BRCA 1+ with low family history?

disneyphile
disneyphile Member Posts: 8
edited June 2014 in Genetic Testing

Diagnosed just 1.5 weeks ago.  No history in our family except my mom who had stage 1 BC at 73 and Oc stage 3C at 77. 

I am 48 and freaking out.  I will be having ovaries removed, but trying to be optimistic rather than defeatist, which is how I tend to feel.  Since there is no prior history of BC until my mom in her 70's, does that reduce my risk somewhat?  Also, I breastfed for 10 years...which seems protective.

I don't want to have a mastectomy.  I'm scared to death of it...I've been researching like crazy and have found many studies that support that not all BRCA families are the same and that the mutations are all different so that risk will be different.

 Anyone out there in the same boat as me?  I'm so lonely.  I'm an only child, none of my cousins have been tested yet. Every discussion board scares me as everyone seems to have cancer already or a really strong family history.  I feel old to have found this out and I worry I already have cancer everywhere.

 I guess I need some helpful words, or someone who is in a similar position.

Thanks for being here.

Comments

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited May 2012

    I am BRCA 2+ with no family history.  Well, BRCA 2 has a broader cancer possibility spectrum and there is some of the others but BC is not really present much in my maternal family tree (dad tested Neg).  I have been told that BRCA genes don't "always" trend.  For instance no cousins my gen with any kind of cancer (21 of us) just me.  Of the maternal aunts and uncles there are two with cancer... one with unknown source and one with pancreatic.  Mat Grmpa had prostate.  Theoretically there should have been more BC... but there is no telling.  Myriad doesn't release the specific gene mutation vs Cancer risk so there is no telling.  Again, I am not BRCA 1 but we don't have any trending in my family.  And my mom is 60 and has NEVER had cancer and gets all the tests.  

    Have you talked to a genetic counselor.  They are wonderful about explaining what the gene and gene possiblilites mean.  Having a genetic mutation like this is not a definate cancer card just a highly increased risk.  PLUS there are some studies that say we respond better to treatment when we do need it.  Sorry if this is confusing, I have chemo brain.  Hugs.

  • Karmil710
    Karmil710 Member Posts: 100
    edited May 2012

    Hi Disneyphile,

    I'm so sorry you are going through such a rough time.  The diagnostic part of treatment was the scariest for me.

    I'm BRCA2(+) and had my Ooph/Salp in Nov. 2011.   I was 47.  It kinda sucked to go through menopause this young, but to know that my chances of getting ovarian ca are lessened and to lower the overall amt of estrogen in my body makes it no-so-bad.  I'll do anything to be here for my family.

    The oopherctomy surgery itself was a breeze. Mine was laproscopic.   I was feeling back to myself in just days .  I actually started chemo 5 days afterwards! 

    I didn't want a mastectomy either, but I'm SO glad I opted for a BMX!  I didn't know at the time of my surgery that I was BRCA2(+), I just knew that I never wanted to get BC again.  With my family hx, getting rid of all my breast tissue seemed the best/only way to ensure that.  The surgery is not an easy one, but I see it as an investment in my future! 

    In my family there are about a dozen of us known to be BRCA2(+).  Only my grandma (who past away when I was 5) and me had BC. 

    Have you had your breast surgery yet?  Do you know any specifics about size, type yet?

    Have you found FORCE yet?  It's a wonderful resource for BRCA(+) women.

    Wishing you strength, sending you hugs

    Karmil

  • disneyphile
    disneyphile Member Posts: 8
    edited May 2012

    Thank you Karmil and Minimacsmom for your answers.  I don't have any diagnosed bc or oc yet.  I've had pain in my right ovary for 16 months, but just had an u/s last week and they found a 3.5 cm cyst that my doctor says is of no concern, but should be watched for growth.  However, since I have the BRCA1 mutation, I will be have oopherectomy as preventative in a few months...as soon as I can have my surgery scheduled.  I have met with the genetic counsellor,but I go to the high risk screening centre on May 10 for a mammogram and a consult.  I will be having an MRI as soon as that can be scheduled.  Right now its for Sept. 4 but I'm hoping to get in earlier.

     Cancer seems so inevitable.  I haven't found anyone yet who hasn't had cancer or some type of surgery.  Since I'm almost 49, I worry that there is something wrong, but as of yet, I haven't been checked so I don't know.  Last mammo was August 2010.  At the time, everyone was adamant that there was no way my mom's cancers were brca and I didn't need to worry.  

    I did have precancer of my cervix at age 24, but was told that was a virus and unrelated.  Now I'm not sure.  

    I'm glad to hear the oopherectomy was so easy.  Early menopause scares me and makes me worried about getting fat and having vaginal atrophy plus hot flashes.  

    If I do have any cancer of the breast, no matter how small, double mastectomy immediately, no questions asked!

    How do all of you cope with being BRCA?  I know BRCA2 has a better survival rate than BRCA1, but still, is this all my life is going to be from now on?  And can you make plans?  Do you feel you have a future?  I have 3 children, my youngest is 10.  I want to be around for a while...

  • Karmil710
    Karmil710 Member Posts: 100
    edited May 2012

    I also have 3 wonderful children, my youngest is 10 yrs old!  I plan to be around a VERY long time!  I make plans both long term and short term every day.  I feel confident that I will be around to see them through to completion. 

    Have you checked out the FORCE website?  It sounds like you could benefit from exploring that site.  Here's the link:  http://www.facingourrisk.org/support/find-support.php  I've also attended a FORCE support group for BRCA1&2.  That was really helpful.  There were people who were previvors & survivors, as well as people like you who just found out they had the mutation.

    I'm planning to go to the FORCE conference in Orlando, FL this fall. (An excuse to visit Disney!!!!)

    Many members of my family are/were BRCA2(+) and had no ca.  My father was one of them.  He died from complications of diabetes in his 70s.  Many of the older cousins in my fathers generation are now in their 80s and 90s.  Their children, who have tested (+) for BRCA2,  have decided not to tell them they(the older generation) are carriers.  So, yes, many people grow old without Ca, but you MUST have all the screening tests they recommend. 

    I'm glad you are having your appt at the high risk screening center soon.  I would totally try to move up your MRI appt.  Tell them you will take a last minute cancellation- hopefully you'll get in sooner.

  • disneyphile
    disneyphile Member Posts: 8
    edited May 2012

    Karmil:

    Thanks for the post.  It really helps to talk to someone who has a diagnosis and has such a positive attitude.  We're about the same age.  I have 3 boys: 16,13 and 10.  I would love to go to the conference as I love disney and go on as many disney trips and cruises as possible, despite being a canadian.  I will vigilant in my screening...I'm still undecided about the mastectomy but I need to talk to the surgeon and oncologist and the folks at the screening centre first, plus I need to see if I'm cancer free right now. That is my next big step.  

    How was surgical menopause?  Do you take hormones?  What happened?  Do you mind sharing your experience?

  • Mutd
    Mutd Member Posts: 148
    edited May 2012

    Disneyphile, to have both breast and ovarian cancer, it strongly hints at BRCA1. Ovarian alone isn't common at all, and to have it and br ca too is really rare, even in the 70s. And she could have inherited the gene from her father, so you shouldn't be surprised that there is not other "footprints of the mutation" left

  • Miller1353
    Miller1353 Member Posts: 84
    edited May 2012

    Disney, 

    I was you three years ago. I found out I was BRCA1+ on the day of my lumpectomy. I was given a 0% probability of being positive because I had no family history going back four generations...none. I was terrified and spent way too much time on the internet looking at scary statistics.

    So, I am going to give you the wisdom that I have gleaned so far. First, you are in the worst part of it right now. Things get better when you have a treatment plan and you begin to work it. There was a sense of calm once I knew the cancer was out and chemo was going in. It wasn't a cakewalk, but I worked the entire time, teaching third graders.  Second, I found that I was willing to do ANYTHING to keep this from coming back. Yep, that meant lumpectomy, mastectomy, chemo, and hysterectomy. People would ask me if I mourned the loss of my breasts. I did not spend one minute worrying about it. They were trying to kill me...rob me of the chance to raise my two daughters. If this had a statistical probablility of returning, it was a no brainer to go ahead. Next, being BRCA positive is not a death sentence. There is no greater chance of mets than if you were not BRCA positive. My onco said cancer in the breast does not kill anyone. It's when it moves out of the breast into bone or organs that a stage IV diagnosis is reached. With the hysterectomy and mastectomy, the docs put my recurrence rate at 5-10%, or less than the average woman who has never had breast cancer.  Last, this is a journey. You have every right to be sad, mad, cry, yell, or stay under the covers for a day, but just for a day. Don't troll the internet. Don't scare yourself silly. You are not a statistic. You do not have an expiration date. Every woman is different. Just because it happened to someone else does not mean it will happen to you. I think I have written enough cliches, but I hope you get that life does go on. Seek the best in the field, get a second opinion, and just start working your plan. Before long, you will find that you are stronger than you thought and you will help someone else on their breast cancer journey.  Best to you!

  • Karmil710
    Karmil710 Member Posts: 100
    edited May 2012

    Disneyphile: 

    Surgical menopause was a necessary evil.  It was not fun.  But having ovarian ca wouldn't be fun either...

    At first I didn't feel any different.  A few weeks later the hot flashes started.  (I was in chemo at this point, so that probably made it worse)  I also had vag dryness, but since starting Tamoxifen that seems to have gone away.  My sex drive is pretty much non-existant.  I haven't gained any weight, but have noticed some extra flab that I didn't have before, (but I used to be a big exerciser and have not gotten back into a fitness routine yet.)

    Surgical menopause sucks, but estrogen and ovaries are NOT our friends anymore.  And, I hate to say it, but menpause was just around the corner for us anyway...

    I just had my 1st bone density test.  I am worried about osteopenia, but I'm hoping that extra calcium and Tamoxifen will keep my bones strong. 

  • disneyphile
    disneyphile Member Posts: 8
    edited May 2012

    My mother has osteoporosis, but she is so small, only 5 feet.  I am almost 5'8 and I exericise and am slim, so I'm hoping to stave it off.

    I know that the ovary removal is necessary.  One good thing that might happen is that I will cease to have the pain from my cyst all the time.

    Thanks for the honesty...I appreciate it.  I'm sad,but what can I do?  I have to make the most of it.  The only issue is that I don't even see my oncologist until June5, I have a vacation planned for July10-August 5 that I really hope I don't have to cancel, and a wedding on Aug.18.  How long until you were up and about?   I was told to take 4-6 weeks off work, but that seems extreme.  I'd rather just take 2 weeks if I can manage.

    Right now all I want is to be cancer free until I get my ovaries out.  Then I'll see how menopause is and then decide about the mastectomy.  Somedays everything gets very overwhelming and do feel very lonely.

  • Karmil710
    Karmil710 Member Posts: 100
    edited May 2012

    If you have the surgery laproscopically you are up and about in just a few days!  I had gas pains for a few days & I was a bit sore, but really doing everything I needed to be doing withen a week.  I had 3 teeny incisions, really nothing major.

    I would take a week, or maybe 2, off from work.

  • disneyphile
    disneyphile Member Posts: 8
    edited May 2012
    Great to know.  Two weeks sounds very manageableSmile
  • megs986
    megs986 Member Posts: 39
    edited May 2012

    I'm BRCA2+ with no family history. I was diagnosed at age 32. There must have been women in my family to carry the gene mutation and not get BC. Talking to a therapist that specialized in helping women through decisions like this (she was at my treatment center) and the genetic counselor really helped me through everything.

  • lreith62
    lreith62 Member Posts: 18
    edited September 2013

    You will get thru this and all of us will help you

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