Ocean View Oncology

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Lung Cancer Program

Lung cancer is the most common type of cancer to affect both men and women. It is also the leading cause of cancer death in the United States. This page, and the resources it provides, is intended to help you find information you need to become an educated patient or care provider, and help those who are trying to quit smoking. Also help you learn more about available clinical trials.

Lung Cancer Resources

www.ucanquit2.org www.lungcanceralliance.org www.lungusa.org www.lungevity.org www.lcfamerica.org www.nationallungcancerpartnership.org www.lungcancercap.org www.lungcancer.org www.patientadvocate.org

Screening for Lung Cancer

The best evidence now illustrates that low dose chest CT (LDCT) screening can save lives, but only if it is done well. Only a well-defined, high risk population that can potentially undergo curative treatment if a lung cancer is identified should be screen. Screening must be preceded by shared decision making based on counseling on the potential benefits as well as risks of LDCT screening. LDCT screening should be done only at centers with experience in using LDCT screening protocols.

Being a Caregiver

Caregivers are typically family members and friends who provide vital and constant physical and emotional care of a person with cancer. This section provides information on defining the role of caregivers and the potential challenges caregivers face. To learn more on being a caregiver, please click here.

Tips On Caregiving

Find helpful tips on how to manage caregiving.

How Caregivers Can Take Care of Themselves

This article provides stress management tips and coping information.

Exploring New Caregiver Options

Learn about other options for helping with caregiving.

Sharing Responsibilities

Learn how to work together as a family to provide care.

Caregiving At The Hospital

Different challenges face those who are helping to provide care for a patient who is in the hospital.

Home Health Care

Learn about the different types of home care, how to find home care, and how to pay for home-care services.

Long Distance Caregiving

Learn ways to become an effective caregiver from a distance.

Online Resources For Caregiving

Find a list of online resources from support organizations for caregivers.

Prevention

Many people think cancer is inevitable, but for some types of cancer, you can take steps to reduce the risk. Healthy lifestyle habits hold the key to cancer prevention. Up to two-thirds of all cancers may be preventable by avoiding tobacco and adopting other healthy lifestyle habits. Regular screenings can help detect many cancers in the earliest stages, when they can be treated successfully.

Ocean View Oncology can help you learn to reduce your cancer risk. Thorough cancer screening examinations include cancer risk assessment, screening exams based on age and gender, as well as personalized risk-reduction strategies. Prevention strategies include genetic testing, chemoprevention, stress management and nutritional counseling.

In October 2014, the International Agency for Research on Cancer (IARC) of the World Health Organization (WHO) issued its 2014 guide for cancer prevention. The updated Code Against Cancer outlines 12 specific recommendations for a healthy lifestyle, with the goal of cutting cancer cases by half. The 12 recommendations emphasize the importance of (1) avoiding tobacco, (2) avoiding alcohol, (3) avoiding excessive sun exposure, (4) avoiding exposure to radiation from radon, (5) maintaining a healthy body weight, (6) being physically active, (7-9) screening for bowel, breast, and cervical cancers, (10) vaccinating against human papillomavirus, (11) breastfeeding, and (12) limiting hormone replacement therapy.

Our Cancer Prevention Program offers a wide range of screening and early detection services recommendations. To determine which services are best for you, or to schedule an appointment, call 949-218-2800.

Screen Out Your Risk

Cancer screening examinations are medical tests performed when you’re healthy and you don’t have any symptoms. They help ensure that any existing cancers are identified at their earliest, most treatable stages.

Take time to discuss your own cancer risks with your health care provider, who can best advise you on the screening exams and risk reduction strategies that are right for you. Your health care provider can let you know about the benefits, limitations and potential harms of cancer screening so that you can make an informed decision about testing.

 

Breast Cancer

All women should be familiar with their breasts so that they will notice any changes and report them to their doctor without delay. An approach to breast cancer screening should incorporate an individual’s level of breast cancer risk, established by history and by use of a risk prediction model.

  • All female patients should discuss breast cancer screening with their doctors starting at age 40.
  • We recommend that women between the ages of 50 and 70 be screened with mammography.
  • We suggest that women over the age of 70 be screened with mammography if their life expectancy is at least 10 years.
  • The ideal interval for screening mammography is not known. We suggest screening every two years.
  • The efficacy of breast self-examination (BSE) is unproven.
  • Women at high risk for breast cancer (lifetime risk >20 to 25 percent) should be referred for genetic counseling to determine the likelihood of a BRCA mutation and to decide on management options.
  • Consider additional screening if you are at risk – Women at increased risk of breast cancer (e.g., family history, genetic predisposition, past breast cancer) should talk to their doctor about the benefits and limitations of starting mammograms earlier, having additional tests (e.g., breast ultrasound or MRI) or having more frequent exams.
 

Colorectal Cancer

Beginning at age 50, men and women should follow ONE of the five examination schedules below. Screening tests that visualize the colon are being favored.

  • Colonoscopy – Every 10 years. Polyps >6 mm should be removed.
  • Fecal occult blood test (FOBT) – When visualization of the colon is not feasible, a take-home multiple sample FOBT or fecal immunochemical test (FIT, which also is a take-home test) should be taken every year.
  • Flexible sigmoidoscopy(FS) – Every five years.
  • Annual FOBT or FIT and flexible sigmoidoscopy – Every five years. Having both of these tests is recommended over either test alone.
  • Double-contrast barium enema – Every five years.

All positive tests (FOBT, FIT, flexible sigmoidoscopy, barium enema) should be followed up with colonoscopy.

 

Prostate Cancer

Although screening for prostate cancer with PSA can reduce mortality from prostate cancer, the absolute risk reduction is very small, and there remain important concerns that the benefits of screening are outweighed by the potential harms to quality of life, including substantial risks for over diagnosis, and treatment-related complications.

  • Screening risks and benefits should be discussed with a health care provider.
  • We suggest that discussions begin at age 50 in average-risk men.
  • We suggest that discussions begin at age 40 to 45 in men at high risk for prostate cancer, including black men, men with a family history of prostate cancer, and men who are known or likely to have the BRACA1 or BRACA2 mutations.
  • We suggest that screening be performed with prostate specific antigen (PSA) test at intervals ranging from every two to four years.
  • When a decision is made to screen, we suggest that screening stop after age 69 or earlier when comorbidities limit life expectancy to less than 10 years.
  • We suggest that men with a PSA level between 4 ng/ml and 7 ng/ml undergo repeat testing several weeks later. Men with a repeat PSA level above 4 ng/ml should be referred for prostate biopsy.
  • Many experts suggest not performing a digital rectal examination (DRE) for prostate cancer screening, whether alone or in combination with PSA screening.

 

 

Cervical Cancer

Observational studies have demonstrated marked reductions in cervical cancer mortality following the implementation of national or regional Pap smear screening programs.

Women at average risk of cervical cancer:

  • Beginning 3 years after initiating vaginal intercourse (but no later than age 21) – Liquid-based Pap test every two years
  • Beginning at age 30 – Liquid-based Pap test and human papilloma virus (HPV) test every three years
  • HPV infection is common in women under age 30, and is usually transient. Therefore, HPV testing is not recommended as part of the Pap test for women under age 30 as studies have shown HPV screening at this age to be ineffective.
  • Genotyping to identify HPV 16/18, the two HPV types responsible for 70% of cervical cancer in the US, can be performed either by the Cervista 16/18 test as follow-up to an abnormal HPV test, or as part of the cobas HPV test.

Women at increased risk of cervical cancer still need to be screened annually. Speak with your doctor to determine if you have cervical cancer risk factors.

Women at lower than average risk should speak with their health care provider about less frequent screening:

  • Women age 70 or older with three or more normal Pap tests in a row and no abnormal Pap tests in the past 10 years
  • Women who have had a hysterectomy (removal of the uterus and cervix) that was not done for cancer or pre-cancer of the cervix
 

Skin Cancer

Promptly show your doctor any:

  • Suspicious skin area
  • Non-healing sore
  • Change in a mole or freckle
 

Lung Cancer

The best evidence now illustrates that low dose chest CT (LDCT) screening can save lives, but only if it is done well. Only a well-defined, high risk population that can potentially undergo curative treatment if a lung cancer is identified should be screen. Screening must be preceded by shared decision making based on counseling on the potential benefits as well as risks of LDCT screening. LDCT screening should be done only at centers with experience in using LDCT screening protocols.

 

Ovarian Cancer

Ovarian cancer is the leading cause of death from gynecologic malignancy in the United States. The strongest known risk factor for ovarian cancer is a family history. We suggest periodically screening women with a familial ovarian cancer syndrome, who have not undergone prophylactic oophorectomy, with a combination of CA 125 and transvaginal ultrasound. SOG and NCCN recommends screening these women every six months beginning between ages of 30 and 35 years.

We recommend NOT screening average-risk women for ovarian cancer.

 

Endometrial Cancer

Benefits of screening for individuals at average risk for endometrial, ovarian and lung cancer have not yet been proven, and screening is therefore not recommended. The following are related conditions to consider:

  • Women with hereditary non-polyposis colorectal cancer – Annual endometrial biopsy is recommended beginning at age 35.
 

Contact Dr. Gabriel Carabulea for the most recent changes/recommendations by USCSTF.

Taking action and practicing healthy behaviors is just one way to reduce your risks for many cancers. Detecting cancer at an early stage is another way. You can do this by being aware of your body and paying attention to unusual changes, and by observing Screening Guidelines.

Here are some of the symptoms for the most common cancers. If you experience them for more than two weeks, check with your doctor. Remember, detecting cancer early can greatly increase your chances of a successful treatment.

Breast Cancer:
  • New lump in the breast or armpit. Enlarged lymph nodes. Changes in breast size, shape or skin texture. Skin redness. Dimpling or puckering. Nipple changes or discharge. Scaliness
  • Nipple pulling to one side or a change in direction.

Many breast changes, including lumps, are not cancer, but if you notice one or more than two weeks, see your doctor.

Colorectal Cancer:
  • Rectal bleeding. Blood in the stool or toilet after a bowel movement. Prolonged diarrhea or constipation. A change in the size or shape of your stool. Abdominal pain or a cramping. Pain in your lower stomach.
  • A feeling of discomfort or urge to have a bowel movement when there is no need.
Endometrial Cancer (lining of the uterus):
  • Bleeding after menopause (in more than 90% of patients). Irregular vaginal bleeding before menopause.
  • Change in bowel or bladder habits.
Cervical Cancer:
  • Bleeding after intercourse Abnormal bleeding between periods.
  • Excessive vaginal discharge.
Prostate Cancer
  • Frequent urination. Hard time when starting to urinate, or trying to hold back. Not being able to urinate. Weak or interrupted urine flow. Painful or burning urination. Blood in the urine. Difficulty having an erection. Blood in the semen.
  • Frequent pain or stiffness in the lower back, hips or upper thighs.

Many prostate symptoms are not cancer, but if you notice one or more of these symptoms for more than two weeks, see your doctor.

Testicular Cancer
  • Small, hard lump that is often painless. Change in consistency in the testicles. Feeling of heaviness in the scrotum. Dull ache in the lower abdomen or the groin. Sudden collection of fluid in the scrotum.
  • Pain or discomfort in a testicle or in the scrotum.

Beginning at age 18, men should examine their testicles monthly. Testicular cancer is the most common cancer in young men between the ages of 18 and 35.

Oral Cancer
  • White or velvety red patches in the mouth.
  • Lumps or hardening of tissue in the mouth.

If you smoke, chew or dip tobacco, or drink alcohol, you should examine your mouth regularly.

Skin Cancer
  • Change on the skin such as a:
    • New spot
    • Spot that changes in size, shape or color.
  • Flat, red spot that is rough, dry or scaly.
  • Sore that doesn’t heal. Spot or sore that changes in sensation, itchiness, tenderness or pain. Small, smooth, shiny, pale or waxy lump. Firm red lump that may bleed or develops a crust.
Lung Cancer
  • Clubbing of fingers.
  • Cough that will not go away and gets worse over time. Constant chest pain, or arm and shoulder pain. Coughing up blood. Shortness of breath, wheezing or hoarseness. Repeated episodes of pneumonia or bronchitis. Swelling of the neck and face. Loss of appetite and/or weight loss. Fatigue.

Recommended Changes in the Typical American Diet

A simple, straightforward diet, not a strange or complicated one, is recommended for reducing your own and your children’s likelihood of cancer. Here are some good guidelines:

Increase consumption of:

  • Fibrous foods such as whole-grain cereals, fruits and vegetables.
  • Foods rich in vitamin C, such as oranges, grapefruit, strawberries, peppers, and cantaloupe; and of foods rich in vitamin A – carrots, sweet potatoes, peaches, apricots, and dark green leafy vegetables such as spinach. (Do not use a vitamin A supplement exclusively, because of possible toxicity.)
  • Cruciferous vegetables (so called because their flowers form the pattern of a cross)-broccoli, cabbage, brussels sprouts, kohlrabi and cauliflower.

Choose foods rich in healthy omega-3 fatty acids including cold-water fish such as salmon; walnuts and walnut oils; and omega-9 fatty acids that can be found in olive oil, almonds and avocados..When using oils, choose unsaturated ones like canola, flax, walnut and olive oils.

Reduce consumption of:

  • High-fat foods, including whole-milk cheese, lard, fatty cuts of beef, eggs and deep-fried foods. (Infants under one year should be kept on a higher-fat diet to meet their calorie needs.)
  • Avoid salt-cured, salt-pickled and smoked foods. (These carry a danger that carcinogenic chemicals will form during cooking or digestion.)

The causes of cancer are complex; therefore, nothing can guarantee that you will never get it. However, individually we have some power of prevention over many cancers. By adhering to guidelines such as the nine listed below, your personal liability to cancer can be reduced.

  1. If you smoke or chew tobacco, quit. Many smokers who conquer the habit do so on their own. Group therapy programs, nicotine replacement therapy and hypnosis are helpful to some.

  2. Adjust your diet. While some foods increase the risk of cancer, other kinds apparently act as anticarcinogens, or cancer preventatives.

  3. Drink alcohol in moderation, or don’t drink at all. One or two drinks a day should be the maximum.

  4. Avoid overexposure to direct sunlight. Use protective clothing and sunscreen preparations of SPF 20 or higher. Avoid the sun between 10 a.m. and 3 p.m., when ultraviolet rays are strongest. Even one or two bad cases of sunburn can be dangerous in the long term, particularly for children. For those who want a “bronze” tanned look, self tanning lotions may provide a safe alternative to sunbathing. Never use a tanning bed.

  5. Maintain a healthy body weight. If you are overweight, consult your physician about a plan for weight loss.

  6. Be physically active, and exercise regularly.

  7. Protect against sexually transmitted infections.

  8. Have dental and medical X-rays only as necessary. X-ray radiation doses are usually extremely low. However, before you agree to any X-ray, be satisfied that it is medically necessary or advisable.

  9. Use caution when handling any potentially harmful substance. Use protective clothing and safety equipment around industrial and home-use chemicals. Avoid breathing fumes from rubber and petroleum products, and dust from cotton and coal.

  10. Be alerted to involuntary risk factors. For example, women with a family history of breast cancer should remember they are at greater risk for cancer at that site. And men over 65 should be aware of their high risk, as a group, for prostate cancer.

  11. Have regular physical examinations and all recommended cancer checks and tests for your age group. Those aged 20 to 40 should have a cancer-related medical check-up every three years, and those over 40 should every year.

The Importance of Knowing Your Family Health History

According to a U.S. Department of Health and Human Services (HHS) survey, 96% of Americans believe that knowing their family health history is important. Yet only one-third of Americans have ever gathered their own family health history (also called family medical history).

 

Why a family health history is important

Your family tree is a visual representation of the members of your family and how they are related. Creating a family health history involves gathering health information for each person on your family tree to help your doctor assess if there are diseases that appear in multiple generations and how this may affect your risk.

Genetic research may someday make it possible to accurately predict a person’s risk for cancer; however, until then, a family’s health history may offer the best look into the future. That’s because your family health history often reflects more than your family’s shared genes, but also other shared risk factors, including environment, behavior, and culture.

For the families of people with cancer, knowing their family health history can be an important step toward cancer prevention or early detection. Ideally, it will also help lower the risk for cancer if it prompts individuals to change behaviors that have a negative impact on health, such as smoking. Similarly, it will prompt individuals to adopt healthier lifestyle habits, such as regularly exercising and eating a balanced diet. It’s important to note, although having a risk factor (anything that increases a person’s chance of developing a disease) for cancer does not guarantee that a person will develop cancer, it does mean that a person should be more aware of his or her risk.

 

Be open with your family

If you’ve been diagnosed with cancer, talking about your personal health history with family members is a way to help them understand the need for various screening tests, such as mammograms for breast cancer or colonoscopies for colorectal cancer, as well as other strategies for early diagnosis or prevention.

Share with your family specific information about your treatments, the medications you’re taking, the names and specialties of your doctors, and the names of the medical centers where you receive care. In the event of a medical emergency, this information may be crucial for the doctors who treat you. In the same way, learning about your relatives’ health conditions may yield some information that will help in your own medical care.

 

How to take a family health history

Whichever tool you use, the most useful family health histories are those that are as detailed and accurate as possible. And it’s not just parents and siblings whose health history is important to you. The health history of children, grandparents, aunts, uncles, nieces, and nephews are also important.

For families of people with cancer, a family health history typically covers:

  • At least three generations, as inheritance patterns for adult-onset cancer are more identifiable over time
  • Health information on maternal and paternal relatives, as hereditary cancer syndromes can be inherited from your mother or father
  • Race and ethnicity information for both sides of your family, as some cancer gene mutations (changes) occur more frequently in certain ethnic groups
  • Information about other medical conditions for each person, as even those conditions that seem unrelated may provide some information about cancer susceptibility or other potential health risks

For each person who has or had cancer, a personal health history should include the following information:

  • Date of birth
  • Date and cause of death (if applicable)
  • Type and location of each cancer (medical records, especially pathology reports, can be extremely helpful in determining the possibility of a hereditary cancer risk)
  • Age of diagnosis for each cancer
  • The facility where the cancer was diagnosed and treated
  • History of other medical problems
 

Incomplete or inaccessible family health histories

If you are not able to gather a complete family health history, for example, if you don’t know all of your blood relatives, or if they are unreachable or have passed away, you may be able to find additional details through state government offices or genealogy resources. For people who were adopted, the National Adoption Information Clearinghouse may be able to help access family medical information from birth parents.

 

Sharing your history

Once you have collected your family health history, it is important to share it with your doctors. They will use this information to assess your risk for various diseases. That, in turn, may help them make recommendations for screening tests to detect disease or lifestyle changes that might help prevent disease.

Share the health history with your children as well, as they can benefit from the information in the same way that you can. Also, share information about your own health and your children’s health with other relatives to help them maintain an accurate family health history of their own.

 

Genetic Testing

In addition to identifying possible lifestyle risk factors for disease, such as smoking or lack of exercise, the family health history may also be used to identify the potential need for genetic testing, which involves the analysis of human genetic make-up (DNA, RNA, chromosomes, and proteins) to predict the risk of disease, identify carriers of disease, and diagnose disease or determine the likely course of a disease.

At the most basic level, the factors suggesting inherited cancer risk include the following:

  • Multiple cancers in close relatives, particularly in multiple generations. Clustering of the same type of cancer in close relatives may indicate an inherited cancer risk.
  • Unusually early age of cancer onset (younger than 50 years for adult-onset cancers)
  • Multiple cancers in a single individual

A family health history that includes some of these risk factors may indicate an increased cancer risk for family members. The best way to use the information gathered is to take the information to your doctors and let them guide you in making decisions about screening and other ways to reduce your risk.

 

A word about perceived risk

As important as a family health history may be for early detection and treatment of cancer, it also may cause people to perceive their risk of developing cancer to be greater or less than their actual statistical risk; therefore, in all cases, it is important to discuss your individual level of risk with your doctor.

What is Hereditary Cancer?

Many people worry about being diagnosed with cancer, especially if close relatives have had cancer. Although most cancers are not hereditary, in some families a predisposition to cancer is passed down from one generation to the next. Cancer risk assessment can help identify families with true hereditary cancer risk.

 

What we can do for you:

  1. Provide information on cancer, genetics and inheritance as it applies to you and your family
  2. Record your family history and assess your hereditary cancer risk
  3. Discuss the benefits and limitations of genetic testing
  4. Coordinate appropriate genetic testing
  5. Assist with insurance coverage
  6. Interpret genetic testing results for you and your family
  7. Provide counseling and emotional support
  8. Discuss steps you can take to lower your cancer risk
  9. Provide written assessment to you and your physicians
 

Benefits of this Service

Knowing your risk allows for early detection and/or reduction of risk of developing cancer.

A better understanding of your cancer risk can provide relief from uncertainty and increased peace of mind. This life-saving service is a gift to your family.

 

What about cost and my insurance?

Many insurance companies will cover all or part of the cost of these services. Because each plan is different, we recommend that you check with your insurance company for specifics.

 

What about discrimination and confidentiality?

Experience to date has shown that there is little, if any risk of insurance discrimination associated with hereditary cancer assessment and testing.

Your privacy is very important to us and is protected throughout the process. Information will be released only with your consent.

 

Who should consider hereditary cancer assessment?

Anyone with a family history of cancer can benefit from hereditary cancer assessment.

High-risk family characteristics include:

Breast / Ovarian cancer: One family member with breast cancer at 40 or younger or:

Two family members with breast cancer at 50 or younger or:

Three or more relatives on the same side (mother’s or father’s) of the family with breast cancer at any age or:

Ovarian cancer, bilateral breast cancer, male breast cancer or Ashkenazi Jewish ancestry increase the family’s risk.

Colon / Uterine cancer: One family member with colon cancer or uterine cancer under age 50 or:

Two family members with colon cancer at any age.

Two family members with melanoma, or melanoma and cancer of the pancreas.

We also see families for other inherited cancer conditions.

 

For more information or to make an appointment, contact us at 949.218.2800

Genetic Testing

Genetic testing is the analysis of genes, chromosomes, and proteins. It is used to predict the risk of disease, identify carriers (individuals who do not have the disease but have a copy of the disease gene) of disease, diagnose disease, or determine the likely course of a disease. More than 900 genetic tests are available for many different diseases, including breast, ovarian, colon, and some rare cancers.

Genetic testing for cancer risk is predictive testing, which means a test can help predict the likelihood that an individual will develop cancer in his or her lifetime. No genetic test can report with 100% certainty that a person will develop cancer, but the tests can tell a person if he or she has a higher risk of developing cancer than the general population. Not everyone with a cancer-related gene will develop cancer. For example, a woman with a 75% chance of developing breast cancer may remain healthy, while a woman with a 25% chance of developing breast cancer may eventually develop cancer.

The following factors suggest that a person may be at risk for developing a hereditary cancer:

  • Family history of cancer: Three or more relatives on the same side of the family with the same or related forms of cancer
  • Early onset: Two or more relatives diagnosed with cancer at an early age
  • Multiple sites: Two or more cancers occurring in the same relative

ASCO recommends that genetic testing be offered in the following situations:

  • The person has an individual or family history that suggests a genetic cause of cancer
  • The test for the genetic condition can be adequately interpreted
  • The results of the genetic test will help with the diagnosis, treatment, and/or management of the patient and family members at risk for cancer

In addition, ASCO recommends counseling both before and after the genetic test. Learn more about ASCO’s Policy Issue on Genetic Testing for Cancer Susceptibility.

 

Reasons to consider genetic testing for cancer

Genetic testing can help a person (and in some cases, the family) understand the cause of cancer and the risk of developing cancer in the future or passing it on to children. Deciding to be tested is a personal decision that should be made in collaboration with your family and doctor. Someone may choose genetic testing for the following reasons:

To make a medical intervention. People at a higher risk for cancer may have the option of having more frequent cancer screenings, avoiding specific risk factors, making lifestyle changes to lessen additional risk, or taking preventive medication (chemoprevention), if available. In a few cases, people with a genetic predisposition to develop cancer may have the opportunity to reduce their risk. For example, women with either breast cancer susceptibility gene (BRCA1 or BRCA2) may reduce their risk of breast and ovarian cancer with a preventive salpingo-oophorectomy (removal of the fallopian tubes and ovaries).

To relieve anxiety. If a person has multiple family members who have cancer that can be traced to a genetic mutation, then a negative test result (meaning there is no mutation) may give this person a sense of relief.

 

Additional factors to consider

Genetic testing has limitations and psychological implications.

Testing may cause depression, anxiety, or guilt. If a person receives a positive test result (meaning a mutation exists), it may cause anxiety or depression about the possibility of developing cancer. Some people may start to think of themselves as sick, even if they never develop cancer. If a person does not have the mutation when other members of the family do, this individual may experience guilt.

Testing may cause family tension. In some situations, a person may feel a responsibility to tell extended family members that they have a positive test result and encourage them to be tested. This process may lead to tension in the family.

Testing may provide a false sense of security. Just because a person’s genetic test result is negative does not mean that person will never develop cancer. It only means his or her risk is equal to the risk of the general population of developing cancer.

Testing may provide unclear results. A person’s gene may have a unique mutation that is not known to affect cancer risk. Or, the gene may have a mutation that is not detected by the available test. In either case, it may be impossible to calculate the risk of the mutation as it relates to cancer, which may lead to anxiety and uncertainty.

Testing is costly Genetic testing and counseling can be expensive, especially if it is not covered by insurance. Some people pay for testing “out of pocket” because they do not want their insurance providers to know that they have been tested.

Testing may cause confidentiality concerns. Results of genetic tests may be placed in a person’s medical record, where there is a chance that this information could be passed on to insurance companies or employers. Some people fear that their test results may lead to genetic discrimination. Many people who undergo genetic testing are concerned about maintaining the privacy of their genetic information. They may be unsure if they want to share test results with immediate relatives and are concerned about employment and health insurance discrimination, which could result in the loss of a job and/or insurance coverage. Consider discussing privacy concerns with a genetic counselor or doctor.

 

Questions to ask yourself about genetic testing

Before being tested, be sure you have a complete understanding of the risks of testing and your reasons for wanting a test. It is also helpful to think about how you will cope with the results of the test. The following are some factors to consider in your decision making.

  • Do I have a family history of cancer, or have I developed cancer at an earlier-than-average age?
  • How will I interpret the results of genetic testing? Who will assist me in using this information?
  • Will knowing the test results affect my medical care or the medical care of my family?
  • If a genetic condition is detected, are there steps I can take to lower my risk?

A genetic counselor can help address these issues. Genetic counselors are professionals specially trained to advise people about the risks and benefits of genetic testing and can help people through the process of testing and interpreting the results.

Genetic Counseling

Genetic counseling is a process where a trained genetic counselor helps a person or family at risk for a disease with a genetic cause, such as cancer, understand the medical facts and available screening, prevention, and treatment options. The genetic counselor asks about your medical history and your family’s medical history and provides you with information about your cancer risk based on this information. In addition, the genetics counselor can review your options for genetic testing and cancer screening.

 

The role of the genetic counselor

A genetic counselor is a health professional with specialized training in medical genetics and counseling. Most genetic counselors have a Master’s degree in genetic counseling, although others have degrees in related fields, such as nursing or social work. Genetic counselors are certified through the American Board of Genetic Counseling. Like other health professionals, genetic counselors must participate in continuing education to maintain their certification.

Genetic counselors are trained to evaluate the likelihood of a hereditary cancer risk in your family and give you and your family information about genetic testing and other cancer screening options. They will help you come to a decision about genetic testing and serve as a resource for you and your family in the future. Genetic counselors may advise you about the following:

  • Diagnosis and treatment options, including the review of available options to identify early-stage cancer or reduce the risk of cancer through surveillance, screening, prevention, and treatment.
  • The limitations of the testing procedure, test accuracy, available screening, and preventive measures.
  • The privacy and confidentiality of your genetic information.
  • The emotional, psychological, and social consequences of knowing the test results.
 

Preparing for a visit with the genetic counselor

The more information you have about the cancer history in your family, the more you will benefit from your genetic counseling visit. Information that is helpful and may be requested by the counseling center includes:

  • Your medical records—specifically doctors’ notes and pathology reports from any biopsies, surgery, or routine screening examinations (such as a colonoscopy).
  • A list of extended family members that includes their current age or age at the time of death and the cause of death. This list should include parents, siblings, children, aunts, uncles, nieces, nephews, grandparents, and cousins.
  • Information regarding the specific type(s) of cancer in family members and the age at which family members were diagnosed with cancer. Pathology reports are often helpful.
 

Understanding what happens during the appointment

Consider taking a companion with you to your appointment. This may or may not be a family member, depending on your preference. A large amount of information will be covered, and it is always a good idea to have another person there to hear the information and think of questions. If you choose to bring a family member, he/she may also be able to provide additional information about your family history. You can expect the following topics to be covered:

  • Your personal medical history and cancer screening history.
  • Your family history of cancer. (The counselor will draw your pedigree [family tree] including at least three generations, and document who has had cancer, what type of cancer they had, and their age at diagnosis).
  • The possibility of a hereditary cancer risk in your family. (Depending on your family history, your counselor may be able to use computerized risk assessment tools to help estimate your risk of having a hereditary predisposition to cancer).
  • The benefits and limitations of genetic testing for your family.
  • A strategy for genetic testing that best meets your needs.
  • Current laws regarding the privacy of genetic information.
 

After Your Visit

Your genetic counselor will write a summary of your visit. Typically, a copy of this summary will go to you and the doctor who referred you to the genetic counselor. Your genetic counselor may provide you with additional written information relevant to your family history. In some cases, you or other family members may qualify for research or screening studies, and your genetic counselor can provide you with that information and help make the necessary arrangements.

If you decide to pursue genetic testing, your genetic counselor will work with the testing laboratory to determine if test costs are covered by your insurance. Your counselor can help coordinate testing and review your test results with you when they are available. Your counselor will continue to be a resource for you and your family after your visit. It is important to call your counselor if you have any questions or if there are changes to the cancer history in your family.

Cancer Risk Factors

According to the National Cancer Institute, a risk factor is anything that raises or lowers a person’s chance of developing a disease. Although doctors can seldom explain why one person develops the disease and another does not, researchers have identified specific factors that increase a person’s chances of developing certain types of cancers.

Some cancer risk factors can be avoided. Others, such as inherited risk factors, are unavoidable, but it is a good idea to be aware of them.

Remember, many people who develop cancer have none of the known risk factors, and most people who do have risk factors do not get the disease. So, it is important to talk with your doctor about regular checkups and about what screening tests are right for you.

FAQs

Cancer is a group of more than 100 different diseases characterized by the uncontrolled, abnormal growth of cells. These cells form a lump or mass called a tumor. Some cancers, however, such as blood cancers, do not form tumors. Tumors can be benign (noncancerous) or malignant (cancerous). Benign tumors may grow, but they do not spread to other parts of the body and are usually not life threatening. Malignant tumors grow and invade other tissues in the body.

 

Sometimes cancer will spread to the lymph nodes. Lymph nodes are tiny, bean-shaped structures that filter the flow of lymph, the clear fluid that plays a role in the body’s immune system. Lymph nodes are located in clusters in different parts of the body, such as the neck, groin area, and under the arms. Cells from malignant tumors can also break away and travel to other parts of the body, where they can continue to grow. This process is called metastasis. Metastatic cancer is named for the part of the body where it started. For example, if breast cancer spreads to the lungs, it is called metastatic breast cancer, not lung cancer.

 

Cancer can begin almost anywhere in the body. Tumors are named for the type of cell where the cancer started. For example, carcinomas begin in the skin or tissue that covers the surface of internal organs and glands. Sarcomas begin in the connective tissue, such as muscle, fat, cartilage, or bone.

Hippocrates, the ancient Greek physician, is credited with being the first to recognize the difference between benign and malignant tumors. The invasion of tumors so reminded him of crab claws that he called the disease karkinos, the Greek name for crab. In English this term survives as carcinoma. The English language also adopted the word cancer, which is the Latin word for crab.

A single cancerous cell eventually becomes a microscopic collection of cells and ultimately begins to invade surrounding tissue.

 

Each cancer runs its own distinctive course. In leukemia, the abnormal cells disperse throughout the body in the blood and bone marrow. With most cancers, a mass of cancer cells called a tumor begins to grow.

 

Some tumors (particularly in children and young adults) may double their size in a month. Colon and lung tumors may require two months to double, and some cancers take a year or more.

 

Most tumors are diagnosed when they are well advanced, with a mass of ten grams (approximately one-third of an ounce,) or more than one billion cancer cells.

 

These cells may invade tissues and spread throughout the body through the blood and lymph systems. A total body tumor burden of more than one kilogram (approximately two pounds) is usually not compatible with human life.

There are two broad categories of tumors: Benign and Malignant.

 

Benign tumors remain localized to the tissue in which they arise; they may grow large but will not spread to other parts of the body. If they grow into openings such as the trachea (wind pipe) or a major blood vessel, they can be fatal. But if found early, they can be cured by surgical removal, or in some cases by radiation therapy.

 

Malignant (“cancerous”) tumors are a more serious matter. Some of their cells might break off, invading and destroying surrounding tissue or traveling through the blood or lymph streams to distant parts of the body, where new tumors might form. From these new tumors, malignant cells could break off again and establish even more colonies.

 

This process of invasion and spread is called “metastasis.” Common sites for metastases, or secondary tumors, include the lymph glands, bones, lungs, liver and brain.

The body has its own defense mechanisms against tumor cells including processes to repair mutations of DNA, and certain cells and substances of the immune system which can destroy cancer cells. A diagnosis of cancer means that these “natural” defenses are no longer effective against the cancer.

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