Support Information

Colon Cancer is also known as Colorectal Cancer, Bowel Cancer, and Rectal Cancer.

On this site we will refer to this disease as Colon Cancer.

On this page you will find Frequently Asked Questions (FAQ), and a discussion of issues relating to Quality of Life, End of Life, and Finances.

Patient FAQ's

Q. I or someone I know has been diagnosed with colon cancer. What do I do?
A. You've already taken the first step by visiting this 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 health care provider and caregiver and/or partner in fighting the disease.
Remember that being diagnosed with Colon Cancer is not the end of the world. There are a number of treatments, both orthodox and alternatives that may be able to help the patient. Talk to your caregiver, medical professionals and others who have the disease. Information is power. Ask questions, don't be fobbed with wishy washy answers. It's your health. Demand the answers you need.

Q. What questions should I ask my doctor or surgeon?
A. You should ask any and all questions that spring to mind. After all it is your health - not theirs. Before you see your health care provider, make sure to write down all your questions so you'll remember them. Also write down the answers or use a tape recorder. Taking a friend or partner with you as support is also useful. 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.
• If you are having surgery, you will also want to ask your surgeon after surgery what "stage" your disease is.;
• 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? Is it addictive?
• Will treatment be needed after surgery? What type? Explain in simple terms.
• 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? How does this work?
• Where is my cancer located? Has it spread beyond the place where it began? What does this mean?
• What is the stage of my cancer, and what does that mean in my case?
• What treatment choices do I have? Have all the options been discussed?
• What treatment do you suggest and why? Where should I go for a second opinion?
• 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? If so, for how long?

Q. What is a CEA test?
A. The CEA is a specialised test to determine the extent of the Colon Cancer. This test is normally carried out in a hospital during a day visit. Ask your doctor to fully explain the test procedure and what degree of discomfort this may produce to you. Are there other tests that can be used for this determination?

Q. What else can I do to help myself?
A. 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. Most important of all is to keep asking questions of everybody until you have the answers you need. A lot of time you will be spoken to in medical "jargon". Ask for a translation into your normal everyday language so that there is no misunderstanding about the subject being discussed.

Q. What caused this? Was it something I did? How long did it take to grow?
A. No one is really sure what causes colon cancer. It's very unlikely that it was something you did. There are a number of risk factors which are now recognised. As for how long it takes to grow, that varies too, but colon 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. Colon cancer is difficult to find without regular screening and often does not cause symptoms until it's already pretty well developed. So don't get upset that you didn't "catch" it a few months ago. Some colon cancer is hereditary, and your doctor will probably take a blood test to determine this. The key is to fight it right now, in the present. There is a home test kit available that allows you to carry out these tests in your own home on a regular basis.

Q. What are my chances for a cure?
A. "Cure" is a word that the FDA will not allow to be used in the same sentence as cancer. No one knows if it's ever really cured. But it is possible to treat it so that it never grows again. That is know as "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 earlier 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. The FDA explicitly forbids that anyone makes claims of a cancer cure.

Q. Does this mean members of my family should get checked for colon/rectal cancer?
A. That depends on their age and physical condition, but this type of cancer can run in families. It is recommended 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. Colon 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. There is an inexpensive home test kit available that allows you to carry out these tests quickly and easily in the privacy of your own home.

Q. My cancer is pretty advanced. How long have I got?
A. This is a reasonable question, and probably the one to which everybody wants an answer. That answer is really an educated guess, almost like looking into a murky crystal ball. 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 colon cancer. Steven Jay Gould, a Nobel-winning scientist, was diagnosed with a rare form of cancer. His physician told him he only had six months to live. He survived for 20 years beyond that date, and wrote an excellent, short, easy-to-read piece about the "odds" and cancer survival. It is certainly worth a read!

Q. My health care 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 health care 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! Make sure you understand what they have explained to you before moving on with the discussion. Don't wait until the end of the conversation before asking questions.

Q. I'm in pain, and I don't know what to do.
A. Call your health care 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. Don't feel as though you are being a nuisance or a burden to others. People are only too willing to help, you just need to ask. 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 Hospices or 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 treatments are available?
A. The treatment depends on the stage of your cancer and needs to be decided on between you and your health care 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 in the US. University Cancer Centres which are not NIH designated cancer centres are another good option if there is no nearby NIH centre. 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 and cancer centres available for specific stages and types of colon cancer, go to the links page 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. If you know of a Cancer Centre anywhere in the world that should be added to our list, then please let us know

Non-Patient FAQ

Encourage the patient to be treated at a major cancer center. The few extra days it takes to get to a major center will not make a difference, especially if it takes you to leading-edge care by surgeons and other specialists who are experienced in the latest treatments for colon cancer.

Get clear, detailed information on all treatment options before discussing them with the patient. Make a list of questions, and make sure the answers make sense. If they don't. ask the doctor to rephrase a statement until it's clear both to you and the patient.

Get a second or third opinion before making a final decision with the patient. Before the patient starts treatment, know what type of therapy will be given, and by what method. Know what chemicals will be used, how often, and for how long. Ask what side effects can be expected. Make written notes.

As a caregiver you will need to ensure the comfort of the patient, the use of disposable, unscented, alcohol-free, pre-moistened cleaning pads and Desitin ointment is likely to make the job easier for you, and beneficial for the patient.

Supplement your medical information by getting involved in a local support group, as well as support groups offered at major cancer treatment centers. Refer to organizations like the American Cancer Society and others highlighted in this website.

Quality of Life Issues

For people with Colon Cancer, quality of life is defined by how bad the disease is. In the initial stages of the disease, patients tend to focus on the long-term effects of the treatment, whereas in the later stages of the disease,symptom and pain management becomes the most important requirements.

A booklet put out by the Colon Cancer Alliance - Living with Colorectal Cancer (PDF)has been written in order to help you sort through some of the many new feelings and situations you will face as you learn to live with colon cancer.

Another booklet Coping with Cancer provides information about complications of cancer and its treatment, as well as information on treatment-related nutritional concerns. This is not specifically related to Colon Cancer, but is worth a read.

Yet another booklet deals with What Happens After Treatment?Reading this during and after treatment for your colon cancer you may be able to speed up your recovery and improving your quality of life after having treatment.

This resource guide from the NCI, Post Treatment Issues, will help you with the issues you may face after follow-up medical care and possible late effects of cancer treatment

Following colon cancer surgery, there may be a change in bowel function due to the change in the anatomical structure of the colon or rectum, or both. MD Anderson’s bowel management program,Post Surgery Issues,can help you through this uncertain period.

Is there life after treatment. Of course there is. This booklet in the Facing Forward Series covers post-treatment issues such as follow-up medical care, physical and emotional changes, changes in social relationships, and workplace issues.

For a listing of organisations that can offer you support and information, see the Helpful Organizations listed on our Useful Links page.

End of Life Issues

End-of-life is a generalised term that refers to the medical and social aspects surrounding the patient and their family in the advanced or terminal stages of illness. When a patient's health care team determines that the colon cancer can no longer be controlled, medical testing and the associated cancer treatment often stop. But the patient's care and concern for their wellbeing continues. The care has to focus on making the patient comfortable. This may involve family care or the use of Hospice facilities.

End of Life Care: Q&A
this information may help answer some of the questions that many patients, their family members, and caregivers have about the end of life.

Advanced Care: Living Each Day
this National Cancer Institute booklet was written to help persons who have gone through the struggles of diagnosis, treatment, and, perhaps, recurrence of cancer, persons for whom a cure or long-term remission is no longer likely.

Loss, Grief and Bereavement
the passage from the final stage of cancer to the death of a loved one is different for everyone; this summary describes loss, grief, and bereavement, the stages of grief, and methods for coping with grief

Financial Issues

A diagnosis of cancer is likely to cause emotional and physical stress. It is probable it will also cause a severe financial strain on the cancer survivor and the family. Below is a list of organizations and programs that may be helpful for individuals and families having financial problems. Many communities also have local resources such as churches and civic organizations, such as the United Way, that should be investigated.

Financial Assistance for Cancer Care
for individuals who do not have health insurance or who need financial assistance to cover health care costs, resources are available.

Out of Pocket Expenses
the extra expenses of a cancer diagnosis may confront a family for the first time with financial difficulties; remember your problems in such a situation may be temporary and are not unique.

Advocate for Yourself: Health Insurance Issues
learning about what choices you have, what types of insurance exist, what your rights are, and what to do if you are not insured, will help you be a more effective advocate.

Empowering the Patient
seeking to empower patients to take control of their health care, PAF case managers work with patients to discover local, state, and federal programs that provide assistance for their individual needs.

For a listing of additional financial resources, see the Helpful Organizations listed on our Useful Links page.

Disclaimer

The website has been designed as an information site, and is supported by the sponsors and advertisers together with donations from visitors who have found the information useful.

While the FDA regulations do not allow any claims for Cancer cures to be made, it is my personal belief that a cure does exist. This cure may be already on the market masquerading as something else, probably a food. The treatments, links and references are offered for your use as you deem fit. We make no endorsement of any of the treatments included in these pages and we recommend that you consult widely with the medical profession should you be unfortunate enough to contract Colon Cancer.

We do not collect personal details, including emails, for any purpose.

We are not medically trained, but are a family who have been sadly touched by a number of cancers through the years and feel that it is necessary to ensure that this information is readily available to all those who have a need of it.

Should you be touched by this scourge of the modern world, then we wish you well. Your health is the most important thing that you own and it will be necessary to fight to keep it. Use all the resources at your command, that includes family, friends, money, faith, medical practitioners (orthodox and alternative), and your own inner strength. Fight well and live a long and happy life.

Come back often, as we will be trying to keep up to date. Bookmark this site.

Contact us if you have some information you feel should be here, but we have missed.

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Email: webmaster@colon-cancer-symptom.com

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