FAQs - Patients
The Colon Cancer Alliance (CCA) cannot respond to specific requests for advice concerning a particular medical case. We do, however, respond to general questions when we can.
Here you will find a series of commonly asked questions, with answers that we have provided in the hope that they may be useful to others.
DISCLAIMER: Please note that all contents of this message, including any advice, suggestions, and/or recommendations have NOT been generated as part of any professional evaluation. No patient has been examined prior to making these comments; no professional fee has been charged by or paid to the CCA. The reader is advised to discuss these comments with his/her personal physicians and to only act upon the advice of his/her personal physician. Note that in answering an electronically posted question, we are NOT creating a physician—patient relationship. Medical recommendations and advice can only be generated after a complete (in person) physical examination and review of the patient's history.
Q: What is colon/rectal cancer?
A: There's an excellent, complete answer to this question on the Disease Overview page on this site.
Q: I have been diagnosed with colorectal cancer. What do I do? I'm in a panic!
A: You've already taken the first step by visiting our website. That means you know you need to learn about the disease. The more you know and learn, the better you will be able to cooperate with your healthcare provider in fighting the disease. We have a webpage specifically for newly diagnosed patients which will help you by directing you to the appropriate pages of our website.
Another thing you can do is to join the colon cancer list where you'll find many people in your situation ready and willing to offer information and support. CCA has several programs available to connect you with people who can help. Visit the Programs and Events section of this site to find out more about how to get connected.
Q: What else can I do?
A: First, you might want to start keeping a diary of the disease. Use a simple notebook, devoting one or two lines to each day. For each day, you'll want to write down the date, what symptoms you had, what drugs you took, how you felt, whether you saw a healthcare provider, and what the result was. This record can be really valuable as you and your healthcare provider plan your care and treatment. Also, write the phone numbers and addresses of all the physicians, specialists, and therapists you see and what numbers to call late at night or on weekends to get help. Another suggestion is to ask for and keep copies of all your blood tests, scans (such as CT scans and x-rays), and reports. It's possible you'll be talking to more than one healthcare provider in the course of your battle with the disease, and having your records with you can make it much, much easier to bring new people up to date on your situation. Don't hesitate to ask for copies of your records. You're entitled to them by law.
Q: What questions should I ask my doctor or surgeon?
A: That depends on your case. Everyone has different things they want to know. Don't hesitate to ask ANY question, and before you see your healthcare provider, make sure to write down all your questions so you'll remember them. Some of the common questions people ask are:
- If you are to have surgery, which is often the case, one of the important issues to discuss is a CEA test. Almost all physicians urge patients to get a CEA test before surgery as well as afterwards, and you should ask about that (see the next question for more information);
- If you are having surgery, you will also want to ask your surgeon after surgery what "stage" your disease is (see Staging for more information);
- Will treatment be needed before I have surgery?
- How long will I be in the hospital?
- If I'm in pain, what will you give me to make me feel better?
- Will treatment be needed after surgery?
- If I am going to need chemotherapy after surgery, how soon after my surgery would I start that?
- What tests will you perform before and after the surgery to determine how far advanced my cancer is?
- When should I see an oncologist?
- If I'm home and I'm in pain, whom do I call for help?
- Where is my cancer located? Has it spread beyond the place where it began?
- What is the stage of my cancer, and what does that mean in my case?
- What treatment choices do I have?
- What treatment do you suggest and why?
- Will I need a colostomy?
- What risks or side effects are there to the treatments you suggest?
- What are the chances my cancer will come back with this treatment plan?
- What should I do to be ready for treatment?
- Should I follow a special diet?
Q: What does CEA stand for? What does it mean?
A: CEA stands for "carcinoembryonic antigen." That's just a fancy term for a protein that is released into the blood by some cancer cells in some (but not all) people. Sometimes other cells may release it, and in some patients CEA is never present at levels that can be detected. If you are one of the people who has an elevated CEA before your surgery, it should return to normal within a few weeks of surgery if all the cancer was removed. If not, your doctors will need to investigate to find the source of the elevated CEA level. You will need to check with your doctor to see what the normal level is in the laboratory that he/she uses to determine the levels. In most labs, the normal level is 0-3 for those who do not smoke and 0-5 for smokers. In a few places, a normal level of 0-5 is used for all patients.
If your CEA level is normal for a while after surgery and then begins to increase, your doctors will want to investigate further to find out why the CEA is still too high. Increased CEA may mean you have another medical problem, because many illnesses, and even the cancer treatment itself, can cause cells to produce an increased level of CEA. It can also mean that the cancer has recurred. Don't panic if your CEA begins to rise. Remember that it is an imperfect measure of a protein that may or may not mean you have cancer or that your cancer has returned (recurred).
Q: My healthcare provider told me my cancer had metastasized and that I had a "met" in another place besides the colon. What does that mean?
A: "Met" is short for metastasis which is just a fancy word for cancer that has spread to other parts of the body. Any time your healthcare provider uses a word you don't understand, stop him/her right there and ask what that word means. Don't be embarrassed if you don't know. Remember that you'll never know unless you ask!
Q: What treatments are available?
A: The treatment depends on the stage of your cancer and needs to be decided on between you and your healthcare provider. If you feel uneasy about the advice (s)he is giving you (or even if you don't!), you should not hesitate to get a second opinion, preferably at a major cancer center. Check out this link to find NCI-designated cancer centers. University Cancer Centers which are not NIH designated cancer centers are another good option if there is no nearby NIH center. No competent healthcare provider will object to your getting a second opinion. There are many treatments available. The key is not to give up hope! To find out more about the various treatments available for specific stages and types of colorectal cancer, go to the links to helpful organizations that is part of this website. There is a whole world of specific information there. Also, you may find additional treatment information on our website.
Q: What are my chances for a cure?
A: "Cure" is a tough word when we're talking about cancer. No one knows if it's ever really cured. But it is sometimes pushed back so far it never grows again. We call that "remission" or "long term survival." Your chances of surviving for a long time depend on the stage of your cancer and how successful the treatments are. Obviously, the lower the stage and the less the cancer has grown, the better the odds. Still, no one can confidently predict any of those things. Your best bet is to fight as hard as you can and live every minute to the fullest.
Q: My cancer is pretty advanced. How long have I got?
A: This is a fair question, and probably the one to which everybody wants an answer. But, the fact is that any "number" that any healthcare provider gives you is almost certainly wrong. Survival averages are just that: averages. There are long-term survivors of every stage of colorectal cancer. Stephen Jay Gould, a renowned scientist and Harvard professor, was diagnosed with a rare form of cancer. His physician told him he only had six months to live. That was years ago. He survived it, and wrote an excellent, short, easy-to-read article. We recommend it!
[Dr. Gould died in May of 2002 at the age of 60. Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8 month median survival by a factor of thirty! Although he did die of cancer, it apparently wasn't mesothelioma, but a second and unrelated cancer.]
Q: I'm in pain, and I don't know what to do.
A: Call your healthcare provider. If he or she is unavailable, someone will be on call, meaning someone will be available to help you. Don't hesitate or wait. Remember that there is always someone available somewhere to help you, and that there are always medications available to treat pain. One of the most tragic things that cancer patients do is to suffer pain when they do not have to! It might be necessary to see a pain specialist. Many of the large cancer clinics have someone on staff who specifically handles chronic pain problems. If not, you may find it necessary to visit a pain clinic. For those in severe pain, narcotics may be the best type of medicine. Some physicians are very hesitant to prescribe narcotics and you should not be afraid to ask for them or use them if you are in severe pain.
Q: What caused this? Was it something I did? How long did it take to grow?
A: No one is really sure what causes colorectal cancer. It's very unlikely that it was something you did. It's possible that the tendency to get the disease is hereditary, that is, it may run in families. That does NOT mean that everyone in your family will get it, but it does mean that there's a risk and that members of your family should be screened. As for how long it takes to grow, that varies too, but colorectal cancer is generally a very slow-growing cancer. A "polyp" in your colon can take ten years to become cancerous. That means that catching it a few months earlier when you think you might have "felt something" probably would have made little difference. Colorectal cancer is difficult to find without regular screening and often does not cause symptoms until it's already pretty well developed. So don't beat yourself up that you didn't "catch" it a few months ago. The key is to fight it right now, in the present.
Q: Does this mean members of my family should get checked for colon/rectal cancer?
A: That depends on their age and condition, but this type of cancer can run in families. The national organizations recommend right now that anyone related by blood to a colon/rectal cancer patient get screened for the disease when they are ten years younger than the age at which their relative was first diagnosed. So, if you or your relative were diagnosed at age 45, then other members of your family would need to get screened starting at age 35. Colorectal cancer can best be treated if it's caught early. Furthermore, if after discussing your family history of cancer with your doctor, you conclude that you have an inherited colon cancer syndrome, you and all of your immediate family will need to talk with your doctors about appropriate screening methods and timing.
Q: Are anal cancer and colorectal cancer the same thing?
A: No, anal cancer is cancer that forms in tissues of the anus. The anus is the opening of the rectum (last part of the large intestine) to the outside of the body. Colorectal cancer is cancer that occurs in the colon or rectum. Sometimes it is called colon cancer, for short. The colon is the large intestine or large bowel. The rectum is the passageway that connects the colon to the anus. Read more about Anal Cancer.
Q: Want to know more?
Go to the resources page of our site. Here you will find links to the most comprehensive and reliable sources of colorectal cancer information available on the Internet. Read as much as you can. Learn as much as you can. The better informed you are, the better you can fight this disease. Good luck!