My BRCA1 breast cancer was not seen on my mammogram

Options
janinev
janinev Member Posts: 4
edited June 2014 in High Risk for Breast Cancer

I just want to alert anyone who might be...or suspect they might be...BRCA1 positive....

I was lucky that I felt my lump and was able to bring it to my doctor's attention. She then sent me for a diagnostic digital mammo and ultrasound "to be on the safe side". What was truly scary is that both my doctor and the radiologist reading the scans said that my lump did not feel like OR look like cancer!

I owe the radiologist my life because he asked for my family history (my paternal grandmother, and paternal aunt both had breast cancer...and another paternal aunt was killed by ovarian cancer) he then insisted that I stay and have a core biopsy that same day "just to be sure". The next week I was told that I had Stage1 IDC.

It's just my opinion, but I want to strongly urge every young woman out there with a strong family history of breast and/or ovarian cancer (on your mother's OR father's side) to insist on a biopsy for any palpable lump. Had my radiologist shrugged off my "it doesn't look like cancer" lump and if I had not had that biopsy, my cancer would have been found at a later and more dangerous stage.

· Share on FacebookShare on Twitter

Comments

  • marie5890
    marie5890 Member Posts: 3,594
    edited December 2010

    Just a bit of confusion on my part that I hope you ca clear up.

    BRCA1 really isn't something you see on a mammogram or US. It's a genetic test that show whether or not you have a gene (BRCA 1 or 2 ) that pre-disposes you to a higher risk of cancer, right?

    Its a GENETIC test. NOT a mammographic or ultrasound test, right?

    If someone IS found to be either BRCA1 or 2 positive, then they are at higher risk. But that is not the same as finding a lump? 

    · Share on FacebookShare on Twitter
  • marie5890
    marie5890 Member Posts: 3,594
    edited December 2010

    Just to be clear those Newbies reading this thread..

    BRCA1 or 2 is determined by a GENETIC test. It is not something seen on a mammogram, ultrasound or MRI. It determines whether or not you carry a specific genetic mutation that makes you at higher risk for breast cancer.

    Mammograms, Ultrasounds, MRIs are screening/diagnostic tests to see what is actually happening inside the breast tissue of your breasts.

    It's important to keep these very distinct and specific tests separate and distinct of each other. One is a genetic test, Others are the actual screening/diagnostic tests.

    There is enough fear and confusion for women when it comes to breast cancer. We dont need to confuse ourselves even more by mis-understanding the various tests and technologies available to us. 

    · Share on FacebookShare on Twitter
  • LISAMG
    LISAMG Member Posts: 639
    edited December 2010

    I think the above poster may have missed the point here, with all due respect. I do understand what you are trying to convey, but janinev has made an excellent point about BRCA1 related cancers. They are often aggressive, high grade, triple negative and sometimes not easily detected. I do not find any confusion here, but perhaps just a mis-understanding, thats all. Janine, thanks for increasing awareness with HBOC! What type of treatment are u having? Best wishes for a complete recovery too.

    · Share on FacebookShare on Twitter
  • jgreen4
    jgreen4 Member Posts: 8
    edited January 2011
    Janinev, thanks for posting. I am going through 2nd trip with BC. Both times my mammo showed "nothing of concern". Both times I had to beg my dr to do something besides "watch". Both times turned out to be triple neg, stage II, grade 9 breast cancer.  We must be our own health advocates!!  Yes, history, genetic testing, self-exams (we all know our bodies better than anyone else, right?)  must all be used when determining whether a lump should be considered suspicious.
    · Share on FacebookShare on Twitter
  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited January 2011

    Janine - thank you for your post. My maternal grandmother and a maternal aunt both had mastectomies. I was told that does not make me high risk. My mother had a lumpectomy in her 30s, B9, thankfully. Another maternal aunt died from bone cancer and my paternal grandmother died from ovarian cancer. Every doctor has told me these are not primary family members so no increased risk.The Gail test, et al only asks about mother and sister.  I don't have a sister, so nothing to factor in there. No one has ever suggested testing. I am not sure what the family "thresh hold" is for the test, would my case be compelling or no? 

    So they tested you and you are BRCA 1? Has your mother ever had breast cancer? Thank you, sorry for so may questions! I see similarities in our family history.  

    · Share on FacebookShare on Twitter
  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited January 2011

    Mammograms arent perfect for sure. My radiologist told me that it misses about 20% but much of those missed are lobular. Glad you found it. Hugs, Mazy

    · Share on FacebookShare on Twitter
  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited January 2011

    Carpe...I have 2 maternal great aunts and one paternal aunt who had breast cancer. My doctors have always considered me high risk. When I filled out the paperwork for the BRCA 1&2 tests, the 2 great aunts alone qualified me. In our cancer center there are pamphlets stating that if you have 2 cousins or 2 aunts or etc...that you should be vigilant about getting your mammograms and checking yourself. So to my docs you would be high risk. Just wanted to share that. Hugs, Mazy

    · Share on FacebookShare on Twitter
  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited January 2011

    Mazy, thank you and Wow. I am a little upset right now, I really had no idea - and I even had breast surgery a few years ago, you think someone may have mentioned this.

    I feel like we are marginalized somehow in this whole process by the medical system, even made to feel like worryworts if we bring up a concern! I am learning much through this site, thanks again and hope you have a good day.  

    · Share on FacebookShare on Twitter
  • mamaoftwo
    mamaoftwo Member Posts: 267
    edited January 2011

    I am told that BRCA positive women should alternate screening mammos and an MRI every six months to be safe that everything is caught.  I am BRCA2 and have IDC, seen first on an MRI on December 2 then confirmed by core biopsy completed on December 13. 

    On December 6, when the cancer was definitely there based on the above tests, I had a mammo plus ultrasound and the radiologist report says that they show no signs of cancer, and the report directs me to return in December 2011 for another screening mammo.  Scary.  If there's something suspicious doctors shouldn't rely just on the mammogram.

    · Share on FacebookShare on Twitter
  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited January 2011

    Thanks, mamaoftwo, once again this proves MRI is the best diagnostic tool we have. What is it about the MRI that makes doctors "stingy" - is it the cost? I wish a new breast specific MRI machine that costs the same as a mammogram could be invented so we can all stop fighting these battles.Tomorrow morning is the appt where I speak with my primary care doctor about getting a referral for an MRI. After spending much time out here reading stories like yours, I feel strong and ready for this discussion.Thanks to all of you!

    Love your name, btw! :-)

    · Share on FacebookShare on Twitter
  • Mazy1959
    Mazy1959 Member Posts: 1,431
    edited January 2011

    Good luck !!!

    · Share on FacebookShare on Twitter
  • janinev
    janinev Member Posts: 4
    edited January 2011

    My apologies about any confusion with my post. I was trying to stress that in my opinion...from my own experience and from things I have read...that young women with a strong family history...who may or may not have been tested for BRCA...who discover a lump...should insist on having a biopsy to either confirm or (hopefully) rule out cancer. BRCA1 cancers (in particular) have a bad reputation of either developing rapidly during the 12 month period between scheduled annual mammograms, not showing up on mammograms at all (even though they can be felt), or appearing benign in presentation during imaging tests. And, if a medical professional reads these womens' tests and shrugs it off as "nothing to worry about" or "just something to watch" based on the imaging alone, it's possible that her tumor would be left to grow and become a harder stage to treat.

    At the time of my biopsy, I was aware that three, 2nd degree relatives on my father's side had breast or ovarian cancers...but I had not been tested for BRCA. Apparently, my radiologist knew "what to look for" and insisted on the biopsy. A few days after my cancer diagnosis, I took a saliva test in my surgeon's office that (4 weeks later) confirmed I had the BRCA1 mutation.

    But before my test results came in, I had already opted for and underwent a prophylactic double mastectomy with reconstruction. Once healed from the initial cancer surgery, I had 4 cycles of chemo (TC), the implant exchange & port removal surgery, and a complete da Vinci hysterectomy...all in the past 9 months. My energy level is still quite low, I have the joint pains of a 90yr old, and my hair has grown in to a gravity defying "chemo fro" :)

    I am so grateful that I had the well informed, "let's do a biopsy to be on the safe side" type of radiologist. His diligence quite possibly has saved my life...and I hope that by sharing this with some of you, other lives may also be saved.

    · Share on FacebookShare on Twitter
  • janinev
    janinev Member Posts: 4
    edited January 2011

    Regarding my BRCA "saliva" test...

    I know that most BRCA tests are done with bloodwork...but there is also a test called "Saliva Buccal Wash". It's quick and painless...just swish, swab and spit in to a cup. The cup is sealed and sent to Myriad Genetics in Utah. The results come back in 3 to 4 weeks. It's expensive too,  as much as the blood test...just over $3,000...insurance paid for mine.

    My surgeon said the saliva test was relatively "new" and "hard to come by"...so maybe you have to ask for it specifically and see if your doctor can get their hands on it. It sure did beat getting stuck with a needle :) 

    · Share on FacebookShare on Twitter
  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited January 2011

    Janine - thank you for coming back to clarify.  I have several 2nd degree relatives who have had breast cancer and ovarian cancer.  Most of the time, this is disregarded since it isn't my mom a sister (I don't have sisters).  So you are BRCA 1 with second degree relatives, and that is what I needed to know, it is possible.

    I still don't understand the difference between BRCA1 cancer and others - is one type of BC more prevalent in BRCA1 women than in those without the genetic issue? Thanks to anyone who can answer. 

    · Share on FacebookShare on Twitter

Categories