- Additional Tests Which May Be Recommended
- Colorectal Cancer Is Not What It Used To Be
- How To Make A Colorectal Cancer Treatment Decision
- Goals To Consider When Deciding About Whether To Take A Treatment
- Commit Yourself To Doing Everything You Can To Reach Your Goal(s)
- How To Choose The Best Available Doctors And Surgeons
- Colon and Rectal Cancer: Standard Treatments
- Questions To Ask Before Agreeing To A Treatment
- What To Do When It Is Recommended That You Take A Medication
- Take Someone With You To Doctor Appointments (Patient Advocates)
- Tools That Will Make The Process Easier
- Use Your Diagnosis As A Wake Up Call To Start A Healthy Lifestyle
Colorectal Cancer: Managing Your Medical Care: Diagnosis to Treatment Decision
EACH OF THE FOLLOWING SUBJECTS ARE DISCUSSED IN DETAIL IN OTHER SECTIONS OF THIS ARTICLE
Colorectal cancer is usually diagnosed as a result of a colonoscopy. If a gastroenterologist performed the colonoscopy he or she will refer you to a medical oncologist (a doctor who specializes in chemotherapy treatments) and/or a surgeon. If the cancer is in the rectum or on the left side, a colorectal surgeon would be advisable. If the tumor is on the left it can usually be handled by a general surgeon.
Before making a treatment decision it is advisable to talk with both a medical oncologist and a surgeon. Also consider getting a second opinion from a doctor at an NCI certified comprehensive cancer center or a major medical center.
Treatments for colorectal cancer have come a long way. More people are cured today than even a few years ago. People who aren't being cured are being treated as having a chronic disease and are living better and longer lives. Both physical and emotional symptoms can be treated.
Before agreeing to a treatment, think about your goals and commit yourself to doing every thing you can to reach them. For instance, a goal could be to live with no evidence of colorectal cancer, or it could be to live as pain free as possible.
Best results occur for people who choose the best available medical care -- including qualified and well trained doctors and surgeons who have performed a large number of the procedures you may need. The quality of the hospital in which the doctor(s) work is also important.
Since you will likely have more than one doctor, there needs to be a team leader. If a team leader doesn't emerge naturally, ask one of your doctors to be the leader.
While you are likely to want to start treatment as soon as possible, as a general matter, a decision about what treatment to have does not have to be made immediately.
- All too often, a decision about what treatment(s) to undergo is made during the initial visit to an oncologist or a colorectal surgeon. It is usually advisable to consider all treatment options carefully and if possible discuss them with your healthcare team. It is also helpful to give yourself time to let emotions that arise on news of a diagnosis settle so you can make a decision with as clear a head as possible. (For information about emotions and how to lessen their effect, click here.)
Ask the doctor who will be managing your care and treatment how long you have to begin treatment. You can then work backwards to set dates by which the various aspects of what needs to happen prior to treatment actually happen.
Use this time to find the best doctor for your needs, learn about the pros and cons of available treatments, compare the different treatments for your goals and stage of disease. Then decide, with your medical team, which is the best treatment for you. (To learn how to finance treatment, see Colorectal Cancer Finances).
When it comes to making a medical decision:
- Keep in mind that there is no one answer that fits all when it comes to colorectal cancer.
- Although there are standards of care for each stage specifics may differ.
- There can be disagreement about whether, and if so, how, cancers will progress.
- Top experts can disagree on the most effective treatment for a particular situation.
- Decide who you want to be the medical care decision maker: you, the doctor or a third person.
- Medical decisions may not be as clear cut as you would like. Medicine is a combination of science and art.
- Keep in mind that people who are the most active participants in their health care tend to do better. The ultimate active patient is the decision maker. However, the key is what works for you. It is your body and your decision. There is no right or wrong when it comes to who makes medical decisions.
- Professional help is available for making treatment decisions.
- Learn what you need to know to be as informed as you want to be.
- The learning curve is similar to the learning curve we all go through when considering any major decision that we don't specialize in.
- No one needs to learn enough to become a doctor. You only need enough information to be able to have a precise discussion with your medical team and to make informed decisions.
- It may seem like there is a lot to learn in a short period of time. The amount of time and energy required will be reduced if you limit what you need to know which is described below. How much you want to learn, if anything, beyond the bare minimum, is up to you.
- Be clear with all medical personnel and with the people around you who are trying to help, about how much information and details you want to know. We all have a point where too much information puts us into overload. Where that point is differs from person to person.
- It is advisable to at least learn the following:
- A general understanding of the colon. (For basic information, click here.)
- What type of colorectal cancer do I have? The type is described in your pathology report which has to be written in understandable language. (
- What is the stage? Staging describes whether colorectal cancer has spread to other parts of the body. The extent of the treatment will be matched to the extent of spread of the disease. The more extensive the spread, the more intense the treatment. To learn about colon cancer staging, click here. To learn about rectal cancer staging, click here.)
- If the cancer has spread, where has it spread to?
- Basic cancer terms. For example:
- Lymph node (also known as a lymph gland): A small rounded or bean-shaped mass of lymphatic tissue. Lymph nodes filter lymphatic fluid. Lymph nodes are critical to the immune system and fighting infection. Lymph nodes are located in many places on the lymphatic system throughout the body.
- Metastasis (meh-TAS-tuh-sis). Sometimes cancer cells break away from a tumor and spread to other parts of the body through the lymphatic system or bloodstream. The cells can settle in other places in the body and form new tumors. This is called metastasis. Even when cancer has spread to a new location in the body, it is still named after the part of the body where it started. If colorectal cancer spreads from the colorectum to the liver or lungs it is still called colorectal cancer.
- For a list of common cancer terms and their meaning, click here .
- The tests your doctor may suggest. (For a list of diagnostic tests, click here
- if you want to do financial planning, it is helpful to also learn about the statistics concerning your particular situation. If you do ask,please keep in mind that statistics do not indicate what will happen to any individual, much less to you. Statistics are about large numbers of people and are about the past. They do not take into account continuing medical advances. For information about financial planning for a person diagnosed with colorectal cancer, click here.
With respect to potential treatments:
- Be aware that treatment options depend on the following:
- The stage of the cancer
- Whether the cancer is in the colon or the rectum
- Your general health
- Learn the pros and cons of the available treatments for your particular situation. It is not unusual for people to focus on the possibility of ostomies and diarrhea due to a particular treatment. No treatment for colorectal cancer is totally free of the possibility of a challenging side effect. However, do not lose sight of the goal of staying alive.
- Ask all questions of concern to you about available treatment plans, particularly about the treatment you are leaning toward using.
- At least raise the question with your doctor about cutting edge treatments available through clinical trials. Knowing what clinical trials are available may help tip the decision of which treatment to take now. Some studies are only open to people who are "treatment naive" (people who have not yet had therapy for colorectal cancer) or only for people who have not had a particular treatment. For a clinical trials matching service, click here ).
- Consider looking at published treatment guidelines such as the guidelines published by National Comprehensive Cancer Network which are available online at www.nccn.org and/or hiring a research firm to uncover all available treatments including cutting edge experimental treatments and possibly adding another opinion.
- Make a treatment decision based on your own lifestyle and beliefs.
- When a drug is recommended, keep in mind that all drugs have risks as well as the benefits. Learn what they are. (For information about drugs, including how to purchase, store and dispose of them, click here.)
Based on interviews and our assessment of the literature, if you are not working with an NCI certified Comprehensive Cancer Center or a major medical center, Survivorship A to Z strongly recommends that before deciding on a treatment, consider getting a second opinion about both the diagnosis and recommended treatment from another colorectal cancer specialist -- preferably one at such a center or institution. Doctors who work with people who have been diagnosed with colorectal cancer are used to patients asking for a second opinion. Insurance companies are used to paying for second opinions. Insurance companies sometimes even pay for third and fourth opinions for people with a unique situation. (To learn how to get a second opinion, click here.)
Think of treatments such as acupuncture, Yoga, massage and the like as complementary to treatment - not "instead of" or as an "alternative to". While many of these treatments can be helpful, there is no scientific proof that any of them cure colorectal cancer. (To learn about complementary treatments, click here.)
Select a person to act as a patient advocate to go with you to doctor appointments - at least until a treatment decision is made. Such a person serves a variety of purposes, including helping to ask questions and to recap what was discussed after the meeting. Many cancer centers have patient navigators or oncology nurse navigators who can go to an appointment with you. Professional patient advocates are available if needed. (To learn about the value of a patient advocate and how to choose a patient advocate, etc, click here. For information about professional advocates, click here.)
Keep in mind that drugs and treatments do not work in a vacuum. You can help yourself by adopting a healthy cancer prevention diet and lifestyle.
- Just about all of us can eat healthier.
- With colorectal cancer, this particularly includes decreased meat and milk consumption.
- It may help to think of food as one of your medicines.
- It is better to make small changes you are comfortable with and can manage with treatment than trying to make huge lifestyle changes that may be unrealistic and frustrating.
- To learn more, click here.
- Start being active. Get exercise. Exercise doesn't have to be in a gym. Walking is good exercise. You can start with five minutes and build up. For more information, click here.
- Get needed rest and sleep. If you are having trouble sleeping talk to your treatment team about possible solutions. (If you have difficulty sleeping, click, here).
- Ask your doctor about taking vitamins and supplements and, if so, what brand(s) your doctor recommends. NOTE: It is important to inform your doctor of all vitamins, herbs, supplements and over the counter medications you take. Some interfere with treatment. (You can also check interactions on your own by obtaining a copy of Herb-Drug Interactions In Oncology by Barrie Cassileth et al from Memorial Sloan Kettering, 2010. Still, check with your doctor. There may be later information or there may be other aspects of your situation that would suggest not taking a specific herb, vitamin etc.)
- Avoid smoke.
- If you smoke, use the diagnosis as a wake up call to quit. (We provide some tips. Click here.)
- Stay away from second hand smoke. It is proving to be as unhealthy as smoking yourself.
Learn how to maximize your limited time with a doctor. Even the most caring doctors only have limited time for each patient. For example, prepare your questions and concerns ahead of time as well as a list of your symptoms by using our symptoms diary and prioritizer. For more information about how to maximize your time with a doctor, click here.
Start dealing with emotions that surface.
- The body and the mind are part of the same system.
- If you become so anxious and frightened that you become unable to think straight or take action, consult with a mental health professional who can help reduce anxiety enough so that you can participate in making medical decisions. (See "To Learn More" at the end of this document).
You do not have to live with pain, or other difficult side effects of your condition, drugs or treatment.
- The number one reason treatment is stopped early is due to side effects.
- There are remedies available. For information about pain, click here. For information about other side effects and how to deal with them, click here. Also talk with your doctor.
- Doctors usually start with the most cost effective remedy. If the first remedy you are given doesn't work, insist on something else. For example, there are at least ten different prescriptions for nausea and vomiting and many can be used in combination.
If you have children, brothers or sisters, a natural question is whether they are at risk for also developing colon or rectal cancer, and, if so, what should be done about it.
- 17-20% of colorectal cancer is hereditary which means that certain identifiable genes are passed from a parent to a child. The rest of cases are not gene related and thus do not affect children or brothers and sisters (siblings).
- The genes which increase the risk of children getting colorectal cancer are FAP familial adenenomatous polyposis and lynch syndrome or HNPCC.
- There are currently two tests for the subject genes. If a test shows that one of the genes is present, a genetic counselor should be consulted to decide what to do.
- The number one reason for surviving colorectal cancer is early detection. Recommendations depend on your age when diagnosed.
- If a person is under age 50 when diagnosed, the standard recommendation is: That a colonoscopy be performed, and that a genetic test should automatically be done. If one of the genes is present, children, brothers and sisters should be tested without undue delay.
- If a person is age 50 or over at diagnosis, (unless there has been a genetic test which shows the presence of one of the subject genes), children, brothers and sisters should be screened for possible presence of colorectal cancer starting ten years before the age of the diagnosed relative, or at age 50, whichever comes first. To clarify, if you were diagnosed at age 52, then your children, brothers and sisters should start being screened for colorectal cancer at age 42. How often the person should be screened after the initial test will be determined based on the initial findings. For information about screening techniques, click here.
- If you have children: In addition to following the above recommendation, start changing your children’s diet to a cancer prevention diet and make sure they get at least 30 minutes of exercise each day. These steps will help reduce the risk of colorectal cancer. If it does appear, their bodies will be in the best shape to fight it.
Last, but not least, gather the tools you need to make the process easier -- for instance:
- A method of recording your appointments so you can listen again at home.
- A binder, file system or online cache to start keeping copies of ALL of your medical records, including test results and scans. For information, click here.
- If you want someone else to make medical decisions for you, expect that the doctor will require you to sign a document allowing him or her to disclose your medical information to that person. This is because of the confidentiality requirements in the federal law known as HIPAA.
- You can continue to have control over medical decisions even if you become unable to communicate through legal documents known together as "Advance Healthcare Directives" or simply "Advance Directives." A Living Will is the advance directive we hear about most often but a Health Care Power of Attorney is the most all inclusive document to have. For more information, click here. Also consider Planning Ahead.
To Learn More
More InformationNewly Diagnosed With Colorectal Cancer: Emotional Well Being Clinical Trials 101 Drugs 101: Everything You Need To Know Therapists - Mental Health Professionals How To Choose A Mental Health Therapist Should I Ask About My Prognosis? How To Cope With Waiting Statistics Medical Research (and how to do it) Medical Research Services Pain 101 How To Switch Doctors
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