Anyone? DX as benign, find out later it wasn't

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Wrinklequeen
Wrinklequeen Member Posts: 45
edited March 2015 in Benign Breast Conditions

Ladies,

Has anyone ever gotten the phone call that says BENIGN, but find out later that the diagnosis was wrong?

I just have a weird feeling about my diagnosis of benign. They did the diagnostic mammogram, ultrasound on the 5mm mass in right breast. Then ultrasound guided core needle biopsy. The results were reported by a nurse at the Women's Clinic 3 days later saying it was "benign, but with some issues in the wording." What the heck does this mean?

I called the nurse at the Breast Diagnostic Center to ask her, and she looked over my info and said that it looked like it was benign, and she was guessing the wording issue was about what to do next. She said the paperwork couldn't be released until a Dr had reviewed it, and the provider's office had relayed the information to me. She did give me the numbers of the 2 surgical groups they refer patients to, since I think I would like to have the mass removed.

I still have not heard from a Doctor, or the Physicians Assistant I saw for the initial mammogram, and who the results were sent to. She is out of town until next week, and has not seen the results yet. Her nurse just gave me the results because I was anxious for the results, but did not have the paperwork yet.

I have read on this site that sometimes the DX of benign is given before all of the testing is truly in. I am a huge worrier, but I just feel uneasy about feeling secure w/ the DX of benign yet. Would all of the testing have been in by 3 days?

I feel bad about questioning such a great diagnosis, when so many, many new friends on this site have received much different results. I would just like to see the Dr and possibly a breast surgeon and see what they think = wait and see, or remove the mass.

Any words of wisdom, or experiences to share, would be very much appreciated! Thanks in advance to everyone here for sharing their stories, their lives, and their hearts with us. Hugs to you all! :)

Hugs & Love,

Wrinklequeen


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Comments

  • ballet12
    ballet12 Member Posts: 981
    edited March 2015

    Hi Wrinklequeen, they usually recommend an excisional biopsy when they find atypical cells, usually in the form of atypical ductal hyperplasia (ADH), atypical lobular hyperplasia, or flat epithelial atypia.  These are considered benign conditions, where a person as at somewhat greater risk of later developing breast cancer.  The purpose of the excisional biopsy is to see if any cancer is lurking nearby the area that found the atypical cells, most often being DCIS (ductal carcinoma in situ) and sometimes LCIS (lobular carcinoma in situ).  I did have that situation, that the core biopsy showed ADH (I'd actually had that diagnosis before, as well), and the excisional biopsy showed DCIS. So, with your pathology report (which you haven't seen), it's kind of "benign" but with an asterisk.  I hope this clarifies things for you.  Once you find out more specific details in your case, you can go on the specific threads which address your needs on this website.  There are many women with diagnoses of ADH, ALH and LCIS (which is also treated as a pre-cancer condition).

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  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited March 2015

    My guess would be atypia too. It is generally an incidental finding but it allows one to be a bit more proactive with screening, preventive med options and other options. When I was diagnosed with ALH and ADH my BS sent me to see a genetic counselor to put a number on my risk. Good luck. I hope you get some answers soon.

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  • nmh35
    nmh35 Member Posts: 96
    edited March 2015

    I had an ultrasound biopsy come back benign, but the radiologist still felt like something wasn't right, so she sent me for a MRI biopsy. Sure enough that biopsy came back as ADH atypical cells. I guess the Mri was able to pinpoint the area better. I hope you get some answers soon

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  • ballet12
    ballet12 Member Posts: 981
    edited March 2015

    Hi Wrinklequeen, I just re-read your post a little more carefully.  You stated that you want to have the area excised, to be sure that it is benign.  That is very different from the doctors recommending an excisional biopsy as I had assumed before.  With those atypical cells, it is standard protocol to do an excisional biopsy, but not for straightforward benign tissue.   Let us know what the pathology report says.

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  • grammakathy
    grammakathy Member Posts: 407
    edited March 2015

    consider asking for the written report when you see your doctor. The wording will help you understand the condition

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  • Wrinklequeen
    Wrinklequeen Member Posts: 45
    edited March 2015

    ballet12,

    I'll hear from the Physicians Assistant, who the results go to, this week (hopefully) when her nurse calls me once she reviews my report. The nurse said it looks like the extra wording might have to do with what to do next - have a lumpectomy or watch and wait were options that were brought up.

    The nurse at the Breast Diagnostic Center, where the ultrasound & core biopsy were done, said I might want to get a consult w/ a breast surgeon to see what he thinks. When I asked if I should wait to hear from the Physicians Assistant she said no, thinking the appt would probably be a while out. She also said those Drs would have access to my report, so I didn't have to have the report in hand when I went for a consult. I have met with this Surgeon before, and I do trust his judgement.

    She wasn't surprised that I might just want to go ahead and get a lumpectomy so I don't continue to worry about it. (I thought a lumpectomy and an excisional biopsy are called the same thing, that's why I referred to it as an ex. biopsy.)

    I guess I figured when they take it out they'll biopsy it, I would think. ( I had a lumpectomy 20 years ago that turned out to be benign in the other breast.) I know I'll worry about it every 6 months before the mammo and ultrasounds that will be scheduled.

    Thanks for your response. It gave me something to think about. I guess I won't know everything until I see a copy of the report, or hear everything that is on the report. I looked online at the BD Center, but it's not posted yet. I'll wait to hear what the report says, and then see what the Physicians Assistant and the Surgeon both have to say about what the next step should be.

    Thanks again for sharing. As a newbie, my experience and wisdom is very limited. :)

    Hugs & Prayers to All,

    Wrinklequeen

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  • Wrinklequeen
    Wrinklequeen Member Posts: 45
    edited March 2015

    nmh35,

    What happened when the MRI biopsy came back w/ those results? Was it a wait and see, or did they do surgery?

    Thanks for sharing. :)

    Wrinklequeen

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  • Wrinklequeen
    Wrinklequeen Member Posts: 45
    edited March 2015

    Thanks, grammakathy. I'm a newbie, so I'm open to all the wisdom and experience others are willing to share! :)

    Hugs & Prayers.

    Wrinklequeen

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  • nmh35
    nmh35 Member Posts: 96
    edited March 2015

    my MRI results came back last year as ADH so I had to have the excisional surgery to remove them. This year I came back as DCIS, so I had to have mastectomy/reconstruction.

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  • ballet12
    ballet12 Member Posts: 981
    edited March 2015

    Hi Wrinkle, technically an excisional biopsy is what you call a surgical biopsy done on presumably benign tissue.  If it's already diagnosed as cancer, it would be called a lumpectomy.  You are right that pathologists examine all of the tissue in all circumstances. About doing a biopsy on benign tissue that doesn't show atypical cells (just fibrocystic breast tissue, for example), just be aware that each biopsy creates more scar tissue, which can affect the accuracy/interpretation of future imaging.  Of course, if a surgeon agrees you should do it, then it's fine.

    Also, you need to get a copy of this and all reports, even if the surgeon will already have a copy.  All of our discussions are moot, until you know exactly what the pathology report says.


     

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