How aggresive should I be?

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beachlover4
beachlover4 Member Posts: 2

Hi all-

Looking for a little input/advice....I am 38 (39 in Sept.) and have a strong family history of breast cancer in my family on my mom's side.  Mom had DCIS in R breast in 2006-she was 54 and pre-menopausal, Grandmother passed away from metastatic breast cancer in 2004, her mother died of bc, also a couple great aunts and a couple of my mom's cousins have also had bc.  My mom was tested and is BRCA 1 and 2 negative. 

My dad's side has strong history of colon cancer. 

I started with a mammogram at 35 and then another at 37 and will have another next month.  I have been fine so far. My doctor is very pro-active and aware of my history as my mom is her patient as well  :) 

I guess I am just wondering - I have been thinking lately about prophylactic bilateral mastectomies and just wanted some feedback or thoughts.  I also work in the operating room- I am a surgical technologist so I see breast cancer from the other side as well.

Thanks for your time....

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    Hi beachlover4, so long as youre "up to date" with yourself as in, youre satisfied that all is well at the present time,  if it were me,  I would really really look at this website and cruz around getting info on all this. You have time to get wised up PROPERLY so you can make an informed choice. There are heaps of posts about all this.  You are still very young and there are lots of things to be taken into account, like how is it going to affect you relationship -wise, are you going for reconstruction and if so, do you know the ins and outs of that. Have you thought of being tested for the BRCA 1&2? 

    I think you will find that nobody would outright tell you one way or the other, what to do, coz you see, everyones needs are very individual and at the end of the day its a case of YOU weighing up all the pro's and cons and those are different for every single person on this earth. 

    All the best with your decision.

    Musical

  • thegoodfight
    thegoodfight Member Posts: 560
    edited June 2010

    It is my understanding that if your mom tested neg for BRCA's then you cannot have the gene.  It can only be passed from someone who is positive.  At least that is what I was told when I tested negative, that my daughters cannot have the gene.

  • Alicia70598
    Alicia70598 Member Posts: 191
    edited June 2010

    Hi Beach,

    I wish I thought about this option before I was diagnosed. You can still be high-risk without BRCA or even a family history. You can even find a surgeon who does nipple sparing procedures. Another option is to take Tamoxifen to reduce the risk.  

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    thegoodfight,  correct me if Im wrong but what about if the gene is from the Father or Male side of the family?

  • HappyTrisha
    HappyTrisha Member Posts: 614
    edited June 2010

    You can absolutely inherit it from the male side of the family.  That exact thing is going on right now with my brother and sister-in-law.  She tested negative, he tested positive.  Their two children have a chance of inheriting from their dad.  In addition, I know that women with bc have a higher risk of colon cancer so I would think that it is possible that the reverse is also true - women with colon cancer may have a higher risk...

    My sister-in-law had an incredibly high incidence of ovarian cancer on her mother's side of the family, with a genetic component.  Her sister had tested positive and so had her ovaries removed after she had her two children and a few years later had a bilateral prophylactic mastectomy.  I think she kept finding cysts and just got tired of living with the higher risk.  I would think you would somehow need to show genetics, however, to get it covered by insurance and to get some kind of medical approval. 

    I personally would do it in a NYC heartbeat.  In fact, I did do it, but only one side was prophylactic.  The other was necessary.  I haven't regretted it for a moment. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

     Happy Trish I thought so. Thanks for your input. In NZ, it is my understanding that if  nobody has been tested in your family, they wont test you unless youve had BC.  Im waiting to hear whether I'll be accepted for testing based on a certain criteria. Inside a week I'll be like you.... one side necesssary and one side Prophy. Im not looking forward to the surgery but for me its the best choice, and, as I say, ALWAYS that choice is made choosing the lesser of 2 evils.

  • thegoodfight
    thegoodfight Member Posts: 560
    edited June 2010

    You are right Musical and I stand corrected.  I really should have known better since my family cancer history is on my dad's side.  So I guess my euphoria that my daughters (and son) are safe is not a safe bet.  I still feel my kids are ok as far as genetics since their dad (dh) is of Irish background with no history on his side.  My big risk was history on my dad's side and being genetically linked to ashkenani jews.  Of course my girls will do close monitoring because no matter what, they do have a mom with breast cancer and we know that only  a small percentage are actually from having the gene.   That's actually one of the positives of having being dx'd.  Now my children will be more diligent than they might have been if I wasn't dx'd.  No one can be too careful when it comes to this beast.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    thegoodfight, not a prob, sometimes we all make mistakes whether we shouldve known better or not  Smile . I agree, we need to be VERY diligent about fighting this beast unless of course your life doesnt mean much. Im not just glibly saying this either, and I fully understand there is a point of diminishing returns if youre suffering to the point of no quality of life. Each person has to weigh up the facts. What really needs to happen is a consolidation of the facts right across the board so people can make informed choices without having to dig and dig and dig through endless information.

    Yes I would be VERY cautious about thinking your daughters are safe, with their background as you state it, but now you know and therefore can choose your action.

    ALl the best

    Musical.

  • thegoodfight
    thegoodfight Member Posts: 560
    edited June 2010

    I am a little confused by your post Musical.  My daughters are 30 and 33 and at this point according to my research they are at no more risk than the general public.  All my doctors concur.  Granted that risk is much too high with I believe 1 in 7 women will now get bc in their lives.  The only difference is that knowing that I got it (and not until 63, post menopause) they are very aware and will do self exams regularly and hopefully stay one step ahead so that if they are the 1 in 7 they will catch it early.  When I said safe, I meant they have the knowledge that their mother does not carry the BRCA genes.  As I said their father is of Irish descent and has no family history of cancer.  There is no reason to believe he would have the BRCA gene.  If I have missed your point, please explain.  Thanks

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    Im not sure exactly what it is youre confused about. I do need to reword what I meant though, when I said, "but now you know and can choose your action"  .... typing thoughts down accurately sometimes doesnt come easy. I certainly didnt mean to convey that AS IF youde only just started research and knew nothing.

    Likewise if Ive missed your point feel free to explain.

    Cheers

    Musical.

  • sespebadger
    sespebadger Member Posts: 249
    edited June 2010

    beachlover4: Glad you are working with a doctor....but I would ask how else you could test other than by mammogram. I got a supposedly clear one in 2008 at age 48 and in 2009 my mammo showed "a little spot." Had a lumpectomy and lymphectomy. Didn't get clear margins and some of the nodes had BC....got a MRI that showed cancer in my breast "like a constellation." So, mammogram was not a very good diagnostic tool, IMO. So here I am Stage 3, had chemo and will need radiation. My Mom had BC 2 times at age 60 and 62. My onc. said they are seeing the next gen. get it a decade earlier (and here I am). I am BRACA neg. I have decided on a proph. BMX. Don't want to go through this again. No recon because of possible problems with radiation and also don't want to take the time. Hope this is helpful......My message: do everything that is available to find it early, or if you have had your kids and are done nursing, consider proph BMX. You might be able to save your nipples, and saving your lymphnodes is good too......

    Good luck and keep your eyes open! 

  • beachlover4
    beachlover4 Member Posts: 2
    edited June 2010

    Thank you so much to all of you for your incredibly helpful input.  I truly appreciate it!  I forgot to also mention that I have two daughters ages 20 and 15 (16 in Sept).  So I am done having kids for sure!  :) 

    I think the first thing I will check into is what my insurance would cover.  I think I am also going to talk to my doctor at my physical in Sept. about getting tested myself. 

    sespebadger: I am in complete agreement regarding mammograms.  My grandma was actually diagnosed with breast cancer when she broke her humerus pulling apart a shopping cart at the grocery store :(   They discovered that her breast cancer had already metastsized to her bones and she had a "clear" mammogram the year before!!!!!!  SO, needless to say - I don't have complete trust in them.

    Thanks again so much everyone!  This seems like a great source of support and information!

  • thegoodfight
    thegoodfight Member Posts: 560
    edited June 2010

    Musical,

    I guess I am confused that from your post I felt you thought I didn't treat mine aggressively...........I had surgery, chemo and rads and now taking Arimidex.  I also didn't know what you meant when you referred to my daughters "background".   As far as I know, and according to my inquiries, at this point they have no more risk than the average woman.  They just know that it can happen and it did happen to their mom.  

    beachlover4,

    Just in case you don't already know,  it is a federal law that all mastectomies and breast reconstruction costs from bc must be covered by insurance.

  • wyldblumusic
    wyldblumusic Member Posts: 59
    edited June 2010

    Hello, beachlover.

    Musical said it best.  It is a very individual decision.  All of us have differents levels of risk that we are willing to accept.  I also have a family history of BC and started screenings at 35.  I was diagnosed with DCIS at 39.  So far, I have chosen conservative treatment.  Early screening has worked for me, so now that I'm done with treatment, I plan to continue with screenings.  This road is not for everyone.

    I also wanted to add some information relevant to some of the other discussion.  I do not want to be an alarmist; instead, I'd like to think I'm being an advocate.  I admit that I could be wrong about that.  I wanted to share this information from the American Cancer Society for everyone's consideration...

    Family history of breast cancer

    Breast cancer risk is higher among women whose close blood relatives have this disease.

    Having one first-degree relative (mother, sister, or daughter) with breast cancer approximately doubles a woman's risk. Having 2 first-degree relatives increases her risk about 5-fold.

    Although the exact risk is not known, women with a family history of breast cancer in a father or brother also have an increased risk of breast cancer. Altogether, about 20% to 30% of women with breast cancer have a family member with this disease. This means that most (70% to 80%) women who get breast cancer do not have a family history of this disease.)

    Best wishes on your decision.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    thegoodfight

    "I felt you thought I didn't treat mine aggressively"

     Not at all ...if this is the portion that has offended you ....

    " unless of course your life doesnt mean much. Im not just glibly saying this either, and I fully understand there is a point of diminishing returns if youre suffering to the point of no quality of life. Each person has to weigh up the facts."

    ...then those words were meant in general and yet were supposed to be encouraging to you at the same time. I think we know (or is this a language barrier thing) that sometimes "you" can refer to people in general, and sometimes it refers to speaking in the 1st person.

    What I meant from "your daughters background" was exactly as I said it ,  "with their background as you state it, "  and in stating quite a bit of your family history as well as saying "you cant be too careful with this beast" I THOUGHT I was just simply agreeing with you.

    Hope that makes it clearer as to what I meant.

    Musical

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    wyldblumusic, Hi, our posts crossed and I didnt see yours before I posted mine. Thanks for that info. Id call taking on board that info as being pro-active and as you say being an advocate. Certainly not alarmist IMO. Yeah I have a Sister and a 1st cousin. The 1st cousin died at 36. Theres 3 others "further out" all died.

    Sometimes I rather think Id like to write down a list of "variables" that make every womans situation so unique. The more I think about it, the more I would find the list would be as wide as what the sky is high  Undecided

    Musical

  • thegoodfight
    thegoodfight Member Posts: 560
    edited June 2010
    Thanks Musical.................I think we have it straight nowLaughing

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