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FayeFighter
FayeFighter Member Posts: 58
edited June 2014 in High Risk for Breast Cancer

Hello All,

I have been reading the topics for awhile now and decided to write today.  I went to see a genetics counselor and oncologist today.  I am just being proactive bc of my history (I am 31):

 1986 - mother diagnosed with BC to left breast at age 36

2002- mother diagnosed with BC to right breast, aunt passes away from BC and another aunt diagnosed with BC

2007 - mother diagnosed with metastatic BC to bones and chest wall.

As you can see it runs deep.  Anyway, my mother will hopefully have the blood test to check for the two genes.  I am scheduled to have a mammogram, an MRI and to see the oncologist every six months.  I really like the oncologist b/c he seems really concerned with my history and wants to take every precautionary measure.  Thanks for reading

Concerned but not worried

Rakesha

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2008

    Rakesha---good for you for being  proactive.  Will you be considering taking tamoxifen? I was diagnosed with LCIS and have family history (Mom had ILC), so am very high risk due to the combination of the two. I am very closely monitored with mammos alternating every 6 months with MRI, frequent breast exams, and followed by oncologist. I have about 3 months left to finish up my 5 years of tamox, which fortunately I've tolerated pretty well. Just found out my insurance won't pay for the genetic testing. Praying you  get negative results soon.

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  • FayeFighter
    FayeFighter Member Posts: 58
    edited July 2008

    I really do not know what the next step will be.  I guess I will find out once all my results come back.  Thank you for responding and letting me know different methods of treatment!!!

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  • cdsouza
    cdsouza Member Posts: 10
    edited July 2008

    Hi...I am pretty new too. I am 38 and looking into choices. I am also finishing the book by Jessica Queller caller Pretty is What Changes. She was 34 when she found out her status. It is a good read.

    Cathy

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  • leaf
    leaf Member Posts: 8,188
    edited July 2008

    If your mother tests negative, then almost certainly you will not have a *known* breast cancer genetic defect.  If your mother tests positive, then the genetics counselor should be able to give you estimates of your breast cancer risk.

    For BRCA positive people, some choose to have their ovaries removed, some decide to have their breasts removed, some prefer to have anti-hormonal therapy (like tamoxifen) with monitoring, some decide to be closely monitored, and some prefer not to do anything.

    I would not really recommend the last choice (not being monitored at all), though some people do choose to do this, usually out of fear.

     There are some women who have a family tree like every female relative died premenopausally from breast cancer, and have male breast cancer in their family, yet they turn out to be negative (or unknown) on testing.  So you don't know until the tests come back. 

    There in NO ONE right choice for everyone.  It is your body.  You will make the right choice for YOU. 

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  • bcs75
    bcs75 Member Posts: 281
    edited July 2008

    I meet with the doctor to have the BRACA test on Tues. I was diagnosed Feb with dcis, stage 2 with 4 lymph nodes involved. I went through 8 treatments of chemo, 4ac 4 taxol and was blessed to do well with that. I start radiation a week from Monday. my mom was diagnosed at 27 , had radiation and lived another 40 years, dying then of colon cancer . Her aunt had ovarian cancer. I guess combined with me that makes the doctors feel a test would be wise. I have 2 daughters and would like the info for them. Plan on doing alot of reading the next few days, but if anyone has advice as to questions I should ask I would love to hear them. The support on this site has made such a difference on the journey through this.

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  • leaf
    leaf Member Posts: 8,188
    edited July 2008

    Sorry, I didn't know you had to join our group because of a personal history. (I should have picked up on that from your number of posts.) My apologies.

    If I was in your shoes (and I am not)

    I would want to know some of the following:

    a) If positive, how well do various options work to prevent ovarian/breast/etc cancer?  What is my risk for ovarian cancer (if you have not already had this).

    b) If my test is unknown, how should I follow up? (some people say to keep in touch if more info becomes available.)

    c) If positive, when should my children be tested (if they desire testing)? 

    d) How accurate is the testing? 

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  • angelaw
    angelaw Member Posts: 44
    edited July 2008

    Just a reminder: the known genetic defects (brca 1 and brca 2) are passed throught the father or mother.  If mother tests negative that is not a surety that the gene is absent. That is why we need to test our boys as well as girls if we are brca carriers.  both boys and girls have a 50% possibility of inheriting the genetic defect from a parent with the defect.  Our boys can pass on to their daughters and sons.

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  • mbpetit
    mbpetit Member Posts: 66
    edited July 2008

    bump

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  • bisous3
    bisous3 Member Posts: 116
    edited August 2008

    There is a wonderful organization called FORCE (Facing Our Risk of Cancer Empowered), centered around Hereditary Breast and Ovarian Cancer (HBOC). The website is www.facingourrisk.org. I found out I was BRCA 2+ last year and FORCE got me through the experience, still does.

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  • HeatherBLocklear
    HeatherBLocklear Member Posts: 1,370
    edited August 2008

    Hi all,

    I just want to add that even if someone tests negative for BRCA I and II, a strong family history should encourage the individual to be more vigilant than most. I tested negative, but both my daughters have been told (they live in France) that they must start mammograms at 35, and breast MRIs as soon as anything out of the ordinary appears, even if it's just a cyst. There are undeniable advantages to a state health care system that picks up the tab (well, not really -- in truth taxpayers foot those bills) for any necessary medical test for any citizen who needs it.

    Hugs,

    Crabby Annie

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  • Jeansbeans
    Jeansbeans Member Posts: 175
    edited August 2008

    HI Rakesha, Good for you for being Proactive!! I commend you!  I have a strong family histoy, Mother, grandmother and Great grandmother and 1st cousin.  So. I too was proactive, fought Ins. co. for 3 mo. after 2 denials and letters from my GYN. I called and spoke to a supervisor at Ins. co.After hearing my concern{ all of us were in early 50's} An MRI was approved. and guess what?  MRI picked up 2 areas that ended up being Invasive Ductal Carcinoma{ a mammo done the same day came back clean, My Dr. told me this cancer would NOT be picked up by Mammo until I could feel it}  I had bilateral mastectomy, decided to have my other unaffected breast removed, I was not going to worry about ever getting cancer again. All my DR.'s supported my decision. THank God I was persistant with having a MRI done becase it was caught so early, stage 1 no nodes and 1.2cm's and 0.05cm's I do not need chemo or radiation, just Tamoxifen for 5 years. I also had genetic testing done. I have 2 daughters and a son. I do  not carry the breast cancer gene, but, that does not mean my son and girls don't. Yes, the gene can be passed from son to his daughters too!  Good  for you for going throigh with all your tests!  So glad you are having MRI!  We need to fight for breast MRI"S  Keep us posted on your results. Hugs to you  Jeanie

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  • FayeFighter
    FayeFighter Member Posts: 58
    edited August 2008

    Thank  you so much Jeanie for that information.  I am even more determined now and can't wait for my MRI.  If you don't mind me asking, did your Dr. recommend removing your ovaries?  My mother's radiology oncologist recommened after I had kids to get a oopherectomy. 

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  • spar2
    spar2 Member Posts: 6,827
    edited August 2008

    It is great that you are being proactive.  Was your family's cancers ER?PR +?  I think if it is that is when they recommend removing the ovaries.  Best wishes to you and lots of hugs. Please let us know how your test turns out.

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  • Jeansbeans
    Jeansbeans Member Posts: 175
    edited September 2008

    Hi Fayefighter, Yes, MY Dr. did recommend an oopherectomy and a hysterectomy, which I am having in the late fall.  Once you have breast cancer the risk of ovarian cancer is greater, also. I am on Tamoxifen for 5 yrs. and the risk od uteran cancer also increases.  I say, Get it all OUT!!  LOL.  Keep us posted. Jeanie

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  • Scifantasy1017
    Scifantasy1017 Member Posts: 6
    edited October 2008

    Hi Fayefighter.

    I am BRCA1+ as is my mother.  I am 40 now with two boys.  I was diagnosed in March 2008 with left invasive DCIS.  Finished chemo in August.  My mother was 31 when she had to have a bilateral radical mastectomy (35 years ago!).  She had had a hysterectomy back then because of normal problems but recently had to have an Oophorectomy.  We are both ER, PR negative so no hormonal treatments for us. :C

    I am scheduled to have a hysterectomy/oophorectomy in November.  The genetics doctor has actually pushed to have the surgery as soon as possible as ovarian cancer is the silent killer and so hard to detect!  I am also going for prophylactic right mastectomy and reconstruction after that.

    Good luck!

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