer has come back, but for many people, this simply means that treatment will be different and perhaps more aggressive than it was at first. It’s important for you to talk to your cancer care team. They can give you a good idea of what you can expect to happen. It may be that your cancer is not likely to be cured, but there are things that can be done to keep it from growing. You and your family should be clear about the goal of any treatment.