the return of the Fear

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CorasMama
CorasMama Member Posts: 20
edited June 2014 in High Risk for Breast Cancer

My mother died at age 56 of bc. Her doctors told me, due to her history, that I should get mammos and u/s every year from around age 30. Last summer, I had a painful lump that turned out to be nothing. The mammo information was worth little, as I have very dense, fibrous breasts, but the u/s turned up another big lump they needed to figure out. Even after mri, they couldn't tell if it was cancerous, so I had a mass excision biopsy in October. It was benign. I was supposed to get another mammo and u/s in 6 months, but other stuff has come up that has made it difficult to schedule. Now I'm up against a deadline for it, as we want to ttc soon, and obviously we need the all-clear first. I'm scared that something will come up again.



Mostly, I'm scared that even if I don't have anything malignant, something again like last year will come up, and I'll go through it all again.



I'm also scared of more surgery. I had the greatest breast surgeon, and he said he left me able to still breastfeed without problem. But I wonder if it would happen again. I don't even know if he did leave my breast as he said, won't know until we try, but how many surgeries can a breast take before it does become a hindrance, even with the best surgeon?



I'm sure I'll be fine. But it doesn't stop The Fear.

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Comments

  • QueenK
    QueenK Member Posts: 220
    edited June 2009

    First off.I am very sorry about your mom.No daughter should lose a mother that young and I am sure it was horrid, I cannot even start to imagine.

    Now, I can tell you this.I am in my early 30's and had breast cancer last year.If I could give just one minute back to the time before I was diagnosed I would have spent not even ONE second worrying about it.I would get the BRCA test, to see if it is genetic and go to your follow up visits.Please talk to someone about this.I have a mangled breast because the last thing my surgeons worried about what preserving it for baby feeding, because I did have cancer

    Just go to the follow up and try and live your life.I know its scary, but really truly living your life to the best way you can is my advice.

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  • CorasMama
    CorasMama Member Posts: 20
    edited June 2009

    We've decided to not do the BRCA genetic tests yet. My mother died about 6 months before they started doing the testing, so I don't know if she had it. But if I do have the BRCA gene mutations, those particular types of breast and ovarian cancer are unlikely to affect me until at least my mid-40s. And since I'm getting scanned every 6 months, it is a chance I'm willing to take. It's all about the balance, for me, and our insurance is perfectly willing to pay for my scans as often as my doc orders them.



    I don't want the specter of an 85% chance of breast or ovarian cancer hanging over my head for years before I'm willing to do anything about it, because we're not done reproducing. Since we want 2 more kids, we're going to wait to test until right after we have the last kid. If at that time, science hasn't come up with a better idea, I'll wait to get an oophorectomy until the last kid is 1, in case it interferes with bfing, and the radical mastectomy after they self-wean, or I may wean, in order to do the mastectomy when that kid turns 2.5ish, whichever comes first. (That timing puts me at about 40-45.)



    My breast surgeon says he disagrees with my plan not to get the testing yet, but he doesn't disagree with my plan not to do anything about it until after the last kid. I don't quite think he understands how, considering my mother, having that hanging over my head (if I have the mutations), but not doing anything about it, will just make me crazy. At least now, I can think that I have a less than 40% chance, and that my boobs aren't going anywhere!

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  • shabby6485
    shabby6485 Member Posts: 679
    edited July 2009

    Hi, I so understand your pain.  My mother has bc in her 30's and is well today. I am high risk due to genetics and atypical lobular.  After many scares (two lumpectomies) I am on a 6 mos MRI and mammo schedule.  I am due for the MRI this month. I already have knots in my stomach thinking about it.  I also have a vacation coming up so I am debating to do the MRI before or after.  God, how I hate this.....

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  • tweekerbeeker
    tweekerbeeker Member Posts: 93
    edited July 2009

    Hi Corasmama! Although the decision to test for BRCA is a personal one, I think you should know that there is one error in your thinking, and it sounds like you are counting on your surgeons for advice instead of a Certified Genetics Counselor. They are the specialists in this area. You would do well to have a genetic counseling session, even if you do not have the genetic testing.

    Your error is simply this"-But if I do have the BRCA gene mutations, those particular types of breast and ovarian cancer are unlikely to affect me until at least my mid-40's"-that is simply not true. It would be nice if it were true, but the fact is that just as the test cannot tell IF you will get cancer, it also cannot tell WHEN you will get cancer. I know of many women whose families get it later in life, then end up getting cancer themselves in their late 20's!! If you go to www.facingourrisk.org , you can post and get a lot of responses to this-it is a site devoted to hereditary cancer. Also, this is where advice friom a CGC comes in.

    My mom died of BC at 59, and I am brca2+. I know the fear of that risk hanging over your head. But I agree with your BS that you should see about testing, though you may not wish to have surgery now-or ever! Surgery is NOT the only option. BRCA testing may be helpful for other family members, and give you access to better screening and programs. Think about it.

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  • katherella70
    katherella70 Member Posts: 38
    edited July 2009

    CorasMama,

    I'm 38 (still deciding on which surgery) and can definitely relate to your fears.  I've been getting mammos since I was 32 and have had 3 rounds of core biopsies.  My mom (@ 42) and grandmother both had breast cancer which led me to believe I carried the gene mutation. However, from what I understand only 10% of women with BC have the gene.  While I was tested and am BRCA negative, I still feel like there has to be some sort of hereditary element. For me getting tested was empowering to have more information.  :)

    My Warmest Regards,

    Kat 

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  • butterfly137
    butterfly137 Member Posts: 106
    edited July 2009

    CorasMama....I understand your fears...I really do.  Read my profile.  But stay with this site, there are SO many wonderful women, and men, who will be here to uplift you.  I was just diagnosed with NOT having cancer, but am still welcomed to stay on this site, and you know what,  these women have kept me sane ever since =).  Hang in there, and I don't know if you pray, but there is also a prayer thread....you should look us up if you want.

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