Rapidly growing DCIS or just too small to show in mammo's/MRI???

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kimjeant
kimjeant Member Posts: 1
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Hi.  I was diagnosed with DCIS on 9/20/2011, <1cm, grade 3.  They removed the small amount of DCIS with OK margins.  I was unhappy with my original surgeon so I switched.  The new surgeon had his radiologist review my mammo's and pathology and agreed with the diagnosis but noticed another cluster of calcifications that looked concerning on my original scans that were not biopsied. My new surgeon scheduled an MRI and additional mammo's to make sure he wasn't missing anything else.  The MRI showed nothing and the mammo only showed the one additional area of calcifications that they knew about.  My surgeon scheduled a lumpectomy on 11/1 to clear the margins and remove the second set of calcifications.  Results were good and clear but he did remove a very large area and left me with a huge cavity.  The second set of calcifications also tested positive for DCIS.

I originally went in for a mammo at the age of 37 because I was scheduling an appt for a breast reduction and my Mom was diagnosed with breast cancer in April'2011.  My PS said I should get a baseline prior to surgery.  Unfortunately, the results were DCIS and my reduction was put on hold.  Because the lumpectomy left me with such a large cavity my surgeon and PS thought it would be best to do the reduction prior to starting radiation.  So, my reduction (or oncoplasty as they called it) was scheduled on 11/11/11.  Again, surgery went great and I was looking forward to being cancer free - with smaller breasts.  However, they tested 10 random tissue samples from the tissue removed during the reduction and 4 of 10 samples tested positive for DCIS.  The docs are now saying I have to have a mastectomy because that was a good indication I have DCIS throughout my right breast.  And, I absolutely should have the surgery in the next 2 weeks.  

Here's my concern:  I have had a bazillion mammo's and an MRI and none of scans showed DCIS in any other area of my right breast.  Is it possible the DCIS would have grown so rapidly since my last scan (approx 3 weeks prior to surgery)?  Or, were the calcifications so small they didn't show up anywhere?  Also, now I have to decide on removal of one or both breasts.  I'm not sure what makes the most sense. 

I'm beyond frustrated and feel like I'm going to look like Frankenstein when this is all said and done.  I'm very sorry for the long and confusing post but I could sure use some advise and/or encouragement.

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited November 2011

    kimjeant - I had a 2 cm IDC and DCIS that never showed up on mammography either.  The DCIS did not show up on my pre-BMX MRI either, so I think this was just never detected for you.  I was a lumpectomy/rads candidate but elected BMX for just this reason.  I had dense breasts and imaging could not pick this stuff up so I didn't want to live in fear waiting for the other shoe to drop.  I had a skin/nipple sparing BMX, with the incision in the IMF, with immediate placement of tissue expanders. I am currently in mid-recon and should have exchange surgery early next year.  Turns out I had ADH/ALH in the "prophy" breast that was never detected.  I have no regrets doing the BMX.  I know some ladies have great results with a uni, but I think it is easier for the PS to attain symmetry with a BMX.  It would also eliminate wondering in the future what might be going on in the other breast!  Just my thoughts!

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  • Chickenpants
    Chickenpants Member Posts: 132
    edited November 2011

    My mom alerted me to this news article on CBC this morning.  We're in Canada and I'm going to post this in another thread as well.  I'm in the limbo land of 5 months worth of diagnostics on the wild goose chase to find all the cancer than doesn't show on this test, but does show up on that, this biopsy, that excision - oh, another core needle biopsy coming up (my favourite... NOT), MRI, US, etc. etc. etc.   Is it overkill in the diagnostics for the majority of women?  They do state elsewhere that the number of lives saved is the same as years ago - with all of the early detection, the same number of women are still dying (or surviving) of breast cancer.  I'm totally torn between doing absolutely nothing in the way of screening for BC for the rest of my life because with ADH, DCIS & LCIS - all of those conditions, I may still never get cancer and the odds are in my favour that I won't.  The dilema is always, if you have this information the doctors have given you, then what will you do with it?

    http://www.cbc.ca/news/health/story/2011/11/21/breast-cancer-screening.html

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  • xtine
    xtine Member Posts: 131
    edited November 2011

    DCIS is often very widespread throughout the breast.. I would guess it was already there instead of growing fast (though you didn't provide pathology on the grade of DCIS, which would indicate its aggression level). Sorry you have to go through this. I also had a mastectomy at 37, and while it wasn't a walk in the park, I certainly don't look like Frankenstein. You'll get through this. And the silver lining is that if you have a mastectomy you are likely to be able to avoid radiation.

    As to overdiagnosis, I think that at 37 the wise thing is to remove the DCIS. With a woman that young, there are just so many years left in which that cancer can become invasive. Perhaps surgery doesn't save her life, in that if detected later the cancer might not kill her. However, it is certainly better to remove cancer when pre-invasive and you don't need chemo or face the risk of mets. "I may still never get cancer and the odds are in my favour that I won't." - DCIS is already cancer, and nobody knows which DCIS will become invasive and kill, which is why we play it safe.

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

    My second bc dx final pathology report showed mutifocal high grade dcis throughout the quantrant of breast removed. The mammogram and mri only showed a liear line of califications. Because the high grade dcis was dotted throughout the breast they couldn't measure the dcis. My breast surgeon said it all didn't show up as califications or on the mri because they were too small. She said for whatever reason my right breast wants to make cancer cells. I didn't have a mx then because I was self pay and I couldn't afford then another surgery. The reason my bc sureon took out so much tissue is because the mri spotted another tumor in the lower part of the breast so she just removed a lot of tissue to make sure she got it all. I'm now getting a mx on the right breast because this time it showed up as idc.

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