Taking Control: Your Care and Treatment
Cancer that returns can affect all parts of your life. You may feel weak and no longer in control. But you don't have to feel that way. You can take part in your care and in making decisions. You can also talk with your health care team and loved ones as you decide about your care. This may help you feel a sense of control and well-being.
Talking With Your Health Care Team
Many people have a treatment team of health providers who work together to help them. This team may include doctors, nurses, oncology social workers, dietitians, or other specialists. Some people don't like to ask about treatment choices or side effects. They think that doctors don't like being questioned. But this is not true. Most doctors want their patients to be involved in their own care. They want patients to discuss concerns with them.
Here are a few topics you may want to discuss with your health care team:
- Pain or Other Symptoms. Be honest and open about how you feel. Tell your doctors if you have pain and where. Tell them what you expect in the way of pain relief. (See Chapter 4 for more about pain and other symptoms.)
- Communication. Some people want to know details about their care. Others prefer to know as little as possible. Some people with cancer want their family members to make most of their decisions. What would you prefer? Decide what you want to know, how much you want to know, and when you've heard enough. Choose what is most comfortable for you. Then tell your doctor and family members. Ask that they follow through with your wishes.
- Family Wishes. Some family members may have trouble dealing with cancer. They don't want to know how far the disease has advanced. Find out from your family members how much they want to know. And be sure to tell your doctors and nurses. Do this as soon as possible. It will help avoid conflicts or distress among your loved ones. (See Family and Friends to read more about talking with your loved ones.)
Other Tips for Talking With Your Health Care Team
- Speak openly about your needs, questions, and concerns. Don't be embarrassed to ask your doctor to repeat or explain something.
- Keep a file or notebook of all the papers and test results that your doctor has given you. Take this file to your visits. Also keep records or a diary of all your visits. List the drugs and tests you have taken. Then you can refer to your records when you need to. Many patients say this is helpful, especially when you meet with a new doctor for the first time.
- Write down your questions before you see your doctors so you will remember them. (See below.)
- Ask a family member or friend to go to the doctor's office with you. They can help you ask questions to get a clear sense of what to expect. This can be an emotional time. You may have trouble focusing on what the doctor says. It may be easier for someone else to take notes. Then you can review them later.
- Ask your doctor if it's okay to tape-record your talks.
- Tell your doctor if you want to get dressed before talking about your results. Wearing a gown or robe is distracting for some patients. They find it harder to focus on what the doctor is saying.
There are many treatment choices for recurrent cancer. Your treatment will depend partly on the type of cancer and the treatment you had before. It will also depend on where the cancer has recurred. For example:
- A local recurrence may be best treated by surgery or radiation therapy. This means that the doctor removes the tumor or destroys it with radiation.
- A distant recurrence may need chemotherapy, biological therapy, or radiation therapy. (For more information see the NCI booklets Radiation Therapy and You and Chemotherapy and You.)
It's important to ask your doctor questions about all your treatment choices. You may want to get a second opinion as well. You may also want to ask whether a clinical trial is an option for you.
Should I Get A Second Opinion?
Some patients worry that doctors will be offended if they ask for a second opinion. Usually the opposite is true. Most doctors welcome a second opinion. And many health insurance companies will pay for them.
If you get a second opinion, the doctor may agree with your first doctor's treatment plan. Or the second doctor may suggest another approach. Either way, you have more information and perhaps a greater sense of control. You can feel more confident about the decisions you make, knowing that you've looked at your options.
Treatment clinical trials are research studies that try to find better ways to treat cancer. Every day, cancer researchers learn more about treatment options from clinical trials.
Each study has rules about who can take part. These rules include the person's age and type of cancer. They also cover earlier treatments and where the cancer has returned.
Clinical trials have both benefits and risks. Your doctor should tell you about them before you make any decisions about taking part.
There are different phases of clinical trials. They include:
- Phase I trials test what dose of a treatment is safe and how it should be given.
- Phase II trials discover how cancer responds to a new drug or treatment.
- Phase III trials compare an accepted cancer treatment (standard treatment) with a new treatment that researchers hope is better.
Taking part in a clinical trial could help you and others who get cancer in the future. But insurance and managed care plans do not always cover the costs. What they cover varies by plan and by study. If you want to learn more about clinical trials, talk with your health care team.
For more information about clinical trials, see NCI's brochure Taking Part in Cancer Treatment Research Studies.
Questions to Ask Your Doctor or Nurse About Treatment Choices
Decide on the most important things you need to ask your doctor or nurse. Some ideas:
- What are my treatment choices?
- Which do you suggest for me?
- How is this treatment the same as or different from my last treatment?
- How successful is the treatment you recommend? Why is it best for me?
- Will I still be able to do things I enjoy with the treatment? Without the treatment?
- How long will I be on this treatment?
- Will I have side effects? If so, how long will they last?
- How can I manage the side effects?
- Will I have to stay in the hospital?
- Is a clinical trial available to me?
- Will I have to pay any costs in a clinical trial?
- If the treatment doesn't work, then what will I do?
Making Your Wishes Known
When cancer returns, the treatment goals may change, or they may be the same as they were for your first cancer. But for many people, it's the second cancer diagnosis that finally prompts them to make their wishes known. Although it can be tough to think about, and maybe even tougher to talk about, having recurrent cancer may prompt you to make certain decisions about what you want done for you if you are unable to speak for yourself.
Everyone should make a will and talk about end-of-life choices with loved ones. This is one of the most important things you can do. Also, think about giving someone you trust some rights to make medical decisions for you. You give these rights through legal documents called advance directives. These papers tell your loved ones and doctors what to do if you can't tell them yourself. They let you decide ahead of time how you want to be treated. These papers may include a living will and a durable power of attorney for health care.
Setting up an advance directive is not the same as giving up. Making such decisions at this time keeps you in control. You are making your wishes known for all to follow. This can help you worry less about the future and live each day to the fullest.
It's hard to talk about these issues. But it often comforts family members to know what you want. And it saves them from having to bring up the subject themselves. You may also gain peace of mind. You are making these hard choices for yourself instead of leaving them to your loved ones.
Make copies of your advance directives. Give them to your family members, your health care team, and your hospital medical records department. That way, everyone will know your decisions.
Legal Papers At-A-Glance
- A living will lets people know what kind of medical care you want if you are unable to speak for yourself.
- A durable power of attorney for health care names a person to make medical decisions for you if you can't make them yourself. This person is called a health care proxy.
Other legal papers that are not part of the advance directives
- A will tells how you want to divide your money and property among your heirs. (Heirs are usually the family members who survive you. You may also name other people as heirs in your will.)
- Power of attorney appoints a person to make financial decisions for you when you can't make them yourself.
Note: You do not always need a lawyer present to fill out these papers. But you may need a notary public. Each state has its own laws about advance directives. Check with your lawyer or social worker about the laws in your state. (For more, see Resources.)