corey50 Member Posts: 111

Hi all,

Would like some input on what others have done in regard to genetic testing. Has anybody, especially those diagnosed more than 10 years ago, decided NOT to have the BRCA testing done?

A little background on me: I was diagnosed in 2005 with stage 1 breast cancer, had  chemo and radiation. 

No other breast cancer in my family at that time.

At that time testing for the BRCA gene and the oncotype weren't being routinely done, especially with no other bc in the family.

Over the years I would ask my doctors about it and they were non-committal (do it if you want, but not necessary).

2014 my sister's daughter was diagnosed (at 38 years old) she had the genetic test and was negative.

I had seen a genetic counselor way back in 2008 and again a few years later, but always chickened out on having the test.

Now my daughter is almost 25 years old and she is starting to think about these things considering her first cousin was diagnosed (maybe a dr put some ideas in her head) and she would like to have the brca test.

I said that I would have it if it would make her feel better. I also saw a new breast surgeon (my original moved out of state) and he said I should have it done.

So now here I am again chickening out. I feel like time has gone by and I don't want to dredge the anxiety up again or even think about what I'll have to do if it's positive.

Any body else out there who has never had the testing done? Thoughts?

Thank you so much for input and sorry for the long post. Happy rainy Sunday, perfect day to catch on an Oscar movie before tonight.




  • Lorri007
    Lorri007 Member Posts: 1
    I did have the BRCA testing

    I did have the BRCA testing done as I also have a daughter!  It definitely eased both our minds when it came back negative but still we are more aware and check often!

  • anniemshe
    anniemshe Member Posts: 91 Member

    is the test expensive? My Dr never mentioned it.

  • DCs_lady
    DCs_lady Member Posts: 1
    BRCA1 positive

    I was diagnosed in 1996 with Invasive ductal carcinoma. I had a lumpectomy, chemo and radiation.  1n 1996 genetic testing was rare, cost thousands of dollars and insurance did not pay.  My father's side of the family has a history of breast and ovarian cancer.  Last June my niece, at the insistance of her OB/Gyn, was tested and is BRCA1 positive.  My mammogram that month was clear.  If she was positive and, I had cancer at 39 years old, I had a good chance of being positive too.  In February I was tested.  I am positive as well.  I had decided on a hysterectomy to be safe from ovarian cancer and would start having mammograms more often.  The OB/Gyn suggested a breast MRI.  Good thing.  I have breast cancer in the other breast.  Right after the hysterectomy next week I will schedule the bilateral mastectomy and hopefully reconstruction.  I am triple negative so I will have chemo again and possibly radiation.  My niece is cancer free but choosing to have the same surgeries. Her preventative treatment will reduce her risk from 70% to 1%.  No question for either of us. 

    Have I had anxiety, absolutely!  Do I want to do this again, no way!  The company my husband has worked for nearly 35 years is going out of business.  There goes his insurance and income. I will have to go to work through out my treatment.  Not looking forward to that!  I have three beautiful grandsons and probably more grandkids to come.  I look forward to many healthy, cancer free, worry free years!

    Your tests could come back negative. Wouldn't that be wonderful!


  • cyn1957
    cyn1957 Member Posts: 3
    Genetic testing second time around

    I had invasive breast cancer 17 years ago in 2002. I had a lumpectomy done and auxillary node resection, plus I went through chemotherapy and radiation. At that time, my doctors did not recommend doing the BRCA test since at that point I was the first in my family who had been diagnosed with breast cancer. Last year my niece was diagnosed with breast cancer and I was just recently diagnosed with breast cancer again (in the same breast) and my surgeon strongly recommended I have the BRCA test. Luckily, the results were negative but since I have to have a full mastectomy of the cancerous breast, I have decided to go ahead and do a double mastectomy so that I don't have to worry about getting cancer down the road in the remaining breast. I think having the test is a good idea, because it can help guide your decisions and it is also good for other members of your family to know in terms of their own situations. The cost of the test is high, mine is slightly over $6,000. But, even if my insurance company didn't cover it, I would pay for the test myself just to have the comfort of knowing. 

  • Patriot_Mom
    Patriot_Mom Member Posts: 10
    BRCA Testing

    I had the testing done when diagnosed in 2014, as well as for a number of other genetic markers that are linked to breast and other types of cancer.  My insurance covered it or else the doctor got it covered otherwise, not sure, but I know I didn't have to put out a large sum of money.

    It came back negative on all, but I did it because I am the eldest of 4 sisters and have aunts who have also had breast cancer.  I wanted to know for them.  That being said, my cancer has returned after 4 years and metastasized.  Just know that it can rule out that one type of cause, but is no guarantee either way.  The BEST bet is regular mammograms.

    BTW so far none of my 4 younger sisters all in their 50s have had breast cancer, but 3 of my mothers sisters have.

  • Rozar62
    Rozar62 Member Posts: 1
    I had the testing and it was

    I had the testing and it was negative, but I say that with a grain of salt. I was told 10 years ago they tested for 10 different and now like 35 so since I have a grandmother who passed away from breast cancer, a aunt diagnosed and now myself I'm not so sure in the coming years they will test for more and I would actually be a positive then.