Facing Appendiceal Cancer
Remember that you do not have to face cancer alone. It is natural to feel anger, fear, frustration and sadness. Keep in mind, however, that appendiceal cancer is a treatable disease. There are many resources available with a wide range of information to help you cope with your cancer diagnosis. There are teams of experts who will provide support to you and your family.
1. LEARN ABOUT YOUR DIAGNOSIS
- Guide to Cancer of the Appendix – a detailed, medically reviewed guide
- List of Questions to Ask Your Doctor – Remember to write your questions down before your doctor’s appointment, and be sure to take notes. Don’t hesitate to ask your doctor to explain unfamiliar terms, or to clarify confusing information. Ask your doctor for any literature or reading recommendations.
2. FIND AN ONCOLOGIST AND TREATMENT FACILITY
The starting point for selecting a physician is identifying those doctors who are highly skilled and experienced in treating cancer of the appendix. Begin with our Physician Referral section where we have compiled a list of these experts. Only a handful of physicians in the United States actively focus on treating appendiceal cancer, and, as you might expect, they are scattered around the country. Thus, depending on your hometown, to receive care from the most experienced physicians, you may have to travel some distances for diagnosis and treatment.
In addition to physical location, there are other major factors one should consider when selecting a surgical oncologist. Not all physicians follow the same protocol, even though they may all be highly skilled and experienced. You should attempt to understand the differences in protocols that may exist among the physicians you are considering for treatment. Ultimately, the treatment you receive should be as consistent as practically possible with your personal needs and priorities. Be proactive; ask questions. To maximize objectivity, have others help you with respect to this search. Make sure that you feel most comfortable with the team you have chosen to provide your first line of attack against this cancer.
3. MAKE TREATMENT DECISIONS
Talk to your doctor about your options which may include surgery, radiation therapy, chemotherapy and enrolling in a clinical trial. Understand the goals of the treatment options so that you can better weigh the risks, such as possible side effects and the benefits.
Many patients get second, even third opinions. The more you know about appendiceal cancer and the treatment options available, the more comfortable you will be with the health-care decisions you will be asked to make.
4. MANAGE YOUR TREATMENT
Becoming organized will help you keep from becoming overwhelmed. You will need to keep track of appointments, information, medical records, medicine, bills, insurance, contact information and more. This Guide to Organizing Your Cancer Care from Cancer.net has suggestions on keeping files, staying on top of insurance, managing costs and budgets, and keeping personal medical records. Be sure to make and keep appointments requested by your doctor, as well as tests and scheduled follow up visits.
5. GET HELP AND SUPPORT
You and your family will sometimes need assistance coping with the practical and the emotional aspects of cancer. Many resources are available for people with cancer and their families. Support can come from family and friends – accept their offers to help. It makes them feel good to help you. Ask for help from health professionals, support groups, or your place of worship. Also turn to others who have cancer, social workers and caregivers. Your doctor and hospital can get you in touch with a whole range of specially trained people available to help you meet all your needs. Getting support will also make you feel more in control during this stressful time.
- Here are a few helpful articles:
- National Cancer Institute – “People Helping People”.
- Suggestions from the American Society of Clinical Oncology on Support Groups
- See our Patients, Family Members and Friends page for more support.
- See our Resources page for more support groups to contact.
1. What is cancer?
Cancer is a spectrum of diseases whose common thread is uncontrolled or unregulated growth, often but not always associated with the ability to spread from one site in the body to another. Abnormal cells divide and are able to invade other tissues. Cancer cells can spread to other parts of the body through the blood and lymph systems. There are more than 100 different types of cancer. Most cancers are named for the organ or type of cell in which they start.
2. How is a benign tumor different from one that is cancerous?
Not all tumors are cancerous; tumors can be benign or malignant. A benign tumor usually lacks the ability to spread to distant sites in the body. It also usually lacks the ability to invade into adjacent structures. Benign tumors can often be removed, and, in most cases, they do not come back.
Malignant tumors are cancerous. Cells in these tumors can invade nearby tissues and spread to other parts of the body. The spread of cancer from one part of the body to another is called metastasis.
3. What is appendiceal cancer?
Appendiceal Cancer is a malignant growth that starts in the appendix. Appendiceal cancer involves a spectrum of neoplasms arising from the appendix ranging from a very indolent tumor to a highly aggressive infiltrating one. There are several types of cancer of the appendix, each of which has slightly different characteristics.
4. What is the prognosis for successful treatment?
Prognosis depends on the extent of the disease. It can be highly lethal or if caught early or of a low aggressiveness, and treated appropriately, have no impact on survival.
5. How does it compare to other cancers? (treatment and survivability)
Its treatment and survivability depends on the innate aggressiveness of the patient’s specific disease and extent of disease at presentation. Cancer of the appendix has a variety of subtypes. Although the high grade types have a poorer prognosis, most cancers of the appendix are more slow growing than many other cancers that are more commonly encountered.
6. What cancer treatment centers specialize in appendiceal cancer?
An increasing number of cancer treatment centers specialize in the treatment of appendiceal cancer, but still relatively few with any significant experience. Please visit our Physician Referral page.
7. How is this cancer treated? What are the treatment options?
The treatment of cancer varies from stage to stage and it also depends on the type. It is usually treated with surgery and/or chemotherapy, in rare circumstances radiation therapy. Read more in our treatment options page.
8. What is the most aggressive treatment option?
Cytoreductive Surgery with intraperitoneal hperthemic chemotherapy is the most aggresive treatment.
9. What is the least aggressive treatment option?
Observation is the least aggressive treatment. Removal of the appendix and mucin are relatively less aggressive than CRS/HIPEC.
10. Are there any warning signs?
There are no reliable warning signs of early disease. However, things that could be associated with it include unexplained persistent abdominal pain, new hernia, and disproportionate increase in abdominal girth. Some patients have other non-specific symptoms such as bloating, changes in bowel habits, early satiety, anemia, progressive weakness and blood in the stool.
11. Is there any causal connection to appendiceal cancer?
There is no known causal connection to appendiceal cancer yet.
12. What is an orphan disease? Why is appendiceal cancer referred to as an orphan disease?
A rare disease that affects a relatively small number of patients is referred to as an orphan disease. For example, there may be 500-1000 appendiceal patients compared to 165,000 colon cancer patients each year. With only a few thousand cases/year found in the U.S. This makes it too rare for medical supply or pharmaceutical companies to make profitable entry into the field. Its rarity also makes it a low priority for national agencies which put efforts into more common diseases.
PATIENTS, FAMILY MEMBERS & FRIENDS
It is often difficult for family members and friends to know how to cope with a loved one’s cancer diagnosis. Listed below are some of the email and telephone support services. For specific medical questions, be sure to consult your physician and please see our Resources page.
American Cancer Society
Calls are answered 7 days a week, 24 hours a day.
American Psychosocial Oncology Society
Call to get a referral to a local psychiatrist, psychologist, nurse, social worker, or counselor who is skilled in the management of cancer-related distress.
CancerCare provides professional support services to anyone affected by cancer, including people with cancer, caregivers, children, loved ones, and the bereaved. Professional oncology social workers provide information about talking with your doctor, finding financial resources, researching treatment options, coping with side effects, dealing with emotional issues, and talking with children about cancer.
Cancer Hope Network
The Cancer Hope Network matches you with a trained volunteer who has had a similar diagnosis
National Cancer Institute
The National Cancer Institute (NCI) is a component of the National Institutes of Health and is the federal government’s principal agency for cancer research and training.
Patient Advocate Foundation
The Patient Advocate Foundation serves as a liaison between the patient and their insurer, employer, and/or creditor to resolve issues related to their diagnosis.
RESOURCES AND SUPPORT
Symptoms and Warning Signs
There are no reliable warning signs of early disease. However, symptoms that could be associated with cancer of the appendix include:
- unexplained persistent abdominal pain
- new hernia
- disproportionate increase in abdominal girth
Some patients have other non-specific symptoms such as:
- changes in bowel habits
- early satiety
- progressive weakness
- blood in the stool
Be sure to speak with your doctor if you are concerned about any symptoms.
The treatment of appendiceal cancer varies from stage to stage. It also depends on the type of appendiceal cancer, the size of the tumor, the health of the patient. Treatment options include:
SURGERY such as:
- simple appendectomy (usually for tumors less than 1.5 cms)
- Debulking or Cytoreductive surgery (removing as much of the cancer as possible which may include removal of part of colon near appendix, removal of part of large intestine)
- removal of mucous from the abdomen
CYTOREDUCTIVE SURGERY WITH INTRAPERITONEAL HYPERTHERMIC CHEMOTHERAPY (CRS/HIPEC)
- The term “Intraperitoneal” means that the treatment is delivered to the abdominal cavity.The term “Hyperthermic Chemotherapy” means that the solution containing chemotherapy is heated to a temperature greater than normal body temperature.
- Before HIPEC is administered, the surgeon–using standard surgical methods–will remove all visible tumors that can be removed throughout the peritoneal cavity.Following cytoreductive surgery, the surgeon will administer HIPEC treatment. Click on the following link to see an animation of how HIPEC works:http://www.hipectreatment.com/documents/hipec.php
RADIATION THERAPY – a developing therapy to be explored with your physician.
Clinical trials are studies in which people volunteer to test new drugs or procedures. Doctors use clinical trials to learn whether a new treatment is safe and effective in humans. These studies are necessary for developing new treatments for serious diseases such as cancer.
UNDERSTANDING CLINICAL TRIALS
Be sure to ask your physician if he or she knows of any current clinical studies that may apply to you. The following websites have detailed information that will help you understand clinical trials and help you decide if it is an option for you:
- Understanding Clinical Trials from NIH
- Clinical Trials: What You Need to Know from the American Cancer Society
SEARCH FOR CLINICAL TRIALS
When searching for clinical trials, enter searches for appendix cancer, appendiceal cancer, carcinoid tumor, and pseudomyxoma peritonei.
The following institutes may offer clinical trials:
Also search the sites of the medical centers with which the leading doctors are associated on our Physician Referral page. For instance, the University of Texas MD Anderson Medical Center listed their own study on the Assessment of the Impact of Systemic Chemotherapy on the Quality of Life (QOL) in Patients with Metastatic Appendiceal Epithelial Neoplasms (AEN).