Genetic Testing for Cancer
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Comment| Wednesday, October 8th, 2008 | | CWK Producer |
“I want to know in order to take precautions, to make sure that I’m going to be okay.”
– Molly, Age 14
The lump was small but hard as a rock. And it was inside Joanie Shubin’s breast.
“I’m a pretty strong person,” she says. “I was surprised at how, when I was told I had cancer, it’s like, the whole world comes crushing down on you.”
After a double mastectomy and chemotherapy, Joanie’s doctors say she should be alright. What caused her cancer is unknown but one cause of breast cancer is a genetic mutation. If Shubin has it, there’s a fifty-fifty chance she has passed it on to her 14-year-old daughter Molly.
“And I want to know,” Molly says, “in order to take precautions, to make sure that I’m going to be okay.”
It’s a tough decision to undergo genetic testing because of what it could mean to Joanie’s daughter.
“We don’t want the worst case scenario,” says genetic counselor Angela Trepanier, “a child who feels overwhelmed by the information, and unwilling to go on with plans that they had prior to testing, because of their fear of developing cancer in the future.”
Joanie Shubin will be tested in two weeks. Molly says she’s ready for the results, whatever they are.
“Some people describe it as sort of a shadow,” Trepanier says, “a ticking time bomb, something that’s always in the back of their mind. Every day that information is going to be present - the possibility that they could develop cancer.”
Genetic testing can show us our future. Or at least a possible future. But only if we are willing to look.
“You can handle whatever is dealt you,” Shubin says. “But it’s better to know what you’re dealing with than the unknown.”
“And I hope in my lifetime,” Molly says, “before that will happen, they will hopefully have a cure for it.”
Tips for Parents
Simply put, genetic testing may give a woman (or man) more information about the likelihood of developing cancer, but there is nothing simple about the decision to be tested. What is genetic testing? The National Cancer Institute (NCI) calls it “a process in which it is possible to look for genetic alterations that may be associated with an increased risk of particular cancers. Genetic testing may reveal whether the cancer risk in a family is passed through their genes.”
The lab test itself is quite complex, but only a blood sample is needed. The NCI cautions, however, that testing for breast cancer risk will not give a simple “yes” or “no” answer. Finding an altered gene indicates an increased risk of getting cancer, but it will not indicate if or when cancer will develop.
The vast majority of those tested for mutations in genes associated with breast cancer (known as BRCA1 and BRCA2) are women. The Health Technology Advisory Committee lists the following reasons women choose to be tested, in order of importance:
- To learn children’s risk
- To know if more frequent screening is necessary
- To plan for the future
- To make decisions about surgery
- To be reassured
- To make childbearing decisions
As for the advantages of genetic testing, the National Cancer Institute says testing may help you:
- Make medical and lifestyle choices
- Find out you do not have an altered gene
- Cope with your cancer risk
- Decide whether or not to have prophylactic surgery
- Give other family members useful information
- Contribute to research
The disadvantages?;
- There is no proven way to reduce the cancer risk
- There is no guarantee the test results will remain private
- You may face discrimination for health insurance, life insurance, or employment
- You may find it harder to cope with your cancer risk when you know your test results
- Negative test results may provide a false sense of security because you think you have no chance of getting cancer, which is not true. You would still have the same risk as women in the general population.
Genetic testing can affect relationships with family members. The NCI says it is up to you to decide who in your family might want to know your test results, and whom you might want to tell. The American Cancer Society has this advice for those who are thinking about being tested:
“Any person considering genetic testing should talk with a genetic counselor, nurse or doctor qualified to interpret and explain (the) test results, before they proceed with testing. It is very important for people to understand and carefully weigh the benefits and risks of genetic testing before these tests are done.”
Questions to think about and discuss with your family:
- What effect will the test results have on me and on my relationships with my family members if I have an altered gene? If I don’t have an altered gene?
- Should I share my test results with my partner? Parents? Children? Friends? Others? How will they react to the news, which also affects them?
- Are my children ready to learn new information that may one day affect their own health?
References
- National Cancer Institute
- American Cancer Society
- Health Technology Advisory Committee
