Cancer Diagnosis? What You Need to Know
An Important First Step
When you have a cancer diagnosis, it is normal to feel frightened, sad and worried. People who have had cancer often talk about experiencing three feelings: loss of control, unwanted aloneness and loss of hope.
These resources, tips and guides can help you gain a sense of control as you face decisions about your treatment and care. We can help you navigate the health care system so you can manage the tests, doctor's appointments, and insurance issues.
Here at the Cancer Support Community you can find that you are not alone, regain a sense of control, and learn there is always hope.
The next few weeks will be a busy time, as you face decisions about your treatment and care. Navigating the health care system – the tests, doctor’s appointments, figuring out insurance and more – can feel overwhelming. But it is ok to ask for help.
One of the first things to do is think about who in your life is a helping presence. It might be your spouse or partner, friends, faith community, support group, or co-workers. Make a list of specific ways they can help.
If you are unsure of what to ask people to do, below are some questions to consider:
- Who would I like to talk with about treatment decisions? Or join me at appointments?
- Who can help me with practical support, such as figuring out work leave, meals, family care, driving or cost of care questions?
- Who can help serve as a point person to keep other people updated?
- Are there other people in my life that will also need help? Who can help them?
People on your health care team, particularly a nurse or social worker, can help you find resources for social, emotional, and practical support.
Becoming an Active Member of Your Health Care Team
Becoming an active member of your health care team can help you regain a feeling of control and cope with cancer. One way you can do this is by learning more about your disease. By being well informed, you will feel more comfortable talking with your doctors and more confident in the decisions you make together. As you move forward, focus on these four steps:
- Find the right health care team for you.
- Communicate with your team.
- Understand the goals of treatment.
- Choose the right treatment for you.
Choosing Your Health Care Team for Cancer Treatment
An important decision you will make about your cancer treatment is choosing a doctor, a team and a cancer center that has the expertise to treat your cancer.
As you learn about your cancer diagnosis and treatment options, ask your doctor how soon you need to make a treatment decision. You may seek a second or even third opinion. Being able to talk openly and feel comfortable with your doctor, nurse, social worker, and other office or health care team staff is important.
Here are some questions to consider asking as you choose your team:
About your cancer diagnosis:
- What is the exact name of the kind of cancer I have?
- What is the type, subtype, and stage? What does that mean?
- Where did the cancer start? Where is it located now?
- What symptoms of cancer might I experience?
- Are there other biomarker tests, scans, and biopsies that should be done to help decide what treatment I should have?
- Where can I get a second opinion?
About your cancer treatment:
- How much experience do you have in treating my specific type of cancer? Are you board certified as an oncologist or are you certified in another specialty?
- Are you associated with a major medical center, medical school, or comprehensive cancer center?
- What are the treatment goals (is it to cure the cancer, control the cancer, or relieve symptoms)?
- Which treatment do you recommend, and why?
- Are there treatment options are available for me?
- What are the risks and benefits of each treatment option?
- What side effects might I experience, and how can they be managed or prevented?
- What treatments and other services are covered by my insurance? What options are there to help cover costs?
- Where can I get a second opinion?
- Are there any clinical trials here or somewhere else that might be appropriate for me?
- What emotional and practical support services are available to me and my loved ones?
Making the Most of Your Doctors Visits
It is ok to ask any questions you have. You have the right to understand medical terms and cancer treatment options. You have the right to make choices about your treatment and care, even if the opinion of your doctor is different.
Talking about how you feel—and what you do or do not understand—helps both you and your doctor take care of your health. Your visits can go by quickly. Here are some suggestions to help before, during and after:
- Before the visit, take a few minutes to think about and write down any questions you have
- Bring a friend or family member with you to help take notes—or ask a nurse.
- If your doctor prescribes new medications, follow-up tests, or other things you need to do after the visit, write this information down. Once your doctor is done, read your notes back to the doctor or nurse. This will help to catch any information you may have missed or didn’t understand.
- Always ask questions if you have them. If you don’t have any questions at that time, ask who you can reach out to if you have questions later on.
- Write down the time and date of your next appointment.
Learn how to get organized and comfortable in asking the questions you need to have answered as you work together with your doctor to make a decision about which treatment is right for you.
Coping with Cancer
It may be hard to feel hopeful when you have cancer. But, maintaining hope can be so important. Hope can come from inside yourself, or from talking with family, friends, or members of your health care team. There are many ways to hope. Your hopes may relate to cancer – like good news from your doctor or relief from symptoms or side effects. Or, you might hope that tomorrow will be a sunny day and you can get out in your garden, or you may hope to spend time with your friends and family doing something you enjoy.
The main thing is not to let go of hope, to keep setting goals, and to keep finding things in your life that matter and bring you happiness. Hopes can give you energy to keep going, even when you are feeling down.
Coping with Stigma/blame/shame
Cancer can cause feelings of guilt or shame. You may feel like others blame you for developing cancer. You may blame yourself. You may be upset with yourself because you “should have stopped smoking, exercised more, lost weight, drank less alcohol, gone to the doctor more, or gotten that preventive screening sooner. You may see these thoughts as coming from your friends, family, or health care team.
In some cases, there may be a stigma associated with the kind of cancer you have. Stigma occurs when a group has negative or unfair beliefs about something. Stigma, or perceived stigma, can be isolating and interfere with your ability to take the steps you need to move forward. If you feel blame, shame, or stigma, it is important to remember:
- The causes of cancer are still largely unknown.
- Having a risk factor does not mean that you will get a disease. It is impossible to know who will get cancer, or when.
- Cancer can grow very quickly. Even people who stay on top of health care are sometimes diagnosed with late stage cancers.
- Most importantly, no one deserves cancer. And everyone with cancer deserves high-quality health care and support.
- Forgive yourself and focus on what you need to do now. If these thoughts become overwhelming, look for support in the form of a support group or counselor.
More Tips to Cope
It's normal to experience new emotions, life changes, and health concerns after a cancer diagnosis, from loneliness to fatigue to worries about the future.
Getting A Second Opinion
Many people find that it helps to get a second or even third opinion from another oncologist or cancer center. Some doctors even encourage it. Talking with a second doctor can help you better understand your disease and how to treat it. Other doctors may offer different treatments, different support services, or be a better fit in other ways. Do not worry about hurt feelings. If your doctor discourages you from getting a second opinion, this may be more of a reason to get one. Ask your doctor for suggestions of someone to see for a second opinion. Or, use these resources:
Understanding Your Treatment Goals and Options
As you start to learn about possible treatments, you will be asked to make decisions. Work with your health care team to understand the options and think about what is important to you. Before recommending a treatment, your doctor will consider, among other factors:
- The type and subtype of cancer you have
- The treatment you have already had
- The drug’s potential side effects
As you consider treatments, be sure to:
- Ask questions. Learn about the different treatments. Find out why one might work better for you than another.
- Ask about the goal of each recommended treatment. Tell your health care team about your goals.
- Ask about possible side effects.
- Ask about clinical trials.
- Talk with family, friends, and your health care team. Tell your health care team about special events coming up for which you want to feel as well as possible.
- Seek support.
- Consider getting a second or even third opinion.
Managing Treatment Side Effects
As you prepare to start treatment, take the time to learn about the side effects of the treatment you are considering. There may be steps you can take or choices you can make to help make treatment a little easier.
- You probably won’t have all the possible side effects of any treatment. These lists can seem endless. They include every possible side effect you can get for many drugs. You probably will not have all or even most of the side effects listed.
- Your health care team can help you manage symptoms and side effects. Discuss possible side effects with them before you begin treatment. Know what may happen and how side effects will be managed. Ask if there is anything you can do or take in advance to prevent or lessen side effects. Ask to talk with a palliative care specialist if one is available.
- Your health care team only knows what you tell them. Your health care team can help you if they know what you are experiencing. Report any change you notice as soon as you notice it. Often, side effects can be successfully managed, but your team needs to know about them.
- You can benefit from new ways to manage symptoms and side effects. In the last few years, new treatments have been found for nausea, diarrhea, inflamed throat, heartburn, hot flashes, and other common side effects. Even if you suffered from these side effects in the past and did not have effective treatments, you might find that better treatments are available now.
- You are not alone. Other people have been through the same treatment and may have had the same side effects. Support groups, hotlines, and online groups for people with metastatic breast cancer are great places to get practical advice from others who have found ways to live well with metastatic breast cancer and cope with symptoms and side effects.
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FSAC Coping with Side Effects Book
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