How many ways can I really increase bc

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rosie83
rosie83 Member Posts: 26
edited February 2017 in High Risk for Breast Cancer

Frustrated, sick of the six month follow ups I quite for a few years. New lumps so went back to dr to start all over. Reading up on the new info I realize so much dr's never said about risks.

Biopsy hyperplasia

Moderate BPE (MRI)

Prolific changes

Dense 75-100%

Mom had bc twice starting at 32!

I mean really wtf, I don't want to do MRI Thursday. Find it or leave me alone. Can't do the goddam tests over and over. Especially when it repeatedly says can't see, may obscure blah blah bla

Comments

  • marie5890
    marie5890 Member Posts: 3,594
    edited January 2017

    Rosie,

    Ever have any genetic testing done? What have your MRI reports shown? They pick up everything, so much so they are notorious for false-negatives, and are really good with dense tissue.

    Sounds like you are very much at high risk. By staying on top of the testing, if you get BC, and you very well may, it will be caught early.

    The *2* biggest risks of getting BC are 1)being a woman and 2) getting older. You also have 3) strong family history so you may very well have 4)genetic mutation that makes it more likely that you will.

    I just lost a friend 2 months ago. She was 34. She was BRCA + and her mother had BC years earlier. Jenny was Dx-ed with BC at the age of 31.

    She left behind two sons, 5 and 7, and a husband.

  • edwards750
    edwards750 Member Posts: 3,761
    edited January 2017

    OMG Marie that is horrible. So young and with young children. This disease is so epidemic.

    Rosie - I bet you are sick of it. I didn't have scans or MRIs so I can't relate to that but I can certainly understand your frustration. My mother and sister both had and have BC. We never took the test to determine if we carried the gene. I have a daughter and 3 granddaughters so I'm hoping they will be tested.

    Good luck on your tests. Surely there is a stopping point to all of that for you.

    Diane

  • rosie83
    rosie83 Member Posts: 26
    edited January 2017

    the old MRI reports said moderate BPE, prolific changes. Follow up every time. I guess it all lights up so can obscure lesions , so sensitive but didn't pick up cysts that us did. Negative brca but relatives won't get tested.

  • marie5890
    marie5890 Member Posts: 3,594
    edited January 2017

    MRI's don't normally pick up cysts.

    What MRI's are meant to do is look for blood flow. Cancer needs a blood supply. The thing is is that other kinds of lesions, including the B9 ones, can also have a source of blood flow. That is why they are notorious for false negatives

    I haven't kept up to date on the latest genetics for BC, but I am aware that they have come across a couple of other genetic mutuals other than BRCA1 and BRCA2. I would have a discussion with your doctor about them.

    So when you say your relatives won't get tested, I am assuming that includes your mother as well? Do you know specifically what kind of breast cancer she had (there are something like 22 different kinds).

    I know testing is a pain. I see from your older posts that you have younger children. I hope, for their sake if nothing else, that you stay up to date with testing.

    But that is a choice only you can make in the end. And it is indeed your choice to make.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited January 2017

    Rosie - I did expanded testing here https://www.color.com/?utm_source=bing&utm_medium=...

    The high risk screening sucks.

    Regular hyperplasia or atypical?

    You are smart to get your full reports.

    I've read on these boards that taking tamoxifen for a while may reduce breast density. Might be worth asking about. I had those extremely dense breast too, and mine was missed. My radiologist said it was like looking for a snowflake in a snowstorm.

    Good luck. Keep your head up. Big hug.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited January 2017

    I had expanded testing, too. I unexpectedly found 19 cases of cancer in my 1st & 2nd degree relaives-- lots of breast, uterine, and colon cancers, and others. Turns out I'm BRCA negative, but positive for PALB2, the Pathway And Locator BRCA2. Some scientists think it will eventual be labeled BRCA3. I also have the Chek2 mutation. My risk of BC was over 45%. My risk of colon and pancreatic cancers are 2-3 times the average. My 23YO daughter also is PALB2 & Chek2 positive. Her risk of BC is over 58%, so now she's on surveillance every 6 months.

    I sense your anxiety. Given your family history, I don't blame you. But if you have only been tested for BRCA, may I suggest that you may want to have expanded testing. There are several less common genetic mutations that can cause BC.

  • rosie83
    rosie83 Member Posts: 26
    edited January 2017

    I talked to insurance yesterday, they suggested to do MRI. Then they found me a breast specialist that does something called ABUS and said that after MRI maybe try that also. They also said they were brca 3&4 test with more gene tests and that I should do those as well. We went through all the pricing and everything is so much cheaper than it was five years ago. So needle to say I have calmed down. I hate the worry, but with four kids...I worry about $$ more. Thk God for bcbstx. They r better than dr at comfor

  • BG46TN
    BG46TN Member Posts: 286
    edited January 2017

    Definitely get tested for more genetic mutations...My sister had bc 3 years ago, at that time all my sisters and I got tested for the BRCA genes (I have 5 sisters) we were all negative....I thought I was pretty much "in the clear"

    well 3 years later, I find a lump and its bc....I had a full panel genetic testing done and have the BARD1 gene mutation, high for breast cancer slight risk of ovarian. My sister went back and asked for that test...she is ALSO positive for this gene (I wish they had tested her for it 3 years ago) and now my twin sister got her results back and she is also pos for BARD1....(she does not have any bc at this point) my other sisters are still awaiting results)

    Anyway, my point is with your obvious family history, you should ask for a full panel of genetic testing, have you mom tested too...do it for the sake of your own children.

    Sorry you have to deal with this, I hope your MRI comes back clear!

    Becky

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2017

    My brother was diagnosed with Stage 4 breast cancer March 2015, and at the time he didn't do genetic testing, but I did. I was negative for the "known" breast cancer genes (6 or 7 of them). A couple months pass by and I'm still concerned about this cyst that I've had for a couple of years. I even had it drained and it was all clear, prior biopsy/MRI in 2009 was benign too. Well guess what, 6 months after my brother's diagnosis I found out that I had breast cancer too. Genetic counselor ordered a full panel of 22 genes, and it showed I had a variance in Bard1. But it's categorized as "benign" according to the polyphen/sift tests.

    My brother finally got tested, and he is BRCA2 positive, and so is my sister so she's going to do preventative surgery for ovary and breast. Genetic counselor is still scratching her head on what happened with me. But what I wish someone would tell me is whether I should remove my remaining breast. I want to have yearly MRI or at least 3D mammo + ultrasound, but it's like pulling teeth to get my oncologist just to order an ultrasound. So I just ask my gyno and she does it. I also remember a lady here who goes to Los Angeles every year to get a special type of digital ultrasound instead of having an MRI.

  • rosie83
    rosie83 Member Posts: 26
    edited January 2017

    my mom will not get tested, she will not participate. She got caner at 32 and again at 36. She won't got to dr's period since all that except for primary for asthma med. I don't even know the types she had. She kept no records.

  • pegasus68
    pegasus68 Member Posts: 73
    edited February 2017

    Rosie, I'm sorry you have to deal with this, and I feel you pain. Just posted my own rant in this forum.


  • VanillaPudding
    VanillaPudding Member Posts: 36
    edited February 2017

    I posted the following in the Benign conditions forum but am hoping to get some answers here.

    I have a few questions about the role of BPE in breast cancer screening.  Hoping someone can clarify and educate me as I prepare for another round of screening.

    Quick Google searches yield interesting information.  From what I can tell, increased Background Parenchymal Enhancement (BPE) is another risk factor for developing BC.  I also understand this is different from density.  BPE is only measured from an MRI.  MRI is used as an additional screening tool for dense breasted women, not all with dense breasts have increased BPE, correct?  Are the two related?

    Density is greater depending on age, younger meaning more dense.  Is there an age correlation for BPE?  I think so, meaning closer to Menopause the higher BPE?  Sorry, this is a new term for me and I am trying to learn more.

    How is my risk increased given I have extremely dense breast (listed as severe, with very little adipose tissue <95%) AND Marked BPE.  So my take on this is mammograms are very difficult to read due to density, and previous MRI notes marked BPE making diagnosis and interpretation more difficult. I also get Ultrasounds, which usually detect up to 150 measurable cysts.  Ouch. The only BC in my family is second and third degree.  I am 46.  My sister did have a preventative Mastectomy due to ADH, ALH, FEA and PASH. 

    How important is BPE for increasing the risk of Breast Cancer?  Is BPE just another benign condition?  I have a long list of other benign conditions, just wondering what affects my risk the most.

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