Update on Amy Robach

Septmom
Septmom Member Posts: 150
edited June 2014 in Just Diagnosed


I just saw the update on Amy Robach's diagnosis. She says that a secondary malignant tumor was found during her mastecomy surgery that wasn't seen on the mammogram, MRI or ultrasound. I thought an MRI would pick it up. I just had a lumpectomy and started chemo Nov 14. I had an Mammogram and ultrasound right before my lumpectomy which just showed the one tumor on the right breast and that there was nothing on the left side. This makes me wonder if I have something on the left side that wasn't detected my an MRI. Makes me nervous if MRI's can't be trusted. Any thoughts ladies?

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    MRI is just another imaging source, and is fallible - both for false negatives and positives. Mammography missed my 2cm breast lump, but it was seen on ultrasound. Pre-surgical MRI missed ADH and ALH in the non-cancer breast, which was discovered on post-operative pathology because I chose a BMX instead of a lumpectomy. The MRI also missed two positive nodes, one of which was 6mm (1/2 cm), on the cancer side.

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  • Septmom
    Septmom Member Posts: 150
    edited November 2013


    Thanks Special K, it does make me nervous about relying on a MRI. I have been seriously considering a mastecomy after I am done with chemo. I have dense fibrous breasts and I get fluid filled cysts that come and go. I thought this particular one was a simple fluid filled cyst too. I think I will prob get to skip radiation if I get the mastectomy. Thanks again!

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    septmom - I was a lumpectomy candidate initially, but I had been closely followed for more than 20 years for very dense and fibrocystic breasts. Because mammography did not see the palpable 2cm lump due to density I had no faith that imaging was reliable for me going forward, so I didn't want to leave breast tissue behind only to have a recurrence or another primary down the line. I also usually had several cysts in each breast, so self-exam was not particularly useful. I realize that BMX does not negate all of the risk, but I felt it was the best choice for me. I made this decision prior to discovering that I also had positive nodes unseen by the MRI. My sentinel was positive for 20 IST, my surgeon insisted on a full axillary dissection due to my being Her2+, and that was done 5 weeks after the BMX. In that surgery the 6mm node was found further up in the axilla. I felt it was further evidence that I had done the right thing for myself.

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  • Septmom
    Septmom Member Posts: 150
    edited November 2013


    Thanks SpecialK, I have fibrocystic breasts too and that is what is causing me to stress. I will be talking to my oncologist this week regarding a BMX. I spoke to the nurse practitioner at my breast surgeons office regarding a BMX after chemo. She spoke to the surgeon and said to make an appointment with her when I am a month away from completing chemo and we can go over everything then. I wish I had to mastectomy to begin with. Oh well. It's still not too late. Thanks again! You are such a dear for dear for always responding to everyone on this board.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    You are sweet to say that - I am here to help if I can, just like people did for me when I was first posting!

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited November 2013


    Hi, Septmom - just a word of clarification...


    I had very heavy, dense, fibrocystic breasts that always showed negative for cancer on mammograms. I begged for an MRI or an ultrasound, but my stupid PCP refused, and I never fought for it.


    Fast forward to two years ago when some spontaneous bleeding from my left nipple caused him to change his mind - fast! I never got my MRI, but I did have seven different biopsies. I chose BMX for many reasons, mostly family history.


    Going into my surgery, I had no idea if the cancer had spread to the lymph nodes. They did a sentinel node biopsy during the procedure. If it had spread, I would have had chemo.


    I also had no idea if I would need radiation... if the tumors were too close to the chest wall, and they couldn't get clear margins, I would also need radiation, even though both breasts were removed.


    I think there is some misconception that BMX lets you skip other kinds of treatment. It can, depending on the final pathology report, but nothing is really certain until that report is finished.


    I wish you well as you complete your chemo!!! And please keep us posted as to how you are doing...

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  • beacon800
    beacon800 Member Posts: 922
    edited November 2013


    wow, just saw this. Very unsettling to see that imaging missed her second tumor. I did not read how large it was and possibly it was small? Anyhow, sounds like her choice of bmx was excellent. Poor thing, it is very scary to hear about hidden rumors. Good to hear she is done with this surgery.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2013


    each type of imaging is a tool, and sadly, imperfect tools at that. I wish we had the infallible tools we so desperately want. Ms.Robach also had a positive sentinel node according to a news report I heard.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2013


    Mods,


    Could you please correct the spelling of Ms.Robach's last name in the thread title?


    Thank you

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  • dlb823
    dlb823 Member Posts: 9,430
    edited November 2013


    Septmom, an MRI is only as good as the docs/techs doing it. Thankfully, most are extremely competent. However, very occasionally -- and certainly no reason for alarm -- something slips through the cracks, as it did with me. I not only had 2 lesions my first surgeon totally missed (she got the largest 1), but a 4th lesion that was so small it had not shown up on an extremely high powered MRI @ UCLA that found 2 others that had been missed. (Complete story on my bio page.) Without knowing the details of Amy Robach's case, upon first reading, I'm guessing maybe that second lesion was 1mm or less, which may not show up on MRI.


    After a uni-mx, I now get MRIs (both sides) every 2nd year as part of my regular screening.


    My best advice from my experience is just be sure you have a medical team you totally trust -- not just one you like. In other words, if you have lingering concerns you can't shake that something might have been missed, or anything else just isn't adding up, it never hurts to get a second opinion elsewhere, just to put your mind at ease. (((Hugs))) Deanna

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  • jill47
    jill47 Member Posts: 351
    edited November 2013


    It happens. My BS pushed for a lumpectomy, rads & tamoxifen if ER+ but I decided bmx b/c of age at diagnosis, family history & not wanting biopsy's for years to come. Had the pre-op MRI, just the one tumor seen. Most bmx LCIS on bc breast & ALH on the healthy breast (note lobular not ductal) identified. MO said on my 1st visit w/ him post op...bet you are glad you had a mastectomy. You betcha I was. MRI and CT...all imaging tools, not perfect.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited November 2013


    thanks, as always, to our great mods!

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  • AmyQ
    AmyQ Member Posts: 2,182
    edited November 2013


    "thanks, as always, to our great mods!"


    Like button!!!

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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2013



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  • new2bc
    new2bc Member Posts: 559
    edited November 2013


    My MRI missed two 4mm tumors which were discovered after the surgery. My Breast surgeon was happy I chose mastectomy.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited November 2013


    Sometimes it's just missed. I had mammogram and ultrasound. DCIS in right breast. Decided on BMX due to family history of hidden BC in undiagnosed breast. Found 1.6 cm tumor in Left breast. Yep that makes the 4th time in my family. Just FYI. I could not do an MRI because of my pacemaker. It might have shown up. Both BS and P'S were surprised. Me? Not so much.... LOL

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  • JaneB1
    JaneB1 Member Posts: 47
    edited November 2013


    I had a 3mm tumor and numerous microinvasions, none of which showed up in the MRI. As my BS said, "it was a surprise". I guess you can never really know until the final pathology is in.

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  • jessica749
    jessica749 Member Posts: 429
    edited November 2013


    Wow Special K. Didn't realize that about the SN…thank goodness your BS insisted on more. Hopefully for those of us who only got the SNL dissection because 'studies prove' that it's sufficient, we were not unlucky. LIfe: what a crapshoot!


    and re db23-while technology can only be as good as the people using it, I think the point others are making above is important and don't want it lost: No matter how top notch the machine, the technician, the doctors, the imaging modality is limited in some respect, none are 100% perfect, and that is why with certain risk patients they screen in more than one modality…But all of them still won't guarantee 100%…even with the world's greatest radiologist, technician, etc. It's an important point, and one I was sadly ignorant of re mammograms (an old story on this board). I thought because I went to a 'great' place, where two 'great' radiologists read my report, with 'great' up to date machines, that mammograms for me would be highly effective. But no, even Larry Norton of MSKCC has said that even at Sloan, mammograms are only about 80% effective under the best circumstances…i.e. miss 20%. I don't have the data on the others, but let's just say they can't be much better (as mammograms have been chosen as most effective for general population), just different.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2013


    Jessica - I was the exception to the rule on nodes - but both BS and MO were very insistent at the time that the nodes come out. I was confused by this initially - and resistant - because they are both progressive and it felt knee-jerk, backwards, and reactionary to me, but I realized later that they had seen this before and it was too much of a gamble with Her2+. Thank goodness they were absolutely right! The vast majority of those with a micromet in the sentinel are indeed correctly classified as node negative and can be treated more conservatively, but yes, it is a giant crapshoot!!!

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