To Test or Not To Test....

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squidgee
squidgee Member Posts: 11
edited June 2014 in High Risk for Breast Cancer

The last few months have had me in a tizzy - wondering what's going on with my body, how much waiting a person can actually do before they start to lose their mind, and adding on the genetic discussions at the local familial oncology program. 

I talked with the director of the program yesterday - an oncologist who has turned from TREATING cancer patients to working with families to prevent cancer. My biological family history is riddled with young cases of breast cancer - including my birth mom who had bilateral breast cancer at 42 and died from cancer reappearing in the liver by 50.  

My birth mom had the gene testing in 2005 and it came back "inconclusive" which leaves me and my 2 half-sisters at a semi-loss. Talking to the genetics team, it sounds like we are at a fairly high risk of it appearing in our lifetimes - something like 3in10 instead of the 1in9 the average person gets.

They've recommended we get my birth mom's DNA retested for the gene. They highly highly recommend it. But.... a big part of me is wondering. Ok - so let's say they DO come back with positive results. What does that mean for me? Do I WANT to get tested? Do I WANT to know that kind of information? I just don't know - and I struggle. The idea of taking "proactive" actions like masectomies or ovary removal... just seems so... unreal to me. Is it better just to live my life and what happens happens?

 I'm not sure. But today, I'm struggling with it.

I picked up a book at the library called "Pretty Is What Changes" by Jessica Queller.  It follows the story of a woman my age (early-mid 30s), as she struggles with this topic after she discovers she has the gene mutation. It's got me really thinking. And I'm not even sure this is a topic I WANT to think about. 

Anyway, just rambling a little because I'm not sure my DH can fully understand or appreciate the mental state I'm in about breast cancer, genetics and all the stress I'm trying to avoid while waiting for the results of my biopsy.

Thanks for listening.  

Lisa Marie (almost 33yrs old, mother of 3 little boys, who thinks too much) 

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Comments

  • ElaineD
    ElaineD Member Posts: 2,265
    edited February 2010

    If you are undecided+/or have doubts, don't do it! There are pros and cons to both having the test, and not. But-if you do have the test, and get a positive result, it's not something that you will then be able to forget about. So you have to be completely convinced before setting this into motion.

    Most genetic cancers, however tend to strike (on average-this is not written in stone!) about 10 years earlier than the previous onset. So it could be wise to make a decision one way or another quite soon.

    Good luck-it's a very hard decision to make-but keep in mind, even if your family did have the genetic misprint, it's by no means a certainty that you would have it. I'm BRCA2-and exactly 50% of the family who have been tested so far are also positive-but 50% are negative, of course!

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  • sejnboys
    sejnboys Member Posts: 36
    edited February 2010

    Hi Lisa Marie....I can understand what you are going through.  This came up for me last February, before my bc dx.  A new gyn suggested I get tested upon hearing my family history(mostly ovarian)...no one had ever mentioned it before.  That same month, the local university hosted a screening of a documentary that had been on PBS....a young woman's journey through the BRCA testing, and beyond.  Wow...what a movie. I'd VERY highly recommend it (it's called In The Family by Joanna Rudnick) for anyone considering being tested as she really touches on the many different emotional struggles and aspects that go along with testing, things I'd not thought of.  It also interviews women who've decided both ways and how it had affected their lives.  It gave me an entirely new, broader perspective when considering testing.  And I had actually decided not to test at least for the time being....then I got my diagnosis in October, and then it was a no-brainer. But because I'd really been through the process in my mind and heart after seeing her film, I was very ready to make that decision to get tested.  Good luck to you.  Suzanne

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  • chinablue
    chinablue Member Posts: 545
    edited February 2010

    I am struggling with the same issue.  I have no family history of bc, but here I am at age 47 with stage III. Should I get tested?  Would I want my daughters tested?  

    Wouldn't it place such a huge burden on them.  I have read about women that have prophylactic mx and hysterectomies at young ages.  Geez, I don't want that for my daughters.  

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  • ElaineD
    ElaineD Member Posts: 2,265
    edited February 2010

    Chinblue-if you have no family history of bc, then you wouldn't qualify for testing anyway.(At least not in the UK-don't know what the criteria is in America?) The gene has to be passed down from one of your parents-and if neither of them were affected, then you cannot have the gene.

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  • chinablue
    chinablue Member Posts: 545
    edited February 2010

    My onc suggested that I get tested.  It would be covered by my insurance.  It is my understanding of genes that someone can be a carrier and not necessarily present with bc.  Also, genes are funny. I might have inherited a gene from a great Aunt i never knew.  Still, I don't know if I want to do the test.  My sister in law, a very highly regarded doctor, thought it would be a good idea to get tested so that I might easily qualify for any upcoming PARP clinical trials.   Heavy sigh.

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  • LISAMG
    LISAMG Member Posts: 639
    edited February 2010

    Another Lisa Marie here and I urge you to consider testing, regardless of your mom's results. Why? Do it for your self and your children's sake. PLEASE first seek the advice of a certified genetic counselor, as they are the most up-to-date professionals to guide you.  I do not understand your mom's " inconclusive" test results. Positive or negative?? 2005 was not that long ago, either your mom had the gene, she was negative or she tested with a variant of undetermined significance. If she were BRCA positive, you have a 50% chance of testing positive OR negative. Remember, knowledge is power and even if you have the gene, its something you were born with and now know there are steps you can take to be proactive. Very personal decisions, but ignorance can also sometimes be lethal.

    Two other strong recommendations after genetic counseling/testing, for you. Get a copy of the newly released book, "Positive Results", by Joi Morris. Its a comprehensive book with everything you want to know, but afraid to ask!!  Also, visit www.facingourrisk.org for info. and support for high risk women who have a predisposition to hereditary cancer. Explore the web site, visit the messageboards and find a local outreach group in your area where you can meet other women who share your experiences. You will be empowered. We are here for you and please know you are never alone!! Sending you best wishes for totally B9 biopsy results and keep us posted. Innocent

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited February 2010

    Another viewpoint.

    My sister, Sue, died from breast cancer at 52 (2005).  Everyone (excpet my Mom) in my mother's family has died from cancers.  Sue was offered the test but she opted not to have it done.  One of her concerns was if it would affect her daughter's ability to get medical insurance. During that time my GP asked me if I wanted to get tested but since I didn't have BC I figured why bother.  Just keep going and getting the mammos.

    If Sue or myself had been tested (I'm sure she would have been positive) than I'm sure they would have sent me off to have an MRI well before the cancer I have reached stage 3.  It's the one regret that I have.

    Now that I'm dx'ed, my mother (who has had stage 1 twice) and I said we had enough.  We had to know for the rest of the family.  We both tested positive BRCA 2.  We've shared this with the immediate family and with the cousins.  It felt like a relief for us.  We knew there was a reason for all the cancer and to be able to blame this mutation feels good.

    My 30 year old daughter will be going in to be tested in the next week or so --  she's already met with the counselor.  She's still thinking through what she wants to do if she positive.  But she's already in a high risk category anway so the gene doesn't make a huge difference.  She's leaning toward the idea of doing vigilant screening till at least 40.  Then see what the medical world has to offer for options at that time. 

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  • Renata
    Renata Member Posts: 172
    edited February 2010

    I decided not to get tested although it was suggested twice, I don't even understand why it was proposed a second time when I had already rejected it (money?). I don't have children so even if I had the gene, the "curse" is likely to die with me...Having children makes all the difference I think.

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  • squidgee
    squidgee Member Posts: 11
    edited February 2010

    I'm in Canada. I can't even get the test done unless my birth mom's test is positive or I have breast cancer. That's what I've been told by 2 different hospital genetics programs. They said it's like finding a needle in a haystack without knowing exactly what they are looking for from my birth mom's DNA. 

    Irregardless, I'm 99% sure I won't get testing. I don't want to spend my life in fear of getting cancer. I have no plans to get my ovaries out or a preventative masectomy. I've already been told that I would be able to get annual MRI screening tests done. I think that's enough for me. 

    I figure that I'd rather live my life and I'll deal with what happens.

    I just feel so overwhelmed these days.  

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  • mawhinney
    mawhinney Member Posts: 1,377
    edited February 2010

    I think of  testing as being pro-active. I want to know all I can so that I can get the best available treatments early.  I'd rather be aware of a possible illness, be on the lookout for trouble, and be ready to take defensive action.  Knowledge s power.

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