where your tumors "invisible?"

vickilind61

Ladies, I was diagnosed with DCIS.  During my lumpectomy, 2 tumors were discovered that had not shown up on my mammogram, the largest being 2.6 centimeters.  When we went back for the mastectomy a month later, a third tumor was discovered sub-areolar.  I am wondering if anyone else has had this happen.  It makes any subsequent mammo kind of, well, worthless in my opinion.  

Anyone else have something similar?

Bluetail

Your situation roughly parallels mine, forever shaking my confidence that if you have a 'good' mammogram, you're okay.  

A call-back mammogram in February 2013 found what the radiologist said was 'probably much ado about nothing...but I'd like you to have a biopsy anyway' to check out some suspicious calcifications. Well, 'Dr. Shakespeare' was wrong and it turned out that i was positive for DCIS.  No big deal, right?  The breast surgeon did a lumpectomy and we both thought that was that, get zapped, take an aromatase inhibitor, have a nice life.  

However, the pathologist found a 6.5 mm ILC at the margin of the lumpectomy tissue which hadn't shown up on any mammogram, including an experimental molecular mammogram. Very long story short, a couple of MRIs and several biopsies later, the final diagnoses were a 2 mm IDC in the 'good' breast and more DCIS that hadn't shown up on any diagnostic image and wasn't found until i had the BMX.  

So yes, the two different infiltrating tumors--one on each side--were 'invisible' to mammography, discovered almost by accident.  I think this is very uncommon!  

Hope you're doing well.

SpecialK

Yes, mammogram missed my palpable 2.4cm mass, MRI missed my .5cm positive node. Dense breast tissue makes imaging problematic and differing types of imaging are/can be better at showing differient types of masses or calcifications, etc., but not always. This is one if the reasons I did a BMX when I could have had a lumpectomy.

farmerlucy

Me too. MRI, mammo, ultrasound, thermogram missed the 1.1 cm IDC. I thought for sure with all my screening we'd catch anything at stage 0.  I think the public needs to know how ineffective mammograms can be especially for dense breasts.  Slowly I think the word is getting out. I did ask my onc and my BS independently at what size things generally start getting picked up on screening and they each said about a cm. I had no idea. 

mel147

Believe it or not mammogram with Tomo (3D) in Jan 2014, and diagnostic mammo and diagnostic ultrasound in May 2014 missed my 7.3 cm DCIS that was picked up on MRI a few weeks later.  I also had diagnostics on the area in Dec 2012 and nothing showed up and I was told not to worry about it, it was just thickened tissue/fibrocystic.  Very scary sometimes to rely on the imaging.

mdg

I found my 1cm lump a few months after a "clean mammogram".  Then when they went looking for it....they saw it.  That is why I chose BMX....I didn't want to have to worry about mammograms that are not accurate again. 

SoCalLisa

My two tumors were missed by mammos. In fact I arrived home after my first lumpectomy to a letter telling me that I had a clean one. My friend who is a mammo tech told me however that many of the rad doctors couldn't read a driver's license. 

SpecialK

The mammo showed absolutely nothing but because my mass was quite palpable I had an immediate US which showed it.  This is standard protocol at military facilities and I have had this many times as I always had palpable masses (cysts) for the 20 years I have been having annual mammos.  The radiologist was not sure what it was so I was sent for the biopsy, by a radiologist at another facility since the military treatment facility did not have biopsy capability.  She was not sure what it was either - could not tell from either the US or how the core samples looked that it was cancer.  I went back to thank the initial military radiologist for insisting on the biopsy, because I was node positive Her2+ and I feel that he quite possibly saved my life. I could have been told to wait and watch for 6 months, but he wanted the biopsy ASAP.  We went back into his office because he wanted to look at my mammo again now that he knew I had BC - there was absolutely nothing there due to density, so I really appreciated his thorough approach. 

sschmidt

My lump was found manually by myself...in the middle of the night as I was rolling over in bed.  Didn't sleep the rest of the night...true story.  I had just had a clean mammo.  Upon second biopsy....for sentinel lymph they found two more small tumors.  SO it is a theme.  I was told that you cannot find a snow ball in a snow field.  Now I am almost all fatty tissue...as apposed to being dense glandular tissue.  That helps.

Shirley

Moonflwr912

well. I had a mammogram.  Calcification in my right breast. DCIS. Then an ultrasound. Couldn't have an MRI because of my pacemaker.  So then a biopsy.  Candidate for a lx. Um. No!  Too much bad history in my family. Mom, 3 of her 4 sisters, Grandmother. All of whom had it in one breast at first. Missed it in the other - except my Mom had seen 2 of her sisters go through it so she had a BMX instead. Guess where they found the Invasive?  Yep in her "good " breast. So she had no other tx because they said they got everything. She died 7 years later from mets. 

Now my turn. So even though they said I didn't need to do a BMX,   BMX it was. 1.6 mass in the other so called good  breast. Totally spooked my BS AND PS. I mean that's Not a large tumor, but 1.6 is usually big enough to see with 2 methods. Turned out to be Her2 positive so chemo it was. I thought I'd have to fight for chemo I was actually glad to have it. My MO was amazed at my reaction but I said look at my history LOL.  

I am hoping Chemo will give me more time than my Mom!

Much love

farmerlucy

Ladies - Did your path reports show one dimension or three for the tumor (s). One doc said a reason they didn't see mine was because it may have been long and skinny. My path report says nothing apparent on the gross description, but IDC was found by microscopic examination (no DCIS at all) but I only got that one dimension.  I still hold out hope for long and skinny, because that would mean fewer cells. You know, these nasty surprises with remaining questions are a hard thing to let go of. Of course I'll never know . . . but I want to!!!!!!!! (stomping my feet)  BTW -This little emoticon looks a little creepy - maybe he has braces. 

duck1216

I had my mammograms done every year without fail.  In addition, since I had dense breast tissue, I also had ultrasound done every year.  In 2009 I went to my OBGYN and told him the lump that had been watched for years was hurting.  He wasn't too concerned but sent me to a surgeon to have it checked anyway.  The surgeon ordered a biopsy and MRI..........2.5 cm and it was cancer.  I was told I could have a lumpectomy and radiation.  I chose double mastectomy and chemo...wanted to go aggressive.  Good thing!  It had spread to a lymph node.  Seven lymph nodes, double mastectomy and chemo later, I have no regrets for choosing an aggressive route.  If you don't advocate for yourself, who will?  If you aren't sure, get the MRI.   I was fortunate to have a GREAT surgeon who went the extra mile to make sure whereas the women's imaging center I had gone to for years did not.  I'd probably be dead without Dr. Levin.  Keep asking until you get an answer....there's good folks out there that are professional and caring.  Keep fighting for your health!