DCIS undetected by mammogram

Daisy_01

Hi everyone thanks for providing such an amazing support network. I’ve spent a few days looking through the posts to try and make sense of what is going to happen to me over the next few months/years. I’m freaking out a bit to be honest.

A couple of weeks before Christmas I went for my annual mammogram and a grade 1 invasive carcinoma was picked up. I underwent a lumpectomy just over a week ago. A 9mm lesion (hormone receptor + Her2 -ve) was removed, as were three lymph nodes. (Clear thank god) But the surprise to me was that in the pathology report, a 14mm DCIS intermediate grade (associated with the invasive tumour) was also removed. This was not seen on the mammogram or ultrasound and I’ve been having those annually for more than 10 years! My question is - is this common? And how can I be sure my other breast is DCIS free if this wasn’t picked up? I’d ask the doctors but being Christmas, everyone’s on leave. Has anyone else had this happen? Should we be having MRIs? What if I’m prone to DCIS?

Kind regards,
Daisy

DearB

I had the same problem went for a mammogram for a suspected cyst which turned into cyst being drained plus invasive cancer.  Not in node though. Thus my severe anxiety for my scan next month. They have booked a mammogram but my cancer was not on the first mammogram reading only the cyst.  

Harlee

My 15 mm invasive ducal carcinoma was not detected by any of the 11 mammograms I had - the last one only a few months before I felt the lump itself.  
This is why it is so VERY important that people do self examinations and not rely on screenings. Sadly no test is ever 100% accurate - there will always be some false positives and false negatives due both to errors and limitations of the test procedure itself. 
Don’t dwell on the what ifs - be grateful that your cancer was detected and encourage others to do their self exams.  
Good luck with your treatment. 

Daisy_01

Hey Harley,
Thanks for your response.
It’s not that I’m dwelling on the what ifs, it’s more I’m trying to figure out a better way forward. Your case seems to reinforce my thoughts that maybe MRI is a better way to relieve my anxiety about reoccurrence. It seems that is not often recommended though? (My cancer couldn’t be felt on examination) I realise that in the scheme of things I’m lucky it’s been caught early. 

Harlee

I understand your concern. I was very lucky that I could feel my lump. I try not to think what may have happened if it had been deeper in my breast and unable to be felt. 
I have had lengthy discussions with my surgeon and oncologist about why my cancer was not detected on my mammograms. I have repeatedly asked whether mammograms were “worth it” going forward considering they cost me $150 expose me to more radiation and hurt like #&$*@&#!!!
MRIs have not been recommended for me (I’m 4 years post diagnosis) but I recommend that you speak with your doctors about your concerns.

kezmusc

Hi @Daisy_01,
I found a lump in my lymph node under my arm not the breast.  The biopsy came back as positive for breast cancer.  Ended up that 5 lymph nodes were positive.
We went looking for the primary tumour as I wanted a lumpectomy if possible.  .  2 x mammograms  2 x ultra sounds could not locate it.  I and the medical team could never feel the primary breast tumour which was 19mm but hiding right at the back
MRI found it. 

 I recently went for my 12 month scans and demanded an MRI (which I had to pay for by the way) on top of the mammogram and ultrasound as I was so scared that mammogram would not detect properly. If I hadn't found the lump under my arm (which I found by accident and was hard to feel unless I was lying a specific way with my arm up) for another couple of years things might have been a whole lot different.
Don't be afraid to ask for the tests you want so that you can rest a little bit easier.

Jen79x

My 2cm tumour appeared as ‘probably begnign on mammogram. Ultrasound appeared as “more than 95% chance malignant”. Apparently it’s about the tissue type in your breasts making some types less accurate.
scary. I would always request both tests now!
best wishes jen 

primek

I had a clear mammogram 5 weeks before I found a palpable lump. I had no dcis. My dense breast tissue made it very difficult to be detected. It was due to this I had a bilateral mastectomy as I didn't think I could ever feel safe.
I believe in future they would also do ultrasound with mammogram which increases it's accuracy with pick up. Perhapa a bi- annual mri might be worth considering but I don't think they pick up dcis very well either. I guess it's something to discuss for future thinking. However it won't change your treatment today. So focus on that and have those discussions with your breast surgeon along the way. You will be having many more appointments. Kath x

steplightly

Hi Daisy_01, DearB and Harley B, I too wasn't diagnosed through a mammogram.  I had a cyst that was aspirated and then while having an ultrasound "Oh Whats That:?  came the comment.  Out the door and in with another doctor who also said.. "hmmm not sure what this is"  better biopsy.  turned out it was idc  11mm with some dcis.  No Lump palpable by any of the medical staff.  It was undetectable on mammogram.  So I have discussed with my surgical team after lumpectomy and radiation what will be done for follow-up scans.  I have a strong preference for no mammogram just an ultrasound and will continue to discuss this with them.  Self exams are a given.  So will wait and see.  Nothing is 100 percent guaranteed.   Such dilemmas we face on this path.  

Vallerina

I had no lump. 2 small areas of cacifications were picked up on mammogram,
noithing on ultrasound. The 2 areas were biopsied and diagnosed as High grade DCIS.
I had been told years earlier I had dense breasts but I had been given this info as if it was a good thing almost like a compliment like my boobs were fim and young for my age. No one told me it would make mammograms harder to read. i had been having routine mammos since i was 40 but I would have p[aid for MRI myself if i knew. as I am very proactive with screening after having high grade cervical precancerous changes on papsmear  before I was 30.
Just before lumpectomy my brother in law (a doctor) suggested I ask for MRI. Medicare covered it. The MRI detected huge 9CM mass that had not been seen on any other imaging and that 3  specialists had not been able to feel.  Of course lumpectomy was cancelled and I was sent for Mastectomy. The mass turned out to be 7cm on final  pathology so MRI had slightly ovrestimated.
Problems with MRI, they do give false results, not just in size, but false negatives and positives. Mine was read in conjunction with the mammography and ultrasounds and 2 biopsies that had already been done so it wasnt read in isolation.
Also they have to time MRI in with your menstrual cycle if you still have one, so trying to mass screen everyone and working around all their period times would be a nightmare. It takes longer than mammography too.
I am able to get a free MRI now as part of my post breast cancer yearly checkups for the next 5 years. I was worried about a possible recurrence in the other breast going undetected. I had to ask for MRI screening  but they did easily agree. I will have all 3. Mammography, ultrasound and MRI and it is all being covered. Hate all the radiation etc, but worth it fior the peace of mind.

Isaidso

My DCIS was not detected by mammogram in August 2016. In late November my left breast became superboob due to inflammation and the lump was detected. The tumour was 7cm and high grade. Mastectomy in January 2017. I've since had the left breast removed. Glad to have 2017 done and dusted! 

Daisy_01

Thank you for sharing your experiences with me ladies. Obviously, none of the screening processes are perfect. But, i’ll Certainly be asking for MRIs from now on.