I have BCRA gene...just found out today!!

hi5-2006Aug13
hi5-2006Aug13 Member Posts: 62
edited June 2014 in High Risk of Recurrence or Second Breast Cancer

I guess I wasn't surprised!!!! As the 3rd of 4 sisters who got bc ( no prior) ca history to our knowledge. My first sis passed away at 33. Second dx'ed 8 years ago would not have test..I was dx'ed and had bilateral last May and then she had test. It took 6 months and said she had the gene. All three of her daughters ( in their 20's)found out that they tested positive for the gene last week. This whole bc thing has been a series of on-going problems since I found the lump in March 2006 ( 1 year and 2 days ago) After rads and starting tamox. found out I have hypothyroid, have a lump and nodules and one side larger than the other. Scans next week....and now probably more surgery. Tell me your stories... did you have ovaries, fallopian tubes and uterus removed?

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  • CalGal
    CalGal Member Posts: 469
    edited March 2007
    Hi Feb -

    Sorry to hear of you and your family's extensive bc ...

    I found out I was BRCA1 after a recurr, mets to liver and unrelated renal cell carcinoma. I've been really aggressive and am thrilled to be NED (no evidence of bc) for 6 months and just had radio frequency ablation on my kidney cancer three days ago.

    I also have an enlarged thyroid, but normal function. Last week, I found out my biopsy came back negative! The endocrinologist thinks I have an overactive parathyroid, as I've been having high calcium levels in my blood ... which can also cause osteoporosis and heart irregularities.

    At this point, I'm looking into bi-lat mast & recon, since I am at high risk for a new primary. I haven't gotten to the ooph yet ... although chemo has probably shut the door, I had hoped to have a baby ... but I know I should look into that too.

    You might want to check out FORCE, a website for women (and men) BRCA positive or high risk for bc and ovarian cancer. There's lots of discussion about pbm and ooph.

    Check them out at www.facingourrisk.org

    They're also having a conference in Florida in mid-May.

    CalGal
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  • hi5-2006Aug13
    hi5-2006Aug13 Member Posts: 62
    edited March 2007

    I had bilat last May when I was dx'ed so now will be waiting for my appointment with the oncological gynecologist clinic and will see where I go from there. I am getting tired of all this. ...more medical stuff, more tests, appointments, more unknowns it's very wearing isn't it?

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  • donnams
    donnams Member Posts: 31
    edited March 2007
    Hi feb...

    I found I had the BRCA2 gene after my diagnosis a few years ago. Despite being a lumpectomy candidate, I did opt to have a bilat mastectomy, an oopherectomy (actually, had an entire LAVH) so ovaries, tubes AND uterus/cervix were all removed. I feel very good about my decision, knowing I've done all I can to reduce my risk to its lowest common denominator (these surgeries won't ELIMINATE the risk, but they do reduce it substantially).

    I'll second the vote for FORCE (www.facingourrisk.org). Check out the message boards....there is LOTS of amazing info there, a great community of women (and a few men) who are willing to share their experiences.

    It's a tough choice, but my personal feeling is that these surgeries are a good thing. My mom had her first bc 21 years ago. She opted for a mastectomy on that side, and for 21 years, had no recurrence. Then, this past year, she developed a second bc in the other breast (DCIS). Just goes to show that even after that long a time, our risk of a second cancer is still pretty high. (Yes, she tested positive after I got my results).

    I'm glad you're checking out a gyne onc to talk about an oopherectomy...that's a good choice for BRCA gals. Be sure to ask about having a peritoneal wash done if you choose to do the ooph...this is part of the typical protocol for BRCA gals.

    Hang in there, honey!!

    Hugs,
    Donna
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  • hi5-2006Aug13
    hi5-2006Aug13 Member Posts: 62
    edited March 2007

    What is LAVH and peritonal wash? What determines whether you have a hysterectomy or not? Are you ER+? I am still waiting to hear from oncological gynocological clinic.

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  • ellenj
    ellenj Member Posts: 5
    edited March 2007

    I have also just tested BRCA2+. I decided to be tested because my mother had bc 30 years ago (age 50) and then again 1 year ago (age 79). I was diagnosed with bc in Jan. just after my 50th birthday (just like mom). I am scheduled for bilat mastec 3/30/07. I am really anxious, and would have opted for a lumpectomy had I not tested positive. I have not decided on ooph yet. It is all too overwhelming and I feel like I've got to deal with the breast cancer first. I do feel like I'm making the right decision about the bilat surgery.

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  • JennKeisner
    JennKeisner Member Posts: 33
    edited April 2007

    I tested positive for the BRCA 1 gene. Shortly after I finished chemo I decided to have a bilateral mastectomy and have my ovaries removed. I am 34 yrs old and have 1 daughter. My mom tested positive as well. My maternal grandmother died of ovarian cancer 22 yrs ago. We assume that she had the gene too. Thankfully both of my sisters tested negative.

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  • sharebear
    sharebear Member Posts: 332
    edited April 2007

    I had my first lumpectomy at age 32 with chemo and radiation. Nodes were all negative and the doctors said I was cured. A few years later is was suggested by my older sister's doctor that I have the genetics test due to my grandmother passing from bc (many many years ago when I was 6). Yes I tested positive for the BRCA1 gene. My grandmother was Askenazi Jew. My sister tested negative. It was immediately suggested that I have an oopherectomy (had already had a partial hysterectomy when I was 32 due to endometreosis). There are no good tests for ovarian cancer until it is very advanced. If you've already had kids take it out. Menopause isn't that bad. It hits hard but also goes quickly and then the flashes and night sweats slow down and stop. Better them than your life. I kept monitoring my breast with the normal tests as bc can be detected and treated earlier and 11 1/2 years later it's back. I have now had a bilateral mastectomy with tram flap reconstruction. I am what they call tripple negative which makes it harder to treat even though the nodes are negative so I will have chemo for four months every two weeks. Had we known about the gene the first time, we would have done the mastectomy back then instead of the lumpectomy. Either way I'll survive this also. Something else you need to think about if you have BRCA1...a colonoscopy....also causes colon cancer.

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  • NavyVet
    NavyVet Member Posts: 8
    edited April 2007
    Cancer has taken virtually every woman in my family, including six maternal aunts and a half-dozen maternal cousins. I lost an aunt, a cousin and a brother-in-law just within the past month (one due to colon cancer...you are absolutely correct about the BRCA factor).

    This month marks the third anniversary of my diagnosis.

    Despite these indicators, the Veterans Administration will not allow a hysterectomy as a preventive measure. With a daughter and three granddaughters at risk, the genetics factor is worrisome. Darn frustrating, too, since research leads me to believe that my work in the Navy caused cancer in the first place.

    Apparently, female veterans in America are short-changed when Congress figures annual VA budgets. For instance, with no VA facilities to treat breast cancer, I had to drive 70 miles to a civilian facility for surgery, another facility for chemo, another for radiation and yet another for post-op care.

    I am denied genetic testing for the BRCA factor. I am not authorized to have a hysterectomy, despite surgery for a pre-cancerous condition, subsequent breast cancer, high-risk genetics and twenty-odd years of requests for same. Why? No money in the VA budget for such matters.

    Fortunately, I am fueled by a slightly warped sense of humor and a profound faith in the Lord Jesus, a faith so powerful that cancer diagnosis did not elicit a single tear. No crying, no worries, no fear. Should cancer take my life, I will simply be going Home.

    By the way .. if anyone figures out how we can lose all the hair on our head and STILL have to shave our legs .. I'd be interested in having an answer! ~grin~
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  • sharon56
    sharon56 Member Posts: 220
    edited April 2007
    bobbyjean : your case does not look fair at all thank god for your faith and humor . You can still get treatment can't you ?
    I am from the Jan chemo group and have just had my last chemo. Now onto rads and waiting to get into genetic counseling in Nov . Here on Ontario there is a long wait list for testing .
    Funny thing all past circumstances are pointing to being positive . I have colon cancer too stage II caught in Nov 2006 right after my BC , my younger sister died form BC at 34 13 years ago , I have had graves disease (overactive thyroid ) and am on thyroxine meds now as I had a radioactive iodine treatment for it .
    My main concern is my 2 daughters and my sisters and my sister's daughters. I can handle any surgeries that I may need on down the line when and if I need them . But that will have to be a bridge I will have to cross when I come to it .
    Right now it's getting back to health and starting to feel normal again .
    Any Canadians here ? I am going to Sunnybrook Cancer Center for my rads and genetic testing .
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2007

    feb---A LAVH is a laproscopic assisted vaginal hysterectomy. A peritoneal wash is done when there are concerns of cancer in the peritoneum (they did it when I had my total abdominal hysterectomy--I had large ovarian mass and they were concerned about the possibility of ovarian cancer; fortunately everything was benign)--- it helps to find any stray cancer cells.

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