ASL Information on Colorectal Cancer

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Links to Transcripts and Video Clips:

Title Sequence

  1. What is Colorectal Cancer?
  2. What is cancer?
  3. What are the symptoms?
  4. What is flexible sigmoidoscopy?
  5. Difference between Sigmoidoscopy and Colonoscopy
  6. Is it true that colon polyps are the same cancer?
  7. Post-Diagnosis Reaction
  8. Do you always have to have surgery for colon cancer?
  9. Didn't you say that if the cancer is just in the rectum, that it is treated differently?
  10. What happens when the cancer has spread to other places in the body already?
  11. What are Clinical Trials?
  12. What if I don't have a disease? Are there clinical trials studies for healthy people?
  13. Post-Treatment Check-ups how does that work?
  14. What changes will you make in your own life? 

I. Introduction

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Thanks everyone for being here tonight – it is always great fun and a pleasure for me and Sally to have you all over for such good company! I want to introduce my friend Shane who some of you have met already. He works as a health educator. We invited him here especially tonight to talk to all of us about an important disease.

You see, my very good friend Frank was recently diagnosed with colon cancer. I was with him at times during his treatments, and I realized that I didn’t know very much about this disease – neither did Sally for that matter. Frank is only 10 years older than I am so this really hit home. It has been 5 years since he was initially diagnosed and there is no still sign of any cancer returning. That means he will probably live his normal lifetime. The earlier a cancer is discovered and treated, the better the chance for long term survival.

Shane knows a lot about colon cancer and he taught me and Sally a good deal about it. Shane knows Frank very well also. Because of how important this is, we asked Shane to share what he knows about colon cancer with our whole group tonight!

Yes, in fact, from what we have learned from Shane, both of us realized we needed to see a primary care doctor to make sure we were checked out.

Shane, you’re on!

Thanks John. I know some of you guys, and it is a pleasure to meet the rest of you and share this important information as John requested. I want to make this very informal, so please interrupt me at any time to ask questions.

II.    Colorectal Cancer or Colon Cancer?

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Frank told me he is glad that I am sharing his situation with you! In fact, do any of you have any questions about what we are talking about when we say “colon cancer or colorectal cancer?” We should probably start there.

Yes. Did you say “colorectal” cancer?. I thought you said Frank had “colon” cancer….What’s the difference?

Well, cancer can occur anywhere in the colon, even at the end of it, which is called the rectum.

Frank had his cancer in the left side of his colon which is the most common part of the colon to have cancer. But some people have cancer only in the rectum which is at the very end of the colon. We use the term “colorectal” cancer when we are talking about things that are related to both the colon and rectum. But we also distinguish colon cancer from rectal cancer because they are often treated differently.

Wow. I had no idea about that. So, the only real difference between colon cancer and rectal cancer is the location of the cancer, and that’s why the treatment is different?

Yes. The two cancers can look a little differently under the microscope, but the main difference is where they are located and how they are treated.

III.    What Is Cancer?

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Hey – Sorry, I hate to ask a question like this, but what exactly is cancer anyway? Do the doctors know?

Let me explain it like this: All the organs of the body are made of up tiny cells. As cells normally die they are replaced by new cells. Sometimes though the cells do not die as they are normally supposed to, but keep on dividing, making more of themselves. They grow out of control. That is a condition called cancer. When there are many cancer cells that keep growing, they become a tumor. Tumors can spread to many other places in the body.

Think of your colon as a tube, sort of like a garden hose. The whole inside of it is lined with tiny cells. The food you eat passes through this tube where your body extracts energy and nutrition. Now the food turns into waste. If the cells lining the tube start growing out of control, then they can sometimes become colon or rectal cancer.

So, how did Frank get colon cancer anyway?

Even the doctors don’t really know how anyone gets colon cancer. There are some things that put you at higher risk for getting colon cancer though. Age is the biggest risk factor. The older you are, the more likely you are to get colon cancer. Most colon cancers are diagnosed in people between the ages of 50 and 70. If you have family members that have had colon cancer, that can also put you at higher risk. Sometimes people have a type of colon cancer that is passed down through their family. Those people usually have cancer at a younger age, so everyone needs to tell their doctor about any family members who have had cancer.

People all over the world get colorectal cancer. But many more people who live in North America and Europe get colorectal cancer than do people who live in Africa and Asia, or other parts of the world.

Aren’t there other things that can make you more likely to get colon cancer? And what about diet? I thought high fiber diets help prevent colorectal cancer, with things like vegetables, beans, and fruits.

Eating a healthy diet high in fiber is recommended for everyone, but it doesn’t actually prevent you from getting colon cancer that we know of. The big medical studies have not conclusively shown that eating a high fiber diet can prevent colorectal cancer, but eating a healthy diet is always a good idea. There are other risk factors. The doctors do know that smoking increases your risk of colorectal cancer, in addition to other cancers, so it is always a good idea to stop smoking.

The other group of people besides those with a strong family history of colon cancer, that are at high risk of colorectal cancer are people with a disease called “ulcerative colitis.” This is probably new to you. Ulcerative colitis is a disease of young people, usually in their 20s and 30s that causes abdominal pain and often bloody diarrhea. So the doctor will watch patients more closely if they have ulcerative colitis.

IV.    Cancer Symptoms

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So, how did Frank even find out that he had colon cancer? Did he have any symptoms?

No, he really felt fine, and that is just why this information is so important. Most people don’t really have symptoms until the cancer is more advanced. Frank went to his primary care doctor for a routine check up. The doctor did a digital rectal exam. He does that by putting a gloved finger into the rectum and feeling for bumps. Then he also checked for any blood in the stool. Both were negative, but the doctor recommended a flexible sigmoidoscopy anyway just for routine colon cancer screening because Frank had just turned 50 years old.

Are those things usual for a doctor to do?

Yes. Part of routine screening is that doctors do the digital rectal exam because occasionally rectal cancer can be felt that way. They also check the stool for occult blood at the same time, which means blood that cannot be seen with the naked eye. They put the stool on a special card and see if a chemical makes it change color. There will be a color change if there is blood in the stool.

Colon cancers can leak little bits of blood into your stool, and it can be detected when the laboratory checks these cards. Fecal occult blood testing doesn’t detect all cancers though, so all people over age 50 are recommended to have flexible sigmoidoscopy if they are at average risk for colon cancer. That’s what Frank had done because he was over 50 and didn’t really have many risk factors. Again, the sad thing is that most people don’t have any symptoms with colon cancer until the cancer is very advanced. Remember, Frank didn’t have any symptoms at all.

V.    Colonoscopy

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What is flexible sigmoidoscopy? I’ve heard of colonoscopy. Is that the same thing?

They are very similar. A sigmoidoscopy and a colonoscopy both use flexible tubes with a camera on one end and the other end connects to the monitor that both the doctor and patient view.

It is inserted into your rectum and the camera looks at the insides of your colon. The sigmoidoscopy tubing is short. It is just long enough to look at the inside of the left side of your colon. That’s where most cancers occur - on the left side of your colon.

The doctor can see the insides of your colon and remove any polyps that might be cancer, or be a type of polyp that could turn into cancer someday. I actually brought one of these with me. Here, have a look.

That’s what Frank had done. They saw a polyp that had turned into a mass in the left side of his colon. The doctor took a little piece of it to determine if it was cancer. The medical term for that is “taking a biopsy.”

Does that “sigmoidoscope” thing hurt? What about when the doctor cuts the small piece of the colon out to examine it? Does that hurt?

Usually you just feel pressure, but your doctor can give you medicine to make you feel as comfortable as possible. You might feel bloated or like you have to pass gas. That is completely normal.

VI.    Differences between Sigmoidoscopy and Colonoscopy

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So, how come they only look at the left half of the colon instead of all of it?

Good question! Remember colon cancer usually happens on the left side of the colon. That brings me back to the difference between sigmoidoscopy and colonoscopy. The sigmoidoscope tube is shorter than the colonoscope one. What Frank had that we just talked about was sigmoidoscopy, which is only long enough to see the left half of the colon, and is used for screening all people of average risk over the age of 50. This is used for screening because the majority of all colon cancers happen on the left side of the colon.

If you have had symptoms though, like bloody stools, abdominal pain, weight loss, or if your stool was positive for occult blood, or if you are at high risk because of a family history of colon cancer, then your doctor will recommend a colonoscopy. That’s just a longer tube with a camera on the end that is long enough to look at the insides of the entire colon.

During colonoscopy, because it is more extensive, you are given medication to put you to sleep.

Where does the doctor do this? Can it be done in a doctor’s office or would I have to go to a hospital?

These tests can be done right in the doctor’s office if they have the right equipment. Or they might be done in hospital facilities also, but you get to go home the same day. If you have been sedated, as with colonoscopy, you need to have someone else to drive you home.

When Frank had his done, the doctor had it set up so that Frank could see the TV monitor showing the inside of his colon, and the interpreter had a good place to sit so there was good communication for Frank, the doctor and the interpreter, but Frank still had privacy.

So patients have either a sigmoidoscopy or a colonoscopy. The sigmoidoscopy is for people at average risk of colon cancer and needs to be done every five years. So, beginning at age 50, you should have one at 55, 60, 65, 70 and so forth. The colonoscopy is for people at above average risk and is only done every 10 years. Which means, if you have one at age 50, you should have another at 60, then at 70 and so on.

VII.    Colon Polyps

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Is it true that colon polyps are the same as cancer?

Not exactly. It is true that most colon cancers start out as bumps on the inside of the colon called polyps, but only some polyps become cancer.

Many polyps are not harmful at all, but some are “pre-cancers” and so they need to be removed by your doctor. Then the polyp cells can be looked at under a microscope to see if there are any cancer cells in it. In Frank’s case, the polyp had already turned from a polyp into a mass of cancer cells. It was therefore called a tumor. That’s another name for a cluster of cancer cells.

VIII.    Post-Diagnosis Reaction

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So, the doctor told Frank that he had colon cancer. Then what did he do?

First, Frank took some time for himself and to be with his wife and family. He was pretty scared. He contacted me for advice at that point. He wasn’t sure what would happen, or how long he might have to live. The doctor did a CAT scan to see how advanced the cancer was and see if it had spread anywhere. A CAT scan is a picture of your body to see if the cancer has spread. CAT is an abbreviation of a long medical term. Luckily they didn’t see the cancer anywhere else except in his colon. He had to have surgery to remove the part of his colon that had cancer in it, and then have chemotherapy every few weeks for 6 months. Because a lot of Frank’s colon had to be removed to get out all of the cancer, the surgeon had to give him a colostomy.

A colostomy is where the surgeon connects the remaining normal end of your colon to the skin on the outside of your stomach. You wear a pouch over the hole in your abdomen to collect the stool. The bag has to be changed every day.

That took a while for him to get used to! The colostomy doesn’t have to be permanent for everyone, but it was for Frank because he had to have a large portion of his colon removed to take out all the cancer.

IX.    Surgery

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Do you always have to have surgery for colon cancer? Or is there something else they can do?

For cancer of the colon, surgery is always needed to remove the cancer from that part of the colon. Chemotherapy alone isn’t enough.

Sometimes the normal ends of the colon can be reconnected.

But sometimes so much has to be removed that there isn’t enough colon left to be reattached to the rectum. That’s what happened to Frank. That’s why the remaining colon had to be brought out to the skin on the abdomen and empty there into a pouch. That’s called a colostomy.

Chemotherapy is usually recommended for 6 months after surgery to try to kill any cancer cells that might be left, and decrease the chance that the cancer will recur.

X.    Different Treatments

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Didn’t you say that if the cancer is just in the rectum, that it is treated differently?

Yes. That’s a very important point. Rectal cancer is usually treated differently from the rest of the colon.

For cancer of the rectum, surgery is usually, but not always, necessary. Occasionally radiation and chemotherapy alone can cure rectal cancer if it is detected early enough.

Very often chemotherapy and radiation are given before the surgery to make the cancer smaller. That way less has to be removed at surgery.

Sometimes the very end of the rectum must be removed and the rectal opening is closed up. Then the healthy end of the colon is attached to the skin of the stomach as a colostomy that is permanent. If the very end of the rectum does not have to be removed, then the colostomy may be temporary, and the normal end of the colon can be reattached to the rectum after healing has occurred there.

This is why early detection is so important.

XI.    Importance of Early Detection

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Even though screening tests can be uncomfortable, catching cancer before it spreads is vital. In Frank’s case, if he had the screening test 5 years earlier, the polyp might have been in the pre-cancer stage. Then only a small section of his colon would have been removed.

So if Frank had been tested earlier, he wouldn’t need a colostomy?

Probably not! That’s why I’m glad you all are here today. So you can learn what Frank didn’t know. And you can help us get this information to others.

What happens when the cancer has spread to other places in the body already?

If colorectal cancer has already spread to other parts of your body, surgery and chemotherapy are usually given only if they might make some of your symptoms better. This is because our treatments cannot cure colorectal cancer if it has already spread throughout the body. This is called metastatic cancer. So you can see how very important early detection is. The scientists have not been able to develop very good treatments for advanced cancer yet.

XII.    What Are Clinical Trials?

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People who have advanced cancer should talk to their doctor about experimental treatments. These experimental treatments are called clinical trials.

Clinical trials? What are they?

Clinical trials are studies done with human beings. For people with colorectal cancer these studies are especially important because once a patient's cancer has spread to other parts of the body, treatment options are very limited. We do not have any treatments that can cure colorectal cancer at this time. So clinical trials for colorectal cancer are being done to try to find better ways to treat colorectal cancer, as well as to prevent it and detect it early.

Are clinical trials only done for colorectal cancer?

Clinical trials are done for all cancers, as well as all other diseases. Clinical trials can also be used to search for ways to identify those at high risk of developing an illness, prevent an illness, find it earlier, treat it more effectively, reduce its symptoms, or find less expensive, but equally effective, ways to treat a disease.

You should keep an open mind about clinical trials. Ask your doctor if there are any clinical trials for which you may qualify. What researchers can learn from your participation may benefit you and others in the community who develop the same disease. Since the risk of getting many diseases can increase if someone else in the family already has the disease, the knowledge gained by your participation in a clinical trial might even help members of your own family in the future.

Many clinical trials are only open to people who already have a specific disease. In these trials, if you already have a particular disease, you might receive either the treatment for the disease that is routinely given or you might be given the new treatment for the disease. Then the researchers evaluate if the new treatment is as good or better than the standard treatment.  

How will I know if I am part of a clinical trial? Will they ask me first?

The researcher will ALWAYS thoroughly explain the study to you ahead of time and ask if you are interested in participating in the evaluation of the new therapy. If you decide that you want to participate, the researcher will be sure you fully understand the study and then ask you to sign a consent document that confirms that you wish to participate in the study. You can always stop participating in a study if you are not satisfied with the experience.

The researcher can also end your participation in the study if you do not do your part of the study in a reliable manner. For example, if you miss a lot of your scheduled follow up appointments, the researcher will have no choice but to drop you from the study, because the measurements of your progress are essential to knowing the true results.

Contact Information
National Cancer Institute
www.cancer.gov
VOICE 1-800-4-CANCER
TTY 1-800-332-8615

XIII.    Impact of Cancer Diagnosis

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I understand, but I keep thinking about that “colostomy” thing. How do you deal with that?

It is difficult for most people initially. For so long Frank just concentrated on recovering from surgery and getting through the chemotherapy. He was afraid the cancer might come back. It was also hard for him to have to see the colostomy; the doctor had said that it was a possibility before the surgery. Many people are worried what their spouse will think about it, how it might affect their sex life.

You know what though? When it came right down to it, Frank’s wife was so happy to still have him alive and to be together, she couldn’t care less about the colostomy. Sure, it took getting used to, but when you love someone, things like that just don’t matter in the long run.

Frank also found some people who could help him and his family. He called the American Cancer Society and they got Frank and his wife into a group of colon cancer survivors. They said it was amazing to hear everyone’s stories and how they got through it. Most of them have spouses or partners, too, so they talked about how colon cancer affected relationships as well. They all shared ideas that were very helpful. Most important of all, being around all of these positive cancer survivors really helped Frank and his wife figure out how to be positive in the face of uncertainty.

They could have been referred to a sex therapist if they had wanted to go, but just talking about it in the survivors’ group really helped them enough. That was a great support. In fact, the whole group is celebrating Frank’s 5-year cancer-free anniversary!

XIV.    Post-Treatment Check-ups

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Wow. That’s great that there are such helpful groups out there and available to us. But, how did Frank know for sure that the cancer never came back?

He went back to the doctor periodically for follow-up exams to look for any recurrence. They looked at his whole body with a CAT scan. There was a blood test too called a “CEA level” that they periodically checked. CEA stands for Carcinoembryonic Antigen. “Carcino” is a medical term for cancer. A new word for you to learn. Anyhow, the doctors use it as a marker sometimes to follow patients after their surgery and chemotherapy. If the CEA starts rising again, it means the cancer could be coming back. Luckily, Frank’s CEA never did rise. Of course Frank and his wife will continue to get their regular checkups. Early detection of just about all diseases is very important.

XVI.    Catch Colorectal Cancer Early and Credits

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What are you doing about your own health since you watched Frank go through all of this?

We have annual exams with our doctor. We don’t smoke and we try to eat a healthy diet high in fiber. Lots of vegetables, fruits, fish and poultry. Very little red meat or fats. Because we don’t have many risk factors for colorectal cancer, our doctor is doing standard screening tests since we’re over age 50. We’ve had our flexible sigmoidoscopy a couple months ago and it was normal.

We have the sigmoidoscopy done every 5 years. If we were at higher risk, we would have a colonoscopy done. They only have to be done every 10 years. We also do something called “Fecal Occult Blood” test every year.

It’s a routine screening process for people over 50 years of age. Every year my doctor gives me a packet so I can do my fecal occult blood test at home. This is a little cardboard packet with three little windows. You test your stool three days in a row. Every morning you put a little smear of your stool on one of the windows in the packet. Three cotton cloths and little wooden sticks are included in the packet. You use a cotton cloth to catch your stool before it goes into the toilet water. Then you use the wooden stick to scrape lightly along all the sides of the stool. Then you smear the stool on the stick in the first little window. You do the same thing for window 2 on the second day and window 3 on the third day. After all 3 windows are smeared, you mail the packet to the laboratory using the envelope they include in the packet. The laboratory sends the results of the Fecal Occult Blood test to your doctor. So far so good for us! Everything is normal.

Everyone here should establish a primary care doctor so that you can have the appropriate preventive medicine done for you. Without doubt, Frank is living proof that screening for colon cancer can save a life! So I hope each of you will schedule your annual screening with your doctor tomorrow morning. Then next month when we gather for another social, we can all report on the accomplishments of our screening. It’s important to have a good support system. We can be that for each other. On that note, I think it is time to get the games going again!