Newly Diagnosed

When the Doctor Says Cancer

Three years ago, Valarie Spiser-Albert was diagnosed with cholangiocarcinoma. She was told she had 6-8 months to live but her with her positive attitude, she beat the odds. View her story. It is a situation that is universally feared: sitting in the doctor’s office and hearing that you have cancer. People diagnosed with cancer often say they were stunned upon hearing the diagnosis, unable to hear much of what was said afterward. After the initial shock, most people begin to look for sources of support.

Multi-disciplinary Team

Cholangiocarcinoma can be difficult to both diagnose and treat. If possible, newly diagnosed patients should go to a major cancer center or medical institution that provides cholangiocarcinoma patients the option to have their specific case seen by a tumor board and/or multidisciplinary team before receiving any kind treatment. A tumor board consists of a medical oncologist, surgical oncologist and a radiation oncologist – this team would jointly view your medical records making a recommendation for the best course of treatment for each individual patient. A multi-disciplinary team consists of the above (a medical oncologist, surgical oncologist and a radiation oncologist) plus any or all of the following: Interventional Radiologist, Advanced Gastroenterologist, Cancer Registrar, Genetic Counselor, Clinical Trial Coordinator. It is very important to find a doctor and team who is experienced in treating cholangiocarcinoma. The following questions may be appropriate to ask your oncology team members:

  • How many years’ experience do you have treating cholangiocarcinoma?
  • How many patients with cholangiocarcinoma do you see each year?
  • Are you Board certified in your medical specialty?
  • Do you participate in clinical trials for Hepatobiliary cancers?
  • What other sources of support are available to me at your institution? (Social worker, nutritionist, nurse-educator, financial counselor, cancer support groups).
  • How do I contact my doctor/nurse/team?
  • Do you accept my insurance?

Gather Information

It is important to understand your disease and the process of diagnosing and treating it. During the initial visit, absorbing the news of cancer and its unfamiliar medical language may be difficult to comprehend. You may want to take a family member or a friend who will not only be supportive to you, but can also act as your ears and memory. A tape recorder can also achieve the same goals of obtaining information. However you choose to accurately record information, it is important to do so. Getting the facts right about your situation will help you make appropriate decisions in the coming days. Additionally, being an informed, involved patient and voicing your questions and concerns can be helpful to you and your doctor and nurse in forming a partnership in your care. It is understood that some patients want to know more information and others less. Make your doctor and nurse aware of how you prefer to be given information about your diagnosis, treatment, and prognosis. Don’t be afraid to ask questions or to let your doctor know that you don’t know what questions to ask. The following questions may be appropriate to ask your oncology team:

  • What is the exact type and name of the cancer I have?
  • How was it diagnosed?
  • What tests were taken and what did they show?
  • Will I need additional tests to further diagnose my disease?
  • What stage is the cancer and what does that mean?
  • What are my treatment options and what side effects can I expect?
  • What is my prognosis? What will my quality of life be?
  • What are the next steps?

Get organized

As you visit your oncologist or surgeon or speak with your radiation oncologist, you will gather a large amount of paperwork, test results, and personal notes. Create a system for all these papers that will streamline correspondence with your insurance company and help you communicate more accurately with your specialists. A good system will allow you to make the most of your time with your health-care providers by having your questions readily available and information close at hand. For more information on how to get organized, see Managing Your Care.

Consider a second opinion

A second opinion is standard practice in medical care. A second opinion can provide you with additional knowledge, additional treatment options and access to a different medical facility. A second opinion can also give you confidence that you are on the right course with the doctor you saw first. Many doctors encourage their patients to seek second opinions. The more knowledgeable you are, the better care you will receive, no matter where that care is.

Residents of California: The Second Opinion is a non-profit organization that provides multidisciplinary second opinions to newly diagnosed or recurring cancer patients.  For more information on this service, please reference the following website: thesecondopinion.org

Absorbing news of cancer and communicating with your doctor are part of the coping process. Many resources are available to understand the nature of coping. Your oncologist can provide resources, including names of psychologists, group therapists, and written materials. Don’t be afraid to ask for them. Understanding your emotions—and those of people close to you—can be helpful in managing your diagnosis, treatment, and process of healing.

Illness changes our relationship to the world. Being diagnosed with cancer is a difficult experience, and it is inevitable that there will be days when you cannot make yourself feel hopeful. That is normal, especially if you feel physically sick or tired. Take care of yourself during those difficult times and realize that much has been learned and applied in recent years to help ease the process of cancer treatment as much as possible. Talk to your health-care team about what can be helpful.

Adapted from The American Cancer Society: http://www.cancer.org/

handn-branchGood nutrition is especially important if you have cancer because both the illness and its treatment can affect your appetite. Cancer and cancer treatments can also affect your body’s ability to tolerate certain foods and use nutrients.

Dietary Supplements

Dietary supplements include things like vitamins, minerals, herbs, or products made from plants, animal parts, algae, seafood, or yeasts. The information here can help you learn more about dietary supplements so you can make a more informed decision about using them safely.

Adapted from The American Cancer Society: http://www.cancer.org/

It’s important to exercise as much as you can to keep muscles working as well as possible. Exercise helps prevent problems that are caused by long-term bed rest, such as stiff joints, weak muscles, breathing problems, constipation, skin sores, poor appetite, and mental changes. It also helps reduce stress and relieve fatigue. Talk with your doctor about exercises that you can safely do, and then set goals for slowly increasing your physical activity level.

Should I exercise during cancer treatment and recovery?

Research strongly suggests that exercise is not only safe during cancer treatment, but it can also improve physical functioning and many aspects of quality of life. Moderate exercise has been shown to improve fatigue (extreme tiredness), anxiety, and self-esteem. It also helps heart and blood vessel fitness, muscle strength, and body composition (how much of your body is made up of fat, bone, or muscle).

People getting chemotherapy and radiation who already exercise may need to do so at a lower intensity and build up more slowly than people who are not getting cancer treatment. The main goal should be to stay as active as possible and slowly increase your level of activity over time after treatment.

Are there special precautions survivors should consider?

Certain issues for cancer survivors may prevent or affect their ability to exercise. Some effects of treatment may increase the risk for exercise-related problems. For instance:

  • People with severe anemia (low red blood cell counts) should delay activity until the anemia is better.
  • Those with weak immune systems should avoid public gyms and other public places until their white blood cell counts return to safe levels.
  • People getting radiation should avoid swimming pools because chlorine may irritate the skin at the treatment area.

If you were not active before diagnosis, you should start with low-intensity activities and then slowly increase your activity level. Certain people should use extra caution to reduce their risk of falls and injuries:

  • Older people
  • Those with bone disease (cancer in the bones or thinning bones, such as osteoporosis)
  • People with arthritis
  • Anyone with nerve damage (peripheral neuropathy)

Can regular exercise reduce the risk of cancer coming back?

This has not been looked at for all types of cancer, but there have been studies of survivors of breast, colorectal, prostate, and ovarian cancers. In these studies, people with higher levels of physical activity after diagnosis lived longer and had less chance of the cancer coming back. Still, more studies are needed to see if exercise has a direct effect on cancer growth. In the meantime, since physical activity is known to prevent heart and blood vessel disease, diabetes, and osteoporosis, cancer survivors should try to have a physically active lifestyle.

What the patient can do

  • Do as much daily self-care as possible.
  • Take a walk every day.
  • Talk with your doctor or cancer team about the kind of exercise you can do to help reduce fatigue and give you more energy.
  • If you’re confined to bed, do range-of-motion exercises as instructed by your nurse, doctor, or physical therapist. In active range of motion, you move a joint without any help from others. Passive range of motion is when someone else moves it for you. Either type of range-of-motion exercises can be done without getting out of bed. Try not to move any joint that is painful.

Call the doctor if the patient:

  • Gets weaker, starts losing their balance, or starts falling
  • Has new pain or pain that gets worse
  • Has headaches or gets dizzy
  • Has blurred vision, new numbness, or tingling in arms or legs

Adapted from The American Cancer Society: http://www.cancer.org/