Fill Out Your Profile to share more about you. Learn more...

MRI experiences with false positives and over treatment?

Options
cymom
cymom Member Posts: 10

How many of you have been screening annually with MRI? How many false positives have you had? Do you feel it has been worth the price, financially, and in terms of quality of life?

Many of us at high risk (especially those who are young and/or have dense breasts) have been advised to get supplemental screening with MRI.

I have read up a lot about this, and it seems that the consensus is that any one at 20-25% risk or more should supplement mammogram with MRI. While I am worried about my risk of a breast cancer diagnosis, I am also very, very worried about the quality of life I will lose by subjecting myself to a screening tool, every year, that generates a high number of false positives. I have been through a nasty false positive BiRADs 5 that required surgery (not because the thing was dangerous, but because nobody will clear you annually if you've got something hanging around in your breast that images like a BiRADS 5. My lump was not a health risk, but I had to get cut up so my mammograms would look OK in the future.

On the one hand, I don't want to turn up with a breast cancer diagnosis someday and regret not catching it earlier with MRI. On the other hand, I don't want to find myself at the age of 70, still without breast cancer, with 30 years worth of MRIs behind me (at an out of pocket cost of $2000 a year, plus the cost of followup scans, biopsies, surgeries) with breasts that have been scrutinized and invaded in the search for a breast cancer that was never found. I don't want to look back at the time I lost getting screened and scanned and poked and prodded and sampled and cut up and preoccupied worrying about the next test result.

We have a high deductible plan, and we never meet the family deductible of $6K, so this is all out of pocket. We can afford it, but whew, what a price tag...

I have read that doctors recommend MRI for high risk women on the theory that you can catch more breast cancers early if you use a sensitive screening tool only on the highest risk women. But there are no studies showing that MRI in high risk patients actually does anything to improve mortality. For years we've been championing the power of early detection, but there's no evidence that early detection saves lives. The mortality reduction we've seen in breast cancer is largely attributable to improved treatment.

I am afraid of breast cancer, but I am also afraid of committing to a screening regimen that harms hundreds (thousands) for every cancer it finds. And I can think of a lot of things I'd rather do with $60 grand in my lifetime...

Thoughts?

«1

Comments

  • Ddw79
    Ddw79 Member Posts: 217
    edited May 2015
    Options

    Well said. I have this question too

  • lovevt
    lovevt Member Posts: 7
    edited May 2015
    Options

    cymom,

    So when my mother was diagnosed with BC for the second time I decided it was time to put myself into a high risk surveillance program.  I was about 35 at the time and my mothers first BC was at 43.  I would say for at least the first 5 years maybe even 7 I opted not to have an MRI because of the risk of false positives.  My surveillance doctor understood and we did a physical exam every 6 months and Mammo once a year.  Eventually after speaking with women who had BC which was only found on MRI I decided to opt for the MRI as well as mammo.  So we alternated mammo/MRI every 6 months..  In that time, at least 5 years maybe a little longer I did not have a false positive on MRI but I did have a false positive on Mammo.  Had to have a needle biopsy which came back benign.  Just this past December I had my annual MRI which picked up something.  I had a needle core biopsy on Dec 23 which showed atypical cells.  I had a surgical biopsy/lumpectomy on Feb 12, 2015 which in fact showed DCIS.  So my one positive on MRI did catch cancer early.  To me that was what I had been under surveillance for.  Now that being said I did that because of the high risk because of my mother.  I had thought about this for years.  And I did act on the diagnosis proactively and had a bilateral mastectomy. I didn't want this to come back as invasive cancer. That was the right choice for ME.  What I would say to you is what would you do with the diagnosis if you found something very early? Because that is what you are looking for on MRI.  For me, I didn't want to have radiation and take hormonal treatment for 5 years.  I wanted the lowest risk of reoccurrence with the least damage to my body.  Yes the surgery and recovery is difficult, more difficult than I could have imagined but I do not regret my decision at all.  I feel like I have made my decision slowly over the past 12 years. 

    I hope this might help you figure out what is right for YOU.  Only you know that.  But this is my story....Good luck figuring it out.

  • melissadallas
    melissadallas Member Posts: 929
    edited May 2015
    Options

    I'm in the same boat. I had several years done, but am opting out for right now, mainly because with my current insurance it would all be out of pocket. I just can't afford it. Their are options in the guidelines, and one is alternating mammograms and clinical breastvexams every six months

  • cymom
    cymom Member Posts: 10
    edited May 2015
    Options

    lovevt,

    Your story is worrisome to me.

    This is a recent piece on over treatment http://www.wsj.com/articles/some-cancer-experts-se.... A quote from the article:

    "Experts think only about 20% of DCIS lesions might eventually progress to become invasive cancer. But they don't know for sure, because virtually all DCIS cases are treated as if they are stage-one cancers, with lumpectomy or mastectomy, often combined with radiation... We are picking up on these conditions way before we know whether they are dangerous or not," says Duke's Dr. Hwang. "In our ignorance, it's safest to assume they are all dangerous, but we're hurting some women in the process.""

    Angelina Jolie said that high risk women have "strong choices." I don't feel that way. I feel like I have a Pandora's box, and I have to make a crapshoot decision about whether to open it. My genetics counselor also said whatever decision I made was the right decision for me. I find it very hard to accept that answer when doctors and researchers seem divided about whether current BC screening protocols follow the principle of "first do no harm" and doctors' treatment recommendations too often seem colored by the principle of "first don't get sued."

  • melissadallas
    melissadallas Member Posts: 929
    edited May 2015
    Options

    Cymom, the only problem with that is there is no way as far as things exist now to know which of those DCIS lesions will become invasive.

    As far as those of us who are determined to be "high risk" because of diysplasias or LCIS, it is even more nebulous because the evaluation of percentages of risk is highly subjective & inaccurate for an individual.

  • Ddw79
    Ddw79 Member Posts: 217
    edited May 2015
    Options

    Thanks for this post. I am stuck with this and concerned about it too. You outlined well the conundrum for us high risk people

  • cymom
    cymom Member Posts: 10
    edited May 2015
    Options

    You're right Melissa. But how risky is it to wait and see? And do you trust your doctors enough to give you an honest answer? I don't.

    I had a breast surgeon acknowledge to me that she was biased. She saw too many women come in with cancer, lost too many. It brought tears to my eyes, and I appreciated her candor, but then I left and worried. I came to her for science, not sentiment. What's her bias? She sees only the women who come in sick. She didn't see me crying and vomiting and unable to look my kids in the eye for the 4 days I believed I had cancer before the biopsy came back negative. For every one life saved, there are thousands of healthy women who go through exactly what I went through, or worse, who never would have developed cancer, or if they had, would have been treated successfully.

    I just don't know.

  • lastar
    lastar Member Posts: 551
    edited May 2015
    Options

    When I was diagnosed with high-grade DCIS and my Lx had involved margins, I had a breast MRI to determine the extent of the DCIS. The MRI indicated suspicious spots in my other breast, so when the next Lx was unsuccessful, I opted for BMX. Nothing was found in the other breast. Knowing what I know now about the low risk of contralateral occurrence and the complications that occur with reconstruction, I MAY have chosen differently. I am not dealing with 6-month mammos, unnecessary biopsies, and the stress of wondering if I have undertreated, so I personally have no regrets. I have a low risk threshold. These decisions are maddening! We can only do our best by educating ourselves, making the best decisions we can, and not beating ourselves up later. It's a shame that these decisions have to be influenced by the high cost of the medical industry.

  • melissadallas
    melissadallas Member Posts: 929
    edited May 2015
    Options

    My thougt, Cymom, as to how risky it is, is that if I am having regular screenings it is pretty unlikely I will "jump" to advanced invasive cancer. With some reservations, the NCI does NOT necessarily even recommend MRI, just six month alternating clinical breast exams & mammograms

  • ballet12
    ballet12 Member Posts: 66
    edited May 2015
    Options

    I was at higher risk due to previous biopsy results and family history, and never did anything more than the yearly mammo, and for a few years a clinical breast exam alternating with the mammo.  Never had a pre-diagnosis MRI.  I was told it wouldn't be covered.  Anyway, my pre-invasive cancer was caught just fine on the mammo, although it was more extensive than the mammo showed.  The only thing I might say, is that the second surgeon I had (from MSKCC) was surprised that the calcs weren't detected earlier.  They were there.  It took an astute radiologist to really carefully study three years of earlier mammos to compare with the one that yielded the diagnosis.  Maybe if I were seen in a high risk clinic, they might have studied the mammos more carefully.  I basically have no regrets.  The MRI's (post diagnosis) only showed false positives.  One hospital wanted to biopsy and the second said just watch it. It seems like early bc is usually caught with imaging, but the more advanced bc's, the more aggressive ones, tend to show up between yearly mammo sessions.  This can't even be prevented.

  • labelle
    labelle Member Posts: 134
    edited May 2015
    Options

    I don't know about follow up MRIs, but my first and only so far breast MRI done as a followup to a bad mammogram and a needle biopsy that found one small 7 mm tumor, showed what two surgeons thought to be DCIS around the tumor. As a result of the MRI, the surgery to remove the tumor also removed a lot of healthy breast tissue in an effort to get all the "DCIS."

    Final pathology after surgery showed no DCIS, just one very small tumor and some benign calcifications. I had much more extensive surgery than was needed due to what they thought they saw on the MRI and will never, ever again have surgery based on the results of an MRI. If they don't find anything with a needle biopsy, nothing is going to be removed! And the MRI totally missed the positive node (2mm). I'm thinking MRIs are not all they are cracked up to be.

  • lovevt
    lovevt Member Posts: 7
    edited May 2015
    Options

    cymom

    I know my story is worrisome.  I guess I was just giving you the side that an MRI did find cancer- contained but cancer.  This next statement is my thoughts after doing as much research as possible.  My doctors ALL said that 50% of DCIS can become invasive. And having a mother who had 2 totally separate cancers I felt my risk level was too high.  I presented the case scenario of just do a lumpectomy to get clear margins and wait and see w/ 6 months screenings.  Everyone thought that risk was too high.  For me- radiation and tamoxifen was not an option.  And I decided I could not wait and see and end up with invasive cancer that I then needed to do chemo and other treatments and end up in a much worse situation.  But like I said that was how I felt for me.  I think all you can do is tons of research and soul search to find out what YOU are comfortable with.  I made my decision and do not regret it at all. 

  • melissadallas
    melissadallas Member Posts: 929
    edited May 2015
    Options

    The subject of diagnostic MRIs for an abnormalty seen on other imaging & MRIs for women already diagnosed with cancer is a completely different subject than high risk women being followed with regular screening MRIs.

  • labelle
    labelle Member Posts: 134
    edited May 2015
    Options

    I thought the topic had to do with false positives and MRIs. As someone now at high risk for BC (having been diagnosed once puts me in that category) I am scheduled for ongoing follow up mammogram and MRI beginning in Aug and certainly, given my past experience, have some doubts about this practice. It is expensive. I too, have a high deductible and can't help but wonder for how long. Five years? Ten? Twenty? I think the original poster raises some valid questions about the practice. I worry about a recurrence, but I don't want to spend the next 25 years being "scanned and poked and prodded and sampled and cut up and preoccupied worrying about the next test result" especially given that my first experience with an MRI has shown me false positives not only happen but can cost one a good chunk of breast tissue.

  • cymom
    cymom Member Posts: 10
    edited May 2015
    Options

    lovevt,

    Reading your story, I suspect I would have done the same thing in your shoes. But DCIS is atough spot to be in. It's like BRCA testing - maybe you have a crazy family history and then you turn up with a mutation that's a slam dunk super-duper high risk one. The choices are pretty black and white, so you're grateful for the test and you make peace with drastic preventive measures. But you could get a variant of uncertain significance, or you could test positive for a less studied moderate penetrance gene. What to do? How to make peace with a huge decision like this when the information is so woefully inadequate?

    I hope I haven't upset anyone. I'm just feeling grumpy and negative about it all. It's like I'm damned if I do and damned if I don't.

  • jessica749
    jessica749 Member Posts: 50
    edited June 2015
    Options

    My thoughts:

    --It's not a perfect world, is it? We can never know what will or won't happen can we. Life is full of tough choices. What can you sleep with more easily at night should the "worst case" scenario, whatever that is to you, happens? Write it all down. Make a T chart. Plus side, minus side. See where you come out.

    --I don't know that 3D is as good as MRI.

    --I don't know what is "high" about the false positive rate with MRI. When my MRI showed something, no one acted like it was a good chance it was wrong. Believe me, I wished for high false positives. But no one reassured me that was at all what was happening (though of course always could be). The radiologist, the doctor, the nurse: they were all on to me the day or two after the imaging to come back for another look on ultrasound. They didn't just dig in to biopsy based on the MRI. They wanted two confirming images. That was the way they rolled, at Sloan, then. The utltrasound confirmed something funky. Then the biopsy based on the MRI, confirmed by the u/s, happened.Had the ultrasound NOT shown anything, I'm not so sure they would have gone in for a biopsy. There might have been a wait and a follow up….2 confirming images was the rule, they told me then. The mammogram had nothing….but since the other two had something they were pretty sure in hindsight I realize that the MRI was not 'false'. But I remember wishing it.

    I don't know that just because stats show MRI doesn't "improve" mortality that that really means anything, frankly. If an MRI catches your breast cancer, as it did mine, where a mammogram did not, does it really matter to me what the eventual endgame of my life is going to be? No. I'm glad I had the MRI, and I'm glad it was caught "early". Regardless of what happens, I won't regret ever screening and treating my IDC and DCIS as I did. My only regret, to this day, remains that I did not screen more intensely, sooner. Perhaps I would have seen the IDC when it was just all DCIS. Perhaps not, no way of knowing.


  • jessica749
    jessica749 Member Posts: 50
    edited June 2015
    Options

    But just to add, more succinctly in response to your first questions:

    --I was NOT advised to screen with MRI despite elevated risk, at first. Therefore I DID NOT. My doctor at the time just gave me mammograms -- 2x a year!!!! Unreal. Nothing about dense tissue ever told to me, etc.

    --when I WAS finally advised to screen with MRI by a new doctor because of the same elevated risk, I did. One MRI, and BINGO! IDC discovered. So "lucky".

    So, for me, I had one MRI screening which was advised for my elevated risk and there was nothing false about the positive reading unfortunately. ;o)


  • lovevt
    lovevt Member Posts: 7
    edited June 2015
    Options

    cymom

    You haven't upset me at all.  I was trying to help you.  And I just wanted to give you the other side of it.  I know there is no good answer here.  No right or wrong.  How do you figure it out...I know its hard but all I can say is that I knew from deep in side what I had to do.  I hope you can find that place and feel comfortable with the decision.  I feel lucky because my insurance did cover the MRIs so the money wasn't an issue.  I know someone personally that her insurance denied her MRI and she skipped them- and it did become invasive cancer.  Not to throw more info at you.  This is a game of statistics and where will you fall... sorry but that's the truth.

    Good luck with this.

  • vlnrph
    vlnrph Member Posts: 487
    edited June 2015
    Options

    Do keep in mind that MRI is sensitive but not specific. Meaning, it will see lots of things but what they are may require further imaging such as ultrasound. I did not consider the call for me to have US as a false positive. It seemed to me to be more of an opportunity to clarify the situation and have additional data for comparison in the future should similar curiosities be detected.

    I had to fight insurance in order to have coverage for a scan after a 6 month interval as suggested by the radiologist to prove stability. I won however then had to file a complaint with our state commissioner when payment was refused! They eventually had to provide a significant amount of interest $ due to their apparently intentional delay...

    I am hopeful that 3D mammogram/tomosynthesis will be a reasonable option especially given the phenomenon of lobular cancer being difficult to recognize via traditional digital screening. I'm not thrilled about the potential for gadolinium contrast causing kidney damage or accumulating in brain tissue with repeated exposure so might prefer to back off to every other year, anticipating another decade or two of follow-up.

  • Ddw79
    Ddw79 Member Posts: 217
    edited June 2015
    Options

    I already have some kidney deterioration and brain damage and heavy metal poisoning due to having many MRI s for a non related reason

  • MissE1aineous
    MissE1aineous Member Posts: 1
    edited June 2015
    Options

    I'm a newbie here so I want to let you all know how much I appreciate this forum and reading your stories. Thank you all for sharing because it's helping me understand so much about this terrible process.

  • moderators
    moderators Posts: 7,915
    edited June 2015
    Options

    MissE, thank you for posting and welcome to Breastcancer.org!

    We'd love for you to share your story with us, too.

    --The Mods

  • melissadallas
    melissadallas Member Posts: 929
    edited June 2015
    Options

    Actually BereavedDaughter, most breast cancers are not caught by regular screening. They are found with DIAGNOSTIC mammograms that are scheduled because a woman finds a lump or other troubling symptom. Women who have regular screening are also sometimes diagnosed stage IV right from the beginning

  • melissadallas
    melissadallas Member Posts: 929
    edited June 2015
    Options

    We high risk women are aware that early detection is good. The original post in this thread is the debate on how we choose to be followed and whether six-month alternating MRIs and Mammograms is how we want to do it.

  • cymom
    cymom Member Posts: 10
    edited June 2015
    Options

    Bereaved,

    Thank you for the link.

    I think the primary point that this piece makes is that there IS a mortality benefit (in the range of 20%-40%) from mammography screening over the age of 50. Too many women in this group aren't getting their mammograms every 1-2 years, and I agree that's a huge danger.

    The benefit of screening for younger women is not as clear. Younger women are already getting hit with more false positives from mammogram. Add MRI, and you're adding a false positive rate of something like 10%-20%. And while there is evidence for mortality benefit from mammogram over age 50, there are no studies documenting a mortality benefit from additional MRI screening. We think that a higher sensitivity tool like MRI would save more lives, but we don't actually have the data.

    I've read that MRI picks up about 90% of DCIS vs. 50-60% picked up by mammography. I've read that we overtreat DCIS something in the range of 50%-80%. Taken together, I think this means that the risk of false positive AND over treatment is greater if you choose to screen with MRI.

    I'm a young high-risk woman whose 1 year risk may be closer to someone in her 50s or 60s. But the model they use to make that prediction has relatively weak predictive value (it works a little better than a coin flip). I'm being asked to make some pretty big choices on the basis of very little science.

    For what it's worth, doctors don't talk about any of this when they talk screening. Mine just looked at the risk number the model churned out, asked me if I was claustrophobic and advised an MRI every year or two, depending on how "risk averse" I am. I know doctors are rushed, but this isn't even close to adequate.


  • jessica749
    jessica749 Member Posts: 50
    edited June 2015
    Options

    Where does it say that younger women are getting 'hit with more false positives from mammogram"??

    I would wager that there are more false negatives than false positives for younger women. The false positive - an inconvenience and expense. And a false negative is scary and life threatening and more expensive.

    I think your first point about the article is indeed it's main idea (there is a mortality benefit from mammography screening for women OVER THE AGE OF 50). But for younger women, much less clear. I think this is the MAIN TAKEAWAY for me:

    Sarah Williams, Cancer Research UK's health information manager, said: "There isn't one definitive answer to the question of how the benefits and harms of breast screening stack up – individual women will have different views on the factors that matter most to them, and also there are a number of different ways to bring together and interpret the evidence."

    In other words, who knows really. Do what you are comfortable with / can afford.

  • melissadallas
    melissadallas Member Posts: 929
    edited June 2015
    Options

    When 80 percent of biopsies are benign that is a lot of false positives, regardless of your age. The methods of screening we have are terribly non-specific. We need something a lot better than mammograms, ultrasounds & MRIs & all those biopsies cause a huge amount of anxiety & financial strain. I don't want to feel forced to get a mastectomy because I can't stand or afford to have constant testing & screening.

  • cymom
    cymom Member Posts: 10
    edited June 2015
    Options

    jessica,

    Actually, yes, women in their 40s do get more false positives on mammogram. I'm not sure whether its due to breast density or something having to do with higher estrogen, but it's true. You can find the report from the USPSTF online. This is a recent article that discusses it.

    "In the report, the task force also showed that the harms associated with mammography steadily decrease with age. For example, there more than 1,200 false positives for every 10,000 women who undergo mammography in their 40s; by their 50s, the false positive rate declines to over 900 per 10,000 women, and even further down to just over 800 per 10,000 in their 60s." http://consumer.healthday.com/cancer-information-5...

    We do need better technologies for screening and better models to predict breast cancer risk. In the absence of that, I just want full disclosure and open discussion from my doctor. I know I didn't get that, and it seems like few women are.

  • jessica749
    jessica749 Member Posts: 50
    edited June 2015
    Options

    Okay, I am mistaken - but not because the article you cite says anything about it. The article you cite says nothing insofar as I can see about false negatives. It's not even on the table.

    But thinking about it--given that breast cancer is not at all common among women in their 40s, of course MISSING its presence happens far less than an image worth investigating further would show up….i.e. a 'false positive.'


  • jessica749
    jessica749 Member Posts: 50
    edited June 2015
    Options

    Melissa that is exactly why I got a double mastectomy. I couldn't STAND the thought/time/expense of constant vigilance, constant testing, constant investigation / biopsy etc. Diagnosed in my 40s I liked to think I had hopefully decades ahead of me, and it was just too much, and the future of health insurance/options just too risky to me.

    And to know that I could go through all that, and have it not only be wrong on the 'positive' front, but above all be wrong in the false negative, was unacceptable to me. I suppose a double MX is the ultimate in 'over treatment'!!