Mammogram Shammmogram.......Again

LindaF

Shanagirl,

I TAUGHT and did self breast exams on patients for 34 years, found lots of irregularities and referred those patients on to the Breast Care Centers for a Surgeon's Consult.   I seldom ever heard any feedback, because if there was a problem, those patients stayed at the Breast Care center and never returned to my care.

It took me over 2 years to convince my provider/friend that I should be referred on....I should have done it myself but I never thought of referring myself......if my provider didnt' think there was a problem with my nipple flattening, then I must have been over-referring women in the past.    I doubted myself, I accepted her opinion, and my mammograms were fine.   I asked for a diagnostic mammo and an US, they were done and declared to be fine, even thought I pointed out to the radiolgist that my nipple was changing, and this was a new finding back in 2010.

Standing up, in the shower, I finally located something behind my inverted nipple in 2011.   This time I went in requesting a surgeon's consult as well.   Again, mammo and US were fine.   Surgeon was skeptical, could not feel anything but apparentlly sensed I was very concerned and sent me on to his radiologist (a month later for the appointment) who was kind of nasty accusing me of not bothering to bring all my mammograms which, in fact, I had brought to the previous appointment and signed them all in to the clinic.  I pointed this fact out, and was left sitting in the exam room while she went out and found them and reviewed them.  Three hours into this appointment, she finishes her US, repeat mammo views and smiles....she has found a change in my mammogram and wants to do a biopsy in 3 days.  I won't forget her smile, I realized that in her opinion I was no longer wasting her time......she was pleased with herself, she had found a cancer that is difficult to diagnose....

 The rest was fast and furious once the diagnosis came in.   The MRI showed I had a 7 cm ILC mass  in a 5 cm breast, plus hot axillary nodes, supraclavicular nodes and things in my lung.   So the two years it took to diagnosis it gave it time to grow and spread.  I am still beating myself up over not trusting my instincts......I want my daughters to get MRIs when they hit 40 and start mammograms.   No one, and I repeat, no one could feel the mass or the known existing axillary nodes, and no one would listen to me and examine me sitting, where it could be palpated.   So very frustrating to be a part of this system and yet not able to save myself!!

I am hoping the new 3D ultrasound machines will augment the arsenal of screening techniques, and we can save or at least shortcut the time it takes to finally diagnose ILC, such a sneaky form of breast cancer.

Sorry for the tome, I clearly am still angry at myself, what kind of provider was I that I didn't push for my own self sooner.   I need to forgive myself and move on, but I can see that it is still a raw area for me.

kar123

Right there with you ShanaGirl!  I had a clear mammo, ultrasound, and MRI.  I knew there was something wrong because of the way my nipple was starting to invert and the way my breast felt.  Kept at the BS and luckily didn't wait the recommended 6 months to come back, but still kicking myself for waiting the 3 months they offered instead.  My MRI gave the bad breast a bi-rads of 1 and the clear breast bi-rads of 4.  WTH?!?! I was told by a nurse during one of my "Are you sure everything is OK?" phone calls, that if it's not on the mri it's not there.  It's hard for me to trust any form of scan anymore.  Just keeping my fingers crossed that the clear bone and pet scan were telling the truth.  While the whole experience has been hard, I am still having trouble getting over the total failure of technology in my case.

lkc

Add me to the list.annual mammos since age 30 due to strong family hx. Diagnosed with stage IIIC 7 mos after clear mammo.

Mammos are useless in dense breasts. It all comes done to cost. and look how much we have all had to bear!