DCIS

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janmgh
janmgh Member Posts: 5
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Diagnosed with ADH in 7/10 after excisional biopsy.  Breast MRI 12/10 good.  Mammogram 6/11 showed new calcs so another excisional biopsy & diagnosed with 2 mm DCIS.  Had excisional biopsy followed by radiation & just started tamoxifen.  Had my 2nd annual breast MRI yesterday & received a call last night that there is a 2 cm area of uptake in the other breast.  Isn't 2 cm awfully large not to have been seen on mammo just 5 months ago & isn't 2 cm too large for DCIS?  It's driving me crazy that I won't speak to my MD for a few days.  I know I don't have all the facts yet but just wondered if anyone has had a similar experience.

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  • crystalphm
    crystalphm Member Posts: 1,138
    edited December 2011

    I am sorry to hear your news...it is miserable. Well, I wanted to tell you 20 months ago, I was blindsided to have a normal mammogram, a normal gyn. visit, only to notice some unusual dimpling in my breast and I saw my gyn. again, ***all in the same month****. he insisted all was well, I was scared to pieces, so I opted for a surgical biopsy. it came back multifocal DCIS in many places, 21 out of 26 samples had cancer...the radiologist said mammograms do *not* pick up all cancers, but it is the best screaning tool they have.

    Just went through the same thing with the other breast, this time I insisted on a MRI...again, the mammo was fine, the MRI found 3 places.

    So yes, unfortunately it does happen that mammograms miss things they should pick up.

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  • janmgh
    janmgh Member Posts: 5
    edited December 2011

    Wow Crystalphm.  I'm sorry to hear about your ordeal as well.  What treatment did you choose?

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  • Emaline
    Emaline Member Posts: 492
    edited December 2011

    No 2 cm isn't too large for DCIS.  Mine was over 7 cm.  You will see many women here with 6 cm or more of DCIS.  I had not had a mammogram before and they only reason they found mine was due to I thought I had a lump in my other breast (I didn't).  However....I can say it can grow that quickly.  I was "lucky" enough to have a friend who developed DCIS right about the same time I did. However, they caught hers because they were watching a cyst in her other breast and she was having 6 month scans to watch it.  In 6 months her other non-cyst breast developed a huge amount of DCIS, she never told me specifics, only said it was over 9cm.  That was in 6 months.  So it can happen.

     Due to size and being multi-focal, I (and my friend as well) went with uni-lateral MX.  My BS truly believes I could have gotten away with a lumpectomy but he was overruled by the tumor board, he was my 2nd opinion and you don't get much better then him in my area, I went with what was recommended.  He ended up being right..I could have gotten away with a lumpectomy.

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  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited December 2011

    I have heavy, dense breasts. Every year when I go in for my mammogram, I ask for an ultrasound. I'm always told "Ultrasound is not a screening tool." Then I get a card in the mail telling me there is "no evidence of cancer" in my breasts.

    So fast forward to September 2011 (two months away from my next mammogram), when I had spontaneous bleeding from my left nipple. After two mammograms, two ultrasounds, a ductogram, and two core-needle biopsies, it turns out to be multi-focal DCIS with a small component of IDC.

    My radiologist (AWESOME woman) thought she could see it in my 2009, and 2010 mammograms. I asked why it hadn't been caught then. She said that mammos were notoriously hard to read if you didn't know specifically what you're looking for. She said that she could get 30 of the best radiologists in the country to sit and look at my films, and said probably they wouldn't pick it up, either. But if she showed them my ultrasound images, THEN they might be able to detect early changes.

    She also said that it was kind of the same for ultrasound. You could lose a ring in the park, but unless you could pinpoint exactly where you lost it, you wouldn't know where to start looking.

    Then she said, once a cancer has been identified, then they go into full-blown diagnostic mode, recommending additional testing such as MRI, etc.

    I thought that was a great explanation, but it really didn't make me feel any better. Undecided

    BTW, I still love this woman. She tried her hardest to make sure she found all the cancer, but in the end, called me and said I needed to come in for more tests to make sure there wasn't more on the left, and possibly in the right. I told her I had decided on a BMX/recon (Monday, December 5th) and she said that was a very wise choice.

    Uhhhh...didn't really answer your question, did I!

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  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2011

    Blessings, DCIS was there long before the mammo's discovered it. The oncologist said Friday that the now cancer I have now has been there for years...probably before my first dcis lumpectomy in 2007. The second time around the mammo nor the mri picked up the multi focal dcis.

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  • sadie5254
    sadie5254 Member Posts: 39
    edited December 2011

    Just diagnosed last week with DCIS; however, the site of the calcifications is more than 11 cm so a mastectomy seems to be my only recourse.  No history, no problems, no way I saw this coming.  Saw two surgeons and have one more consult and the PS next week. 

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