Missed breast cancer since 2008, angry

allyaction

Hello,

I have been recently diagnosed with a grade 2, 1cm and stage 1 invasive carinoma. I am 52 years old.

I recently got copies of all mammograms for my records. I was taking a look and saw that in 2008, the radiologist noted an asymmetry in the exact same location as my breast cancer now and cleared me after a call back. I was 48 years old at the time

In 2008, the initial mammo said, "Focus of increased density noted in the medial right cc projection at depth of 4.4 cm from the nipple. It is not seen on the oblique view. Summation density is likely. Further characterization with spot compression cc view and true lateral view right breast is suggested."

The follow-up diagnostic mammo in 2008 says, "The area of initial asymmetry does disperse upon additional imaging and has a virtually identical apperance to that seen previously. No coorelative abnormality is suggested on the 90 degree or MLO projections. The findings are consistent with benign tissue."

Mammogram from 2009 listed as negative. Skipped 2010 and 2011.

Well sure enough, 2012 mammo, asymmetry in right breast 5cm from nipple (same spot as 2008) is tested positive for malignancy. 

Well, anyway, im feeling kind of upset becuase clearly they spotted my cancer in 2008 and cleared me. Cleared me again in 2009. Yea i missed two years, but i was going by the guidelines that say a mammo every 2 years. Got in pretty much on the 2 year mark, just a month or two after. I was 51. Had had mammos since age 40. Didn't want to do every year because i have no family risk and guidelines say 2 years. I didn't want the excess radiation.

Is it rational to be upset about the findings in my 2008 mammo? Has anyone had a similar experience? I was almost cleared in 2012 again because they couldn't figure out where the asymmetry was again. I just feel like i should have never been cleared in 2008 because i obviously had cancer. They should have done an ultrasound to be extra certain.

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on an unrelated note, does this tell me something about my cancer? I assume if it was there since 2008, that means it is slower growing because it only grew to 1cm since that time? But then i think, it has been sitting in my body for years. Hasn't it had all this time to spread through blood? I did not have positive lymph nodes or vascular invasion, but i wonder if it is possible cells escaped since it was sitting in my body for 4 or more years. Is there a consensus on this?

finally, i wanted to get brca testing, but I was told i don't qualify. I'm not young enough!!! Do you think I can use this mammo finding to appeal my insurance?

Thank you for any and all thoughts in advance!

beacon800

It's not something that is worthwhile to get very angry about.  There is no way to know if the thing they were looking at was invasive cancer at that time.  It could have been a LOT of different things.  Many people here have had stuff that their docs were sure was cancer and it wasn't.  Sometimes they are sure it's not and it is.  No way to know unless biopsy is  performed.   You could have had something there, not yet cancer, that they saw but it did not look like cancer.  Maybe it changed over time and became cancer.  That happens too.  Most people are told that the cancer has been with them for 5-7 years before it is detected, so it does not mean you have a worse prognosis. Sounds like your prognosis is very good.

It's really frustrating and many women look back and blame themselves or their doctors for not finding things sooner.  That is a bad feeling.  However, hopefully the outcome is just the same for you: a long and healthy life.

luckystar

That is similar to me and I am upset. I think you have a right to be upset.

I think it is an unknown fact that radiologists and mammograms miss many breast cancers. Many women think they are safe just because they get a clear mammogram and they are not. I think they need to develop a better system for diagnosing and for calling women back. 

It sounds to me like the same spot and even if it is precancer, you shouldn't have been sent home. Any type of irregular density should merit further imaging. In your case it was cancer, so its clear it was missed. I understand they may not always be able to tell, but then they should make women aware of that instead of saying something is benign. Clearly it was not benign.

Megadotz

Getting a BC diagnosis makes may of  us angry.  My experience for the period between initial notice  of something to be watched to diagnosis covers a similiat period, but with a very different jpurnes

FWIW,  I was on a six month mammo/ultrasound schedule for over 3 years based on density issues before  my breast cancer showed up well enough to be biopsied.  The radiologist showed me the previous film and showed me that striated mass wasn't there before.

ER/PR+ cancer  is often pretty slow growing.  My MO said that mine  had probably been there for 10 years.  Sh also noted how the radiologist had been following it for those years.

All asymmetry is not cancer. I had  biopsies on both breasts in March 2009, the biopsy on the left one was benign, the one on the right one was malignant. There's an 80% benign rate for biopsies of birads-4 (suspicious) mammo results.

You may have very well mammos each of those years and not have been diagnosed any earlier.  If the radiologist were following standard protocol, you probably don't have recourse with them or with the insurance company for BRCA testing.

Mammography is imperfect, but it's the best we have for now.  Sorry  that you had to join our club.

msphil

sweetie, we are here for you and will support you here, msphil(idc, stage2, 3 nodes, L mast, chemo and rads and 5 yrs on Tamoxifen) and am now a 19 yr this year SURVIVOR, (Praise GOD) and HOPE and family and friends. I was told I had breast cancer, went thru all the emotions, then got a call that it was a mix up in Lab and I didn,t have it, more emotions, (HAPPY) then yet another call that I did indeed have cancer, some of family suggested I do some legal to them, I just wanted to get on and get Healthy.

pupmom

It's very understandable to be angry. My bc area was actually core biopsied 4 years ago and found to be B9. Fast forward 3 years, and 2 normal mammograms, until the final mammo identified it again. Got another core needle biopsy and the culprit was identified, FINALLY! The person I primarily fault is the doctor that obviously didn't biopsy the cancer, but normal tissue instead. Maybe I only had DCIS at that point. I'll never know.

Beesie

yorkiemom, maybe the first biopsy was correct.  Most cancer develops through this process:

http://www.breastcancer.org/pictures/types/dcis/dcis_range

Particularly at the first couple of stages, ductal hyperplasia and atypical ductal hyperplasia, the vast majority of lesions remain in that state and never progress further.  So an area of cells that is active but benign today might always remain benign, or if you are unlucky, it might continue to develop and eventually become cancer several years down the road.  

allyaction, I completely understand your anger - I'd be feeling the same way in your shoes - but the fact is that you had a diagnostic mammogram in 2008, the area of concern was identified and the features of that area were consistent with benign tissue. So it could very well be that at that point in time, the tissue really was benign. There's just no way to know.  If you hadn't had the diagnostic mammo despite the original concern, then I would see a fault on the part of the radiologist.  But you had the diagnostic mammo and the imaging did not show what appeared to be cancer.  It stinks that you were diagnosed years later, with cancer found in the same area of your breast, and that certainly appears suspicious, but there's really no way to know if that cancer was present back in 2008.

Papillon1

My mother was sent for physioi for a trapped nerve, her blood tests were all ok,she wa put on medication for anxiety.. turned out to be a metestatic brain tumor when I look back and read through symptoms it seems obvious. Hindsight is a wonderful thing.

I am annoyed but its a pointless emotion. My energy is best spent dealing with what is happening.

dlb823

ally, it's totally normal to feel angry at what, in hindsight, seems like a missed opportunity for an earlier diagnosis.  But the truth is, mammograms are not perfect tools and somewhat open to interpretation.  In other words, two radiologists can look at the same image and come to different conclusions re. the degree of concern.  In your case, it doesn't seem like any blatant things were missed, but if you want another opinion on that now, you could always get copies of your previous films (ask for them on a CD) and take them to a different institution for review.  

And don't kick yourself about missing your mammo last year.  I did the same thing -- actually delayed mine from my normal October routine to February (when mine was found), because I'd read some things about mammo radiation possibly contributing to bc.  At first I kicked myself, but then I realized that if it hadn't been seen in October, it would have been another year before it was.    

As far as the BRCA testing, have you spoken to a genetics counselor?  That's the specialist who is qualified to determine if testing would benefit you, based on things like family history -- not just your age.

I'm so sorry you're going through this, but perhaps having another institution or BS about your old mammos would help you make peace with the way things evolved.     (((Hugs)))   Deanna

sewingnut

Your story is dejavu for me. In 2010 I went to a different mammogram facility. Up to that point I had gone to the same place. The new place got all my films and reports. Seems my cancer had been there since 2002 and they just "kept watching" it. Angry, yes. You have all the right in the world to be angry. Then, you have to let it go and get on with getting rid of it.

If you have your pathology back talk to your insurance company about the BRCA test. If they are telling you that you are too young ask for a peer to peer review.

bettysgirl

I know that it is a frustrating feeling to think you could have found this earlier. I had several biopsies before they found my tumor. I had actually mentioned a thickening around the area that I thought was where the marker clip was located. But it ended up that the thickening was the cancer the clip was further over. Should I have been able to find it earlier??? Maybe so....BUT all in all my life was not in a place to have been able to handle it 1 yr prior AND I would not be a part of an amazing group of sisters that I met here in the Fall of 08. I had several doctors tells me that often BC is present 10 yrs prior to DX, just not seen and/or found....I don't know about that but rest assured that your physicians will give you the best of care, you will make some great friends here and most of all you will rise up to the challenge, face each step as it comes and you WILL beat this beast. Hugs to you

Jojo0529

your post made me feel a little better. I really thought I was the only person who had a four yr misdiagnosed lum

Trvler

I totally get how you feel. I actually had a mammogram 21 years before my dx in the exact same spot because I felt pain. The doctors all tell me there is no way but I don't agree. Somehow, I KNOW it's related. Fast forward to 3 years ago, I went to the doctor because I felt radiating pain. Had mammogram and u/s and was cleared. Pain got worse. Went back about 9 months later and doctor gave me order for mammo and u/s and said 'It doesn't present like cancer' and you could get an MRI but they are expensive and insurance won't pay. So I sat on the order for 6 months until after the holidays. Well, I think you can see the rest.

Harness your anger to research the best treatment options. That helped me. I guess the bottom line is people make mistakes and medical people are no different from everyone else.

Jojo0529

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thank you... Nice to not feel like I am the only one, Alison 😊

azrescue

I'm inthe same boat. I have been being monitored for the past 3 years. First two years it was every 3 months & then on to every 6 months. Always told everything looked stable or smaller. Well, I found out today the mass is 5.3 cm.!!!! How the heck didn't they see that??? It's grade 2. So new Drs said it didn't get that size overnight. I'm so angry & frustrated.

JoniB

allyaction - I had a biopsy in the same spot as my current malignancy in October 2014 with B9 results. I had an MRI that December and then US and mammo in July 2015 and they said everything looked fine. Had MRI December 2015 and they said the area they were concerned about in 2014 was now larger. Had a biopsy in January - again B9. But the radiologist said the results were discordant and they wanted another biopsy. The second biopsy turned out to show the malignancy. So, was the malignancy there in 2014 and they just didn't get the spot on the biopsy? I think so. If it is true, then I could have been treated over a year ago. The only problem is I will never know. Back in 2014 I was just so happy to have a B9 result I never thought to press it further.