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Thread: You worried you may have colon cancer?

  1. #1

    You worried you may have colon cancer?

    This question comes up a lot here. Here is the bottom line. If you are here asking that question, you should go see a doctor. If you are looking for answers, we can give you some, but you need to go see a doctor. If you need reassurance, we can't give that to you, but your doctor can. Go see a doctor.

    Odd are, you probably don't have cancer, but it could still be a serious condition you need to have checked out. Go see a doctor.

    They generally don't start checking for colon cancer until you are 50. Getting it in your 40's, like me, is not uncommon. And it is not unheard of for people in their 20's and 30's to get it, so no one is immune.

    I first started having warning signs about a year before my cancer almost killed me and put me in the hospital.

    My main warning sign was being anemic. It became apparent 10 months before I found out I had cancer. Had I caught it back then at a late stage II or early Stage III, I could have saved myself a lot of grief. But I am the type of person(or I used to be) who had to be literally dying before I would go to the doctor. I kept telling myself I was out of shape and just getting older.

    My warning signs;
    ˘ Anemia: Skin became very pale. Craved ice. Would get lightheaded if I stood up.
    ˘ Blood in stool. I didn't notice much of this. The few times I did notice, I thought I was cleaning myself to hard(I am a clean freak).
    ˘ That is all I noticed. If anyone here can add to this list, that would be great.

    WHEN you go to the doctor, what will happen?

    I don't have experience here, because my cancer put me in the hospital, needing emergency surgery to save my life. So the others here can chime in.

    From what I know, they'll probably do blood work. There is a number called CEA that can tell if you might have cancer. Don't rely totally on this number. My has always been normal, and going by it, you would never know I had cancer. Maybe someone here can tell you more about this number, because I don't know a lot about it.

    Demand a colonoscopy. It is not that bad. The worst thing is the prep the day before and it is about 2 to 3 hours out of your life. I slept through the actual procedure from the mild sedative they give me. This is nothing compared to surgeries and chemo.

    CT and PET scans. These can see any cancerous tumors in the body. The PET scan is very good at seeing cancerous tumors. Neither will see individual cancerous cells, just tumors.

    If you do have cancer, it is imperative you start fighting it ASAP. Let me show you why;

    Stage I : Cancerous polyp. Removed during colonoscopy. That is it!

    Stage II: Small tumor. Most likely removed during colonoscopy. Probably no surgery or chemo, but I don't have a lot of data on this. Maybe someone here can chime in.

    Stage III: Large tumor. Possible surgery to remove infected area of colon. Unlikely but possible temporary colostomy. At least 6 month of chemo. This is where I have my experience.

    Stage IV: Tough fight ahead. Cancer has spread throughout the body. Probably numerous surgeries. Possibly removal of colon. Probably a temporary or even a permanent colostomy. Continuous chemo.

    You can't stick your head in the sand about this. Something is wrong and you need to find out. Hopefully it will turn out to be nothing. It could be a serious, none-cancerous problem that need to be dealt with. If it is cancer, the earlier you catch it, the easier your fight will be.

    I wish I had gone to the doctor when the signs first showed up. I would probably not still be doing chemo right now and on my way to being cured.

    Don't wait. Go see a doctor.
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

  2. #2
    Great Sticky REB Thank you so very much for it. As I can I will if you okay it add some things I have found in my research to help. Again Thanks for the sticky it was needed (Wink)
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  3. #3
    Please feel free to add, or correct

    I hope I am not coming out too unsympathetic. I am a straight shooter. I will not sugar coat it. Sometimes people need a kick in the tail to get going. I know I did
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

  4. #4
    Top User
    Join Date
    Sep 2006
    HI Reb,

    I can endorse what you are saying because it took Barb 6 months before she decided to go to Drs,, If only she had gone earlier would have helped a lot... so if in doubt with your health GO TO DRS RIGHT AWAY DO NOT PUT IT OFF, ITS NOT WORTH IT..AS LIFE IS SO IMPORTANT AND TO CATCH ANY THING EARLY IS A GREAT THING..

    Best Wishes Rob

  5. #5

    Information I have gathered over the net on this:

    What is cancer?

    Cancer is a group of more than 100 different diseases. They affect the body's basic unit, the cell. Cancer occurs when cells become abnormal and divide without control or order. Like all other organs of the body, the colon and rectum are made up of many types of cells. Normally, cells divide to produce more cells only when the body needs them. This orderly process helps keep us healthy.

    If cells keep dividing when new cells are not needed, a mass of tissue forms. This mass of extra tissue, called a growth or tumor, can be benign or malignant.

    Benign tumors are not cancer. They can usually be removed and, in most cases, they do not come back. Most important, cells from benign tumors do not spread to other parts of the body. Benign tumors are rarely a threat to life.

    Malignant tumors are cancer. Cancer cells can invade and damage tissues and organs near the tumor. Also, cancer cells can break away from a malignant tumor and enter the bloodstream or lymphatic system. This is how cancer spreads from the original (primary) tumor to form new tumors in other parts of the body. The spread of cancer is called metastasis.

    When cancer spreads to another part of the body, the new tumor has the same kind of abnormal cells and the same name as the primary tumor. For example, if colon cancer spreads to the liver, the cancer cells in the liver are colon cancer cells. The disease is metastatic colon cancer (it is not liver cancer).

    What is cancer of the colon and rectum?

    The colon is the part of the digestive system where the waste material is stored. The rectum is the end of the colon adjacent to the anus. Together, they form a long, muscular tube called the large intestine (also known as the large bowel). Tumors of the colon and rectum are growths arising from the inner wall of the large intestine. Benign tumors of the large intestine are called polyps. Malignant tumors of the large intestine are called cancers. Benign polyps do not invade nearby tissue or spread to other parts of the body. Benign polyps can be easily removed during colonoscopy and are not life-threatening. If benign polyps are not removed from the large intestine, they can become malignant (cancerous) over time. Most of the cancers of the large intestine are believed to have developed from polyps. Cancer of the colon and rectum (also referred to as colorectal cancer) can invade and damage adjacent tissues and organs. Cancer cells can also break away and spread to other parts of the body (such as liver and lung) where new tumors form. The spread of colon cancer to distant organs is called metastasis of the colon cancer. Once metastasis has occurred in colorectal cancer, a complete cure of the cancer is unlikely.

    Globally, cancer of the colon and rectum is the third leading cause of cancer in males and the fourth leading cause of cancer in females. The frequency of colorectal cancer varies around the world. It is common in the Western world and is rare in Asia and Africa. In countries where the people have adopted western diets, the incidence of colorectal cancer is increasing.

    What are the causes of colon cancer?

    Doctors are certain that colorectal cancer is not contagious (a person cannot catch the disease from a cancer patient). Some people are more likely to develop colorectal cancer than others. Factors that increase a person's risk of colorectal cancer include high fat intake, a family history of colorectal cancer and polyps, the presence of polyps in the large intestine, and chronic ulcerative colitis.

    Diet and colon cancer

    Diets high in fat are believed to predispose humans to colorectal cancer. In countries with high colorectal cancer rates, the fat intake by the population is much higher than in countries with low cancer rates. It is believed that the breakdown products of fat metabolism lead to the formation of cancer-causing chemicals (carcinogens). Diets high in vegetables and high-fiber foods such as whole-grain breads and cereals may rid the bowel of these carcinogens and help reduce the risk of cancer.

    Colon polyps and colon cancer

    Doctors believe that most colon cancers develop in colon polyps. Therefore, removing benign colon polyps can prevent colorectal cancer. Colon polyps develop when chromosome damage occurs in cells of the inner lining of the colon. Chromosomes contain genetic information inherited from each parent. Normally, healthy chromosomes control the growth of cells in an orderly manner. When chromosomes are damaged, cell growth becomes uncontrolled, resulting in masses of extra tissue (polyps). Colon polyps are initially benign. Over years, benign colon polyps can acquire additional chromosome damage to become cancerous.

    Ulcerative colitis and colon cancer

    Chronic ulcerative colitis causes inflammation of the inner lining of the colon. For further information, please read the Ulcerative Colitis article. Colon cancer is a recognized complication of chronic ulcerative colitis. The risk for cancer begins to rise after eight to 10 years of colitis. The risk of developing colon cancer in a patient with ulcerative colitis also is related to the location and the extent of his or her disease.

    Current estimates of the cumulative incidence of colon cancer associated with ulcerative colitis are 2.5% at 10 years, 7.6% at 30 years, and 10.8% at 50 years. Patients at higher risk of cancer are those with a family history of colon cancer, a long duration of colitis, extensive colon involvement, and those with primary sclerosing cholangitis (PSC).

    Since the cancers associated with ulcerative colitis have a more favorable outcome when caught at an earlier stage, yearly examinations of the colon often are recommended after eight years of known extensive disease. During these examinations, samples of tissue (biopsies) can be taken to search for precancerous changes in the lining cells of the colon. When precancerous changes are found, removal of the colon may be necessary to prevent colon cancer.

    Genetics and colon cancer

    A person's genetic background is an important factor in colon cancer risk. Among first-degree relatives of colon cancer patients, the lifetime risk of developing colon cancer is 18% (a threefold increase over the general population in the United States).

    Even though family history of colon cancer is an important risk factor, majority (80%) of colon cancers occur sporadically in patients with no family history of colon cancer. Approximately 20% of cancers are associated with a family history of colon cancer. And 5 % of colon cancers are due to hereditary colon cancer syndromes. Hereditary colon caner syndromes are disorders where affected family members have inherited cancer-causing genetic defects from one or both of the parents.

    Chromosomes contain genetic information, and chromosome damages cause genetic defects that lead to the formation of colon polyps and later colon cancer. In sporadic polyps and cancers (polyps and cancers that develop in the absence of family history), the chromosome damages are acquired (develop in a cell during adult life). The damaged chromosomes can only be found in the polyps and the cancers that develop from that cell. But in hereditary colon cancer syndromes, the chromosome defects are inherited at birth and are present in every cell in the body. Patients who have inherited the hereditary colon cancer syndrome genes are at risk of developing large number of colon polyps, usually at young ages, and are at very high risk of developing colon cancer early in life, and also are at risk of developing cancers in other organs.

    FAP (familial adenomatous polyposis) is a hereditary colon cancer syndrome where the affected family members will develop countless numbers (hundreds, sometimes thousands) of colon polyps starting during the teens. Unless the condition is detected and treated (treatment involves removal of the colon) early, a person affected by familial polyposis syndrome is almost sure to develop colon cancer from these polyps. Cancers usually develop in the 40s. These patients are also at risk of developing other cancers such as cancers in the thyroid gland, stomach, and the ampulla (the part where the bile ducts drain into the duodenum just beyond the stomach).

    AFAP (attenuated familial adenomatous polyposis) is a milder version of FAP. Affected members develop less than 100 colon polyps. Nevertheless, they are still at very high risk of developing colon cancers at young ages. They are also at risk of having gastric polyps and duodenal polyps.

    HNPCC (hereditary nonpolyposis colon cancer) is a hereditary colon cancer syndrome where affected family members can develop colon polyps and cancers, usually in the right colon, in their 30s to 40s. Certain HNPCC patients are also at risk of developing uterine cancer, stomach cancer, ovarian cancer, and cancers of the ureters (the tubes that connect the kidneys to the bladder), and the biliary tract (the ducts that drain bile from the liver to the intestines).

    MYH polyposis syndrome is a recently discovered hereditary colon cancer syndrome. Affected members typically develop 10-100 polyps occurring at around 40 years of age, and are at high risk of developing colon cancer.

    What are the symptoms of colon cancer?

    Symptoms of colon cancer are numerous and nonspecific. They include fatigue, weakness, shortness of breath, change in bowel habits, narrow stools, diarrhea or constipation, red or dark blood in stool, weight loss, abdominal pain, cramps, or bloating. Other conditions such as irritable bowel syndrome (spastic colon), ulcerative colitis, Crohn's disease, diverticulosis, and peptic ulcer disease can have symptoms that mimic colorectal cancer.

    Colon cancer can be present for several years before symptoms develop. Symptoms vary according to where in the large bowel the tumor is located. The right colon is spacious, and cancers of the right colon can grow to large sizes before they cause any abdominal symptoms. Typically, right-sided cancers cause iron deficiency anemia due to the slow loss of blood over a long period of time. Iron deficiency anemia causes fatigue, weakness, and shortness of breath. The left colon is narrower than the right colon. Therefore, cancers of the left colon are more likely to cause partial or complete bowel obstruction. Cancers causing partial bowel obstruction can cause symptoms of constipation, narrowed stool, diarrhea, abdominal pains, cramps, and bloating. Bright red blood in the stool may also indicate a growth near the end of the left colon or rectum

    What tests can be done to detect colon cancer?

    When colon cancer is suspected, either a lower GI series (barium enema x-ray) or colonoscopy is performed to confirm the diagnosis and to localize the tumor.

    A barium enema involves taking x-rays of the colon and the rectum after the patient is given an enema with a white, chalky liquid containing barium. The barium outlines the large intestines on the x-rays. Tumors and other abnormalities appear as dark shadows on the x-rays. For more information, please read the Lower Gastrointestinal Series (Barium Enema) article.

    Colonoscopy is a procedure whereby a doctor inserts a long, flexible viewing tube into the rectum for the purpose of inspecting the inside of the entire colon. Colonoscopy is generally considered more accurate than barium enema x-rays, especially in detecting small polyps. If colon polyps are found, they are usually removed through the colonoscope and sent to the pathologist. The pathologist examines the polyps under the microscope to check for cancer. While the majority of the polyps removed through the colonoscopes are benign, many are precancerous. Removal of precancerous polyps prevents the future development of colon cancer from these polyps. For more information, please read the Colonoscopy article.

    If cancerous growths are found during colonoscopy, small tissue samples (biopsies) can be obtained and examined under the microscope to confirm the diagnosis. If colon cancer is confirmed by a biopsy, staging examinations are performed to determine whether the cancer has already spread to other organs. Since colorectal cancer tends to spread to the lungs and the liver, staging tests usually include chest x-rays, ultrasonography, or a CAT scan of the lungs, liver, and abdomen.

    Sometimes, the doctor may obtain a blood test for CEA (carcinoembyonic antigen). CEA is a substance produced by some cancer cells. It is sometimes found in high levels in patients with colorectal cancer, especially when the disease has spread.

    How can colon cancer be prevented?

    Unfortunately, colon cancers can be well advanced before they are detected. The most effective prevention of colon cancer is early detection and removal of precancerous colon polyps before they turn cancerous. Even in cases where cancer has already developed, early detection still significantly improves the chances of a cure by surgically removing the cancer before the disease spreads to other organs. Multiple world health organizations have suggested general screening guidelines.

    Digital rectal examination and stool occult blood testing

    It is recommended that all individuals over the age of 40 have yearly digital examinations of the rectum and their stool tested for hidden or "occult" blood. During digital examination of the rectum, the doctor inserts a gloved finger into the rectum to feel for abnormal growths. Stool samples can be obtained to test for occult blood (see below). The prostate gland can be examined at the same time.

    An important screening test for colorectal cancers and polyps is the stool occult blood test. Tumors of the colon and rectum tend to bleed slowly into the stool. The small amount of blood mixed into the stool is usually not visible to the naked eye. The commonly used stool occult blood tests rely on chemical color conversions to detect microscopic amounts of blood. These tests are both convenient and inexpensive. A small amount of stool sample is smeared on a special card for occult blood testing. Usually, three consecutive stool cards are collected. A person who tests positive for stool occult blood has a 30% to 45% chance of having a colon polyp and a 3% to 5% chance of having a colon cancer. Colon cancers found under these circumstances tend to be early and have a better long-term prognosis.

    It is important to remember that having stool tested positive for occult blood does not necessarily mean the person has colon cancer. Many other conditions can cause occult blood in the stool. However, patients with a positive stool occult blood should undergo further evaluations involving barium enema x-rays, colonoscopies, and other tests to exclude colon cancer, and to explain the source of the bleeding. It is also important to realize that stool which has tested negative for occult blood does not mean the absence of colorectal cancer or polyps. Even under ideal testing conditions, at least 20% of colon cancers can be missed by stool occult blood screening. Many patients with colon polyps are tested negative for stool occult blood. In patients suspected of having colon tumors, and in those with high risk factors for developing colorectal polyps and cancer, flexible sigmoidoscopies or screening colonoscopies are performed even if the stool occult blood tests are negative.

    Flexible sigmoidoscopy and colonoscopy

    Beginning at age 50, a flexible sigmoidoscopy screening tests is recommended every three to five years. Flexible sigmoidoscopy is an exam of the rectum and the lower colon using a viewing tube (a short version of colonoscopy). Recent studies have shown that the use of screening flexible sigmoidoscopy can reduce mortality from colon cancer. This is a result of the detection of polyps or early cancers in people with no symptoms. If a polyp or cancer is found, a complete colonoscopy is recommended. The majority of colon polyps can be completely removed by colonoscopy without open surgery. Recently doctors are recommending screening colonoscopies instead of screening flexible sigmoidoscopies for healthy individuals starting at ages 50-55. Please read the Colon Cancer Screening article.

    Patients with a high risk of developing colorectal cancer may undergo colonoscopies starting at earlier ages than 50. For example, patients with family history of colon cancer are recommended to start screening colonoscopies at an age 10 years before the earliest colon caner diagnosed in a first-degree relative, or five years earlier than the earliest precancerous colon polyp discovered in a first-degree relative. Patients with hereditary colon cancer syndromes such as FAP, AFAP, HNPCC, and MYH are recommended to begin colonoscopies early. The recommendations differ depending on the genetic defect, for example in FAP; colonoscopies may begin during teenage years to look for the development of colon polyps. Patients with a prior history of polyps or colon cancer may also undergo colonoscopies to exclude recurrence. Patients with a long history (greater than 10 years) of chronic ulcerative colitis have an increased risk of colon cancer, and should have regular colonoscopies to look for precancerous changes in the colon lining.

    Genetic counseling and testing

    Blood tests are now available to test for FAP, AFAP, MYH, and HNPCC hereditary colon cancer syndromes. Families with multiple members having colon cancers, members with multiple colon polyps, members having cancers at young ages, and having other cancers such as cancers of the ureters, uterus, duodenum, etc., should be referred for genetic counseling followed possibly by genetic testing. Genetic testing without prior counseling is discouraged because of the extensive family education that is involved and the complicated nature of interpreting the test results.

    The advantages of genetic counseling followed by genetic testing include: (1) identifying family members at high risk of developing colon cancer to begin colonoscopies early; (2) identifying high risk members so that screening may begin to prevent other cancers such as ultrasound tests for uterine cancer, urine examinations for ureter cancer, and upper endoscopies for stomach and duodenal cancers; and (3) alleviating concern for members who test negative for the hereditary genetic defects.

    Diet and colon cancer to prevent colon cancer

    People can change their eating habits by reducing fat intake and increasing fiber (roughage) in their diet. Major sources of fat are meat, eggs, dairy products, salad dressings, and oils used in cooking. Fiber is the insoluble, nondigestible part of plant material present in fruits, vegetables, and whole-grain breads and cereals. It is postulated that high fiber in the diet leads to the creation of bulky stools which can rid the intestines of potential carcinogens. In addition, fiber leads to the more rapid transit of fecal material through the intestine, thus allowing less time for a potential carcinogen to react with the intestinal lining.

    What are the treatments and survival for colon cancer?

    Surgery is the most common treatment for colorectal cancer. During surgery, the tumor, a small margin of the surrounding healthy bowel, and adjacent lymph nodes are removed. The surgeon then reconnects the healthy sections of the bowel. In patients with rectal cancer, the rectum is permanently removed. The surgeon then creates an opening (colostomy) on the abdomen wall through which solid waste in the colon is excreted. Specially trained nurses (enterostomal therapists) can help patients adjust to colostomies, and most patients with colostomies return to a normal lifestyle.

    The long-term prognosis after surgery depends on whether the cancer has spread to other organs (metastasis). The risk of metastasis is proportional to the depth of penetration of the cancer into the bowel wall. In patients with early colon cancer which is limited to the superficial layer of the bowel wall, surgery is often the only treatment needed. These patients can experience long-term survival in excess of 80%. In patients with advanced colon cancer, wherein the tumor has penetrated beyond the bowel wall and there is evidence of metastasis to distant organs, the five-year survival rate is less than 10%.

    In some patients, there is no evidence of distant metastasis at the time of surgery, but the cancer has penetrated deeply into the colon wall or reached adjacent lymph nodes. These patients are at risk of tumor recurrence either locally or in distant organs. Chemotherapy in these patients may delay tumor recurrence and improve survival.

    Chemotherapy is the use of medications to kill cancer cells. It is a systemic therapy, meaning that the medication travels throughout the body to destroy cancer cells. After colon cancer surgery, some patients may harbor microscopic metastasis (small foci of cancer cells that cannot be detected). Chemotherapy is given shortly after surgery to destroy these microscopic cells. Chemotherapy given in this manner is called adjuvant chemotherapy. Recent studies have shown increased survival and delay of tumor recurrence in some patients treated with adjuvant chemotherapy within five weeks of surgery. Most drug regimens have included the use of 5-flourauracil (5-FU). On the other hand, chemotherapy for shrinking or controlling the growth of metastatic tumors has been disappointing. Improvement in the overall survival for patients with widespread metastasis has not been convincingly demonstrated.

    Chemotherapy is usually given in a doctor's office, in the hospital as a outpatient, or at home. Chemotherapy is usually given in cycles of treatment periods followed by recovery periods. Side effects of chemotherapy vary from person to person, and also depend on the agents given. Modern chemotherapy agents are usually well tolerated, and side effects are manageable. In general, anticancer medications destroy cells that are rapidly growing and dividing. Therefore, red blood cells, platelets, and white blood cells are frequently affected by chemotherapy. Common side effects include anemia, loss of energy, easy bruising, and a low resistance to infections. Cells in the hair roots and intestines also divide rapidly. Therefore, chemotherapy can cause hair loss, mouth sores, nausea, vomiting, and diarrhea.

    Radiation therapy in colorectal cancer has been limited to treating cancer of the rectum. There is a decreased local recurrence of rectal cancer in patients receiving radiation either prior to or after surgery. Without radiation, the risk of rectal cancer recurrence is close to 50%. With radiation, the risk is lowered to approximately 7%. Side effects of radiation treatment include fatigue, temporary or permanent pelvic hair loss, and skin irritation in the treated areas.

    Other treatments have included the use of localized infusion of chemotherapeutic agents into the liver, the most common site of metastasis. This involves the insertion of a pump into the blood supply of the liver which can deliver high doses of medicine directly to the liver tumor. Response rates for these treatments have been reported to be as high as eighty percent. Side effects, however, can be serious. Additional experimental agents considered for the treatment of colon cancer include the use of cancer-seeking antibodies bound to cancer-fighting drugs. Such combinations can specifically seek and destroy tumor tissues in the body. Other treatments attempt to boost the immune system, the bodies' own defense system, in an effort to more effectively attack and control colon cancer. In patients who are poor surgical risks, but who have large tumors which are causing obstruction or bleeding, laser treatment can be used to destroy cancerous tissue and relieve associated symptoms. Still other experimental agents include the use of photodynamic therapy. In this treatment, a light sensitive agent is taken up by the tumor which can then be activated to cause tumor destruction.

    What is the follow-up care for colon cancer?

    Follow-up exams are important after treatment for colon cancer. The cancer can recur near the original site or in a distant organ such as the liver or lung. Follow-up exams include a physical examination by the doctor, blood tests of liver enzymes, chest x-rays, CAT scans of the abdomen and pelvis, colonoscopies, and blood CEA levels. Abnormal liver enzymes may indicate growth of liver metastasis. CEA levels may be elevated before surgery and become normal shortly after the cancer is removed. Slowly rising CEA level may indicate cancer recurrence. A CAT scan of the abdomen and pelvis can show tumor recurrence in the liver, pelvis, or other areas. Colonoscopy can show recurrence of polyps or cancer in the large intestine.

    In addition to checking for cancer recurrence, patients who have had colon cancer may have an increased risk of cancer of the prostate, breast, and ovary. Therefore, follow-up examinations should include these areas.

    What does the future hold for patients with colorectal cancer?

    Colon cancer remains a major cause of death and disease, especially in the western world. A clear understanding of the causes and course of the disease is emerging. This has allowed for recommendations regarding screening for and prevention of this disease. The removal of colon polyps helps prevent colon cancer. Early detection of colon cancer can improve the chances of a cure and overall survival. Treatment remains unsatisfactory for advanced disease, but research in this area remains strong and newer treatments continue to emerge. New and exciting preventive measures have recently focused on the possible beneficial effects of aspirin or other anti-inflammatory agents. In trials, the use of these agents has markedly limited colon cancer formation in several experimental models. Other agents being evaluated to prevent colon cancer include calcium, selenium, and vitamins A, C, and E. More studies are needed before these agents can be recommended for widespread use by the public to prevent colon cancer.

    Colon Cancer At A Glance
    Colorectal cancer is a malignant tumor arising from the inner wall of the large intestine.
    Colorectal cancer is the third leading cause of cancer in males and fourth in females in the U.S.
    Risk factors for colorectal cancer include heredity, colon polyps, and long-standing ulcerative colitis.
    Most colorectal cancers develop from polyps. Removal of colon polyps can prevent colorectal cancer.
    Colon polyps and early cancer can have no symptoms. Therefore regular screening is important.
    Diagnosis of colorectal cancer can be made by barium enema or by colonoscopy with biopsy confirmation of cancer tissue.
    Treatment of colorectal cancer depends on the location, size, and extent of cancer spread, as well as the age and health of the patient.
    Surgery is the most common treatment for colorectal cancer.

    How was diagnosis established (patients)

    I was diagnosed with stage IV colon cancer, which had spread to the lymph nodes, in 2005. After extensive surgery and one year of chemotherapy using leucovorin, 5 FU, oxaliplatin, Avastin, and irinotecan, I was in complete remission! I continue to remain in remission and have scans every four months. Even at diagnosis, my CEA levels were very normal. It is a miracle, and I am very grateful!
    Published: December 29 ::

    I was 33 years old when I began noticing blood in my stool. I went to my family doctor and he had ordered an X-ray and CT scan of my abdomen. I was then sent on a 'wild goose chase' of suspicious "masses" that were "found" in my CT scan. Finally after finding out that the 5 cm mass found in my uterus was completely normal (it was just a bag of blood) my OB/GYN asked, why did you have a CT scan in the first place? I told him about my symptoms and he suggested that I get a colonoscopy ASAP. I went back to my family doctor that day and told the receptionist that I wanted a colonoscopy. . .I was told that the person who schedules these tests was on vacation for two weeks and that I'd have to wait. I told her that I'd be looking up "gastroenterologist" in the yellow pages and getting my own appointment. I did just that! I found a wonderful doctor (whose last name begins with A). He gave me an appointment within the week and I had my colonoscopy within two weeks of my initial phone call. I had my colonoscopy completed and saw the tumor with my own eyes, and observed the biopsy (it looked like a little "Pac-Man"). My biopsy did show malignancy, and I was immediately scheduled for my colon resection. After surgery, they found that my lymph nodes were positive for cancer cells, so I had stage III colorectal cancer. I met a wonderful oncologist who explained the six months of chemo and six weeks of radiation that would be necessary for me to undergo in the coming weeks. I opted to have my ovaries moved high within my body so that they wouldn't be "fried" during radiation. So after my second abdominal surgery in two months, I began chemo treatments with oxaliplatin. It was very exhausting, and I slept the weeks I had the treatment. Thankfully, it was given every other week, so I had some "awake" time to spend with my little 4 year old.
    Published: June 30 ::

    Comment from: Cancerous Carol, 55-64 Female (Patient)

    I had a barium enema and the rectal cancer ws not detected because the excess barium was sitting in that spot. However, my colonoscopy was put on hold because they couldn't find anything in the barium enema. Right from the start I had ribbons of blood in my stool and after the barium enema, I continued having this blood. My husband called our MLA who gave us a phone number to call. The doctor called this number and I finally got in for a colonoscopy - rectal cancer was detected immediately. Be an advocate for your own health. If I had had the colonoscopy earlier I may have only been stage 1 or 2 - unfortunately I am stage 3.
    Published: February 18 ::

    Comment from: Nancy, 45-54 Female (Patient)

    In July 2008, I had knee replacement surgery and during my recovery, I developed a blood clot. I was put on Coumadin for several months and noticed I was bleeding after two months on Coumadin. The bleeding was excessive, so I went to the ER and found out that I had lost an entire unit of blood. They admitted me to the hospital where I had a colonoscopy. The doctor found three polyps and a tumor. It was malignant. I never felt sick and would never have known about the tumor if I hadn't been on Coumadin and thought the bleeding was related to that blood thinner. I probably would not have bled so soon, and it could have been years before I had shown any symptoms at all. I have very early stage III and look forward to a full recovery with the wonderful surgical and medical staff I have assigned to me. Jesus is the Great Physician and my faith in Him is strong. I know with Jesus and my medical team, complete healing is a fact.
    Published: January 05 ::

    Comment from: Goldie, 19-24 Female (Patient)

    At the age of 19, I developed stomach cramps and experienced rectal bleeding. I was 20 when I finally went to the doctor and was found to have advanced colon cancer after doing a colonoscopy. I never suffered from fatigue or anything like that; those were my only symptoms. I thought I was doing OK, but I have had a relapse. I'm now 21.
    Published: December 12 ::

    Comment from: Bernadette, 55-64 Female (Patient)

    I missed my colonoscopy in the fall of 2006 but made sure I had it done in the fall of 2007. I was concerned because I was tired all the time, but I did have a history of colitis and anemia. I didn't hear anything from my doctor in October, so I assumed all was well. I made travel plans and then in early December, I received that horrible call that I had colon cancer. I live in Kentucky, and it was strongly recommended I travel to Cleveland Clinic. After following my instructions and meeting my surgeon after doing my homework regarding surgery etc., I still did not have all the details I needed. It will be a year in January that I had my large intestine removed and in April had the ileostomy reversed. I need help with diet and figuring out how to prevent leakage with leads to a very secluded life. I've used every ointment on the market. Calmoseptine is the only one that provides me with relief. Subsequently, I still use the restroom a lot. My weight is up and down. I really hate my life right now.
    Published: December 12 ::

    My red blood count was way off, and I was sleeping 14 to 16 hours a day. I just did not feel good. I kept going to doctors and complaining. Finally, I found a doctor that would listen. She sent me in for a PET scan and a CT scan, and they found colon cancer. I was operated on in the end of June, and she removed 18 inches of colon. I was lucky because the cancer had not gotten through the wall of the colon, so it hadn't spread. I didn't have to do any chemotherapy or radiation.
    Published: December 12 ::

    Comment from: Lookin Good, 25-34 Female (Patient)

    At the time, I was 32 years old and for years I kept telling doctors I did not feel right. I was told I looked good and to take more vitamins. Years later, I ended up at the hospital needing four units of blood until finally they started listening to me. A few weeks later, a tumor was found on the right side, and I was diagnosed with colon cancer. I began chemo six weeks later. I suffered quite a bit, and I was placed on morphine that did not help the pain. I am finally in remission, but I suffered nerve damage and severe anxiety attacks.
    Published: December 12 ::

    Comment from: Steve, 45-54 Male (Patient)

    I have had polyps removed periodically since age 27. I had been given a "clean" colonoscopy six years ago and told to schedule another in five years. My most recent colonoscopy and pathology showed stage III colon cancer. I think the previous colonoscopy missed a polyp. I have had a right hemi-colectomy and completed five of my six months of chemo. I ran two marathons in the previous year, and I plan to run the Ironman in Hawaii to celebrate my five year survival. I was 46 at diagnosis. So far, I have been very happy with my semi-colon.
    Published: November 13 ::

    Comment from: k080221, 19-24 Female (Patient)

    I was only 21 when I was diagnosed with colon cancer. We never expected it. I was young. I never had a colonoscopy or laboratory work before the diagnosis. We just knew it right after I had an abdominal obstruction and went through an emergency EX-Lap. During the operation, my surgeon found a tumor near my ileocecal area. It was already 10 inches in size. We sent the specimen for biopsy. Then, after weeks, the result was positive. It was already stage 3. That was almost two years ago. After I received a year of treatment, I can say I feel better now. I'm not yet a survivor, but I'm better.
    Published: November 13 ::

    Comment from: mapuana, 55-64 Male (Caregiver)

    My husband was diagnosis with colon cancer stage IV in March of this year. It also had metastasis to his liver. He was having his yearly physical for work. His blood test results were so low that he was immediately taken to the ER. His only symptoms had been a bit of fatigue. He was admitted to the hospital and the next day had a colonoscopy. After the colonoscopy, it was determined that he had colorectal cancer. He also had a full body scat scan to see if cancer was elsewhere. He had surgery 1 week later for a resection of his colon. One month later chemo started. My husband just completed his 7th series of chemo treatment (Oxaliplatin, Avastin and Xeloda) he is on a 21 day cycle. Avastin was just recently added because his doctors wanted to be sure that the resection had enough time to heal. He just had his first scat scan to see the progress. It was good no new lesions and the tumors on his liver are shrinking. We are very pleased and hopeful.
    Published: September 17 ::

    Comment from: Angellface, 45-54 Female (Patient)

    I was working as an RN nursing supervisor at a geriatric facility, the midnight shift. I had been complaining of severe fatigue, to the point of falling asleep at work and while driving home in the mornings. I was found to be anemic, so a colonoscopy was performed to find out where the blood loss was, and it was at that time I was diagnosed with stage 3 colon cancer of the left descending colon.
    Published: August 28 ::

    I was 48 when I began having stomach upset and change in bowel habits. I thought it was stress and my doctor tested for ulcer, gallbladder and other stress related ailments. Later I began passing blood, but because of my excellent health and lack of family history of polyps, no one suggested I get a colonoscopy for 5 months. That revealed a tennis ball size tumor in the descending colon. Stage III. There were 6 lymph nodes involved, but no penetration of the bowel wall. Go figure. I had 6 months of Zeloda orally and Oxaliplatin IV. Other than gaining 15 pounds during chemo, and a bit of fatigue, I did great. It's been three and a half years and all follow up tests are negative. I've yet to loose that 15 pounds.
    Published: July 18 ::

    After being first diagnosed with IBS, the GP gave me a referral for a colonoscopy. It was then that I was diagnosed with rectal cancer. I also have polyps throughout my colon. I was 35 years old when diagnosed with adenocarcinoma of colorectal type. It was only after extensive surgery that the full extent of the cancer was realized. It had spread to 5 of my lymph nodes and 2 areas outside of my lymph nodes.
    Published: June 12 ::
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  6. #6

    Cancer recurrence

    When Your Cancer Comes Back: Cancer Recurrence

    You have completed your cancer treatment and are ready to move on with your life. You've gotten used to seeing your health care team less often and things are getting back to normal. Maybe you feel you are ready to go back to work or to become a more active member of your household. You may still feel emotionally exhausted and tired from the treatments you had. Maybe you feel tired in body and spirit and need a long rest. You've just survived the biggest battle of your life, but now the doctor tells you it's not over -- you haven't won the battle yet. Your cancer has returned.

    Once treatment is completed, many cancer survivors find they have issues and concerns that they did not expect. The most significant and devastating one is cancer recurrence.

    What is cancer recurrence?

    A cancer recurrence is defined as a return of cancer after treatment and after a period of time during which the cancer cannot be detected. (The length of time is not clearly defined.) The same cancer may come back where it first started or in another place in the body. For example, prostate cancer may return in the area of the prostate gland (even if the gland has been removed), or it may come back in the bones. Either situation is a cancer recurrence.

    Recurrence or progression

    Progression is when cancer spreads or gets worse. Sometimes it is hard to tell the difference between recurrence and progression. For example, if the cancer has been gone for only 3 months before it comes back, was it ever really gone? Is this a recurrence or progression?

    Chances are this is not a recurrence. It is likely 1 of 2 things happen in cases like this. One is that, in spite of what the tests showed, all of the cancer was never completely gone. Sometimes, even with surgery, small clusters of cancer cells that cannot be seen or found on scans can be left behind. Over time they grow large enough to be detected or cause symptoms. These cancers tend to be very aggressive, or fast-growing.

    The second possibility is that the cancer may be resistant or refractory to treatment. Chemotherapy (chemo) or radiation may have killed most of the cancer cells, but some of them were not affected or changed to survive despite the treatment. Any cancer cells left behind can then grow and show up again.

    The shorter the period of time between when the cancer was gone and the time it came back, the more serious the situation. Most doctors would agree that 3 months of appearing to be cancer-free is too short to be considered a recurrence if the cancer does come back. There is no standard period of time within the definition of recurrence, but most doctors consider a cancer to be a recurrence if you had no signs of cancer for at least a year. If your cancer has been gone for only 3 months, this would most likely be a progression of your disease. In this case, the doctors would assume that the cancer (even though they could not find it in any of the tests) never totally went away.

    What are the types of recurrence?

    There are different types of cancer recurrence:

    Local recurrence means that the cancer has come back at the same place where it first started.
    Regional recurrence means that the cancer has come back in the lymph nodes near the place where it started.
    Distant recurrence means the cancer has come back in another part of the body, some distance from where it started (often the lungs, liver, bone marrow, or brain).
    If you have a cancer recurrence, your doctor can give you the best information about what type of recurrence you have and what it means to have that type.

    What is the risk of recurrence?

    The risk of recurrence (or the chance that cancer will come back) is different for each person. It depends on many factors, including the type of cancer, the treatment you had, and how long it has been since your treatment. Talk with your health care team or doctor about your specific type of recurrence. You may find this information reassuring or somewhat unsettling. Whatever information you get, remember that each person's situation is unique, no matter what statistics are given. There may be factors in your case that make your situation different.

    Could I have done something to prevent the recurrence?

    Although eating right, exercising, and seeing your doctor for follow-up visits are important, please understand that there probably was nothing you could do to keep your cancer from coming back. Many patients blame themselves for missing a doctor visit, not eating right, or postponing a CT scan for a family vacation. Yes, there are times when it is crucial to keep follow-up appointments, especially if you are having symptoms that you have not had before, because these may be signs that your cancer is back. But even if you do everything just right, you can't change the possibility that cancer will come back.

    Sometimes people think taking certain vitamins, herbs, or other dietary supplements will give them an extra edge in preventing recurrence. But the available research does not support this belief. In fact, some research has shown that supplements containing high levels of single nutrients (more than the Dietary Reference Intakes and the tolerable upper intake limits) may have unexpected harmful effects on cancer survivors. To learn more about supplements, you may want to read our document, Dietary Supplements: How to Know What is Safe.

    It would be very satisfying to have something we could use to keep cancer from coming back after treatment. We want a real weapon to fight back with -- something that will give us insurance against the cancer coming back. Both doctors and patients wish that there were such a magic potion or formula. But at this time there is nothing you could have done to make sure the cancer would not come back. Even with our current understanding of the process of cancer development and growth, this disease is mostly a mystery and not within human control.

    Some common questions about cancer recurrence

    Can a person ever be sure the cancer will never come back?

    No, it is not possible to guarantee that a person who has completed cancer treatment will never have their cancer come back. Even though your doctor may say, "Your cancer is gone," or "I think I removed all the cancer," or "I see no evidence of any cancer," the fact remains that there is always a chance that some cancer cells are left in your body and survived, even though they cannot be seen or found with any test used today. Over time, these cells can begin to grow and cause your cancer to recur.

    And while you don't want to ever think about the chance of having a second cancer, this is also possible. Having one cancer doesn't make you immune to having a second or even a third different cancer.

    Why is a "no-cancer guarantee" not possible?

    A recurrent cancer starts with cancer cells that the first treatment didn't fully remove or destroy. Some clusters of cancer cells may have been too small to be found in follow-up tests, scans, or blood work. This does not mean that you got the wrong treatment. It does not mean that you did anything wrong after treatment, either. It means that a small number of cancer cells survived the treatment you had. Over time, these cells grew into tumors or cancer that your doctor could finally detect as a recurrence.

    Just as it happened the first time, there is also a chance that some of your normal cells may, for any number of reasons, develop the same damage in their DNA. (DNA holds genetic information on cell growth, division, and function.) This damage then causes a gene (a small segment of DNA) to change (mutate). When genes mutate, they can become oncogenes, which allow cells to become cancer cells that divide too quickly and out of control.

    There is also something called a tumor suppressor gene, which tells cells when to repair damaged DNA and when to die (a normal process called apoptosis, or programmed cell death). This gene is like the brake pedal on a car. Just as a brake keeps a car from going too fast, a tumor suppressor gene keeps the cell from dividing too quickly. When tumor suppressor genes are mutated or turned off -- that is, when the brakes fail -- the cells divide very fast, allowing cancer cells to develop. Changes in tumor suppressor genes can be inherited (you are born with them), or they can happen during your life. (See our document, Oncogenes and Tumor Suppressor Genes for more information.)

    Not all of the growth factors for cancer cells have been found yet. Even though treatment may seem to have gotten rid of all of the cancer, there may be just one tiny cancer cell left someplace in the body. This cell may be "asleep" and not cause any harm for many years. Suddenly, something can happen that will change the immune system and "wake up" the cell. When it becomes active it can grow and make other cells. The result is a cancer recurrence.

    Cancer is not predictable. In some cases it will never come back, but in some cases it will. No doctor can guarantee cancer will stay gone forever.

    What does it mean when they say "5-year survival rate"?

    The 5-year survival rate refers to the percentage of patients who are alive at least 5 years after their cancer is diagnosed. Many of these people live much longer than 5 years after diagnosis. The 5-year rate is used as a standard way of discussing prognosis or the outlook for survival.

    You may also hear the term 5-year relative survival rate. Relative survival compares survival among cancer patients to that of people not diagnosed with cancer, but of the same age, race, and sex. It is used to adjust for normal life expectancy when cancer is not present. 5-year relative survival rates are considered to be a more accurate way to describe the prognosis (long-term outlook) for groups of patients with a certain type and stage of cancer. But they cannot be used to predict individual cases.

    Keep in mind that 5-year rates are based on patients who were diagnosed and first treated more than 5 years ago. These statistics may no longer be accurate because improved treatments often result in a better outlook for those who were diagnosed more recently.

    There is another point to remember when talking about survival rates. Survival rates look at survival only, not whether the person is cancer-free 5 years after diagnosis. They are based on a group of people of all ages and health conditions diagnosed with a certain type of cancer. These statistics include people diagnosed early and those diagnosed late. As with any statistics, they should only be used to get an idea of the overall picture. They cannot be used to predict any one person's outcome.

    Why won't the doctor say "You are cured"?

    Most doctors avoid using the word "cure" because it implies that your cancer is gone forever. As we have discussed, this is almost impossible to say in any case of cancer. The best a doctor can do is say that they can find no signs of cancer in your body at this time. This is most often stated as "No evidence of disease." Your doctor may continue to follow you closely for many years and do tests to watch for any signs of cancer recurrence. Be aware that it is still possible for cancer to come back even after you have been cancer-free for 5 years or more.

    What does it mean if the doctor says "Your cancer is controlled"?

    A doctor may use the term "controlled" if your tests or scans show that your cancer is not changing over time. Another way of defining control would be calling the disease "stable." Controlled means that the tumor does not appear to be growing. Some tumors can stay the same for a long time, even without any treatment. Some stay the same size because of the cancer treatment and they are watched by the doctor to be sure that they don't start growing again.

    What does it mean if the doctor says "Your cancer has progressed"?

    If the cancer does grow, the status of your cancer would change and your doctor might say that your cancer has then progressed. Most clinical trials define a tumor as progressive when there is a 25% measured growth in the tumor. (See the section, "What is cancer recurrence?" for more on the difference between recurrence and progression.)

    How is treatment response described?

    Doctors describe a complete response to treatment as that which completely gets rid of all tumors that were able to be measured or seen on a test in some way. The decrease in tumor size must last for at least one month to count as a response.

    In general, a partial response means your cancer partly responded to your cancer treatment, but still has not gone away. If you are in a clinical trial this usually is defined more precisely. A partial response is most often defined as at least a 50% reduction in measurable tumor. The reduction in tumor size must last for at least one month to qualify as a response.

    How long will I be given treatment before the doctor can tell if there is a response?

    The treatment that is first prescribed is based on the last 20 to 30 years of clinical experience in treating that kind of tumor. But no 2 cases are exactly alike, and response to treatment cannot always be predicted.

    Standard practice is to wait for 2 full cycles of treatment before looking for any response to it. This usually takes about 2 to 3 months. Response is checked by repeating the tests that show the cancer. If the tumor fails to respond to the first treatment, changes will be made, perhaps to a chemotherapy combination that has shown promise in similar cases.

    Describing the response to treatment

    Doctors describe a complete response to treatment (also called complete remission) as that which completely gets rid of all tumors that could be measured or seen on a test. This does not mean the cancer has been cured. The decrease in tumor size must last for at least 1 month to count as a response.

    A partial response (or partial remission) means your cancer partly responded to your cancer treatment, but still has not gone away. If you are in a clinical trial this usually is defined more precisely. A partial response is most often defined as at least 50% reduction in measurable tumor. The reduction in tumor must last for at least 1 month to qualify as a response.

    When cancer recurs

    When cancer comes back it can be devastating for you and the people closest to you. The medical work-up is difficult and all of the emotions you had when you were first diagnosed can resurface -- even stronger this time. You may feel more cautious, guarded, and less hopeful than ever before. You may be disappointed in your body and your health care team. Many issues and questions come with cancer recurrence. We have tried to address the more common ones here.

    Is it a recurrence or a new cancer?

    "I had breast cancer. Now they say I have liver cancer? How is that related to breast cancer? Is this a recurrence?"

    It is possible for you to have 2 different types of cancer, but it is more likely that the first cancer has come back and spread to a new area of your body, like your liver. When cancer spreads to a new location in the body, it is said to have metastasized. The new cancer growths in the new locations are said to be metastases. The liver is a very common area of spread or metastasis in breast cancer, along with the lungs, lymph nodes, brain, and bones (usually the ribs and spine).

    Tests will be done to be sure the recurrent cancer is the same type as you had before. Even when cancer has spread to a new location, it is still named after the part of the body where it started. For example, if prostate cancer spreads to the bones, it is still called prostate cancer, and if breast cancer spreads to the liver it is still breast cancer. A person with breast cancer that has spread to the liver is said to have breast cancer with liver metastases.

    While it is not possible to predict how likely cancer is to recur, experience has shown that aggressive cancers (those that are fast growing), cancers that are more widespread, or those in later stages are harder to treat and more likely to come back. Most types of cancer have a typical pattern in which they recur -- your doctor can tell you more about that if it is something you would like to know.

    Treating recurrence

    Many people want to do anything possible to treat cancer that has come back. Your doctor will probably discuss several treatment options with you. You may also decide to get a second opinion or get your health care in a national comprehensive cancer center that has more experience with your type of cancer. There are also usually clinical trials offered for patients with a cancer recurrence.

    It is very important to research your insurance coverage options along with the medical care options you are thinking about. If you need information quickly, please contact your American Cancer Society directly at 1-800-ACS-2345 (1-800-227-2345). Cancer Information Specialists are there 24 hours a day to answer your questions.

    "Why can't I take the same treatment for my recurrence as I did for my first cancer?"

    Some people do end up having some of the same types of treatment that they had for their first bout with cancer. For example, a woman with breast cancer that recurs in the area of the original cancer site may have surgery again to remove the cancerous tumor. She may also get radiation therapy, especially if it had not been given before. Next, she and her doctor may consider chemotherapy and/or hormone therapy.

    Treatment decisions are based on the type of disease, timing of recurrence, location of the recurrence, extent of spread, your overall health, and your personal wishes. For example, your doctor will probably not suggest radiation or surgery for cancer that has spread throughout the body because these local treatments can only treat cancer that is in a limited number of places.

    Another thing to think about is that cancer cells can become resistant to chemo. Tumors that come back often do not respond to treatment as well as the first tumors that were found. For example, if the cancer came back within 2 years of getting chemo, it is possible the cancer was able to grow despite the chemotherapy. It may be resistant to this type of chemo and not respond as well as it did the first time. Sometimes doctors will say, "You've already seen this drug, so we will try another drug." This means that they feel that you have gotten all the help you can from a certain drug and that another one will probably better kill the cancer cells because it works in a different way.

    Sometimes your doctor will not want to use a certain drug because of the risk of a certain side effect, or because you have had that drug in the past. For example, certain chemo drugs can cause heart problems or nerve damage in your hands and feet. To keep giving you that same drug would risk making those problems worse or even lead to a long-term side effect.

    Ask your doctor why a certain course of treatment is recommended for your recurrence at this time. Do you have 2 or 3 treatment options? Discuss these choices with your nurse or doctor, with members of your support group, and especially with members of your family. Only you can make the best decision for you.

    "My doctor has recommended surgery for my cancer recurrence but we can't schedule the surgery for a month and a half. I want this thing out like yesterday! How long is too long to wait -- how much will the cancer spread while I am waiting for the doctor to work me into his schedule?"

    While research is still being done on questions like this, for most cancers there is some time, certainly a few weeks, before you must make a decision about your treatment for recurrence. Remember that cancer cells multiply and divide until they grow enough to form a tumor or something that can be seen in a blood test or on a scan. This takes time. Usually there is some time to make a thoughtful decision about the right treatment option for you. Try not to panic when you learn about recurrence. Talk to your doctor if you are worried about waiting to start treatment. You may even want to take the time to get a second opinion. And be sure to discuss all the available options with your health care team and your family. You need to be comfortable with your decision.

    "Exactly what are the chances of treatment working this time? What are the chances of my cancer coming back again after this treatment? It seems like it will just go on and on and keep coming back¦."

    This is a very normal question to ask but one that is very hard to answer. There is no way to answer with exact percentages. The answers depend entirely on your situation, and depend on many different factors. Some of these include the type of cancer you have, the length of time between the original diagnosis and recurrence, the aggressiveness of the cancer cell type, your age, your overall health status, how well you tolerate treatment, the length of time you are able to take treatment, and the types of treatment you get.

    Scientists are studying genetic tests that may predict how likely it is that cancers such as breast, colon, and melanoma will come back. For some types of cancer, there are formulas that can help estimate the chance of recurrence. Prostate cancer is one type of cancer for which recurrence projections can be made, based on stage and grade of cancer at the time of diagnosis. For most people facing the chance of recurrence, the uncertainty of dealing with recurrence cannot be avoided. This is one reason recurrence is so hard to cope with. There are no guarantees that you can hold on to.

    What happens if treatment is no longer working?

    Sometimes the cancer keeps growing after one kind of treatment, or it comes back. It is often possible to try another treatment that might destroy the cancer or shrink the tumors enough to help you live longer and feel better. When a person has had many different treatments that did not help stop the cancer, it may mean that it has become resistant to all treatment. At this time it's important to weigh the possible limited benefit of a new treatment against the possible downsides, including the stress of getting treatment and the side effects that go with it. Everyone has a different way of looking at this.

    This is likely to be the toughest time in your battle with cancer -- when you have tried everything available and it's just not working anymore. Your doctor may offer you a new treatment, but you need to consider that at some point, continuing treatment is not likely to improve your health or change your survival.

    If you want to continue treatment to fight your cancer as long as you can, you still need to think about the chances that it will help. In many cases, your doctor can estimate the response rate for the treatment you are considering. Some people are tempted to try more chemo or radiation, for example, even when their doctors say that the odds of benefit are less than 1%. In this case, you need to think about and understand your reasons for wanting this kind of treatment.

    No matter what you decide to do, it is important that you be as comfortable as possible. Make sure you are asking for and getting treatment for any symptoms you might have, such as pain. This type of treatment is called palliative treatment.

    Palliative treatment helps relieve cancer-related symptoms, but it is not expected to cure the disease. Its main purpose is to improve your quality of life. Sometimes, the treatments you get to control your symptoms are much like the treatments used to treat cancer. For example, radiation therapy might be given to help relieve bone pain from bone metastasis. Or chemotherapy might be given to help shrink a tumor and keep it from causing a bowel obstruction. But this is not the same as getting treatment to try to cure the cancer.

    At some point, you may benefit from hospice care. Most of the time, this can be given at home. It can also be given in hospitals, nursing homes, and hospice houses. Your cancer may be causing symptoms or problems that need attention, and hospice is focused on your comfort. You should know that getting hospice care doesn't mean you can't have treatment for the problems caused by your cancer or other health conditions, but you will need to find out in advance what your hospice will do. Hospice is focused on helping you live your life as fully as possible and feel as well as you can at this difficult time.

    Remember that staying hopeful is also important. Your hope for a cure may not be as bright, but there is still hope for good times with family and friends -- times that are filled with happiness and meaning. In a way, pausing at this time in your cancer treatment gives you a chance to refocus on the most important things in your life. Now may be the time to do some of the things you've always wanted to do.

    How do people cope emotionally if the cancer recurs?

    Not everyone has the same emotions and thoughts when cancer comes back. And not everyone has the responses shared here, but many have concerns and questions like these.

    "I am so angry and upset! My cancer was gone! These are supposed to be my golden retirement years. Now I am facing more treatment. It's all my doctor's fault."

    It is understandable to be very upset when you are expecting one thing to happen and the opposite does. The last thing anyone expects is to have to go through more treatment for a cancer that they thought was gone. It is normal to want to strike out at and blame someone. A natural choice is your doctor. After all, this is the person who treated you the first time and said you appeared to be cancer-free. If you're like most people, you really wanted to believe that you'd be cancer-free forever. Now you're hearing the bad news about your recurrence, finding out about a new treatment plan, and here you are going through this difficult time -- again.

    You may feel that your doctor didn't do something right during your first treatment. Maybe you think your doctor did not follow up with you closely enough. Or maybe you feel you were not listened to as closely as you should have been. Whatever your feelings, they must be dealt with now. There are some things you can do to help resolve any issues you have at this time. You might try discussing your concerns with your doctor. See if you can clear up any bad feelings you have about how your treatment was handled.

    It is highly unlikely that any doctor would intentionally not treat you (or anyone else) as well as possible the first time. When you think about it that just doesn't make sense. Your doctors want you to do well; this is what makes the doctor successful, too. But if you feel it is not possible to work with your current doctor, it may be wise to find a new one. You may find that a fresh start with a new health care team will help you improve your attitude and feel better about your current situation.

    Feeling angry and upset about a cancer recurrence is completely normal, and you might need support and someone to talk to about these feelings. There are different sources for this type of support. For some, their support community is their church or synagogue. For others, a formal support group or online support group can be helpful. Other cancer survivors in situations like yours can understand and offer support like no one else. Still, some people prefer the privacy of one-on-one counseling. Ask your friends, family, or a trusted doctor for a referral. Just make sure that you are finding an outlet for your feelings. You deserve to be heard.

    Some degree of depression and anxiety is common in people who are coping with cancer recurrence. But when a person is emotionally upset for a long time or is having trouble with their day-to-day activities, they may have a depression or severe anxiety that needs medical attention. These problems can cause great distress and make it harder for you to follow a treatment schedule.

    Even if you are really upset and depressed about your recurrence you have some things going for you.

    Depression can often be treated fairly quickly and treatment usually works well.
    Improving your physical symptoms and taking action will probably make your mood better.
    You have already been in a battle with cancer once and you learned a lot along the way. Try the things you that helped you then. Those same relationships and coping skills may help you now.
    Family and friends should be alert for symptoms of distress. If they notice symptoms of depression or anxiety, they should encourage the person to seek the help of a health care professional. Anxiety and clinical depression can be treated many ways, including medicine, psychotherapy, or a both. These treatments can help the person feel better and improve the quality of their life.

    "I am only 35 years old. How am I supposed to deal with cancer recurrence? I am too young to die."

    Cancer is difficult at any age, but it is especially hard to cope with when you are young and supposed to have a full, long life ahead of you. Cancer recurrence may seem even more unfair then. Also, cancer often is found to be more aggressive in the younger cancer survivor. This aggressiveness means that it may tend to come back earlier and be harder to treat.

    Having a recurrence does not mean that you will die, but there is no denying that this is something you must consider. It is a terribly painful prospect, one that requires much thoughtful processing and even preparation. First of all, a talk with your doctor can give you some idea how realistic your fears and concerns are. Even when you are healthy, it never hurts to be prepared for the chance you could die. You will want to make provisions for your family if the worst happens. You also need to get support that works for you so you can talk about and express your feelings about this recurrence. Sometimes our lives can have a purpose and meaning that we cannot see clearly. It can be very helpful to discover that purpose and take pleasure from it when it seems there is no hope.

    Get support

    A support group can be a powerful tool for both patients and families. Talking with others who are in situations like yours can help ease loneliness. You can also get useful ideas from others that might help you.

    "I tried going to a support group after I was diagnosed with recurrence. Everyone in there was newly diagnosed. I felt really out of place and like I was bumming everyone out. Plus I didn't get any support..."

    You can find support programs in many different formats, such as one-on-one counseling, group counseling, and support groups. Some groups are formal and focus on learning about cancer or dealing with feelings. Others are informal and social. Some groups are made up only of people with cancer or only caregivers while others include spouses, family members, or friends. Other groups focus on certain types of cancer or stages of disease. The length of time groups meet can range from a set number of weeks to an ongoing program. Some programs have closed membership and others are open to new, drop-in members.

    It is very important that you gather information about any support group you are thinking about joining to make sure that there are patients in all phases of treatment, including some with recurrence and disease progression. Ask the group leader or facilitator to tell you what types of patients are in the group and if anyone in the group is dealing with recurrence.

    Another option for support may be online support groups. The Cancer Survivors Network, an online support community supported by your American Cancer Society, is just one example. (You can visit this community online at www.acscsn.org.) There are many other reputable communities on the Internet that you can join, too. You may also enjoy a personal connection with a counselor who can give you one-on-one attention and encouragement. Your doctor may be able to refer you to a counselor who works with cancer patients.

    Religion can be a source of strength for some people. Some find new faith during a cancer experience. Others find that cancer strengthens their existing faith or their faith provides newfound strength. If you are a religious person, a minister, rabbi, other leader of your faith, or a trained pastoral counselor can help you identify your spiritual needs and find spiritual support. Some members of the clergy are specially trained to help minister to people with cancer and their families.

    Spirituality is important to many people. Many people are comforted by recognizing that they are part of something greater than themselves, which helps them find meaning in life. Meditating, practicing gratitude, and spending time in nature are just a few of the many ways that people address spiritual needs.

    Support in any form allows you to talk about your feelings and develop coping skills. Studies have found that people who take part in a support group have an improved quality of life, including better sleep and appetite. You can contact your American Cancer Society to find out about sources of support that are available in your area.

    "I can't afford to have cancer again. Even though I have insurance, the coverage is not very good. My deductible is really high and my medicines cost a lot. I'm already working fewer hours because my last treatment left me unable to think as quickly as I could before. I feel really trapped. I can't afford not to have treatment, but I can't afford to have it either..."

    Financial support is often a very real concern for cancer survivors facing recurrence. For many, as this survivor describes, the problems began with the first cancer illness.

    Hopefully, you have been able to keep your medical coverage. Sometimes there are insurance options cancer survivors have that they may not be aware of. Talk to your doctor, your facility's financial counselors, or a social worker. You can also call 1-800-ACS-2345 for help finding possible sources of financial assistance.

    Treating cancer as a chronic illness

    "My cancer has come back 3 times. I just keep fighting, even though I know there's a good chance that treatment won't make the cancer go away forever¦."

    Cancer may not be a one-time event. Cancer can come back a second and third time. Cancer can even become a chronic (ongoing) illness that never goes away completely. In some cases, especially with certain cancer types, this is true. Although recurrent disease may not be cured, it can often be controlled. In fact, there's always a chance that your cancer will go back into remission. The natural tendency of some cancers (for example, ovarian), is one of recurrence and remission. Often, this repeating cycle of recurrence and remission can translate into survival over many years during which the cancer can be managed as a chronic illness.

    Repeated recurrences, often with shorter time periods in between disease-free intervals, can become discouraging and exhausting. The question of whether to continue treating cancer that keeps coming back is a valid one. Your choices about ongoing treatment are personal and based on your needs, wishes, and abilities. There is no right or wrong decision on how to handle this phase of the illness.

    Still, it is important to know that even those who are not cured of cancer may go on living for months or years, even though there may be changes in their lives. For these people, cancer can be much like diabetes -- a chronic illness that is mostly controlled with treatment.

    Having a recurrence does not put you beyond hope or help; you may be living with a disease that can be treated or controlled. Keep in mind that you can learn to live with cancer and remember the good news: there are nearly 11 million Americans alive today who have had cancer and the survival rate is improving all the time.
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  7. #7
    Regular User
    Join Date
    Jan 2010

    colon cancer

    I went to doctors for 3 yrs before they did a c scan on me and was stage 3 removed my colon and 34 nodes 19 cancer on chemo now for 3 months 3 more to go. I had my surgery 7-2009 my sugestion is if you have a colonostopy and still have symptons ask for a c scan to be done They removed 3 polops from my colon but the scan showed a softball size tumor on my colon..this is something you should not put off cancer kills and I am grateful to God that I am not cancer free..

  8. #8


    What is CEA?

    CEA stands for carcinoembryonic antigen. CEA is a type of protein molecule that can be found in many different cells of the body, but is typically associated with certain tumors and the developing fetus. The word "carcinoembryonic" reflects the fact that CEA is produced by some cancers ("carcino-") and by the developing fetus ("-embryonic").

    How is CEA measured?

    CEA is most frequently tested in blood. It can also be tested in body fluids and in biopsy tissue.

    What is the normal range for CEA blood levels?

    The normal range for CEA in an adult non-smoker is <2.5 ng/ml and for a smoker <5 ng/ml before therapy are associated with cancer which has already spread (metastatic disease).

    What conditions can cause an elevated CEA?

    Both benign and malignant (harmless and cancerous) conditions can increase the CEA level. The most frequent cancer which causes an increased CEA is cancer of the colon and rectum. Others include cancers of the pancreas, stomach, breast, lung, and certain types of thyroid and ovarian cancer. Benign conditions which can elevate CEA include smoking, infections, inflammatory bowel disease, pancreatitis, cirrhosis of the liver, and some benign tumors in the same organs in which an elevated CEA indicates cancer. Chemotherapy and radiation therapy can cause a temporary rise in CEA due to the death of tumor cells and release of CEA into the blood stream. Benign disease does not usually cause an increase above 10 ng/ml.

    What are the limitations of CEA testing?

    CEA is not an effective screening test for hidden (occult) cancer since early tumors do not cause significant blood elevations. Also, many tumors never cause an abnormal blood level, even in advanced disease. Because there is variability between results obtained between laboratories, the same laboratory should do repeat testing when monitoring a patient with cancer.

    For some people it is an ongoing indicator of how their cancer is doing ~ (like me) for others (Like REB) their CEA has never risen so is not a good indicator of how the cancer is doing.
    Total hysterectomy July 23 2008, mass in colon.
    Colonoscopy Aug 2008
    Rigid Sigmoidoscopy with a laparoscopic-assisted partial colectemy with enbloc small bowel resection Sep 2008
    Diagnosed: Stage IV Colon Cancer mets to lungs and liver. (T3,N2,M1,G2) KRAS Mutation
    Started chemotherapy: 09/14/09 Folfox-6/Avastin then Camptosar/Avastin & last Folfox-6/Avastin
    On Hospice, started 11/12/10
    Last PET scan: Oct 12th
    Most recent CEA Level: 09/27/10: 696.7 up from 08/16/10: 284.8

  9. #9
    Hi folks.

    For the last 2 years I have felt helpless in my battle against cancer. The doctors have all told me there is not much I can really do...that it is all in their hands. That really bothered me. Then my cousin sent me this book;


    I was skeptical about reading it. I am more of a science fiction fan LOL. But once I started reading it, I couldn't put it down. I read the whole thing in 4 or 5 days. It changed my life. It showed me I wasn't helpless, that I could do something.

    I strongly recommend everyone read it (I am not making a penny off it ).

    The first half of the book talks about what we should and should not eat. The second half deals with having a positive attitude and exercise. I benefited the most from the first half.

    I have never really eaten healthy. I always though as long as I exercised, I could eat whatever I want. I was wrong. What we eat and do not eat is very important in our health, ...and fighting cancer.
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

  10. #10
    Regular User
    Join Date
    Apr 2010

    I was very healthy but did have signs

    Last May and June I developed severe stomach/intestinal stress. There was a stomach virus going around and I thought I had caught it. Then it returned two weeks later and I kept feeling "blocked" at my bellybutton level in my stomach. I went to the doctor who suspected gall bladder problems and ordered a MRI. The MRI alerted everyone that it was not gall bladder trouble but liver trouble and a CT scan was then done. The doctor at my clinic called me in to tell me I had cancer. I thought you could not say the "C" word until a biopsy had been performed. I went to the UNM cancer center for a biopsy and it was determined that it was colon cancer that had moved to my liver and lungs. Three days before the biopsy was scheduled the nurse at the cancer center called to tell me that the radiologist had just noticed a tumor in my colon and it had been blocking my intestines--no wonder I was in such retching pain! She said to get to a hospital if I could not pass gas or have a BM, as the colon might just break a wall from the pressure.(I had been saying from the beginning: I feel blocked!!) I had been losing a lot of weight by this time and was feeling so weak. The doctors did not do a colonoscopy or surgical removal of the tumor but decided to begin chemotherapy as soon as possible. However, the doctor told me, with treatement, I would have "years, how many, I cannot say," he said. The surgery would have delayed chemo by about 6 weeks and I guess I was fading too fast for that. I am doing standard treatment (oxiliplatin, avastin and xeloda) every other week with a four hour infusion (I take the xeloda orally for a week following infusion.) After the first treatment, I began to feel better. I have had two CT scans since starting in early Sept. '09 and the tumors appear to be shrinking and showing some sign of calcifying. The tumor in the colon is no longer robbing my red blood cells, so my energy level is returning. My doctor is ordering new treatment where beads of chemo drugs will be inserted directly into my liver to target the tumors. I had been extremely healthy all my life (53 years) but did not notice the symptoms of bloating due to gas, changes in my bowel movements over a period of about two years. I thought I was just post menopausal and experiencing hormonal changes. As one post above outlined the stages, I wish I had paid more attention because had we caught this earlier than stage 4, I would have saved myself, my family and many others a lot of grief.


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