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Colorectal Cancer: Managing Your Medical Care: Diagnosis to Treatment Decision: Stages II, III

Summary

EACH OF THE FOLLOWING SUBJECTS ARE DISCUSSED IN DETAIL IN OTHER SECTIONS OF THIS ARTICLE

In General:

Colorectal cancer is cancer  offsite linkthat generally occurs in the colon or rectum. (For a general overview, click here).

 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 offsite linkor 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 offsite link
    • 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 offsite link).
    • Consider looking at published treatment guidelines such as the guidelines published by National Comprehensive Cancer Network which are available online at www.nccn.org offsite link 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 offsite link 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.

NOTE:

  • 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.

Additional Tests Which May Be Recommended

Additional tests you may be requested to take include the following. If one of these tests is recommended, click on the link to learn about the test, including any preparation and possible after effects. 

  • A biopsy
  • Blood tests
  • Chest X-Ray 
  • Colonoscopy
  • CT scan
  • Double Contrast Barium Enema (DCBE)
  • Endoscopic ultrasound (EUS) 
  • Liver function tests
    • Liver function tests are blood tests that measure certain proteins and enzymes in blood. Blood samples are obtained through a thin needle inserted into the arm. The samples are usually taken at a doctor’s office during a physical exam.
    • The main reason for liver function tests is to see if the liver is healthy enough to undergo chemotherapy treatment.
    • If colorectal cancer has spread (metasticized) to the liver, blood tests also indicate whether liver function is compromised. If it is, the tests also indicate by how much.
  • MRI scan
  • Oncotype DX 
  • PET Scan 
  • Sigmoidoscopy

It is also helpful to know who the professionals are who you are likely to run into, and what each of them does. To learn about them, click here.

Colorectal Cancer Is Not What It Used To Be

  • Things have become much better for men and women with colorectal cancer.
  • For the great majority of people, colorectal cancer is treatable. What used to be a fatal disease has become more like a chronic condition.
  • What you know about what happened to other people with colorectal cancer is not necessarily what will happen to you. Even if another person's cancer is the same type as yours, every case is highly individual. No one can precisely predict what the course of your condition will be, or how any individual will respond to a particular treatment. This uncertainty is reason for hope.
  • Treatments today involve less chance of the need for an ostomy and other side effects.
  • If an ostomy is more than temporary after treatment, there are a variety of tips that can help you return to a positive body image and to have sex and intimacyExperience indicates that physical relations between couples ultimately return to being satisfying and loving. Single people can successfully return to dating.
  • Colorectal cancer can be talked about openly, even at work, if you choose to.
  • Emotional support from other people who are experiencing or have experienced colorectal cancer or caring for someone with the disease is available in group settings (support group or self help group) and/or one-on-one with a cancer buddy - including over the internet. (You can also learn a lot of practical information from other people dealing with the same situation). You can find a support group or a buddy by calling the Colon Cancer Alliance Hotline 877.422.2030 or by going to ccalliance.org/volunteer/buddy_program.html offsite link

For additional information about these subjects, see “To Learn More.”

How To Make A Colorectal Cancer Treatment Decision

Having no regrets is important for emotional well-being. For survivors, this seems to depend far more on having gone through a reasonable decision making process than on whether or not the outcome was the one desired.

While you likely want to start the treatment as soon as possible, generally a decision about what treatment to have does not have to be made immediately.  This is an emotional time. It may be helpful to give yourself time to let emotions settle and to make the decision when you are more calm and clear headed. (For information about emotions and how to lessen their effect, click here.)

Take the time to study the pros and cons of each treatment under consideration.

  • The treatment recommended will be based on the type of colorectal cancer you have and the stage. (For information about colon cancer staging, click here. For information about rectal cancer staging, click here.)
  • If there is only one standard treatment for your situation, there may not be a lot to think about other than understanding the advantages and disadvantages - including possible side effects. Before starting treatment, at least learn how to deal with side effects that are most likely to occur so that you are not surprised and are prepared to deal for them.
  • There may be more than one option available in a given situation.
    • Although there are standards of care and guidelines, specifics may vary by doctor.
    • There may be disagreement between doctors about whether, and if so, how fast, a cancer will progress
    • Even top experts may disagree on the most effective treatment for a particular situation. Medicine is a combination of science and art.
  • Be aware that treatment options depend on the following:
    • The stage of the cancer
    • The location of the cancer.  Is it in the colon or rectum?
    • Your general health
  • There are nationally established guidelines in cancer treatment available and  used by all major cancer centers and NCI certified comprehensive cancer centers  offsite linkthat are published by the National Comprehensive Cancer Network and are available online at www.nccn.org  offsite link
  • Discuss with your doctors the availability of curtting edge treatments through a clinical trial for your cancer. Clinical trials are studies performed with to test new drugs or combinations of drugs, new approaches to surgery or radiotherapy or procedures to improve the diagnosis of disease and the quality of life of the patient. Clinical Trials may offer you the opportunity to receive a treatment that is not yet available for the general public. (For a clinical trials matching service, click here offsite link). 
  • If there is a choice about which treatment to take, an often-used-analogy is to suggest that you at least take as much time considering which treatment to take as you do when deciding what automobile or other major purchase to make.

When considering the pros and cons of each treatment, keep in mind the following:

  • Each situation and person is unique. 
  • Your personal goals and priorities  – such as preserving quality of life for you and your loved ones.
  • No treatment for colorectal cancer is totally free of the possibility of side effects including diarrhea, and possibly incontinence  problems and an ostomy may be needed temporarily or even permanently.
  • No treatment for colorectal cancer has a side effect which leads to death.
  • 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.)
  • Ask any and all questions of concern to you about available treatment plans
  • Make a treatment decision based on your own lifestyle and beliefs.
  • You may want to consider treatments such as acupuncture, yoga, massage and the like as complementary or integrative 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 or integrative treatments, click here
  • Ideally, your family and healthcare team should be involved before making a final decision.

A Few Things To Consider As You Make Medical Decisions

  • 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 to do what works for you. It is your body and your decision. There are no right or wrong answers when it comes to who makes medical decisions. 
  • Select a person that can act as a patient advocate.  This person can  go with you to doctor appointments.  This person can help ask questions you may have forgotten to ask. He or she can also help recap when you get home what was discussed.  
  • Many cancer centers have patient navigators or oncology nurse navigators that are available to you to help guide and assist you as you navigate the healthcare system.  The Oncology Nurse Navigator is provided free of charge by hospitals and treatment centers..  For more information about Oncology Nurse Navigators go to www.aonn.org offsite link.
  • Professional patient advocates are another option that is available if needed.  These advocates generally charge a fee for their services.  To learn about the value of a patient advocate and how to choose a patient advocate click here. For information about professional advocates, 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. (T32). Also consider Planning Ahead  
  • Ideally, your family and healthcare team should be involved before making a final decision.

NOTE: If body image is a consideration in making a decision, there are many tips to help with body image and sex/intimacy. Click here. 

Goals To Consider When Deciding About Whether To Take A Treatment

Consider what is important to you. Prioritizing your goals will help when it comes time to making medical decisions. For instance, your goals may include one or more of the following:

  • Beating colorectal cancer.
  • Keeping a clear head because of work or family commitments.
  • The shortest period of time off work.
  • If you are going to have chemotherapy or radiation to the pelvic area, preserving the ability to have children. NOTE: If this is a goal of yours, you can bank sperm, eggs or fertilized eggs before treatment begins. (For more information, see the document in "To Learn More").
  • Minimal out of pocket expense. For example, a treatment covered by your health insurance.
  • Minimal amount of pain.
  • Treatment by a particular doctor.
  • A treatment center close to home.
  • Treatment in a particular hospital or treatment center.

It is not unheard of for people to have one or both of the following goals. They are mentioned separately because these goals can lead to deciding not to take a necessary treatment. Death is the almost inevitable result of refusing such treatment.

  • Avoiding incontinence of any kind for the long term.
  • Not having a temporary or a permanent ostomy bag.

It may help to list your goals on Survivorship A to Z's prioritizer. You can save the document and add to it over time. With the press of a button, your list will be reordered to your priorities.

Survivorship's treatment evaluator can help you compare treatments according to your goals. To see the evaluator, click here.

Commit Yourself To Doing Everything You Can To Reach Your Goal(s)

A growing body of evidence indicates that patients who actively participate in their health care do better than patients who don't. The great majority of "how to" books and articles by long term survivors talk about the importance of the following:

  • Be pro-active. (The other sections of this document help you learn how).
  • Keep in mind that no one cares as much about your health and well being as you do. It is your job to make the health care system work for you. The medical system calls you a “patient” – but you do not have to be patient. A pro-active person would instead think of himself or herself as a partner.
  • Adopt a cancer preventive diet and lifestyle in addition to using available treatments and drugs. (It may be easier to adopt such a lifestyle if you think of it as part of your lifelong treatment – and if you start making changes a little at a time instead of all at once).
  • Get emotional support. It helps make medical decisions and care easier, as well as day-to-day living. Emotional support is available in a variety of ways. (See Emotional Well Being.)

Having no regrets is important for emotional well-being. For survivors, this seems to depend far more on having gone through a reasonable decision making process than on whether or not the outcome was the one desired.

How To Choose The Best Available Doctors And Surgeons

As noted in the summary, of this document, colorectal cancer usually involves a team of doctors including a gastroenterologist, a medical oncologist, a colon and rectal surgeon and a radiation oncologist. Upon suspicion of the presence of colorectal cancer, or an evaluation for colorectal cancer, a primary doctor will most often refer you to a gastroenterologist. After diagnosing colorectal cancer, the gastroenterologist or doctor will refer you to a surgeon and/or a medical oncologist (a doctor who specializes in chemotherapy treatment.)

Generally people see the specialist recommended by their doctor. If you are looking for a specialist for a single consultation for a particular problem, your doctor's recommendation may be adequate. However, because of the importance of this situation, consider speaking with several different specialists before settling on the best one for you.

Ideally, a doctor will be board certified, have extensive experience with your particular situation, and be affiliated with a top quality treatment center.

For information about how to choose  a particular type of doctor that may be of interest to you, click on the following appropriate link:

 For information about how to locate and choose other specialists, click here.

If you have difficulty choosing among several doctors, Survivorship A to Z provides an easy-to-use Evaluator to help make a decision. Click here.

Do not allow the search for the best doctor or facility to delay start of treatment. A delay can result in complications which require emergency care -- and then you would end up being treated at the facility nearest you rather than the hospital best suited to your situation. Check with your doctor about how much time you have to make a decision so you can time your actions. (To learn how to prepare for a medical emergency, click here.)

NOTE:

  • Speak with your insurance company to find out what, if any, requirements you need to satisfy before seeing a specialist. (To learn more, click here.)
  • Ask all of your questions and discuss all of your concerns. Do not feel guilty if the needs you have are not the same as other people you speak with. The key to choosing a doctor is to findone that will work for you and your needs.
  • If your health insurance requires seeing doctors who are in a particular network, do not assume that a doctor is in the network just because the doctor who refers you is in the network. Always check.
  • It is important your doctors communicate with each other and that there be an acknowledged leader of the team. The leader may change over the course of care. If a doctor doesn't take the lead naturally, choose one of your doctors to fill the role. If the doctor doesn't do a good job of coordinating your care, choose a different doctor to be the leader.
  • If you haven't already, this is a time to learn how to maximize your time with a doctor. Even if you are used to working with doctors, Survivorship A to Z information is likely to provide suggestions for making your limited time with a doctor more effective. To learn more, click here.
  • Look at the Survivorship A to Z article about how to get through waiting periods. In the current situation, the techniques can be used while waiting for appointments which permit you to make your decision as an informed consumer.

Colon and Rectal Cancer: Standard Treatments

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Colon Cancer Stage II – Non high risk

 

 

 

Colon Cancer Stage II – High risk

 

 

 

Colon Cancer Stage III

 

Colon Cancer Stage IV

 

 

 

Rectal Cancer Stage II


Rectal Cancer Stage III

 

 

 

 

Rectal Cancer Stage IV

Questions To Ask Before Agreeing To A Treatment

What To Do When It Is Recommended That You Take A Medication

Before agreeing to take any drug, consider the pros and cons, as well as the alternatives. Keep in mind that all drugs have risks - including over-the-counter drugs. The longer a drug has been on the market, the more that is known about its effect (both good and bad).

Take each drug as directed, when you are supposed to, and for as long as you are supposed to. 

Do not stop taking a drug just because you are feeling better.

For drugs that you take on a long term basis, talk to your doctor about finding out if a lesser dose will accomplish the purpose.

Learn how to safely store drugs and to dispose of unused drugs.

For more information about drugs, see the documents in “To Learn More.”

Take Someone With You To Doctor Appointments (Patient Advocates)

A person who accompanies a patient to doctor visits is generally referred to as a Patient Advocate.

Experience indicates that having someone with you is particularly important for the initial meeting with a  medical oncologist or surgeon . Patient advocates can help ask questions, help remember what the doctor said, and review the meeting with you afterward. 

To learn more about patient advocates, including the qualities to look for in the person, and what to discuss with the person, see the document noted in "To Learn More."

Many cancer centers have patient navigators or oncology nurse navigators that are available to you to help guide and assist you as you navigate the healthcare system.  The Oncology Nurse Navigator is provided free of charge by hospitals and treatment centers..  For more information about Oncology Nurse Navigators go to www.aonn.org offsite link.

Professional patient advocates are another option that is available if needed.  These advocates generally charge a fee for their services.  To learn about the value of a patient advocate and how to choose a patient advocate click here. For information about professional advocates, click here

NOTE: If you record the conversation, you and your navigator can review what was said after the meeting. Recorders are inexpensive. You may even have one on your telephone.

To Learn More

Tools That Will Make The Process Easier

The cancer journey can be a long and confusing one. Being organized and putting things in order will save you time and frustration - and possibly money. The more organized you are today, the less you will have to when you may not be feeling as well.

Getting Organized

  • Create or obtain a medical binder where you can store your medical records and other health related information. Keeping your own record can speed up the medical process – particularly when you see a new doctor or if you want a second opinion quickly. (See "To Learn More.")
  • Determine where the safest place is to store copies of health insurance correspondence, medical records, and any other paperwork relating to your diagnosis and treatment. Think about the best place to store your copy of your health insurance correspondence. While you are at it, be sure your important papers are stored in the correct place. (We tell you how in "To Learn More.")
  • Create a List of Instructions that tells people how to keep your affairs going if you can’t take care of them for a while. It will also make life a lot easier for you to have everything you need to remember in one place.
  • If needed, Survivorship A to Z provides information about how to get organized. See "To Learn More." 

Get access to the Internet

The internet has become an important tool for people dealing with the colorectal experience.

  • The internet provides easy access to most doctors (more and more doctors are communicating with patients by e-mail).
  • The internet provides a means of obtaining support, both through online support groups and to connect people in a similar situation one-on-one.
  • Specific information on your health condition, treatment and side effect information is available on the internet. 
  • If you cannot afford to buy a computer:
    • Perhaps a family or friend will give you access when needed.
    • Many treatment faclities and libraries provide free access to the internet.
    • Computers can be rented, or you can pay for usage at an Internet Cafe.
  • When you research online, keep in mind that a lot of web sites do not have correct information or the information is biased in favor of the owner of the site. See Survivorship A to Z information about how to do medical research on the internet for more information. See "To Learn More." 

Buy

  • An inexpensive recorder so you can record sessions with your doctor and replay them later. (Be sure to get the doctor's consent before recording any session). NOTE: Before buying, check your mobile phone. It may have recording capabilities.
  • A fax machine or other inexpensive mechanism which allows you to receive and send medical and other reports.

NOTE: Carry with you at all times:

  • A list of the medications you take (and recently took) and keep it with you at ALL times. You never know when it may come in handy, such as in an emergency or when going to a new doctor. (We provide a tool to help you keep track that you can print as needed. See “To Learn More.”
  • A summary of your medical history (including current lab results). If for no other reason, it will save you a lot of time when you see a new doctor. You can just give him or her a copy of the document.
  • The name and contact information for your primary doctor and any doctor you see often.
  • If you do not want to be resuscitated if your heart or lungs stop working, keep a copy of a DNR with you as well.

Use Your Diagnosis As A Wake Up Call To Start A Healthy Lifestyle

SEE THE DOCUMENTS IN "TO LEARN MORE" FOR MORE INFORMATION ABOUT EACH OF THESE BULLET POINTS

A lifestyle known as a cancer diet and preventive lifestyle helps to get your body into the best condition to prevent a recurrence of cancer and the occurrence of other serious health conditions. The concepts behind a healthy lifestyle are science and time tested.

Do not expect to change overnight. Take small doable steps, one at a time. If you slip, don’t beat yourself up. Keep doing your best.

A cancer diet and preventive lifestyle involves the following steps:

  • Eat nutritiously
  • Be active. Get exercise - it doesn't have to be in a  gym
  • Get rest and appropriate sleep.
  • Take care of your mouth. Mounting evidence indicates that poor oral care can worsen serious medical problems. This is a good time to schedule a dental check up to take care of any potential problems before treatment begins.
  • If you smoke use your diagnosis as a wake up call to quit.
  • Avoid excessive use of alcohol.
  • Try to keep a positive attitude. We're not suggesting you become a Pollyanna. Work at keeping the focus on the half full side of the glass.
  • Think about getting a pet. It doesn't have to be a dog or a cat to help you feel better.