Though it's the fourth most common of all cancers, colorectal cancer is arguably the least publicized. Many people would be surprised to hear that major league baseball player Darryl Strawberry is a survivor of colon cancer, and have probably forgotten that President Reagan underwent successful surgery for it in 1985.

Lorraine Johnston's new book, Colon & Rectal Cancer: A Comprehensive Guide for Patients & Families, fills the information gap for those of us diagnosed with colorectal cancer and provides some good news for the rest of us: the ravages of colorectal cancer are decreasing with early detection.

That's because many colorectal cancer types are very slow growing and easily detectable in the very early stages. Getting a colonoscopy every ten years starting at age 50--or younger if there is a family history of colon or rectal cancer--is often the key, according to the American Cancer Society.

Such screening has reduced the death rate from colorectal cancer. Hurdles that still need to be overcome are the embarrassment and fear of discomfort that cause many people to forego colonoscopy.

For those already diagnosed, the brightened outlook includes better chemotherapies, more precise surgery that results in less colon tissue being removed, a reduced proportion of patients needing ostomies, and technology that allows ostomies that are more comfortable, more secure, and easier to care for.

Equally important, Colon & Rectal Cancer provides ample resources for doing one's own research, reflecting Johnston's belief that all of us, not just medical experts, can and should have access to sound medical information that we can understand.

Allen:

Tell me how this book came about.

Johnston:

My husband is a lymphoma survivor, and the first book I wrote was a survivor's guide for people with lymphoma. The idea of colorectal cancer was percolating in the back of my mind because, on my husband's side of the family, we have had three cases of gastrointestinal cancers. I decided I didn't want to be broadsided a second time. This time I decided to do it right: to learn about it before it happens.

In the eight years that my husband has survived, two of my friends have had colon cancer. One, unfortunately, passed away. The other is lucky to be alive. He had ulcerative colitis and tried to ignore it for a long time. The doctors kept telling him that he really needed to do something about it. When he finally did and they removed his colon, they found colon cancer.

Allen:

Why did they remove his colon?

Johnston:

That's common treatment for longstanding ulcerative colitis, because it's associated with a terribly high incidence of colon cancer. He was one lucky guy, and he knows that now. They caught it at stage 1 (there are five stages, 0 through 4).

Allen:

This is another example of what's become an O'Reilly tradition--a book that came out of a personal need to understand and use technical information.

Johnston:

Yes, and this is the gentle message throughout the book: that medical information is not a mystery and is not undiscoverable. Of course, the worst possible time for people to have to learn a new skill is when they're not well, but medical knowledge is not solely the province of doctors. People have saved their own lives by realizing when their care was substandard and proceeding with second and third opinions.

Allen:

Can you give me some history of colorectal cancer survival rates and how they're changing?

Johnston:

It's very difficult to talk in general terms about survival rates because there are different types of colon and rectal cancer as well as differences among patients. However, the chief consideration remains how early it's caught. The earlier the stage, the more likely surgery is to provide a cure. As you get to more advanced stages, with more tumors in more parts of the body, the disease can become unaddressable by surgery.

For people who cannot be cured with surgery, there are chemotherapies that can improve survival. Chemotherapy can cure some people with stage 3 cancer, and may be needed by some stage 2 people. In general, though, survival rates are still in large measure tied to how early the cancer is detected.

Now that we have colonoscopy--if people can see their way past fear and embarrassment to get one--many cases of colorectal cancer can be caught before they're ever a problem. Some colorectal tumors don't show up well with this technology, but most of them do.

Allen:

So surgery has long been an effective treatment for early stage colorectal cancer. Is surgery pretty much the same as it was, say 20 years ago?

Johnston:

No, the surgical techniques are much better now. There are ultrasound-guided surgeries. There are imaging agents to highlight tumors, making them visible when they would not otherwise be. Promising surgical techniques are still in clinical trials. Surgery in general is vastly improved over 20 years ago.

Allen:

What other changes do you see?

Johnston:

Colorectal cancer itself is the fourth most common cancer overall but, unfortunately, the second in causes of cancer death. The incidence is decreasing, for women more rapidly than for men. The difference in decrease between men and women is more striking for colon cancer than for rectal cancer.

There is a geographic gradient in which, as you proceed away from the equator either northward or southward to areas of less sunlight, increasingly higher rates of colorectal cancer are found. Colorectal cancer is virtually nonexistent at the equator.

Allen:

That's surprising.

Johnston:

Yes. It suggests a Vitamin D/Calcium metabolism link, although we have to be careful to say that this is just a correlation and not proof. But rates of colorectal cancer are also lower among those who take a daily vitamin that contains vitamin D, calcium, and folic acid. It's also possible that colorectal cancer is decreasing more rapidly among women than men because of the use of estrogen by women.

Allen:

Does this have to do with an increased percentage of women taking hormones after menopause?

Johnston:

That, and an increased use of birth control pills.

Allen:

What are some things that people with colon or rectal cancer might have to deal with that people with other cancers wouldn't?

Johnston:

Aside from ostomy--that's the big one, as a rule--if they have any colon or rectal tissue remaining, including the anus, they must have continued surveillance after surgery and treatment. The risk of a second new tumor--not a metastasis, but a brand-new tumor--will always exist for these people. They have to be vigilant. That's even true for people with an ostomy. If they have an ostomy that connects to a remaining piece of the large colon instead of to the small intestine, they need to think about recurrence in the remaining colonic tissue.

Many survivors deal with pain forever, because the surgeries and chemotherapies used can cause lasting pain. Surgery can cause adhesions or nerve damage. None of these consequences is intentional; the doctor is just trying to get all of the cancer, and, at times, healthy tissue has to be sacrificed. It's not unusual to hear colorectal cancer survivors complain about diarrhea and pain for many years after surgery.

This can become an issue with respect to getting support because other people--healthy people--sometimes get tired of hearing about it. Unfortunately, people sometimes don't understand how you can have pain for years after surgery.

There's a lot of talk about the role of diet and exercise as measures of prevention, even though studies don't consistently support this. There can be a measure of guilt, too, that colon and rectal cancer patients deal with. If you've been careful with your diet and exercise and you're diagnosed with colorectal cancer anyway, then are you somehow to blame? It's a very tough, very unfair thing to have to face.

Allen:

Is there a well-developed support network for people with those kinds of issues?

Johnston:

There is now, I'm happy to tell you. There is a brand new group called the Colon Cancer Alliance And the other really wonderful group is the United Ostomy Association. There's also the colon discussion group sponsored by The Association of Online Cancer Resources (ACOR).

Allen:

Let's talk about changes in ostomy technology over the years. Are there significant improvements, or is it just a matter of refining what's been done all along?

Johnston:

There are advances that can eliminate the need for ostomy in a subset of patients, especially those who have rectal cancer. The pelvis is very narrow, especially in men, and a surgeon literally cannot get his or her hand into the pelvis to reattach tissue. Over the years, stapling devices have been developed that literally take the place of the surgeon's hand. Using these much narrower devices, surgeons can staple tissue back together instead of sewing it. While that's not without its risks, it does succeed very well most of the time, and some people who would previously have had to have an ostomy don't need one.

Other interesting techniques involve ways that the remaining bowel can be manipulated and reattached to the anus so that the patient is still continent, still has the same pathway for waste that was there before, without having an ostomy.

Some people are not good candidates for sphincter-preserving surgeries, though: those with so much disease the entire colon must be removed, those with a history of ulcerative colitis, or those with a tumor positioned where, after removal, the remaining tissue or its blood vessels don't extend to reconnect to the anus or rectum.

Certainly the people I know who have ostomies are very well adjusted to them and they tell me they can do everything they did before, but one has to want to do it. It doesn't need to interfere with sexual activity or sports or most activities. Most people adapt well.

Allen:

Can you give a rough idea of what percentage of people still need an ostomy after colorectal cancer surgery?

Johnston:

According to the National Cancer Institute, about 15 percent of patients will become ostomates.

Allen:

That's encouraging. Is this high level of sphincter preservation--avoiding an ostomy--a fairly recent development?

Johnston:

It's the result of a combination of evolving factors: earlier detection, improved adjuvant chemotherapies or radiotherapy that can shrink tumors before surgery, and improved surgical technique.

Allen:

So, not only can physicians decrease the amount of cancer to be removed, they can also be much more precise about where the cancer is, whereas previously they had to take out bigger pieces of the colon or rectum to be sure of getting it all.

Johnston:

Yes. A lot of what is called pelvic exenteration had at one time to be done. Once the tumor breaches the wall of the bowel and begins to attach to other structures, even if it has not invaded them, many doctors take these organs out for safety's sake. So there can be less and less tissue left after surgery the farther disease has advanced before diagnosis.

Allen:

For those who need treatment beyond surgery, are there promising new treatments in experimental stages?

Johnston:

Yes. Oxaliplatin, a drug with a mode of action unlike any used in the past for colorectal cancer, is in late phase III trials and will likely be approved by the FDA soon. It's already in use in Europe. Radiofrequency ablation, a heat treatment, is showing promise for liver tumors, as is embolization, a technique for destroying a liver tumor's blood supply. Tumor-specific vaccines hold promise as well. They attempt to re-educate the body to attack the tumor.

Allen:

Do you find that one of the issues in prevention is that people tend to not want to think about something like colorectal cancer and, as a result, there's a higher level of denial about actually doing the test?

Johnston:

I would say that is an issue in detection, but not in prevention, because colonoscopy won't prevent cancer. It's highly likely to find an early cancer and remove it at the polyp stage, which is not a cancer yet, but will always become cancerous if it's left in place.

I think, concerning prevention, that people are very attentive, but we've been somewhat misled with premature data on diet and exercise. We've been told that if we eat fiber, we'll reduce our chances of developing colorectal cancer. We now know that that's not entirely true. We've also been told that exercise will reduce our chances of developing colorectal cancer. That's somewhat true, but not for all people: in some studies, men appear to benefit more from exercise than women. For people with a family history of colorectal cancers, diet and exercise measures might not be enough.

Allen:

I can remember as a child hearing my dad say, "You have to eat lots of fiber so you won't get colon cancer."

Johnston:

Yes, and it's probably good for us to eat fiber for lots and lots of reasons. Unfortunately, it's no guarantee against colorectal cancer. In fact, there are societies, in Japan, for example, where people eat very little fiber and still have low rates of colorectal cancer. This is something that has to be studied further. It may be that they're protected because they're eating more soy, which is similar to an estrogen. No one really knows yet, I don't think.

Allen:

I know that it's routine to recommend a colonoscopy at age 50 and every ten years, and I know many people who have simply never gotten one.

Johnston:

Yes, I think you're right. "No one will ever talk me into having that test." That is a quote from a very bright, successful friend of mine who is otherwise scrupulous about diet and health.

Allen:

What are the guidelines for screening?

Johnston:

The American Cancer Society says anyone over age 50 with no family history of colorectal cancer or irritable bowel disease should have one of these three:

• An annual fecal occult blood test combined with flexible sigmoidoscopy and digital rectal exam every five years.

• Colonoscopy and digital rectal exam every 10 years.

• Double contrast barium enema, which is air and barium combined, and digital rectal exam every five to 10 years.

Allen:

Can you explain the difference between colonoscopy and sigmoidoscopy?

Johnston:

Sigmoidoscopy looks only at the sigmoid colon, which is the lowest 12 inches of the colon called the rectum. The recommendation for screening at age 50 combines sigmoidoscopy along with fecal occult blood testing and digital rectal exam.

Colonoscopy, on the other hand, looks at the entire six feet of the large intestine, including a small portion of the small intestine where they join. It's a more expensive test. It can be painful in some people, if they have adhesions or blockage, but people are routinely sedated for this procedure so they usually don't experience pain. On the other hand, because sedation is involved and the area visualized is more extensive, it's a more complicated and expensive test than sigmoidoscopy.

Allen:

To sum up, what's the most important thing people should know about colon and rectal cancer?

Johnston:

For this I would break people into two groups. The first group includes those who have never been diagnosed, but are either over age 50 or have someone in their family with colon or rectal cancer--or any gastrointestinal cancer. We now know that it is not entirely true that we can prevent these cancers with lifestyle choices. So, the message is: get a colonoscopy. Don't be embarrassed: doctors and nurses see these body parts all the time and they aren't critical of them. Have the testing done!

The second group would be those already diagnosed with colorectal cancer. I would suggest they contact the National Cancer Institute on 800-FOR-CANCER or on the Internet and obtain the current standards of treatment to make sure they're getting the correct treatment. If they think they're not, they should contact the National Cancer Institute for the nearest NCI-designated comprehensive cancer center and get a second or third opinion regarding treatment.

I think these measures are wise for anyone with cancer of any kind. But it's particularly true for the colorectal cancer patient who's diagnosed at stage 2, 3, or 4, because tumors in various locations are treated in different ways by different doctors, and it's a good idea to have a second or third opinion.

Allen:

Do you have another book coming up?

Johnston:

I'm working on a book for lung cancer patients and survivors. I'm struck, though, by the contrast among these cancers: of colorectal cancer, lung cancer, and lymphoma, colorectal cancer is the only one we can find easily and early.

Lymphomas can be occult and so diverse in the way they appear in the body that they are frequently misdiagnosed. My husband was misdiagnosed for 14 months; my mother for over a year. They are confounding diseases that can pop up anywhere there's a lymph gland or lymphoid tissue.

For lung cancer, there are not yet any effective screening tests that don't cost an arm and a leg. The tests we do have must be redone often. People with lung cancer can get a chest X-ray every year and develop lung cancer anyway, because X-rays are not specific enough or sensitive enough to catch all instances of unequivocal malignant disease. There are no reliable, affordable tests that we can do often enough to catch lung cancer at a curable stage.

Allen:

So, of the three, colorectal cancer is the one that you can detect in an early enough stage to cure in the largest percentage of cases.

Johnston:

Yes. With lymphoma and lung cancer, we have no choice at this time but to sit back and wait for bad news. But for colon and rectal cancer--Please! Have the recommended testing. It works. It can improve your chances of early detection and cure.