BRCA2 positive and now what???

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  • Bookworm
    Bookworm Member Posts: 13
    edited August 2008

    I too have the BRACII mutation. Just remember, it is a tool tthat can help you, your doctor, and family make decisions. You have options-and have to be vigilent.

    I was diagnosed with Stage III B, Inflammatory Breast Cancer. After all my treatments my doctor suggested I have both breasts removed. I choose to keep the right-healthy breast. They removed even my nipple, but I have a great new prostetic breast that is very comfortable. I don't think I will do reconstruction. I believe it would be too hard to massage the lymph with an implant in the way. Does anyone know if this concern of mine is valid?

    I did decide to have my ovaries removed. I had that done yesterday. I am sore, but everything went well. I will have the biopsy report later today or tomorrow. If the ovaries are cancer-free I am going to celebrate. It has been a long year. (8 rounds of chemo with 3 chemo drugs, Surgery, 33 rounds of radiation, and now Arimidex.)

    Best to you 

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  • 2z54
    2z54 Member Posts: 261
    edited August 2008

    Hi WishIwere,

    I was just diagnosed on 7/23/08. Haven't started anything yet but it looks like a bilateral with chemo, rads, everything. Today I had my BRAC tests, because..... every woman on my father's side has died of breast cancer or had masectomy (2 aunts in early 70s and grandmother - not sure what age of masectomy).  The geneticist told me I have a 65% chance of having the mutation.  I'm almost positive I do, and because I already have one 3.5 cm trip neg. in left breast and a very small (7mm trip positive) in right breast... I'll do the masectomies.  The question now is what about the ovaries?  I'm 54 and already in menopause.  I'm not looking forward to estrogen therapy for the small lump, but I guess I'll do whatever they tell me to do.  

    If you can get the test... it sounds like a good idea.  For me, it will confirm the decision to have the bilateral, help me to decide about the ovaries, and give my niece more information than I ever had when I was growing up.

    Good luck!Smile

    2z

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  • AudreyOK2go
    AudreyOK2go Member Posts: 2
    edited October 2008
    Hi Gabi, I have survived breast cancer twice now and it has been 11 years since the first time and 7 years since the 2nd time. It has been a rough road, by hey - I am still here! I recently decided to have the genetic testing done. There is no history in my family except for my Dad, who had breast cancer so I never thought about genetics. Then a cousin got breast cancer so I went and talked to a counselor and she said that a male in the family is a big red flag. And the test came back positive that I have the BRCA2 defective gene.

    This is so great reading how all of you are sharing your experiences and gathering the information you need to make these really hard decisions. I am scheduling now to get my ovaries removed in about a month. For past surgeries, I had a mastectomy with the tram-flap reconstruction. I call it the surgery from hell :) but I am glad I did it. At first I thought - I cannot believe I voluntarily did this!

    My daughter wants to get tested but she is living in Seoul now and having trouble finding out how to get the testing there. Do you have any advice as to what she needs to do? Thanks for sharing.

    Audrey

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  • seoulite
    seoulite Member Posts: 13
    edited October 2008

    Hi Audrey,

    first of all I think it is a good thing you got the genetic test done, especially after your and your family's history. Congratulations on being a double survivor! It's always so encouraging to hear such stories!

    I don't regret getting the test done and I am glad that I know about the result and can now make decisions based on that knowledge.I decided to go forward with the removal of the ovaries as a first step as it is supposed to reduce the risk of breast cancer by 50%. I just haven't gotten around to making the appointment. I'll talk to my doctor about it on Monday.

    I had my genetic test done in Germany. Here in Korea it doesn't seem to be very common to have the test done. My doctors here were not very helpful in that regard and also having preventive surgeries is kind of unheard of. They don't like to take out organs that are intact. If possible I would recommend your daughter to get the test done in the US. Otherwise she can go talk to Dr. Sung who is a great Obgyn here in Hannam-dong and ask for a referral. She's welcome to email me at gabrielekim@gmail.com in case she has more questions or needs the contact info.

    Hope this is helpful.

    Regards and good luck!

    Gabi

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  • AudreyOK2go
    AudreyOK2go Member Posts: 2
    edited November 2008

    Gabi,

    Thank you sooo much.  She is going to contact Dr. Sung and see how it goes.  She had Dr. Sung on her list to try so she feels more confident now to go that route.  Such an ordeal under normal circumstances and you have done amazingly well.  I am post-menopausal now after the chemo so removing my ovaries will not help to lower my breast cancer risk. But I, like you, think 27% ovarian cancer risk pretty much stinks.  Then I read that with the BRCA2 gene, ovarian cancer usually starts in the fallopian tubes and is therefore hard to catch early.  For me it was a fairly easy decision.  You are so young, this would be much more difficult but I think you have made a good choice.

    Audrey

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  • Daudine
    Daudine Member Posts: 221
    edited February 2009

    Do you want to go through breast cancer again?

    I am 38 and BRCA-1 positive. My mother died from a second breast cancer at 64, first one at 51. My aunt died at 42 of breast cancer another one at 38 from lung cancer, an uncle at 51 from colon cancer.

    I had my ovaries removed last March and I had bilateral mastectomy with reconctruction last May though I have no cancer. My chances were too high (90% breast cancer and 65% ovarian cancer). I don't regret anything though it was a hard road to take.

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  • MargaretB
    MargaretB Member Posts: 1,305
    edited February 2009

    I am home now recuperating from a laproscopic hysterectomy, oopherectomy AND bunionectomy done 6 weeks ago.  The hysterectomy was done with the DaVinci robotic surgery.  I am doing great.  I had a bilateral with immediate free tram reconstruction when I was 50.  My sister has had so many problems with potential cervical cancer issues so once I tested positive for the BRCA2 gene, that made my decision to have the other work done. 

    Margaret 

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  • juststarting
    juststarting Member Posts: 8
    edited April 2009

    I get the results tomorrow; I would recommend anyone who is thinking of getting this done, make sure you have disability insurance and increase your life insurance first.  I am the caregiver for my family, and now with possible multiple surgeries I am worried about finances just when I should only be concentrating on my health. 

    All I know right now is at 39 (barely) I have been diagnosised with grade 3 breast cancer.  There is only 1 female on my dad's size and she had breast cancer and father has prostrate cancer.  Because I have the most aggresive form of breast cancer, my doctor opted to have me tested for the BRCA gene.  I am fearful on the results but preparing for the upcoming decisions either way.  I have been doing some research on the internet and see that BRCA 1 and 2 not only increase your risks with breast cancer and ovarian cancer but also colon and pancreatic?  Does anyone else know that this is true or is this just another untruth the internet is full of?

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  • PT6
    PT6 Member Posts: 76
    edited May 2009

    I am BRCA2 +. I was diagnosed with Stage 1 breast cancer in 1978, This is before the genes were identified. I had a right modified radical mastectomy without reconstruction. I was 29 and just could not face additional surgery - reconstruction was not to great at that time. I was finally tested for the gene a couple of years ago and came out positive for BRCA 2. I have been hemming and hawing about what to do with this information. Note that it has been 31 years since my original diagnosis of breast cancer. Well, the gene just came back to haunt me and I have develped DCIS grade 2 (very treatable) in the left breast. This time I will have a mastectomy and with reconstruction eventually get rid of my ovaries but note that I had 31 years without problems. Everyone must make the decision that they are most comfortable with but remember that there are several paths.

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  • tweekerbeeker
    tweekerbeeker Member Posts: 93
    edited May 2009

    Gabi, here I am writing to you again 1 year later. I have had both an oophorectomy and bilateral mastectomies. The main thing is that you alone must decide how much risk you can tolerate. You doctors should let you know that surveillance does not =prevention, and that if they do find cancer again, there are no guarentees that they will find it at an early stage or that they will be able to treat it effectively.

    I am doing well after my surgeries, but I did enlist the help of my CGC and a psychologist at the cancer institute before my mastectomties. My PS was great, and I look and feel like they are MY breasts. If you have not done so already, read The Breast Reconstruction Handbook by Kathy Steligo. Also, check out www.facingourrisk.org.

     

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