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When Thinking About Genetic Testing for Cancer Risk, Ten Things to Consider

Since Angelina Jolie announced to the world she had undergone a bilateral prophylactic mastectomy, it seems like hereditary breast and ovarian cancers have been in the news more. A celebrity spin on any topic generates buzz on a whole new level. In this case, it’s mostly a good thing, and again, I applaud Ms. Jolie for coming forward.

I shared my thoughts about her decision here – it was my most read-on-the first-day-published post ever. Go figure. While all this attention to a topic I care about deeply is a wonderful thing, it can also potentially give the wrong impression about genetic risk for the general population.

It’s important to remember that most breast cancers are not hereditary; in fact, statistics say less than 10% are. Most are sporadic which means there’s no family history. Some are also considered familial, meaning there is a family history but no known hereditary mutation to pinpoint.

If you are one of those people in a family where there does appear to be hereditary cancer risk factors at play, it can feel frightening, unsettling and quite overwhelming.

You might assume the decision to go ahead and have genetic testing done is an easy one for a person to arrive at. This is not necessarily the case, at least it wasn’t for me, and I don’t think I’m alone. As usual, everyone feels differently about this depending upon their individual life experiences, values and beliefs – not to mention insurance coverage.

I remember very well the day my mother called me announcing she had made an appointment to meet with a genetic counselor asking me to go along. I was not happy she had made such an appointment without consulting me first, but of course I did agree to go and in the long run, it was a smart decision on her part.

After her results came back, (btw, this was two years after her breast cancer diagnosis – my family history is complicated). I wasn’t yet ready to be tested myself. I’m a slow processor, and yes, I realize this trait of mine hasn’t always worked out well for me. I am the poster woman for waiting too long while thinking things through.

I was in the thinking about getting tested phase, when the shit hit the fan. My cancer diagnosis sped a lot of things up for me, including genetic testing.

As a mother and now someone who’s had a cancer diagnosis, my opinions on genetic testing have certainly evolved. I am in favor of genetic testing when appropriate, but I also respect a person’s right to not pursue it. I remind myself of this when discussing such matters with my own kids, who now must face making these decisions. I voice my opinions, but try not to push too hard.

If you are contemplating genetic testing to help determine your hereditary risk for breast and ovarian cancers, here are some things to consider:

  1. Discuss your family history carefully and thoroughly with your primary care physician. He or she should be able to help determine if there are indeed sufficient red flags waving around in your family tree to warrant testing.

  2. If it seems there are too many red flags, or if you’re just not satisfied, see a genetic counselor to talk further about your concerns. Remember just because you talk with a genetic counselor, it doesn’t mean you must go ahead and be tested. Any counselor of worthy ethics will make recommendations, but shouldn’t be pushy.

  3. Before going to see your genetic counselor, do some digging and bring whatever you can uncover (medically speaking) about your family tree. Sometimes they send you forms to fill out before your appointment. And be sure to delve into both sides of your family tree as both sides matter equally. The more relevant info you can uncover, the better. Genetic counselors love talking about your relatives!

  4. Don’t worry about discrimination if you do test positive. (Whew…there’s one worry to cross off your list). It is illegal now (in the US) for insurance companies to drop policy holders from medical plans based on genetic test results. However, life insurance is another matter. Therefore, it’s imperative to do a bit of investigating before moving forward with testing.

  5. Ask yourself if you truly want to know information that genetic testing may or may not reveal. Remember, if you go looking for answers, you might find them. Can you handle the truth?

  6. Next, ask yourself what you will do with the information. Will you make life style changes? Will you consider prophylactic surgeries? Will you start a medication for prevention purposes? Will you be diligent about surveillance? Will you worry yourself (or your loved ones) beyond what’s reasonably acceptable? Will you do nothing?

  7. Check out resources that are available to help you such as Facing Our Risk of Cancer Empowered, so you can make an informed decision about testing. The goal is to feel empowered, not guilty or under duress.

  8. Remember testing positive doesn’t mean you definitely will get cancer and testing negative doesn’t mean you definitely won’t.

  9. Without testing results, insurance might not approve closer surveillance. (Of course, not everyone has insurance, but that’s a separate topic).

  10. Finally, think things through. Take the time YOU need and don’t feel pressured or hurried. A person’s mind does need to be in a place of readiness.

As with so many things in life, especially medical stuff, the decision to undergo genetic testing is yours and yours alone to make.

Update:  Direct to consumer genetic testing is now an option too. If you do choose this path, proceed with caution. You might want to read this post:  FDA Will Allow 23andMe to Offer DTC Test for Three BRCA Gene Mutations – Good or Bad Idea?

Note:  Discrimination based on genetic test results is illegal since passing of The Genetic Information Non-discrimination Act.

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Have you had (or have you ever considered having) genetic testing, and if so, what prompted you?

For those who are wondering about where to start, do you have any tips to share about any part of the process?

Despite potential hereditary risk, have you decided not to undergo genetic testing?

 

10 things to consider when thinking about genetic testing

 

 

 

 

 

 

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mary connolly

Saturday 3rd of October 2015

genetic testing, is a good thing. Any family hx. eg. great grandmother, mother, father prostrate, much higher rate of a bad thing. My dx. was in 1994, not available at that time in Mt. So when I finished, mascetomy, triple killer chemo available then, I went to Denver, and tested positive genetic results. Nice know it is available all over, the world!!!!

Nancy

Monday 5th of October 2015

Mary, It is a good thing that genetic testing is becoming more available. A very good thing.

Alkmini

Tuesday 3rd of December 2013

I have a history family of breast cancer going at least two generations back. How can somenone consider not testing? Why not try to do something before it is too late? Testing sooner rather than later can save lives, any other decision does not make sense. I know a family that tested at the same center with me, the mother had breast cancer but her three daughters didn't want to test or they just postponed it. At the end, it was too late for the oldest daughter, which died of breast cancer at a relatively young age. Me and all my family have tested not because we had too but because they were able to explain to us the importance of it. I can understand the personal choice but only after being sure that the person knows exactly what he is doing and what he is giving up.

Nancy

Wednesday 4th of December 2013

Alkmini, While a different decision than yours might seem unfathomable to you, it might be someone else's choice. All of these decisions are huge and very personal. I'm glad you've taken steps that feel right for you. Thanks for sharing your thoughts on this important topic.

Jennifer

Tuesday 22nd of October 2013

Nancy, Could you please modify your comments above slightly with regards to insurance companies dropping you. GINA does NOT prevent insurers from dropping your LIFE insurance. It prevents them from dropping your HEALTH insurance or charging you a higher premium. For women who are the sole fincial support to the family, this is a very serious matter to be aware of prior to testing.

Nancy

Tuesday 22nd of October 2013

Jennifer, Done. Thank you for reminding me of this. And you're right, it is a serious matter.

Regina

Tuesday 24th of September 2013

I have a question that maybe someone knows for sure -- my mom has had both breast and ovarian cancer and she tested positive for the BRCA1 gene (her mother had breast cancer and my first cousin has had ovarian cancer with other cousins having some type of cancers). I am strongly considering having the gene test but the one thing that is holding me back is if I test positive would that affect my son in any way from getting medical/life insurance in the future?

Nancy

Wednesday 25th of September 2013

Regina, Thanks for posing the question. I believe it is illegal now to discriminate based on genetic testing as far as medical coverage goes, but I'm not sure the same can be said regarding life insurance. I don't know, but I'm sure you can find out by asking around. Good luck to you!

Beth Gainer

Thursday 1st of August 2013

Nancy,

I've fallen behind on my blog reading once again, so please forgive me! Anyway, I love this post. Getting genetic testing is no easy decision. After my initial diagnosis and treatment, I did get genetic testing after major meltdowns. In fact, I was scared out of my mind during it and when I got the results, which were negative for the mutation. Thank you for addressing the fact that breast cancer isn't always due to the genetic mutation. Mine wasn't. My family history: dying of old age.

Thank you for an enlightening post, Nancy.

Nancy

Friday 2nd of August 2013

Beth, Who isn't behind? Thank you for reading when you can. Your support means so much. And yes, genetic testing is very stressful no matter what the outcome. Thanks for sharing.

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