Wisdom needed (along with MRI guided biopsy in BOTH breasts!)

Anonymous
Anonymous Member Posts: 1,376
edited June 2018 in High Risk for Breast Cancer
Wisdom needed (along with MRI guided biopsy in BOTH breasts!)
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  • DeepWaters
    DeepWaters Member Posts: 73
    edited April 2018

    Hello all! My story.....I'm 53 years old now. At 43 I had three biopsies on my left breast on the same day which were all negative. I have a strong family history of breast cancer and according to the high-risk breast doctor who cares for me, my GAIL score puts me at "extremely high risk" for breast cancer. I have "extremely dense breasts" which have resulted in me having bilateral breast MRI's yearly which have always been negative.

    As briefly as possible: A few months ago, I noticed a wet spot on my nightgown near my right nipple but decided I must have splashed washing my face. It happened a second time at which point I considered it might have come from my nipple and decided to pay close attention. When it happened a third time while just reading, I knew it was from my nipple and contacted my doctor right away.

    My doctor was able to express clear fluid from my right nipple. She ordered prolactin and thyroid tests which were normal. A mammogram and ultrasound of my right breast were normal. I was referred to a breast surgeon who also expressed the fluid and told me it was coming from a single duct. She sent me for my annual bilateral breast MRI a month early.

    This morning I got a call that they identified an area of concern in my right breast, but also in my left! That report from yesterday's bilateral breast MRI:

    "On the right there in the anterior 6 o'clock position there is a new 0.3 x 0.8 cm linear nonmass enhancement. This represents a change from all prior exams—the most recent of which was 11 months ago. It is unlikely to be seen with targeted ultrasound. MR guided biopsy is recommended.

    On the left there is a new 0.3 x 0.4 cm rim-enhancing mass in the 10 o'clock position middle depth. Targeted ultrasound is recommended. If ultrasound is negative, MR biopsy will be needed."

    Today's ultrasound could not see the mass on the left and so they are now saying I need MRI guided biopsies on both breasts.

    The doctor who came in to discuss this with me says that on the right it is Bi-rad 4b and on the left 4c.

    This has all happened so quickly that my head is spinning. I've been vigilant about breast care with annual mammograms and MRI's and ultrasounds whenever recommended. Just 11 months ago everything was fine and dandy and now I am facing not one, but two MRI guided biopsies—one on each breast!

    Any insight to the above report and what all this means would be greatly appreciated. Specifically, is a "nonmass" less dangerous than a mass? The doctor mentioned because it is linear in shape it could be following a duct. He is not sure if it is responsible for the nipple discharge or not. Also, he mentioned, "we don't like to see rim-enhancing masses" but then went on to say he was less concerned about that one on the left (the rim-enhancing mass) than the one on the right.

    I live in a very remote area and must travel almost two hours each way to get to this medical facility. A world-renowned cancer center is three hours away. Just in case, today I picked up all my records including CD's of all the mammograms, MRI's, and ultrasounds. Should I drive the extra hour each way to go to MD Anderson Cancer Center in Houston at this point? Or should I let the "local" (2 hours away) hospital do that?

    I'm so confused! Thanks for reading and thanks in advance for your thoughts and support!!

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2018

    Hi Deepwaters-

    We want to welcome you to BCO! We're sorry for the worry you're experiencing, we know how stressful the waiting can be. We have a thread where one of our members can help interpret your report. DJMammo is very knowledgeable and may be able to shed some light on what you know so far: https://community.breastcancer.org/forum/83/topics...

    The Mods

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  • bella2013
    bella2013 Member Posts: 489
    edited April 2018

    Deepwaters, welcome but so sorry you find yourself here. With your high risk of breast cancer I encourage you to drive the extra hour to MD Anderson in Houston. They have a breast cancer center and they are excellent at what they can accomplish. They also use the team approach which means you will have a breast surgeon, a medical oncologist, a radiology oncologist, and a nurse navigator who will be there to guide you and help coordinate all of your appointments.

    I just completed a BMX with DIEP Flap reconstruction eight weeks ago at MD Anderson here in Jacksonville, FL. I am very pleased with with my team and my treatment plan.

    I will be thinking of you and pray for an excellent outcome

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  • DeepWaters
    DeepWaters Member Posts: 73
    edited April 2018

    Bella,

    Thanks for the advice and encouraging words (and prayers!). My gut was saying get to MD Anderson. I've actually been there to have a very specialized skin surgery called Mohs on my face. That didn't really require a "team" other than the day of surgery but I felt great to be in the hands of such experts (including a single doctor who is a dermatologist/oncologist/plastic surgeon). An ocular oncologist was unexpectedly needed and brought in at the end of the surgery when the cancer was found to have traveled up to my tear duct. Where else would an ocular oncologist have been available with no notice!? It was a good experience and despite a huge part of the skin under my eye being removed, I have only the faintest scar that I have to lean close to the mirror to find! I only hesitate due to the punch to my work schedule and the need for overnight expenses for longer appointments. I know our lives are worth it, I just wondered if I could accomplish the same two hours away. I think the peace of mind MD will bring will go a long way towards healing. I called and found since I'm technically an MD patient already, the dermatologist who operated on my face will have to make the referral to the breast clinic there. It's their procedure.

    Thanks again for reading my long post and for the encouragement. It helps more than you know.

    Does anyone have some insight into the MRI report?

    Thanks,

    DeepWaters

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  • DeepWaters
    DeepWaters Member Posts: 73
    edited April 2018

    Thanks Mods! I had seen that thread where DJ Mammo helps with reports. But also had read the rules and it seemed I had, as a not yet diagnosed, to chose a single location of my post. It mentioned not to post in multiple places. I didn't want to break the rules of the forum by posting both in this location and that one as well. Thanks for the clarification. I posted my report there for some insight. I appreciate your response and thanks for what all of you do here!! : )

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  • MarilynIllinois
    MarilynIllinois Member Posts: 79
    edited April 2018

    Hello DeepWaters,

    I had a nonmass enhancement in one breast found in through a routine MRI last year. I am 68 and have a family history of breast cancer.

    My understanding of an MRI is that it is so powerful that it can identify "something" is off, but cannot tell what it is. My doctor recommended a MRI guided biopsy. The results were Pleomorphic LCIS. They asked me to have a 2nd biopsy since there was a 45% chance something invasive could be hiding. The 2nd biopsy found nothing invasive but more PLCIS. The recommendation was for a mastectomy which I had.

    I found the radiologist very helpful. He answered all my questions and showed me the suspicious areas on the screen. I asked for copies of my pathology reports ahead of time.

    I ended up getting a 2nd opinion because I wanted a another pathologist to confirm the Pleomorphic identification. The pathology from the mastectomy identified nothing invasive. The PLCIS was exactly where the MRI pinpointed it and nowhere else.

    Good luck to you! I hope your biopsy goes well and you like your new doctors

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  • DeepWaters
    DeepWaters Member Posts: 73
    edited April 2018

    MarylinIllinois,

    Thanks for the response. Your story has certainly convinced me that the biopsies are worthwhile! I don't know why but I just have it in my head that it's not cancer and that everything is going to be fine. Then, every once in a while, a breakthrough moment of sheer panic will creep in and scare the dickens out of me. Then I'm right back to being sure it's nothing.

    I'm taking it seriously. I know it's not right to have a clear nipple discharge from a single duct and then have findings on MRI that weren't there less than a year ago.

    I have my internal referral to the MD Anderson Cancer Center "Undiagnosed Clinic" so I'll be following up there.

    Thanks again for your insight! My best to you!!

    Deep Waters


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  • DeepWaters
    DeepWaters Member Posts: 73
    edited June 2018

    In case others are not following my other thread.... I wanted to jump onto this one and let you know that both masses were biopsied via MRI guided biopsy and both were benign! Yay! Here's to lots of happy, healthy breasts to us all!! I'm relieved but will continue to pray for and send great energy to those of you who didn't get the great news I received.


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