Mother and three sisters with breast CA

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DebbieG
DebbieG Member Posts: 7
edited August 2014 in High Risk for Breast Cancer

In 1991, my mother was diagnosed with breast cancer, had the breast removed and went through a round of chemo and radiation.  Six years later, she was again diagnosed with cancer in the other breast and had it removed.  She did not have to have chemo or radiation that time.  I do not know what type or kind of breast cancer it was, but I do remember the word "calcification" the second time.  She survived the cancer both times, and while she is still alive, she suffers from Alzheimers.

At age 44, my first sister was diagnosed with inductral carcinoma in situ and had a lumpectomy and radiation.  My second sister was diagnosed at age 49 with invasive ductral carcinoma, had a lumpectomy, chemo and radiation.  My third sister, at age 45, just received a pathology report from a biopsy and has the same kind of cancer as the second sister.

I am 42 years old and have "suspicious" mammograms.  Two years ago, I had a birad score of 4 on a mammogram due to calcifications.  Some of the calcifications were biopsied, but were clear.  I have had a mammogram every 6 months since and so far, everything is stable.  My concern is that the third sister's cancer did not show on a mammogram; she had a suspicious spot on the left breast that the radiologist recommended a MRI.  The MRI picked up the cancer in the right breast; the left breast is actually okay.  I go to a very reputable cancer center, but they have never suggested a MRI.

What is the significance of a mother and three sisters with breast cancer, and should I, or even can I, demand a MRI?  What should precautions should I take to make sure that if I develop breast cancer, it is caught in the earliest stage? 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    Debbie--having 3 or more relatives (primary or secondary) with bc meets the criteria for BRCA testing, and you have 4 (mom and 3 sisters) so you certainly qualify. I would think since you easily qualify for that, which is a standard set by the ACS, that you would probably also qualify for the MRI. The ACS is now  recommending MRI for people with risk of 20 to 25%; I would think yours would be at least in that range, if not a bit higher.  I would talk about your risk level with your doctor and discuss having both the MRI and the BRCA counseling/testing due to your strong family history.

    Anne

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  • cp418
    cp418 Member Posts: 7,079
    edited August 2008

    You should ask for an MRI given your family hx.  You more than qualify if anyone tries to give you any excuses not to have one done.  You must be proactive and demand it.

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  • Gracy101
    Gracy101 Member Posts: 15
    edited August 2008

    Debbie - I have a very similar situation to yours, mother with premenopausal bc and recurrence 12 years later, as well as a maternal aunt with bc.  My 3 older sisters have each had premenopausal bc at ages 45or46 in varying degrees of severity.  The last sister was diagnosed in July 2007 after having a had a clear mamm/us March 2007 and clear MRI December 2006.  She came across the lump herself during a BSE, stage 3 lobular carcinoma which was missed by all 3 scans. 

    I have been closely followed by ob/gyn since age 30 with mammos, then mammo/ultrasounds and finally mammo/us/and mri starting last year.  We kept adding the various tests/scans as each sister was diagnosed.  I would be very surprised if your doctor does not support you getting the mri in addition to mamm/us.  Your insurance on the other hand is another story, although we successfully appealed that approval last year based on family history.  The sister most recently diagnosed underwent genetic testing only to test negative.  We were told that we are "genetically suspicious" and that in all likelihood there is some gene mutation in our family cluster that has not yet been identified.  The genetic counselor I met with at the university cancer center in my city, as well as my sisters' genetic counselor at Sloan Kettering in NY agreed that I present with a "significant" risk to develop breast cancer, I believe an 85% probability based on the history.  I am 43.

    At a minimum, my ob/gyn, the surgical oncologist I consulted and the genetic counselors all stressed I continue with aggressive screening alternating between mamm/us and mris every 6 months.  They also suggested prophylactic bilateral mastectomy and after several months of consideration I underwent the procedure on July 3. I just couldn't continue living with the level of anxiety I had been experiencing since the beginning of the year.

    My choice, while possibly considered extreme, was the right one for me.  I feel it makes a huge difference to have had this procedure done on my own terms without the added emotional/physical toll of an actual cancer diagnosis.  I can't tell you how relieved I feel.  BTW, my pathology revealed several breast conditions, including stromal adenosis, that while benign at this time, might eventually have developed into bc.  

     I hope you don't mind me sharing my (lengthy) experience with you, but I hope that it will reassure you that you are well withing your right to absolutely demand on getting every single screening that's available.   That will be your best shot at catching anything.

     Good luch and God bless.  Gracy

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  • tam1953
    tam1953 Member Posts: 237
    edited August 2008

    I have a mother, maternal aunt, and maternal grandmother all diagnosed post menopause. I had suspcious lumps and frequent mammos, ultra sounds and biopsies. My first Dr. told me no MRIs as they read so many false positives. I went to another surgeon at a medical center and he arranged for me to have MRIs and assured me his staff could read them adequately. As a result of that, I was diagnosed with Stage 1 BC and opted for a bil mast with reconstruction. I figured my luck was up -- they found 4 tumors in one breast. I also insisted on BRCA testing. It was negative, but like the other post, I was told our family probably has a genetic mutation that hasn't been identified yet. I say push for the MRI. If the first Dr. doesn't agree to it, go to a Dr. with more training. Best wishes to you.

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  • DebbieG
    DebbieG Member Posts: 7
    edited August 2008

    I'm not sure what to do now.  I had an appointment yesterday with my surgeon, and since it is a teaching hospital, I saw an assistant first.  He said that he had never heard of doing an MRI based on family history, but I could talk to my surgeon about it.  When the surgeon came in, he said that what he felt was most important was the genetic testing and we could discuss an MRI based on those results.  He sent the genetic counselor in, and what she wants to do is test one of my sisters who has actually been diagnosed with breast cancer first, then test me.  Genetic testing is $3000.00--I asked.  Insurance may pay some, depending on the insurance company.  Then the surgeon came back in, said he thought it very important that I pursue the genetic testing first since my biopsy showed "atypical hyperplasia"---I was never told that; I was only told that it wasn't cancer, but I needed a follow-up mammogram in 6 months.  I've had 3 follow-up mammograms in 6 months intervals; all have been fine.  The radiologist said when I had the last one in July that if the one in February was okay, they were switching me to yearly.  I am not comfortable with this atypical hyperplasia, and I am not comfortable pushing any of my sisters into genetic testing they cannot afford.   I'm wondering if I shouldn't go somewhere else that will agree to the MRI. 

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  • leaf
    leaf Member Posts: 8,188
    edited August 2008

    When they do BRCA genetic testing, they often prefer to do the genetic testing initially on a family member who has breast cancer.  If they find a mutation, then they test the other family members for that one mutation. Have your relatives with breast cancer inquired if their insurance would pay for testing?

    There is a website that specializes in genetic testing and care of this type : http://www.facingourrisk.org/ 

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  • TheQu33n
    TheQu33n Member Posts: 162
    edited August 2008

    Debbie,

     Maybe the difficulty is with your insurance regarding the MRI and your surgeon isn't sure how to justify it?

    This isn't about me but I'm sharing my recent experience because I was having a tough time getting my MRI and I had the support of both my surgeons. My initial dx is DCIS - 1 is grade 2, the other 3 are grade 3 - with a little LCIS thrown in just to make it more interesting. No clean margins, and oops, the 2 original markers (titanium clips) are still in my breast. Even with these pathology results, my insurance would not approve the MRI initially. It was sad because I had the MRI scheduled and it had to be canceled the morning of.

    It was a frustrating battle of wit and reason, but a week and a half later I finally received the approval the morning of my appt. Point being, by law my insurance had to approve as I was already diagnosed and yet I still had to fight for my right! 

    As others have already stated, push the MRI, though be prepared to declare your case with your insurance company. You go girl - you have to be your own advocate and push like the little engine that could! Some times you've just go to do it over and over again.

    Good luck and I truly hope you get your MRI-

    karen 

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  • FayeFighter
    FayeFighter Member Posts: 58
    edited August 2008

    I agree. You should definitely push for the MRI.  My genetics counselor and oncologist suggested that my mother be tested for the gene first.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2008

    I got a call yesterday from the oncologists nurse.  She resubmitted his request for BRCA testing to my insurance company with more specific info, but apparently they are still  saying they will not pay as I do not fit the national criteria set up by the ACS.   I've always kinda been on the fence about having it done, but I had gotten myself mentally psyched to do it, so now I'm sort of frustrated. I have another mammo coming up in about 5 weeks, so I'll have that done and then discuss it again with the doctor. I could pay for it myself, but my risk for BRCA is pretty low, so I don't know if I'll go that route or not.

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  • florencedonna
    florencedonna Member Posts: 131
    edited August 2008

    Debbie,

    You should advocate for an MRI. 

    At your age you are more likely to have dense breasts, MRI picks up abnormalities in dense breasts better than mammogram. 

    Not only do you have 4 first degree relatives with breast cancer, your sisters were diagnosed at a young age which is even more suspicious for a genetic breast cancer.  You should consult with a genetic counselor.  If you are an Ashkenazi Jew, you especially should see an genetic counselor.

    What can you do to lower your risk of developing breast cancer?  Lower your circulating estrogen by lowering your body fat.  Getting fit will benefit you whether you get breast cancer or not.  Drink little alcohol. Regularly examine your breasts.  I know you already know these things !

    You should also become familiar with the signs of ovarian cancer since you may also be at risk for it. 

    I was diagnosed with breast cancer at age 43 with little family history, one aunt and a great grandmother.  My sister is a year younger than me.  When I was diagnosed, she said "well, I guess I should get that mammogram I've been putting off".  Her mammogram was negative.  Nine months later she felt a lump, her doctor immediately sent her for an MRI which was abnormal.  She had a 3 cm breast cancer with one positive node.  I felt a little guilty, like I gave her breast cancer.  I had BRCA testing done and it was negative.  My insurance covered it based on my age.  I live in Massachusetts and once my sister was diagnosed, my surgeon has advocated for alternating a mammogram and an MRI every six months.  My sister lives in Washington and her surgeon does not recommend this extra monitoring.  (My female surgeon has two sisters with breast cancer, I wonder if that affects her recommendations) 

    You should push for an MRI rather than wait for genetic testing because what if your family has a genetic cancer tendency that has not been identified yet.

    If you can get a breast MRI, you should read up on what to expect.

    I am sorry to go on and on here, this topic pushes my buttons because I worry that I do have a non BRCA genetic cancer and I worry my sister's medical team is not aggressive enough.

    donna

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  • Jeansbeans
    Jeansbeans Member Posts: 175
    edited August 2008

    Hi Debbie,  YOU  Need to get a MRI!  Wow, I thought I had a strong family history! I  am 54 and had IDC , Bilat mastec. in May, { I had my right breast which was cancer free  OFF, No way was I going to worry about cancer hitting me a 2nd time, All my DR's supported my decision!} My mother, Grandmother, and Greatgrandmother all had breast cancer and now a first cousin. we share the same grandmother!  My yearly mammo's came back clear. But, because of the strong family history, My GYN. and myself fought with Insurance co. for 3 mo. After 2 denials. I called and spoke to a supervisor and explained my concern. They finally approved an MRI. Guess what!??  I had 2 spots that biopsied positive for IDC!  I had a mammo done the exact same day that came back clean!  My dr. told me this cancer would NOT show up on a Mammo until I could FEEL it!  I am so thankful that I insisted an MRI as it was caught so early stage1 no nodes 1.2cm,0.05cm I do not need chemo or radiation, Only Tamoxifin for 5 years. I can live with that! I am now fighting for My 2 daughters ages 28 and 32 to have early MRI and Mammo screening done. It was highly recommended by the Mayo Clinic.I also had genetic testing done and I do not carry the gene, but it doesn't mean My sisters or daughters don't.  Because I had the genetic testing done first, My daughters only have a cost of $350. out of pocket if their Ins.Co. won't pay for it.  I don't know if they are going to have the test done. They aren't ready to make any drastic decisions yet.  But, they both have daughters to worry about some day. I strongly urge you to FIGHT for MRI and If you have a DR. who says it isn't necessary even with your STRONG family history, I'd be finding me a new DR.!! I will be anxcious to hear how you make out.  Please keep us posted and FIGHT FIGHT FIGHT for an MRI!!!!!!!!!  Good Luck and Gentle hugs to you and Your Mom and Sisters!!

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  • Sunshine1718
    Sunshine1718 Member Posts: 1
    edited August 2014

    my three sisters and I all brca positive we all had within months see our story at threesisterssurvival.com

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