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mianola
mianola Member Posts: 14
edited February 2018 in Just Diagnosed

I had a biopsy on January 16 and on January 18 was told I had DCIS on my left breast, grade 3. I met with my surgeon on January 31. He told me "nothing to worry about" - it's 99 per cent curable and you have option to have a mastectomy - both if you'd like - and all will be well. I agreed to both and then saw a plastic surgeon. I told my surgeon I had a hard ridge on my left breast and he examined it. He thought we should do an MRI, which was done two days ago. Yesterday, he called saying I actually have invasive cancer and I'm scheduled for another biopsy tomorrow. WTF.... I have gone every 6 months for the last two years. I have had mammograms, ultrasounds and breast exams. I have dense breast and asked constantly - am I doing everything I can. I've tested negative for the genetic part of all of this even though my mom had DCIS and my grandmother died of breast cancer at 52. Has anyone else had a hard ridge and not been diagnosed? It didn't show up on any mammogram or ultrasound. I'm now facing chemo before surgery to shrink the ridiculously large 3 1/2 inch "tumor" in my breast. I am floored and I don't know what' else I could have done. Has anyone else had a hard ridge and it NOT be cancer? How could I go from non invasive DCIS to this?? Praying for better results with the biopsy.

Comments

  • Denise-G
    Denise-G Member Posts: 1,777
    edited February 2018

    It happens ALL the time especially women with dense breast tissue. It is one of my passions to spread

    this news. My sister was diagnosed Stage 3C, never knew what dense breast tissue meant.

    A dear friend was just diagnosed Stage 4 last week and had regular mammograms

    and checkups.

    I AM SO SORRY. Many women will chime in here.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2018

    It's like getting hit over the head with a 2”x 4”. I did high risk screening every six months to a year for nearly twenty years. When precancerous cells showed up I said take them off. Mammo and ultrasounds just weeks before saw nothing. A pre-surgery MRI showed something, but the follow up via ultrasound saw nothing and it was missed in the excisional biopsy.

    Yep you guessed it - invasive was found at the mx.

    No one ever told me how much screening misses.

    I’m sorry you are facing this. Take it one step at a time. You did everything you could do. Crossing my fingers and toes that it is only DCIS

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited February 2018

    It's like getting hit over the head with a 2"x 4". I did high risk screening every six months to a year for nearly twenty years. When precancerous cells showed up I said take them off. Mammo and ultrasounds just weeks before saw nothing. A pre-surgery MRI showed something, but the follow up via ultrasound saw nothing and it was missed in the excisional biopsy.

    Yep you guessed it - invasive was found at the mx.

    No one ever told me how much screening misses.

    Acceptance is hard and takes a long time

    I'm sorry you are facing this. Take it one step at a time. You did everything you could do. Crossing my fingers and toes that it is only DCIS.

  • Lula73
    Lula73 Member Posts: 1,824
    edited February 2018

    Hate to say it but it’s very common for mammo & U/S to miss it with or without dense breasts. I think we should all be having MRI instead as it’s more sensitive and no radiation exposure. It’s downfalls are “false positives” on imaging that lead to “unnecessary biopsies”, time it takes to have one and cost. I’d rather spend the time, pay the cost and deal with biopsies that come back benign than miss it. I’m very sorry you’ve joined the club, but welcome! There is a lot of excellent advice, good support and shoulders to cry or lean on whichever you need here.

  • marijen
    marijen Member Posts: 3,731
    edited February 2018

    I thought the 3D mammo was supposed to be a high percentage of accuracy? Anyone know about that

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2018

    I had a 3d mammogram that didn't show my IDC. It was detected on MRI. My surgeon pulled up the mammogram and zoomed in on where the tumor was to show me that there was no evidence of it on that imaging. Loud and clear on the MRI, though.

  • Veeder14
    Veeder14 Member Posts: 880
    edited February 2018

    If I hadn't had an MRI the tumor would have never been found as it didn't show up on mammogram or US or found when large. I'm having this discussion with my surgeon right now. I do have dense breasts. I want 6 month MRI's not rotating between MRI and Mammogram/US ~I don't feel comfortable waiting a year between MRI's. My cancer seemed to be slow growing but who knows in the future.


  • marijen
    marijen Member Posts: 3,731
    edited February 2018

    Well that is bad news. I haven’t had an MRI for three years. Thanks for the info.


  • Lula73
    Lula73 Member Posts: 1,824
    edited February 2018

    3D mammo picks up a little more than 2D. But it's real claim to fame is for the radiologist to be able to better analyze what does show up and reduces need for biopsy. I had 3D mammo-it showed calcifications in a comet pattern. Had mammo guided biopsy of calcifications. Lumpectomy of calcifications recommended. Showed up for wire placement and radiologist said he wanted to cancel lumpectomy until we had an mri because of my health history. Had mri and they saw the calcifications but also saw the IDC in the other breast. Thank God for that radiologist. I owe himso much.

  • Nancy2581
    Nancy2581 Member Posts: 1,234
    edited February 2018

    I'm so sorry. It happened to me as well. I faithfully did my mammograms yearly on time. In 2014 I was diagnosed with a 2.8 cm tumor and I don't even have dense breasts. Grrrr. You will get through this. Hang in there

    Nancy

  • marijen
    marijen Member Posts: 3,731
    edited February 2018

    Lula that’s interesting about your health history. Do you mean cancer in the family

  • Paco
    Paco Member Posts: 208
    edited February 2018

    I thought that DCIS was nearly exclusively found on a mammogram because calcifications don't show up as well (or at all) on an MRI? I think alternating is probably a good idea, for me anyway, but maybe it depends on what kind of cancer you are diagnosed with. Follow ups should definitely be tailored to the individual.

  • Lula73
    Lula73 Member Posts: 1,824
    edited February 2018

    marijen- I had Hodgkin’s lymphoma at age 13 and was treated with chemo for a year and rads to chest and abdomen everyday for a month. The rads to the chest meant increased risk of BC developing. There are guidelines that state alternating mammos & MRIs every 6 months to a year starting at age 25, but my GYN (who knows that history and isn’t old and stodgy) never brought it up or sent me for them. I had just changed GYNs and she knew the guidelines off the top of her head and couldn’t believe the other GYN didn’t know them or look them up. So I end up being a difficult patient for her right off the bat when at my 1st office visit (before we had any inkling about all this)I told her I was not a difficult patient😳

  • EastcoastTS
    EastcoastTS Member Posts: 864
    edited February 2018

    I'm so sorry about this. But have to add my story. 3D mammo missed mine. US almost missed (radiologist's first words to me: good catch). And I had been having faithful mammos (3D for a couple of years) since the age of 39 due to family history. None caught anything. I felt the lump myself and would not have if I was not really thin. To my way of thinking. Larger breasts and my tumor would have been really, really big by the time anyone noticed it -- me or the shitty mammograms.

    I had very dense tissue and this is one reason I decided on BMX. I did not want to beg for MRIs for the rest of my life when all else had basically failed me. But all of that is another discussion and a very personal one at that.

    One note: this journey will get easier as you get a treatment plan in place. I promise this. You are in the worst time without full knowledge and a plan.

    {hugs}

  • CasM
    CasM Member Posts: 110
    edited February 2018

    So sorry to hear you are going through this. I am not sure where your hard ridge is located but I have a hard ridge at the bottom of my left breast. I had it checked by a breast specialist and she said it was because of wearing a underwire bra.

    I thought that was weird and I had/have a really hard time believing her but have had multiple mammograms since and no one brought up as a concern. My next 3D mammogram I am going to bring up the concern again and I am also changing my mammogram location as I feel they aren't personal enough. I always feel herded in and out.

    Thinking of you and wishing good biopsy results.

  • swg
    swg Member Posts: 461
    edited February 2018

    I don't think there's anything you could have done, sadly.

    I had 2 tumors in my right breast. The 1st tumor was found through a mammogram and ultrasound; the 2nd was not.

    It was only a breast MRI that caught it.

    THIS IS WHY WE NEED INSURANCE COMPANIES TO COVER BREAST MRIS. Esp for women with dense breasts.

    Studies have shown that pushing women to get mammograms has failed us, because there are women who've gotten unnecessary surgeries due to mistakes, as well as women like you, whose diagnostic tests didn't find their tumors.

    My surgeon told me that breast MRIs find about 99 pct of tumors.

    I am not sure what the stats are on mammograms and ultrasounds, but all I know is, I will be pushing to get a breast MRI once a year now.

    I'm sorry that like me, you had to learn how ineffective our diagnostic methods are, the hard way :(

  • marijen
    marijen Member Posts: 3,731
    edited February 2018

    So do all of you have dense breasts that 3D mammos have missed lumps? Mine are not dense. But I would definitely rather have an MRI and I can lay still. I just don’t know how to convince them except my primary tumor was never found, only DCIS and an axilla lymph node. 1/12. It seems like they spend more effort telling us what we don’t have.


  • LeesaD
    LeesaD Member Posts: 383
    edited February 2018

    Had been going religiously for mammos/ ultrasounds yearly and started young due to dense breasts and lumpy breast tissue. My tumor not seen on mammo at all. Found on ultra sound and was told after sono/ biopsy 6 mm's. My breast surgeon was like great catch by radiologist as it's so small and my breasts so dense. Well after BMX my tiny tumor was actually 3 cm's.! WTF is right. That 'good catch' turned

    Into wow maybe they missed it a year ago and probably couldn't see it. I thought I too was doing everything right to catch something early.

  • OCDAmy
    OCDAmy Member Posts: 873
    edited February 2018

    So frustrating we all have these stories. I had my annual all-clear mammogram and didn't know (was not told) I had dense breasts. SIX MONTHS later I feel a pretty big mass...didn't fell like a lump specifically...and went for a mammogram and the tech says, it is probably nothing since you had a clean mammogram 6 months ago. Turns out I had a 4.5 cm IDC and DCIS. I asked my MO if that could have been there 6 months earlier and he said oh I am sure it was. I had a grade 2 tumor so no way it grew that fast in 6 months. I could have had a much less radical treatment if I had known about this earlier.

  • ksusan
    ksusan Member Posts: 4,505
    edited February 2018

    Because of my experience, my sister was able to get an MRI after a clear mammogram. MRI picked up IDC.

  • beach2beach
    beach2beach Member Posts: 996
    edited February 2018

    Same. Clean 3d mammo. Ultrasound picked up a 7mm area. Unfortunately there is no perfect screening tool, not even MRI. Due to a family history of BC, few years back I had mammo/sono then 6mths later MRI. 2yrs later I was deemed by the wonderful health insurance industry of not being high risk anymore, even though I was getting older, my sis had bc @48, and I had very dense breasts and previous biopsies.

    Thank goodness the ultrasound tech found it. My surgeon said had they not I probably would not have felt anything or anything show maybe on mammo until a year or so later.

  • Gussy
    Gussy Member Posts: 115
    edited February 2018

    I, too, received negative mammograms every year I've had them but also with the note that I had moderately dense breasts. The last one in June showed only enlarged nodes on the left. Primary phys. wisely sent me for an MRI immediately which showed a 5 cm. tumor. Went to Moffit CC for biopsy and dx - IDC e/p pos, hr2 neg. I decided to have tx in home town. BS decided that I should have chemo first then another MRI to see if it worked, if so, hopefully, a lumpectomy instead of mastectomy. The chemo shrunk it 50% or more so am scheduled for surgery Mar. 5. Then radiation afterwards, anti-hormone therapy after that. If the lumpectomy takes a lot of volume, which it may, I plan on having whatever reconstruction needed even though I'm a younger looking 79. I mentioned to BS and onc. about shouldn't women with dense breasts have MRI's every 5 years - the answer - insurance won't pay for routine MRI. BS thinks this tumor could have been developing for 10 years! Unbelieveable. I also had US at Moffit and tech couldn't see a thing although she had the MRI picture/position in front of her. She was amazed and frustrated. So far, chemo is over and had more side effects with Taxol than the A/C which has been disappointing but I can see that things are resolving a bit after only three weeks post last dose. Still hairless though. BS says that from now on I will have only MRI exams which is comforting.

  • MO-Beth
    MO-Beth Member Posts: 84
    edited February 2018

    Denise! This is going to sound really bad, I know..but I'm so glad you're alive! I just had discovered your blog last week and then read your blog and then I went to your Facebook page thinking it would be the more hip and current place to keep up and interact, right? (not a Facebook person per se) and tried to "friend" you and curiously, sadly, surprisingly, I saw no posts for a long time, like a couple of years. And I was thinking uh-oh, oh no! Okay...so I'm relieved to see you're here and just posted a couple of days ago. Just wanted to say that. :)

  • marijen
    marijen Member Posts: 3,731
    edited February 2018
      Written by Peter Lin MD, CCFP

    Mammogram or MRI for breast screening?

    In recent years, there has been a perception that many more patients were being screened with MRI scans compared with mammograms. The concern, of course, is how good are MRIs compared with mammograms? This paper evaluated 812,164 patients with over 2 million images from 2003 to 2013. The good news is that we are not overusing MRI scans. When they looked at patients with PHBC (personal history of breast cancer), only 4673 had MRIs out of 101,103 images that were done. For patients without PHBC, there were only 3149 MRIs vs over 1.9 million mammograms. So, MRI usage is not excessive.

    However, there was a higher biopsy rate for the patients who had MRI scans vs mammograms. For patients with PHBC, the MRI group had 6.3% (n = 236) biopsies vs 2.2% (n = 2231) for the mammogram group. For patients without PHBC, the biopsy rate following MRI was 10.5% (n = 489) vs 1.6% (n = 30 757). So basically, MRI did result in more biopsies. Most likely, this was because more abnormal lesions could be seen on MRI scans compared with mammograms.

    But the key question is whether MRIs pick up more cancers with these extra biopsies. Sadly, the answer is no. For patients with PHBC, the MRIs had less detected cancers on the biopsies than mammograms (MRI, 267.6 [95%CI, 208.0-337.8] vs mammography, 404.6 [95% CI, 381.2-428.8]). For the patients with no PHBC, the trend was the same but it did not reach statistical significance.

    Now, we do have to be careful not to conclude that MRI is not worthwhile. Think about this example of comparing physical exam vs mammograms. Palpable breast lumps on physical examination would have a higher chance of being cancerous. On the other hand, mammograms would show the cancer lesions, but they would also see many other lesions that are not cancerous. Now, if we sent all those lesions for biopsies then many of them would come back as not cancer. Hence, mammograms would have fewer biopsies that are positive compared to the palpable lump strategy. Now, of course, we would never conclude that mammograms are not good based on this comparison.

    So perhaps the MRI is also seeing a lot of interesting abnormalities and many are not cancerous. So the real trick is to identify which abnormalities are cancerous and which are not. With mammography, the readings have improved so much that we are able to separate out important versus non-important lesions. The same learning curve needs to happen with MRIs. In this review, there over 2 million images but less than 8000 were MRIs. So we need a bit more time for the learning curve for MRIs. This curve could possibly be sped up by setting up a good feedback loop. If for each MRI scan there was feedback as to what the lesion ultimately was, then that would speed up that learning curve. Imagine if for every MRI image we knew what the outcomes where, then we would be able to identify which lesions are important or not. This feedback loop on just a few thousand MRI images could dramatically shorten the learning curve.

    For now, the good news is that most of the patients were not being screened with MRI and as the authors of the paper suggested, we do need to come up with a list of criteria for patients that would benefit from MRI in addition to mammography. But ultimately, we need to learn what are important lesions on an MRI scan and what are not.

    JAMA internal med. 2/23/201

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