Both Her2+ and BRCAII+

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phoenixsmom
phoenixsmom Member Posts: 58

Hey guys.  I just found out the results of my BRAC testing today and it turns out I have the mutated BRCA II gene.  I am also HER2+.  Just wondering if there are any others in the same boat as I think this is pretty uncommon. 

Comments

  • Brenda_R
    Brenda_R Member Posts: 509
    edited October 2009

    When I asked my Onc about a Braca test, he said my kind of cancer (her2 positive) isn't BRACA positive.  I've since found out it can be, but it's rare.

  • phoenixsmom
    phoenixsmom Member Posts: 58
    edited October 2009

    I have a big breast cancer cluster in family history so I was tested anyway, even with the her2+ status.  I know its rare, thats why I was hoping to find someone with a similar case.  I feel extra scared now.

  • sunflower59
    sunflower59 Member Posts: 13
    edited October 2009

    Hello!  I am also HER2 positive and I'm currently waiting for the results of my BRCA test.  My Genetics Counselor did tell me that it's uncommon.  After reading your post, I'm glad I went ahead with the test! 

    Laurie

  • phoenixsmom
    phoenixsmom Member Posts: 58
    edited October 2009

    I guess its good to know for our families and for future treatment options, but I have to tell you, I feel worse somehow now that I know this.  I have been positive most of the way through all of this, but finding out I might also need my ovaries out is really depressing.  I thought I was almost done with this crap.

  • mmm5
    mmm5 Member Posts: 1,470
    edited October 2009

    Hi PHX

    I know this can be disheartening, I think this stupid BC is just so hard to get away from. I was dxed a year before you and I am getting on with my life but I like you am PR positive and still dealilng with the hormone crap.

    One thing to think about is the ovary removal is fairly easy and you most likely are already dealing with the symptoms of menopause from chemo induced menopause.

    Many of us that are NOT brac positive still need to make those decisions as well because it is hard to control estrogen at a younger age. Tamox is not always a viable solution with HER2 positive BC.

    One of my friends locally here had BC 6 years ago she was HER 2 positive and ER positive BRACA2 as well. She was stage 3b with tumors in here nodes as well. She had only 5 months of Herceptin due to lowered MUGA, then a hysterect. 6 years later she is very fine.

  • phoenixsmom
    phoenixsmom Member Posts: 58
    edited October 2009

    I'm glad to hear your friend is doing well (and you as well).  I'm just bummed because I've been so positive through all this, and now I find out that there's more!  Just want it to go away please!

  • mmm5
    mmm5 Member Posts: 1,470
    edited October 2009

    I hear you and some days still feel that way as well. I am now just getting second stage recon, and scheduling OORPH. It has been a year and a half for me and I think GOD just let this be over. I try to be thankful that this is all I am dealing with as many are dealing with much more, but no matter what it is still hard and it is all relative for each of us in our own moment.

    Let the feelings out, try not to be tough and be angry, sad, get a good night sleep then start over again tomorrow! Also ask about ovary suppression if you are not ready for a surgery.

  • phoenixsmom
    phoenixsmom Member Posts: 58
    edited October 2009

    I don't know if I want to do that.  We were planning our second child when I was diagnosed, so this is especially hard for me right now.  That  just makes everything so permanent.  I'm looking into my other more natural options right now.  15% increased risk isn't that high if you think about it.  Alot of things will increase your risk of cancer by that amount.  If I were BRCA1 my risk of ovarian cancer would be 60% higher, so I would most likely have the surgery.  My bilateral mast. is in a couple of weeks.  One thing at a time.

  • mmm5
    mmm5 Member Posts: 1,470
    edited October 2009

    I understand and hope you find the right Doc's to help get you to where you want to be.

    Good Luck

  • helena67
    helena67 Member Posts: 357
    edited October 2009

    Hi,

    I saw some of your posts. I am BRCA2 and HER2+. My impression is that BRCA1 carriers have a tendency to have triple negative, basal-like tumors whereas BRCA2 tend to have ER+ and PR+. But to be HER2+ is also possible - I don't think it is extremely rare. Not common, but there is more of us around....I am sorry about what you are going through and planning for a second pregnancy. That may not be possible now, especially since you have a hormone positive cancer. I don't know what they recommend - maybe wait a few years? Regarding the oophorectomy, I don't know your age but usually that is not urgent until you are at least 35 or even older, 38, 40.

    I had a prophylactic mastectomy and oophorectomy. I was diagnosed during pregnancy and my life was a big mess. Consult with an oncologist and a geneticist that you like and trust and then find the best strategy to deal with all of this. It will take time.

    Best wishes,

    Helena.

  • helena67
    helena67 Member Posts: 357
    edited October 2009

    Hi mmm5

    Long time no speak....Glad to read your BRCA2 friend is doing well! I finished Herceptin a few weeks ago and I am feeling, what shall I say, STRESSED (isn't that an understatement....)

    Now what? I could use a big glass of wine or 2 but that is not that good either...

    Undecided

    -Helena.

  • mmm5
    mmm5 Member Posts: 1,470
    edited October 2009

    SO glad to hear from you! I was so excited to be done with Herceptin I got my port out the next day. But I understand what you are feeling I stll feel stressed 5 months later. I go from being very excited about the rest of my life and almost blissful to scared to death and crippled with fear.

    I am having a hard time wiht determining hormonal treatment and just talking to the ONCS again so often annoys the Heck out of me.

    What hormonal meds are you taking? How was your OORPH? Are you having SE's?

    I am on the bisphos trial so I still get a lot of good treatment and time for questions etc. Herceptin is still very well thought of and much lower recurrance rates. That being said people to recur and it just worries me sick.

    I look with interest at the new trials but don't know if i could bring myself to go through treatment again so soon.

    My friend had very similar stats to yours and is doing just beautifully and she has a much better attitude than mine....I wish and I work very hard to get there.

    Be well and stay in touch!

  • lexislove
    lexislove Member Posts: 2,645
    edited October 2009

    phoenix,

    I just wanted to say that many woman Er+ or BRCA+ have the decision about ovary removal. BUT.....just because you test positive for a gene doesn;t mean you will get ovarian cancer.

    I say take some time to think...if you really want a second child , I'm sure an ooph can wait a few more years. Still talk with your docs though. Good luck.

  • phoenixsmom
    phoenixsmom Member Posts: 58
    edited October 2009

    Its just a whopping amount of bad news to take in is all.  Today my mother told me she also has breast cancer.  Unf**ngbelievable.  I'm sorry I'm not very good at this support group stuff, sometimes its just nice to get it out.

  • orange1
    orange1 Member Posts: 930
    edited October 2009

    That's what we're here for.  Vent away - no need to hold back.

    phoenixsmom - I have seen some results that indicate that ILC responds particularly well to Herceptin.  I'll try to find the details for you next week - going camping in the rain this weekend. 

  • helena67
    helena67 Member Posts: 357
    edited October 2009

    Phoenix,

    Also wanted to add that your prognosis for the breast cancer itself is not changed (is not any worse) because of the BRCA2 status. It will also not affect your treatment. And I second what lexislove is saying, the oophorectomy can probably wait a few years (based on your age). Although an oophorectomy will lower the risk of developing breast cancer in the other breast. But if you were planning a preventive mastectomy, that issue will go away. Lastly, some people choose to monitor and don't do the surgeries. Also, lifetime risk for ovarian cancer (which usually develops at a later age compared with breast cancer) is about 25% for BRCA2. The risk is higher for BRCA1 carriers. Anyway, you have a lot to think about - so, you should take all the time you need and talk to the experts.

    Best Helena.

  • helena67
    helena67 Member Posts: 357
    edited October 2009

    Hi mmm5,

    I am on Femara and I also get Zometa every 6 months. I am not in a study though at the moment. I tolerate it OK, sometimes I feel stiffness in my joints (especially feet and wrists). A little hot flash here and there, but it's not too bad.

    And I have trouble sleeping at the moment. Big time. But I think that is due to stress (and possibly a side effect of the Femara). I need to do something to feel less anxious. Maybe yoga classess or something. I am the kind of person who worries and likes to plan in advance, you know.

    LOTS of bad hair days!! LOL

    Take care,

    Helena.

  • orange1
    orange1 Member Posts: 930
    edited October 2009

    phoenixmom:

    From New England Journal of Medicine, October 20, 2005 "Trastuzumab plus Adjuvant Chemotherapy for Operable HER-2-Positive Breast Cancer" (typically referred to at "The Joint Analysis" study)

    Supplemental Figure 2. Forest plot for event hazard ratios corresponding to disease-free survial:

    Risk ratio by tumor type:

    Ductal 0.51

    Lobular 0.15

    These numbers mean that for IDC, Herceptin cut the risk of recurrence to 51% of what it would have been without the Herceptin - essentially cut the risk in half.  For ILC, Herceptin cut the risk of recurrence to only 15% (NOT by 15%, but to 15%) to what is would have been without the Herceptin.  This is a phenomenal result - but the number of patients with ILC in this study was small - so not absolutely definitive - but still impressive.

  • ElaineD
    ElaineD Member Posts: 2,265
    edited October 2009

    I'm HER2 and BRCA2.

  • stlcardsfan
    stlcardsfan Member Posts: 466
    edited March 2010

    I know this is an old thread, but I am a newer to this forum.

    I had the test done in March, and lucky me, found I was BRCA 2 positive as well.

    Lump option out the window even though the TCH is working, after 4 treatments the mass is gone. So looking at Bi-lateral, and probably ovaries out. I am only 42, married, and no kids. I am doing Chemo first as the mass was to large for surgery, as they were thinking lump after Chemo.

    Would love to hear from others in this situation to see what you did. My life has basically been turned upside down the past three months.

  • JacquelineG
    JacquelineG Member Posts: 282
    edited March 2010

    phoenixsmom

    I don't know if you're still looking at this thread since it is old but I just wanted to let you know that ovarian cancer for BRCA2 tends to be later onset than BRCA1 - so some doctors say you can monitor until you are done with kids and deal w/ the ovaries after age 40. Both my sister and I are BRCA2 positive (with no prior history in the family). I had BC and she had a prophylactic mastectomy but is holding off on the oophorectomy because she may want another child (she is 38) I was 40 when I had mine.

  • Mouse6
    Mouse6 Member Posts: 246
    edited March 2010

    Hi there stlcardsfan & JacquelineG...

    I noticed that this is an old thread too, but would like to keep it going. I just got a letter last week telling me my genetics results are in. I have an appt with the dr on Apr. 13th to discuss.

    stlcardsfan - I did chemo first as well because we were going for lumpectomy until they found a second tumour in same breast near the chest wall. Even though I don't know the results of my genetic testing yet, I've decided on prophlactic mast on the other side as well. I'm finishing up chemo this week, and scheduled for surgery at beginning of May.

    What stages of treatment are you guys in right now?

  • stlcardsfan
    stlcardsfan Member Posts: 466
    edited March 2010

    Mouse6 - So far had 4 out of six treatments of TCH (Taxotore, Carboplatin, Herceptin). I just noticed, we are almost the same diagnosis. Have you had nodes checked yet? They checked mine when the Port was installed.

    Due to finish Chemo on 4/28, then 6 weeks later have surgery. Will be on Herceptin every 3wks until Jan 2011.

    I meet with surgeon on 4/19 to go over options, of which there really aren't any other than bi-lateral in my opinion. Not what I wanted to think about, but I really do not want to go thru Chemo ever again. And as my loving hubby pointed out, I am small to begin with (barely an A) so the rebuild as he puts it will be quick. I know he is trying to lighten the mood. Have no clue what type of reconstruction to have at this point.

  • Mouse6
    Mouse6 Member Posts: 246
    edited March 2010

    That's great news about your nodes! I didn't realize they could check them during port placement. Are they recommending radiation for you or not?

    I had a needle biopsy done on an enlarged node at the time of my breast biopsy. Both were positive, so I know I am node positive. They have since seen a couple of more nodes that look "suspicious" so I'll be having a full axillary node dissection on the right side.

    I don't blame you for feeling the way you do about bilateral. You have to listen to your intuition. Reconstruction is a whole other ball game. So much to think about. If you don't need to have radiation, implants would probably be a great option for you. It also leaves the other options open if needed.

  • stlcardsfan
    stlcardsfan Member Posts: 466
    edited March 2010

    The radiation question is on my list to ask the Doc next time I go in on 4/7.

    Originally it was yes, as they were thinking lump. May still be yes with bilateral. I really don't know at this point, but will do whatever I need to at this point. Tumor classified as T2.

    They did my SNB at time of port placement. The had already been checked with ultrasound and none looked enlarged, so surgeon went ahead and did all the injections with the blue dye and pulled out the two sentinel nodes. Since both negative, they told me no more have to come out. All my other scans came back clean too.

  • Mouse6
    Mouse6 Member Posts: 246
    edited March 2010

    Whether or not they do rads probably depends on where the tumour is. If it's near the chest wall, they will probably want to give you radiation to your chest. But it sounds like because your nodes were clear, you wouldn't need radiation to your armpit or your neck, so that's great!

  • stlcardsfan
    stlcardsfan Member Posts: 466
    edited March 2010

    If I remember correct from the Breast MRI - it is 2 cm from chest wall.

    Lower corner in the 4 to 5 o'clock postion. As of today, I can't find it anymore, so the TCH before surgery did it's thing.

    Will be asking doc on 4/7 to see what he says.

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