MRI results frustrating, need support and advice

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momtobac
momtobac Member Posts: 14
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi, so after my initial stereotactic core biopsy report came back with DCIS stage 0 on the right breast, my breast surgeon recommended doing a bilateral MRI to make sure other breast is clear as well as to get a genetic testing done. Doc called me to tell me MRI showed a quadrant on the left breast and a couple of new quadrants on the right breast that may or may not be of concern. She wasn't giving me any guidance on what to do from here which is frustrating. She says I should get a second opinion on the biopsy slide (which is what I asked her initially and she said to wait until biopsy after the surgery to get a second opinion which I found odd). In any case, I guess I am thinking of getting an mx of the right breast (the breast diagnosed with DCIS) and am considering getting a bilateral mx. I was hoping the MRI and genetic testing (braca analysis) would help steer me in either direction. Now she wants me to get another ultrasound of the specific areas picked up on the MRI. I already did an ultrasound initially after my first mammogram came up with suspicious areas. Sigh. Are the protocols she is suggesting normal? I feel like she's not really helping me figure out what my next step should be. I have an appt at Mt. Sinai so I hope the doctor there (Dr. Port) will be more helpful. I am a little frustrated and have lost confidence on the breast surgeon I currently have.

 Thoughts, advice, support would be greatly appreciated. I am still trying to learn as I go and there is just so much to take in and consider. 

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited March 2012

    Sometimes DCIS goes this way...It seems yours was caught VERY early, so the choices become harder to make, and all fall on you. in my own case, I had no choice and had to get a mastectomy because there were several DCIS places, or multifocal...so I had to get a mastectomy. 18 months later three more places showed up on my mammogram, and after an untrasound, MRI and biopsy, the results came back "inconclusive".

    I was so upset, and decided to have my second breast removed, because they could promise me no lymph nodes would be removed. It turned out there was no cancer...but I am still happy with my choice because now I have lymph nodes on my one side, so no lymph impairment on that side.

    I was never offered the gene testing, perhaps because I am the first woman with breast cancer ever in my family.

    I wish you the best with your choice, you are wise to post here, as well as read, so many experiences and sharing here...

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  • Cyn0619
    Cyn0619 Member Posts: 63
    edited March 2012

    Hi

    I was diagnosed with dcis on the left and had the MRI of both sides done before surgery and my MRI came back with 3 areas of concern on the opposite breast that looked like there was blood flow going to it so my surgeon said he was more concerned about that side than the cancer side. He seemed sure i had cancer on both sides. At that point I decided to do BMX and hoped to avoid further biopsies. I had already been delayed 6 months to have surgery because my primary doctor kept screwing up all my referrals my insurance required. I ended up getting 2 biopsies on the opposite side that came back benign but showed precancerous cells. I don't know if this is what lit up on the scan or what but MRI s do give false positives. I'm happy with my decision because I think I would of worried about those cells turning into cancer and would of ended up continuing to have biopsies in the future. Make whatever decision feels right for you and a second opinion might answer more questions for you. Good luck and take care.

    Cindy

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited March 2012

    Your dr is just trying to get information in order to help you make an educated decision. You have some time with dcis, although I remember that when I was in the testing-waiting-appointments-uncertainty phase you are in right now, it was extremely stressful and sometimes made me just want to "cut 'em off" ...but I'm glad I didn't.

    I was where you are a little over 2 years ago: stereo biopsy (after routine mammo in my early 40s showed micro-calcs) confirmed grade 2 dcis. Before deciding between mx vs. lumpectomy+rads, my dr sent me for genetic BRCA1&2 testing and MRIs of both sides. The MRI showed "something" on the other side, which led to an MRI-guided biopsy. Had I not done that biopsy, I would not have known that it was actually a false positive and thus no concern. The truth is your MRI could actually have picked up benign things on both sides -- lots of worry for nothing but unfortunately no one can know for sure without the biopsies. The genetic testing took longer to get back, and for me, thankfully it too came back with no concern. You mentioned genetic testing and I assume it is part of your decision-making.

     I chose lump+rads rather than have a mx, and for me, that was and continues to be the right decision. These are very very personal decisions and whatever you chose must be made with no regrets. 

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  • momtobac
    momtobac Member Posts: 14
    edited April 2012

    Thanks for all your replies. I ended up getting an ultrasound and it showed another possible area of concern on the right breast (the side with a DCIS diagnosis) and the radiologist couldn't find anything on the left side so it looks like that might be clear. I am now trying to decide if I should get another biopsy of the new area or just get a mastectomy. I guess the results of the genetic testing will help me make my decision. Now I have to start thinking about plastic surgery...

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  • mrkffr11
    mrkffr11 Member Posts: 74
    edited April 2012

    I too had DCIS left b found with calfications on Mammo.  Surgeon ordered MRI of both B and had 3 more biopsies as a result of MRI that were all B9. MRI is very sensitive and I think more prone to false positives. 

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  • momtobac
    momtobac Member Posts: 14
    edited April 2012

    How do I access the photos? I think I'm supposed to PM a member for a password but the two members I got (nowheregirl and timtam) were not listed on the members list. What am I doing wrong?

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