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Inherited Colorectal Cancer Program

Inherited Colorectal Cancer Program

Inherited Colorectal Cancer Program - UCLA Colorectal Cancer Treatment Program.Up to 10 percent of patients with colorectal cancer have a mutation which is inherited. The two most common syndromes include Hereditary Nonpolyposis Colon Cancer (HNPCC) and Familial Adenomatous Polyposis (FAP). Individuals with HNPCC develop a variety of cancers, most commonly in the colon and rectum, but also in the uterus (endometrium), ovaries, small intestine, liver, bile duct, urinary tract, and kidneys. Individuals with FAP develop multiple colon 'polyps' that progress to cancer if the colon is not removed. There are other less common gene mutations that can also cause an increased risk for colon cancer. Familial colon cancer is a term used for families who do not have a known inherited colorectal cancer syndrome, but who have multiple family members with colorectal cancer.

To determine if you have one of these syndromes, genetic counseling/testing can be performed. These testing results and family histories can alter treatment and future management. If a mutation is identified, genetic testing or early cancer screening can be offered to at-risk family members.

Because these inherited syndromes can affect multiple organ systems, it is important to have the involvement of a multidisciplinary team of experts.  For further questions about the clinical genetics program, call (310) 267-2709.

 

Who should be referred for genetic testing? 

  • Colorectal cancer diagnosed prior to age 50.
  • Two or more separate colorectal and/or other cancers at any age.
  • Colorectal cancer with abnormal tumor markers (MSI/IHC).
  • Personal history of colorectal cancer and two or more first or second degree relatives with colorectal cancer.
  • History of >10 adenomas (colon polyps).
  • Family history of inherited colorectal cancer syndrome such as HNPCC or FAP or a close relative meeting any of the above criteria.

 

Are you a young (age <50) colorectal cancer patient?

The incidence of colorectal cancer in young patients (age<50) is increasing, although the reasons are unclear. Our program takes a multidisciplinary approach to treating and managing young patients with colorectal cancer. We work with many specialized groups to meet the unique needs of our young patients including a young cancer support group, fertility specialist and nutrition. Early onset colon cancer is associated with inherited/genetic factors. Current guidelines recommend a genetic consultation to review family history and testing recommendations. We also have a strong interest in clinical and translational research to better understand the disease process and potentially determine markers for earlier detection and more effective cancer treatments.

 

Inherited Colorectal Cancer Registry (coming soon)

Our mission is to provide education and support to patients and family members with familial colorectal cancer or inherited colorectal cancer syndromes such as Familial Adenomatous Polyposis (FAP) or Hereditary Nonpolyposis Colon Cancer (HNPCC). Our goal is to prevent colorectal cancer through early diagnosis and treatment. The Registry offers opportunities to participate in clinically relevant research on inherited colorectal cancer syndromes. 

 

Genetic Testing FAQs

The Top FAQs about Genetic Testing for Inherited Colorectal Cancers

Why should I get genetic counseling?

  • To understand the risk of cancer for themselves, their children, or other family members
  • To discover if inheritance (or genetics) played a role in the development of their cancer or a family member's cancer
  • To get information about recommended cancer screening tests and to make decisions about preventive surgeries

What to expect at your genetics consultation?

The cancer genetics program is staffed by a board-certified genetic counselor and a medical oncologist. Prior to the appointment, we send a questionnaire so that you are able to gather a family and medical history. At the consultation, we estimate your risks for specific cancers based on your age, family history and other risk factors. We evaluate your family history by constructing a family tree (pedigree) and determine which genetic test, if any, would be most appropriate for you and your family. We discuss the benefits, limitations, and risks of genetic testing. We discuss screening and risk-reduction guidelines. The decision to do genetic testing is always a personal choice.

Follow-up genetic counseling is provided to discuss the meaning of the results for you and your family members. We also discuss your options and recommendations for future cancer detection and risk reduction options based on your test results as well as appropriate referrals to our multidisciplinary team who are experienced in managing and treating high-risk patients. We are available for additional support and can make referrals specific to a patient's needs.

I'm not sure I want genetic testing, so why should I come for genetic counseling?

If you're not sure you want genetic testing because of unanswered questions, a genetic counseling appointment is the perfect opportunity to have your questions answered. Genetic testing is just one part of the genetic counseling evaluation. At your appointment, we will review your risk for cancer based on your personal and family history. We may find that your risk is higher or lower than you thought. Cancer screening recommendations can be made without the use of genetic testing, but in most instances genetic testing can be helpful. You will also be able to share this information with family members so that they may seek appropriate cancer risk management.

What does genetic testing involve?

A genetic test almost always involves taking a blood sample, but can sometimes be performed using a saliva (spit) sample. The sample is sent to an outside facility for testing. The results are usually available between 2-4 weeks. The results are sent to the genetic counselor who then discusses the results with you. We make sure you meet appropriate criteria for the genetic testing and help to coordinate any insurance or payment issues.

Why do I need a cancer genetic counselor? Can't I just have genetic testing without counseling?

The cancer genetic counseling and testing process can be quite complex. Considerable time is spent taking an accurate family and medical history which can dictate which tests are ordered and how to provide recommendations when genetic testing is not informative. Due to the complexities of this process and the risk of misinterpretation of test results, it is recommended that individuals interested in pursuing cancer genetic testing see a cancer genetic specialist.

What about insurance discrimination and confidentiality?

There are laws in California and at the federal level preventing health insurance companies from using genetic test results to discriminate against individuals. This means that a health insurance company cannot raise your rates, drop your coverage or deny you coverage based on the results of genetic testing. The Genetic Insurance Non-discrimination Act (GINA), passed in 2008, prevents health insurers from denying coverage or adjusting premiums on the basis of genetic information.

How can I schedule a genetic counseling appointment? 

To schedule a genetic counseling appointment, call (310) 267-2709. If you have questions that need answered prior to scheduling an appointment, you can let our program assistant know and a genetic counselor will contact you.

 


Upcoming Event

Dr. Heny Lynch, will discuss the latest information on Hereditary Non-Polyposis Colorectal Cancer (HNPCC).The UCLA Colorectal Cancer Treatment Program is excited to announce a special educational event with Dr. Henry Lynch.  Dr. Lynch will discuss the latest information on Hereditary Non-Polyposis Colorectal Cancer (HNPCC) and how to identify and manage these high risk families.  Lynch syndrome/HNPCC is the most common inherited colon cancer.

Individuals with this diagnosis have a significantly higher chance of developing cancers: particularly colorectal, uterine, ovarian, kidney and other gastrointestinal tumors.  These cancers often occur at a younger age (<50) and are more aggressive than cancer in the general population.  Identifying these families can lead to early detection and/or prevention of these associated cancers.  This event is open to UCLA surgeons, oncologists, gastroenterologists and geneticists who are involved in treating these patients and are interested in improving patient care. For information on this event please call (310) 267-2709.

 

 

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