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Does Breast Cancer Run in Your Family? Take a Genetic Test!

 

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Does Breast Cancer Run in Your Family? Take a Genetic Test!

October is Breast Cancer Awareness month and I wanted to share my personal story with Mother & Child’s readers. My experience has added a lot of awareness to my life about breast cancer and I hope it gives you information you are searching for as well.

I’m sure most of you have been affected by breast cancer one way or the other. Whether directly or indirectly it seems like we always know someone who is fighting breast cancer. It’s either a sister, mother, aunt, relative or a friend.

My journey with breast cancer started a long time ago. It has affected many women in my family; grandmother, aunt, cousin and sister. Breast cancer you would say “runs in the family”. Which is a term we sometimes use loosely in Egypt.

If you have a history of breast cancer in your family, I’m sure you’ve wondered if you’re at risk. I certainly have. One year ago I decided to do a genetic test to establish if the risk of breast cancer really “run in the family” or not.

 

What is the genetic test called?

 

The test is called the BRCA gene test. It’s a simple test done with a blood sample and the lab tests your DNA  any mutations or harmful changes in either one of two genes which are susceptible to breast cancer, BRCA1 and BRCA2.

 

If there is a positive mutation, this means that women carrying the gene mutation are at a higher risk of developing breast cancer or/and ovarian cancer at a young age.

 

Who should do the test?

 

This test is administered to women who are likely to have an inherited mutation which is based on reviewing their personal or family history. Women who have a history of breast cancer or ovarian cancer in their family should consider doing the genetic test. Especially if the cancer was diagnosed at a young age meaning under 50 years old. Recurrence and young age are one of the main red flags for considering being high risk.

 

A common question is can I have the mutation if cancer is on my father’s side. Yes, males can be carriers of the gene mutation and have a 50% chance of passing it on to each of their children. Another concern once you know the results are what are the risks of passing it onto my children? The risk for each child is 50% meaning there is a 50-50 chance your child may or may not be passed a faulty gene. In some parts of the world there have been procedures developed to identify the gene mutation to fertilized eggs for IVF and eliminating their use. This may not be the choice for you for personal reasons but know that this medical option does exist.

 

Are there any risks in doing the test?

 

The test is done simply from a blood sample. There are no medical risks or physical concerns with taking the test. The concern is more related to dealing with the emotional implications of the results. Knowing one is positive for a gene mutation, as I am, can definitely cause some stress and concern on what to do next and ways to address prevention. Testing negative for the gene mutation may also trigger feelings of survivor’s guilt. While you’re happy you are not at high risk what about those in the family who still are. I would recommend considering counseling if you are having trouble dealing with your results. I have certainly found it helpful in helping us as a family decide on when to do the test and also after the results came out.

 

The test can also be expensive so depending on your options it may also need to be considered from a financial perspective. There may also be medical consequences depending on what course of preventive measures your doctor discusses with you based on the results.

 

What do the results mean?

 

For those who test negative for a BRCA mutation, it means their risk is like the normal population: about 13% risk of getting breast cancer and 1% for ovarian cancer.

 

If you test positive for the BRCA mutation it may mean different things. There are two types of BRCA genes; BRCA1 and BRCA2. Testing positive for either means you are at high risk for either breast cancer or ovarian cancer or both. The risk can be up to an 80% risk of getting breast cancer. Meaning you would have a 20% chance of not getting breast cancer. And up to 60% risk of getting ovarian cancer.

Clearly the gene mutation plays a significant role in the increased risk which is why knowing your gene mutation status can be extremely important in helping you decide what kind of preventive care you want.

Details of your results are always better discussed with your doctor. Here is a link for further reading at Mayo Clinic.

 

Preparing yourself before the test

 

Taking the test is no easy task for some. As I mentioned some counseling can help a lot in deciding what to do and when. Depending on your needs you can feel it’s better to discuss this with your family or keep it to yourself. My advice is to have a solid form of support even if it’s just one person who understands how you feel and can offer support on this issue.

 

It’s a good idea to take a close friend or family member with you for support and to ask questions you might not think of. Also write down your questions before your visit so you have a list to refer to. Make sure to gather as much family medical history as possible. The more complete your family medical history is the better for your doctor to have a complete picture.

 

If you do decide to go through with the test make sure you are prepared for the emotional and social implications of knowing your genetic status. From my personal experience not everyone might understand your choices. Remember that’s OK you are doing this for yourself and your own life. You know best what you need.

 

 

What happens after the results?

 

If you have a positive result: it means that you have a harmful mutation in one of the BRCA1 or BRCA2 breast cancer genes. Which in turn means a higher risk of developing breast cancer or ovarian cancer. However, a positive result doesn’t mean that you will ultimately develop cancer. There are several preventive procedures that you can do to minimize your risk

 

  • Dietary changes such as eliminating dairy or sugar can be helpful in reducing risk
  • Self breast exams, semi annual mammograms and MRIs
  • Surveillance for ovarian cancer by having semi annual pelvic exams, transvaginal ultrasound imaging and blood tests to measure your cancer antigen 125 levels.
  • Oral contraceptives have been shown to reduce ovarian cancer risk in BRCA mutation carriers. Keep in mind that using oral contraceptives for more than 5 years may slightly increase your risk of breast cancer slightly so discuss these options with your doctor.
  • Hormonal medication is available to reduce risk
  • Undergoing preventive surgery such as preventive (prophylactic) mastectomy which involves surgical removal of healthy breast tissue. This procedure reduces breast cancer risk by almost 90 percent. Another option is removal of healthy fallopian tubes and ovaries. This procedure can help reduce breast cancer risk by 50 percent and 90 percent for ovarian cancer.

 

Why is this different from those who are negative?

 

Those who test negative for the gene mutation have a normal population risk. The medical recommendation for them is annual screenings starting 50 years old. For BRCA positive women it is biannual screenings from when they are 25. The normal population is at risk for cancer in their 60s and over. Those with the BRCA positive gene are at risk starting their 30s. For women in the normal population they may develop different types of breast or ovarian cancer and as a result different forms of treatment, those with the gene mutation are more likely to develop a more aggressive cancer and the worldwide protocol today is extensive chemo and preventive surgery once cancer is detected.

 

As you can see the preventing and treatment can differ dramatically whether you carry the gene mutation or not. This is why it is extremely important to know your status.

 

An Opinion

 

I have personally benefited from doing my genetic test. I tested positive for BRCA1 gene mutation which means I have a risk of 80% for breast cancer and 60% for ovarian cancer. This has helped us make decisions as a family in terms of having children and deciding on preventive care. Dealing with the results hasn’t been easy. It can be scary sometimes thinking of my chances but I am committed to my screenings and tests and dietary changes. At some point we will need to decide whether to go forward with  preventive surgery.

I’m sharing my personal side because I want you to know life goes on after you test positive for the gene mutation. I have definitely needed and benefited from counseling in this challenging time but life moves on. We are lucky to live in a time where medical advancements are so quick and there are several options.

 

The test is available in Egypt, although there is a lot of misconception about it. I would recommend you consider the gene test if you have a family history of breast or ovarian cancer, and wish you all the best.

 

Resources and further reading

https://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

http://www.breastcancer.org/symptoms/testing/genetic/pos_results

 

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Jailan Heidar

Jailan Heidar is an Egyptian parent educator currently living in The Netherlands. She has a MSc. in Child and Family Studies from Leiden University. She specializes in providing parenting support to parents of children from 0-5 years through her website EarlyYearsParenting.

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