Another breast MRI after abnormal mammogram?

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dbronson1
dbronson1 Member Posts: 9
edited June 2014 in High Risk for Breast Cancer

I was wondering what I should do about the information I received today. I had a normal bilateral breast MRI in August of 2010. This past week I had a bilateral diagnostic mammogram which showed "an architectural distortion at the lumpectomy site on the right breast" and the report recommended I get another breast MRI. My surgeon says to wait six more months and then get another mammogram.  This makes no sense to me since the current mammogram is not clear it its diagnoses.  I am concerned with the waiting game because my original breast cancer was stage III DCIS, 5 centimeter tumor, with 10 involved lymph nodes.. HER 2 positive...ER/PR negative.  The original tumor grew to this size in a six month timeframe. Should I insist on another MRI after 4 months or wait another 6 months? I am extremely nervous about this..

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  • jo1955
    jo1955 Member Posts: 8,543
    edited December 2010

    dbronson1 - If I was in your shoes I would insist on another MRI right away to confirm the information you have right now particularly if the diagnosis is not clear..Or I would try and get further clarification on the current MRI  If your last tumor grew that fast, it would make me extremely nervous to wait another 6 months.  Once we are dx'd with BC everything makes us nervous.

    What treatment are you in now?  Chemo, rads?  

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

    If I were in your shoes as well, I would also insist on the MRI now and not wait. 

    You used the words "stage 3", by any chance did you mean Grade 3? 

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  • dbronson1
    dbronson1 Member Posts: 9
    edited December 2010

    I am 3 and one-half years post treatment. Have had 2 excisional biopsies and one cyst removal from non-cancerous breast since treatment ended. This new finding is on the side where my original tumor was found and treated successfully with chemo, radiation, and Herceptin, lumpectomy, and lymph node dissection.

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  • dbronson1
    dbronson1 Member Posts: 9
    edited December 2010

    Hi, Actually my cancer was staged at stage III and my tumor was a grade III as well. I am going to email my breast surgeon since I have only talked to her secretary and not directly to her. I am thinking she suggested waiting due to my insurance, but I am willing to pay for the test just to have peace of mind. Thanks for your quick response it has really helped me.

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  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 369
    edited January 2011

    Hi Ladies,

    I had 2 lumpectomies done on my right breast the fall of 2009.  I had chemo December 2009 - February 2010, and radiation therapy 30 treatments March 2010.

    I had a follow-up mammogram September 2010, it showed all clear as far as there being no cancer, however it did make mention of 'architectural distorion' in the breast that the lumpectomies were done in. (the doc did not tell me what this distortion means).  The radiologist report from the mammogram indicated that I do not need another follow-up for another year, showed no concern in the report to the distortion... hmmm go figure?

    You ladies know what a architectural distortion is and maybe this is caused by having two lumpectomies done and also a revision of the margins done as well...

    Thanks Charmaine

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  • Fearless_One
    Fearless_One Member Posts: 3,300
    edited January 2011

    I wouldn't want to wait 6 days, never mind 6 months.   I would follow up on further diagnostics.   If they won't accomdate you, see another doctor.   Hopefully it will be nothing, though.

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  • Annabella58
    Annabella58 Member Posts: 2,466
    edited January 2011

    "Architechtural distortion" is exactly what you think it is...it is noted because if you had an MRI and if it revealed a cancer, or something else, that the mammo did not pick up, they are now covering their a**es as mammos often do not pick up things.  It's the reason we all get the "note that breast is dense" letter and the covering of their a**es in case they missed something.  We live in a litigous society.  We that have had a bc diagnosis, now will most especially get these little notations on our reports.  Since they said "one year", that sounds perfectly AOK, esp. with your node free status.

    That said: (or typed :) )

    Ask your oncologist.  I am assuming that he got a copy of the mammo report (he should have, call the radiologists' and ask them to send him one) and then make sure it's nothing.  Also ask him if you should have an MRI if he feels it necessary.

    My MRIs are now annual.  My mammos were all fine, never picked up 2nd cancer at all so MRIs are well worth it if your onc feels it is necessary.  Insurance will cover it, if he writes them a letter.

    Sounds perfectly fine, tho, but do please follow thru on it, just to be super sure!

    best of luck!

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  • Annabella58
    Annabella58 Member Posts: 2,466
    edited January 2011

    dbronson:

    I'd go straight to your oncologist and put this to him.  Since your original was HER2N+, I would insist on another MRI within a month.  Since you had node involvement, this is crucial.  Do not waste time on your BS, but go to oncologist!

    Good luck!

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  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 369
    edited January 2011

    Anniealso:

    Thank you so very much, and yes when I get an appt with my Medical Oncologist I will ask if there is a possibility I can get a MRI.

    Charmaine

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  • dbronson1
    dbronson1 Member Posts: 9
    edited January 2011

    Reply to all who responded to me:

    I did email my breast surgeon, who by the way is wonderful, and there was a huge communication problem between me and her office manager which never should have taken place, the BS said. The office manager completely overstepped her boundaries on what she told me and misinformed me.  She ( the BS) emailed me back within one day, conferred with the radiologist herself, looked at my films, and emailed me back  on New Years Eve,(which was the very next day) that their consensus was I did need another MRI because of the architectural distortion being so close to my chest wall.  The BS is now fighting the insurance company on my behalf to pay for the MRI, because I already had an MRI within the last 12 months and they do not want to pay for another.  I am now waiting the insurance companies final decision. IF they do not pay, I will find another way to pay it.  As of Jan. 21st, it will be ONE month since the radiologist said I needed the MRI...I am not waiting much longer!!  As for my oncologist, he referred me to my breast surgeon who is a breast surgeon only, she does no other types of surgery, just breast cancer.

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  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 369
    edited January 2011

    dbronson1:

    Re the architectural distortion that you have, is it causing problems for the arm that you had the lymph nodes removed from, ie are you having limited motion of the arm because of there being probable problem with the distortion up in the chest wall area?

    Thanks, Charmaine

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  • dbronson1
    dbronson1 Member Posts: 9
    edited January 2011

    Charmaine:  The architectural distortion is not causing me any problems with range of motion or lymphodema. although I have had some problems in the past...

    Everyone:  Good news! My breast surgeon got my insurance company to pay for my breast MRI and I have it scheduled for Jan. 31st, 2011!  I am so HAPPY to have it covered, to have a wonderful breast surgeon who goes the extra mile for her patients, and I will let everyone know the results of the MRI as soon as I get them!

    Thanks again for all the help and advice from everyone.  It was greatly appreciatedLaughing.

    Dawn 

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  • dbronson1
    dbronson1 Member Posts: 9
    edited January 2011

    Charmaine,

    I posted a reply stating that my architectural distortion was not causing me any swelling of my arm. However, since I made that post, I am having severe swelling of the right breast, which is the breast with the architectural distortion. Now I am sincerely worried that the cancer is back, because normally the right breast, since radiation, is smaller than the left breast. What do you think?  I will get my MRI on Jan. 31st, so I should know by next Thursday or so what is up.

    Thanks, Dawn

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  • marie5890
    marie5890 Member Posts: 3,594
    edited January 2011

    Dawn, I don't know what to think by what you posted. Hope all the confusion clears for  you soon and you know what you are factually  dealing with soon. This bullcrap of poor information just sucks!! You need FACTS not imagination or illusion to mess wit your head or with trying to find the most pro-active course of treatment!

    God Bless! 

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  • charmainejensenvoisine
    charmainejensenvoisine Member Posts: 369
    edited January 2011

    Dawn, I am going to make an appt with my surgeon and discuss the architectural distortion with him and try and request an MRI and/or Ultrasound of my right breast with him, although the radiologist findings did not appear overly concerned.  I have done some research on the net about architectural distortion and all points to possible suspicions and recommends further investigation.

    I am more concerned because too of what is happening with the upper part of my right arm/shoulder being frozen and how I cannot raise it and wonder if this is relative to what is happening. (also there is a bit of swelling in the upper part of my chest on the right side and has been for awhile and feel this relates to what is going on with my arm)

    I have heard of other women having problems similar with their arm/shoulder freezing that have had architectural distortion and/or after going for radiation therapy and from repitive motion of their arm/shoulder from radiation therapy.

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  • dbronson1
    dbronson1 Member Posts: 9
    edited February 2011

    Just to let everyone know my MRI came out clear. However, I am still having severe breast lymphedema. I have sent yet another email to my breast surgeon about that, and am awaiting a response. I belong to two bc support groups, and no one there has ever heard of breast/chest lymphedema without arm lymphedema.  I seem to always be the odd one....LOL

    Thanks to all who responded!

    Dawn

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  • Binney4
    Binney4 Member Posts: 8,609
    edited February 2011

    Dawn, breast lymphedema alone isn't all that uncommon (and it's even more common now with the lumpectomy/SNB+rads combo). But doctors are slow to recognize it and diagnose it, and often don't know what to do about it anyway. Here's information about it:

    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    A well-trained and experienced lymphedma therapist will be able to help you reduce the swelling and learn how to keep it that way. You need a referral from ANY doctor on your team. Here's how to find a therapist near you:

    http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

    Be well!
    Binney

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  • dbronson1
    dbronson1 Member Posts: 9
    edited February 2011

    Hi Binney,

    Thanks for the information!  I have been to a lymphedema specialist, who was also a PT,  when I had arm lymphedema and she showed me all the tricks to keeping it at bay...I also have a compression sleeve for that, which seems to have (thankfully) gone by the wayside...at least for now... That is what I am trying to do now is get someone on my medical team to respond to me and get me a referral back to the lymphedema specialist that I went to before.  Thanks for letting me know that this is NOT something that only pertains to me...I was starting to think I was abnormal LOL....

    Keep the Faith,

    Dawn

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