What is my Risk?

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nsuvalentine
nsuvalentine Member Posts: 3

I have been tested for the BRCA1 & 2 gene and the test was negative for both.  I have always felt very lucky since my grandmother died at 48 from breast cancer, her sister has had breast and ovarian cancer before the age of 50, and I have breast cancer on my other side of my family in my grandmother and aunt, and my mother tested positive for both genes and has done preventative surgery to prevent cancer.  So, I found a lump in my breast and have made a doctor's appointment.  I assumed that since I did not have the gene and was still under 40 I didn't have much to be concerned with.  So, my questions is:  What is my risk since I'm 27 and do not have the gene?  I guess I'm looking for a percentage.

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  • leaf
    leaf Member Posts: 8,188
    edited May 2009

    Risk estimation for breast cancer is very difficult for the general population.  Assuming your risk is no higher than the 'average woman' (in other words, you do not have a mutation in an unknown breast cancer gene), you can use this model.

    Yes, you can put your values into the modified Gail model, and get a number. http://www.cancer.gov/bcrisktool/

    There are other breast cancer risk models, but they are not as popular.

    You may feel very comfortable with your answer- here you have a percentage.

    But, before you get comfortable with that thought, you may want to carefully read this editorial from a professional journal.  http://www.ncbi.nlm.nih.gov/pubmed/17148763  Then click on the 'free final text' brown button on the right to access the article.

    Essentially, it opines that we know quite well the risk of a group  of women with your characteristics.  However,  estimating  your risk, you as an individual,  our ability to estimate your chance of having breast cancer is a different matter.  This editorial opines that our ability to do that is only 'slightly better than the toss of a dice.'  The article describes statistical tests they use to estimate risk.

    To get a more accurate answer, you would want to see a genetics counselor.

  • mawhinney
    mawhinney Member Posts: 1,377
    edited May 2009

    I remember reading that 75% of those diagnosed with breast cancer have no known risk factors. I am healthy, eat the right foods, don't drink or smoke, & no one in my immediate family has or had breast cancer, yet I was diagnosed with breast cancer last year.

    The best thing you can do for yourself is to have yearly mammograms and know the warning signs for breast cancer. I noticed that my nipple was starting to invert & made an immediate appointment with my doctor. You are doing the right thing by having the lump checked out. 

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited May 2009

    This is all good advice and I would add one thing.  Instead of having just the mammo perhaps you bs or you ob/gyn would add a breast MRI to the equation..  Quite a lot of DCIS (the earliers stage of cancer) is seen by a breast MRI.. the MRI would be approved on family history not on BRCA + results..  Best!

  • shelloz1
    shelloz1 Member Posts: 405
    edited May 2009

    Hi Leaf,

    The calculation is good only for women who have never had BC, do you have a link to any site for a calculation on reoccurence? 

    Shelley

  • ccbaby
    ccbaby Member Posts: 985
    edited May 2009

    You are definitely on the right track with having the lump checked out. I first had a lump appear about 6 years ago when I  was 35, had a diagnostic mammogram and ultrasound and it turned out to be a fibrocystic cyst. I cut back on my caffeine intake since then, I was drinking too much mountain dew and ice tea, and that can add to it and I kept a good watch on it since then, but then I found another lump in the same breast in January this year and it turned out to be cancer. I am 41 now, and have always led a healthy lifestyle, eating right, no smoking and maybe a drink 2 times a year. There is no other cancer of this type in my family, so I was tested recently for both of the BRCA genes and both are negative.

  • leaf
    leaf Member Posts: 8,188
    edited May 2009

    Hi shelloz, unfortunately I don't have info about recurrance rates - but I don't know much about invasive.  (I have LCIS and nothing worse.)

    I thought that the oncogene-type tests helped predict recurrance for certain groups of early invasive people?   Perhaps someone on the invasive forums may know more.  

    I'm sure its highly individual, and there are many uncertainties.  If they have this much uncertainty for women who do NOT have breast cancer, you can imagine the uncertainty for individuals in smaller groups.

  • Daudine
    Daudine Member Posts: 221
    edited June 2009

    My genetic counsellor told me that overall cancer is 10 % genetic, 50% family history and 40% environmental. Before being tested my risks were still very high because on my mother dying of BC at 64 and her sister at 42. My guess is you are high risks. Please keep us informed and good luck!

  • nsuvalentine
    nsuvalentine Member Posts: 3
    edited June 2009

    Thanks for all of your help.  I did have an ultrasound and mamagram today.  They said everything looked okay.  I do not have any offical results yet, but it appeared that it was just dense breast tissue.  I'm not sure why one side has changed so rapidly compared to the other.  But I appricate all of your input!

  • rachelmf
    rachelmf Member Posts: 13
    edited June 2009

      hello all, this is my first time posting but i've read alot...  My mother has two sisters who have had bc both before age 35 one of them died at age 31.  what is my risk since my mother now 50 has never been diagnosed.  i'm so worried since i have been having pain on left breast for 2 plus months even tho mamo and u/s were neg.  Doc felt some thickening but since neg results seems unconcerned.

  • nsuvalentine
    nsuvalentine Member Posts: 3
    edited June 2009

    I orginally posted this.  I did finally get my results and they said, I just has some dense tissue.  They said this was perfectly normal for someone in their 20's & 30's.  I also know sometimes it has to do with drinking too much soda and not enough water, or at least that could explain the pain.  You may have something else going on.  It never hurts to have a second opinion.

  • hrf
    hrf Member Posts: 3,225
    edited June 2009

    rachelmf ..... I don't know if people in your family have been tested for BRCA+ but it might be a consideration with so much bc in your family. It's not unusual for a BRCA woman to not be diagnosed until late 50's or early 60's. I don't want to scare you but you should have as much knowledge as you can. Even though mammogram and u/s were negative, the fact that doc felt some thickening should make you consider an mri. For those of us with ILC, that's the way it does show up... just some thickening but neg mammo and neg u/c. Get an mri just to be absolutely sure that it is nothing ... and I hope it is nothing.

  • rachelmf
    rachelmf Member Posts: 13
    edited June 2009

      I asked for an mri but no luck i have an appointment for general surgeon but i don't know how that can help.  i am having a hard time because i have lots of itchiness, one side bigger thatn the other, and achy pain.. i feel like everyone thinks i'm nuts but i just don't feel right.  is that crazy???

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited June 2009

    Rachelmf:  I don't know if this helps, but you are high enough risk (based on what you have told us about family history) to INSIST on a breast MRI.. A genetic counselor could help you get one by taking into consideration all your family history but that's another referral.. Go go your GP and explain your family situation and explain that based on your research YOU NEED a breast MRI.. I don't know who told ou "no luck" but they are just trying to keep costs down and perhaps you are in an area where there aren't a lot (if any) breast mri's available?  You know the answer to that I don't, but if there is a Major medical hospital around you chances are they will either have or know where an MRI is being used..  Push you are not crazy!

  • rachelmf
    rachelmf Member Posts: 13
    edited June 2009

      thank you for your responces...i am pushing for mri you think the surgeon will be any help?  i have appt next week, but the wait is awful.  like i said i just feel awkward.  thank you all for understanding

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