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sweatyspice
sweatyspice Member Posts: 922

So....I've spent some time living the "to MRI or not to MRI" debate before my surgery last Jan.  In the end, I had an MRI which turned up a second area of DCIS.

Fast forward.

Now, I'm only scheduled for Mammo follow-ups.  This kind of freaks me out, because at this point I can emotionally live with a DCIS recurrence and mastectomy, but I don't want to be in the 50% where recurrence is already invasive by the time it's discovered.   

BS says that post-op MRI would pick up all the scar tissue, etc etc etc.  That mammo is their protocol and that whatever I might get in the future would be picked up on mammo eventually.  When I mentioned my fear of invasion, her reaction gave me the impression that from her perspective, I'd already made the decision to take that risk.

She said that she thinks pre op MRI is very important, but not post op. 

She also mentioned that she'd been at the San Antonio conference and this had been discussed, and the evidence wasn't there to support post op MRIs.  Does anyone know what papers were presented on this topic or where to look?

She also said that ins co's weren't paying for it - and I suspect that's the real reason - but I might be willing to pay out of pocket once a year or every other year or something - depending on whether I can get the cash to cover the cost....

I know other people have alternating MRI/mammo followup.....not sure what to think.

Ah, here comes a hot flash.  Live to sweat, sweat to live!.  

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Comments

  • Jelson
    Jelson Member Posts: 1,535
    edited December 2010

    Sweaty, I had an MRI after my excisional biopsy after I asked the radiology oncologist for it at my first appt. of course it showed scar tissue, but nothing suspicious. he has since put me on a schedule for MRI and mammography once a year. His logic being that my original DCIS was not picked up by mammogram. I asked why I should have a mammogram at all, and he insisted that I get an annual mammogram. I don't know for how many years I will be getting MRI. I am being followed by a medical oncologist and radiologist, I haven't seen the BS since my surgical followup appt.

    If I hear anything about no more post operative MRIs at my next radiologist appt, I will check in with you.

    Take Care, I would bitch slap that BS for you if I could!

    Julie E 

  • IronJawedBCAngel
    IronJawedBCAngel Member Posts: 470
    edited December 2010

    I've been so busy with my Dad I haven't had time to go through the transcripts so I am not sure what evidence she is referring to.  My problem with so many of these studies is they only focus on survival.  They place no weight on preventing advancement from DCIS to invasion, and potential of mastectomy and chemo, their attitude is they will catch it eventually on mammogram and treat it at that time. Quality of life does not enter into the equation.  I do know that a study was just recently released by one of the Radiology peer groups advocating annual breast mri for breast cancer survivors.  My post treatment follow-up plan includes an annual MRI in addition to my mammo.  We usually schedule them 6 months apart.  Last year was the first year that I did not comply as I just didn't have the money. Technically, my insurance company says they will cover it, but as they don't pay anything until I have met a $5000 deductible, the cost is out of my pocket anyway.  I have never had a false positive from any scar tissue.  In 2009 I had a MRI guided biopsy for an area that lit up on my good breast that turned out to be benign breast disease that does bump that breast up to high risk.  I think that probably makes it even more important to get my MRI.  If your breasts are dense, many believe you should be screened with MRI.  You need to decide for yourself if it is worth the money.  For myself,  I will probably bite the bullet and accept increasing my medical debt in this coming year and have the MRI, but I won't have it at a local facility.  My MRI guided biopsy was at a free standing,  not connected to a hospital in any way, facility in Nashville.  Because of the difference in coding with using a dedicated facility, my insurance did pay the entire bill, so I will be going back for my followups.  Every MRI I have had at our local facility has been $3000, and when I took the discs to the facility in Nashville, they had to redo the MRI because of "poor image quality", so if you decide to have one, do some research and find the best facility for you.  I have learned they are not all equal.  There was a thread several months back either in high risk or one of those threads that pertained to breast MRI and there was a radiologist who posted with some recommendations.  It was pretty interesting.  Good luck with your decision.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2010

    Hmmm.... MRIs are recommended for women who are high risk, and after a diagnosis of breast cancer, most of us are considered to be high risk to be diagnosed again. You would think that a personal history of breast cancer trumps a family history of breast cancer when it comes to assessing risk level, right?   To me, it's simple: an MRI should be part of the screening protocol for anyone previously diagnosed with BC and it should be covered by insurance. 

    Add to that the fact that your earlier diagnosis of DCIS was better detected by an MRI than a mammogram and that should seal the deal, at least with your surgeon if not with your insurance company.

    I don't get why your BS is saying that annual MRIs are not an appropriate follow-up.  Yes, an MRI will pick up scar tissue but anyone properly trained to read an MRI will be able to identify that.  I had a single mastectomy but get annual MRIs on my remaining breast.  I've had two excisional biopsies on this breast (so there's lots of scar tissue) and two needle biopsies.  I have a small stable benign cyst in that breast (which the MRI always identifies), and benign calcifications (which were biopsied previously).  Despite all that, I've had no problems with the MRI showing false positives.

    I do think that the reason why breast cancer patients aren't on the list for annual MRIs is simply because not enough research has been done on this yet.  The MRI studies have been done on high risk women, women who have strong family history of BC or who are BRCA positive.  The studies have not yet been done (or completed) on women who have a previous history of BC.  So despite the fact that we are considered to be high risk, we don't meet the specific criteria of the studies so we aren't on the list for annual MRIs.

    As for what's been presented at the San Antonio conference, while there were discussions over the weekend about screening, I haven't found any write ups yet.  Dr. Love's blog only goes as far as Friday's presentation and there is nothing about MRIs there.  In previous years, there have been presentations about the benefit of MRIs for high risk women; that's the info that I mentioned in my previous paragraph where those with a previous diagnosis of BC were not included in the studies so we aren't included in the recommendations for getting MRIs. Maybe that's what your BS is referring to. Here's this year's schedule:  http://www.sabcs.org/ProgramSchedule/ScheduleGlance.asp

    And here is a recent study reported by BC.org that does start to talk to the issue of MRIs for women with a history of BC:

    http://www.breastcancer.org/symptoms/testing/new_research/20101129.jsp "Women who've been diagnosed and successfully treated for breast cancer are at risk for recurrence (the original breast cancer coming back). These women also have a higher-than-average risk of being diagnosed with a new, second breast cancer. Because of these risks, regular breast cancer screening is very important for women with a personal history of breast cancer. This study suggests that yearly screening with BOTH mammography and breast MRI (magnetic resonance imaging) might be better than only a yearly mammogram for women with a personal history of breast cancer." 

    Another article about the same study:

    ACS recommends annual MRI screening in women with family history ...    "Women with a personal history of breast cancer should consider annual screening with MRI in addition to mammography, according to a study presented today at the annual meeting of the Radiological Society of North America (RSNA).

    The American Cancer Society (ACS) guidelines currently recommend annual screening with breast MRI in women with a known gene mutation or with a strong family history indicating a lifetime risk of breast cancer greater than 20 percent. However, the guidelines say there is insufficient evidence to recommend for or against MRI screening in women who have already had breast cancer themselves."

    And some study results that support the use of MRIs for "high risk" women:

    MRI vs. Mammography for High-Risk Women - National Cancer Institute  "Study 1 Results:  Each woman in the study was followed for about two years. During this time, researchers found invasive breast cancers or non-invasive tumors (such as ductal carcinoma in situ, or DCIS) in 40 of the women. Forty-six percent of the tumors were small (1 centimeter or less) and 77 percent were confined (localized) to the breast. While the clinical breast exam detected 16 percent of the tumors and mammography found 36 percent, MRI sensitivity was found to be 71 percent. MRI sensitivity was even more pronounced in cases of invasive cancer (spread beyond the layer of tissue in which it developed), with 20 percent found by CBE, 26 percent by mammography, and 83 percent by MRI.

    Study 2 Results: The results so far suggest that MRI offers the greatest sensitivity - 96 percent - for correctly diagnosing breast cancer in this high-risk group. In contrast, the sensitivity rate for detecting breast cancer was 25 percent for CBE, 43 percent for mammography, and 47 percent for ultrasound. Unlike the Dutch trial (Study 1), this trial found that MRI actually resulted in fewer cases of false positives than the other forms of screening, leading the German researchers to suggest that MRI should replace mammography as a screening tool for high-risk women.

    Study 3 Results: MRI was 100 percent sensitive for correctly detecting breast cancer - finding a tumor when there was one - but only 83 percent specific. That is, 17 percent of MRI's positive findings were false alarms. Researchers with this study concluded that MRI sensitivity is encouraging but that the high false-positive rate limits its use as a routine practice. "

  • feh
    feh Member Posts: 63
    edited January 2011

    Sweaty spice -- you had a lumpectomy both? breasts for 0 stage in-situ cancer, and radiation, and tamoxifen.  I had only an excisional biopsy for my palpable lump, which showed DCIS and LCIS.  Nothing more.  12 years ago.

    It sounds as though your surgeon thought you understood that with all that was done, the DCIS was removed completely with clear margins.  That would be "gone" to the best of any human's ability.  You already know that DCIS is not very likely to become invasive, but yours was removed.  You know, too, that our bodies will, most often, destroy cancerous cells.

    This is not a criticism of your situation.  It's a very big question for me right now.  How much is too much?  When does cancer phobia overcome all reason - and practice.  It sounds like you should be in good shape as much as any human, or machine can tell.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2010

    Twiddle, to my understanding sweatyspice has multi-focal grade 3 DCIS with necrosis.  The risks that this type of DCIS might become invasive are very high - it in fact many experts would say that it's almost a certainty.  The only question is when.  Of course, if all the DCIS is removed then the problem is taken care of, but with multi-focal DCIS, it's never possible to really know for sure that all the DCIS has been removed. If a few errant cancer cells were left, and if they were not successfully killed off by radiation or Tamoxifen, that's when a recurrence happens.  With DCIS, on average about 50% of recurrences are invasive.  So I think sweatyspice's concerns, and her question about enhanced screening with an MRI, are very valid.  You do raise a really good point about "cancer phobia". Having been on this board for 5 years, I have seen a lot of women for whom the fear does become overwhelming and borders on phobia, but I don't think that wondering whether an annual MRI might be a good idea fits that definition, or in fact, comes anywhere near it.

    All DCIS is not alike.  Small amounts of low grade DCIS might never become invasive (to your comment that "You already know that DCIS is not very likely to become invasive") but that is certainly not true of multi-focal high grade DCIS with necrosis. 

    For anyone who's already had BC and who therefore is higher risk than average to be diagnosed again, I simply don't understand why so many in the medical community don't agree to enhanced screening, with the inclusion of annual MRIs.  It makes no sense to me.  If a family history of BC is enough to get most within the medical community (and insurance companies) to agree that MRIs are warranted, how in the world could a personal history of BC not be enough?  Adding MRIs to the annual screening of former BC patients is just prudent, if you ask me.

  • feh
    feh Member Posts: 63
    edited January 2011

    Uh - the statistics vary widely.  Just today, I received an alert that the medical community has decided that malignant breast lumps can be painful.

     I do consider breast MRI an overdo when significantly clear margins are taken.

     Let me be absolutely clear on this -- any 'phobia' is due to the current status of diagnosis and treatment.  It is not the fault of the women who face this maze.

    I'm staying off now.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2010
  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2010
    I had a mri this morning. I am having second thoughts about mri's. My experience was a little different today. In the past I went into the tube for about 15 minutes and outside of the banging noise that was pretty much it. Midway through the mri today they stopped and said that they were then injecting the dye. I've never been told before when the dye was injected nor did I feel it. I felt it pump into my arm, and then up through my chest. I felt as if in the middle of it I would throw up. I felt the dye raise up to my throat to my nasal cavities. I had an odd taste in my mouth and sick feeling in my stomach. I tried to control a sneeze but couldn't. My nose began running. I did everything I could to remain still until the mri was completed.


    After coming home, I went shopping. I noticed that my breast itch like crazy. I didn't feel that great today, so about 30 minutes ago, I decided to look up mri contrast dye. I had no real risk factors but had no idea the side effects of mri's. My reaction was mild, but could the next one cause kidney failure or a stroke? Are mri contrast dyes safe? Am I over reacting?



    NSF / NFD: The Worst "Side Effect" of Gadolinium



    As stated above the worst side effect or complication of gadolinium is development of Nephrogenic Systemic Fibrosis (NSF) or Nephrogenic Fibrosing Dermopathy (NFD).NSF/NFD is a progressive disease that has no cure and no consistently effective treatment. It is painful, extremely debilitating, and sometimes deadly. According to recent studies, these serious gadolinium symptoms that may later be diagnosed as NSF or NFD can develop within several days of using gadolinium exposure, but can take up to 18 months for the NSFsymptoms or NFD symptoms to appear.



    Side effects, hives, itch, headache and more serious side effect potentially fatal disease known as nephrogenic systemic fibrosis, or NSF....and stroke.



    BTW, those who have the mri contrast dye, drinks tons of water after wards.

    I also read that people who have mri's aren't allowed to give blood for 12 months. That the contrast remains in your blood stream and it cannot be filter out?




    So...I am not sure I want a mri every year.



    Tonight, I'm drinking Pau D Arco tea to detox.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2010



    What is Gadolinium?



    This is an FDA approved contrast agent for MRI. Gadolinium, or gadodiamide, provides greater contrast between normal tissue and abnormal tissue in the brain and body. Gadolinium looks clear like water and is non-radioactive. After it is injected into a vein, Gadolinium accumulates in the abnormal tissue that may be affecting the body or head. Gadolinium causes these abnormal areas to become very bright (enhanced) on the MRI. This makes it very easy to see.

    //////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////////



    Gadolinium is a rare metal found in the earth. Gadolinium is atomic number 64 on the periodic table; which many of us studied in high school or college chemistry. It is a silvery metal that is “ferromagnetic” or strongly attracted by a magnetic, which makes it an ideal product to enhance MRI and MRA images. Gadolinium is a stable compound in dry air, but when exposed to moist air, it will tarnish and forms a loose “film” which falls off and exposes more of the surface area to oxidation. The gadolinium also reacts to water and will dissolve in dilute acid.

    Besides being used as a contrast agent for MRI and MRA images, Gadolinium has a number of other uses. Gadolinium is used to make a component of our microwave ovens, it is used in a compound that makes phosphors for color television tubes and it is also used to make computer memory and compact discs. Gadolinium is also used in nuclear marine propulsion as a burnable poison. Gadolinium also has other unique metallurgic properties so that a very small amount of gadolinium can improve the workability and resistance of iron, chromium and other related alloys to oxidation and high temperatures. Today, the medical profession uses gadolinium regularly as an intravenous agent to enhance the images taken by MRI and MRA studies.

    Because gadolinium is a highly toxic, when it is used as a medical contrast agent it is attached to another chemical called a “chelate.” A chelate is a compound that “holds” the gadolinium so that it is not toxic and the body can process the gadolinium and dispose of it through our natural waste filtration system, the kidneys. Under most circumstances, the gadolinium is simply passed out of the body through the kidneys in urine. However, in some individuals who have compromised kidney function, the kidneys cannot work efficiently to remove it and some of the gadolinium remains in the body causing potentially serious gadolinium side effects. The longer the gadolinium stays in the bloodstream, the more chelates lose their hold on the gadolinium and break off, allowing more of the toxic gadolinium to contaminate the bloodstream. As the blood circulates throughout the body, the gadolinium is deposited in the skin, tissue and numerous organs. Once the gadolinium has taken up residence in human tissue, there is no proven way to remove it.

    Over the past years, physicians saw patients with renal failure who received toxic gadolinium develop a deadly disease, and now gadolinium has been linked with a serious disease called Nephrogenic Systemic Fibrosis (NSF) or Nephrogenic Fibrosing Dermopathy (NFD).
    http://www.usrecallnews.com/2008/04/gadolinium-health-alert.html

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2010

    Only 15 minutes for your MRI?  Wow.  Mine are always at least 30 minutes and a couple of years ago, when a new cyst showed up, it went for 45 minutes (maybe because they took a bunch of extra views to confirm that the cyst was a cyst).

    I always notice the contrast dye when it starts going into my arm and sometimes I feel a little nauseous for a minute or two but it's never bothered me beyond that.  Still, whenever there have been threads on this board about how mammos aren't safe (because of the radiation) and that women should have MRIs instead (because MRIs don't use radiation and therefore are safe), I usually point out that we really haven't been doing MRIs long enough to know if they truly are safe.  I suspect that just like every other test that we subject our bodies too, eventually we will find out that MRIs aren't quite as safe as we thought.  I've always felt that way.  

    Despite this, I know that for me, with dense breasts, MRIs are more effective than mammos (though I still get annual mammos - I believe that no single screening tool is effective enough on it's own for someone with my degree of breast density).  And the simple fact is that life isn't risk free - we put ourselves in danger every single day - so for me it's all a question of making the best decisions I can by balancing risks and benefits.   When I consider my BC risk and weigh the pros and cons of MRIs and mammos, I happily choose to have an annual MRI and an annual mammo rather than risk missing a new BC until it's more advanced and requires radiation, chemo and hormone therapy and is life threatening. 

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2010

    Beesie, in the past it seemed as if the mri's were 15 minutes (in and out pretty fast). It could had been longer. Yesterday, I was there about an hour (30 minutes actually in the tube). I've always had the IV so I know I've had the contrast dye, but never noticed it going into my arm, or throughout my body like yesterday. Before I had them done at an imaging Health Center, and the one yesterday at the hospital.



    This morning I got a call, and was told that they want me to do the mri all over! I said to them that I preferred not to ... unless they saw something suspicious. The woman who did the mri said she would call the person who reads the mri and would get back to me. YUK! I don't like the idea of getting two mri's so close together. Right now, I'm not sure about mri's.



    One thing about mammograms is that they only radiate the breast, where the mri contrast dyes go throughout your body...I think.

  • dmho
    dmho Member Posts: 121
    edited December 2010

    i asked my BS about having an MRI and was told that it was not needed since I have DCIS. That it would not show any thing anyway.

  • thenewme
    thenewme Member Posts: 1,611
    edited December 2010

    If one is so inclined, they could find a conspiracy theory hiding behind every medication, treatment, or medical substance available out there in the big mysterious internet.

    As usual, the personal risks must be weighed against the potential benefits of any treatment.  To put this MRI-gadolinium risk into perspective, rational thought and scientific evidence-based facts are needed.

    Per the FDA Drug Safety Newletter (link HERE) , "...a retrospective study with Omniscan in about 370 patients with severe renal insufficiency estimated the risk of NSF to be 4%"

    That's 4% of a very specific subset of patients with "severe renal insufficiency or renal dysfunction due to the hepato-renal syndrome or in the perioperative liver transplantation period."

    So *of course* there's some level of risk involved with contrast MRI, and maybe even some as-yet-unidentified risk, but to run around like chickens with our heads cut off worried about NSF from a breast screening MRI seems a bit bizarre. 

    Skip the MRI if you feel uncomfortable, or discuss it with your medical team, but please get the facts before panicking.

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2010

    dmho,

    In the past it was believed that MRIs couldn't spot DCIS because MRIs are not as good at "seeing" calcifications.  But it turns out that MRIs have been proven to be very good - better than mammos - at spotting DCIS, even if the DCIS presents in the form of calcifications.  In other words, MRIs show malignant calcs but they aren't great at showing benign calcs.

    That's in fact exactly how it worked for me.  I have benign calcs in my left breast and they don't show up on my MRI.  But my DCIS, which showed up as calcs on my mammo, showed up loud and clear on my MRI.  The MRI in fact showed a much larger area of DCIS than my mammo, and the MRI was proven to be correct.  I know that quite a few other women here have had the same experience.

    MRI Is More Sensitive At Detecting Early Signs Of Breast Cancer ... 

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2010
    Thank you Beesie for your explanation

    From what I've read mri's are better at detecting dcis. After each of my dcis dx, the BS ordered a mri or a gadolinium type of mammo. Then I had two annual mri's...one yesterday.



    After positive biopsies, my doctors order mri's. The BS showed me the mri pictures. The DCIS lesion lighted up like Christmas lights on the mri. She said the mri picture gave her a better look at what was going on in my breast. To add...the mammo, nor did the mri picked up the multifocal high grade dcis.



    Mammo's maybe ok for dcis followup. The mammo's did pick up both dcis califications.

    Because I am doing the "careful watch approach" (I did not do conventional treatment), I need to be vigilent. I can't forget that I'm at higher risk for a recurrence. I am also high risk due to dense breast, a lot of scar tissue, fungal infections, and I have very lumpy breast. This is why I've sought out alternative approaches to stay cancer free.



    Yes, I'm nervous about putting toxic metals into my body. Cancer makes me a little nervous as well and even more the thought of cancer treatments. Knowledge and understanding makes me feel more in control and gives me peace of mind. I am not panicking about the mri...but needless to say concerned.



  • dmho
    dmho Member Posts: 121
    edited December 2010

    Thank you. When I have my appt Tuesday I am going to discuss this with her. Since I have such a big decision to make I think this would be a big help.

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2010

    Since I know the rad doc is calling tomorrow in hope to talk me into repeating the mri, I'm doing a little more homework. I'm concerned about doing another mri right now, and concerned if I don't. Would any of you feel nervous about having the dye put into your veins within a weeks time?



    http://www.oncolink.org/resources/article.cfm?c=3&s=8&ss=23&Year=2007&Month=6&id=14254



    MRI spots high-grade DCIS more often than mammography: study



    "High-grade DCIS is important to diagnose because it is easily curable with resection," noted Dr. Kuhl, vice chairman and professor of radiology at the University of Bonn, Germany. "If left untreated, it will progress to high-grade invasive cancer."



    Dr. Kuhl and colleagues investigated the sensitivities of high-resolution MRI and state-of-the-art mammography for diagnosing DCIS. Among more than 5,000 women in the study, 167 were finally diagnosed with DCIS.



    MRI was positive in 153 of 167 of these women (92%) while mammography was positive in only 93 of 167 (56%). "This difference is statistically significant at a very high level," Dr. Kuhl said.



    MRI identified 98% of high-grade DCIS whereas mammography identified only 52% of high-grade DCIS. MRI identified 85% of non-high-grade DCIS and mammography spotted 61% of non-high grade DCIS.



    "Mammography was less sensitive for high-grade versus non-high-grade DCIS," Dr. Kuhl pointed out.

    f the 72 DCIS that were only detected by MRI, 69% were high grade and 31% were non-high-grade. Of the 12 DCIS only detected by mammography, 17% were high-grade and 83% were non-high-grade.

    Commenting on these results, Dr. Julie Gralow, of the University of Washington and moderator of the press briefing on the study said: "There is a lot of controversy over treatment of low-grade DCIS in this country...so this study showing that the highest-grade DCIS is what is most commonly found on MRI and actually missed in a good number of mammograms is really key, and I think will help us pick out which cancers really need some intervention and which might not."

    THIS ARTICLE CONCERNS ME ABOUT ONLY DOING A MAMMO...
  • sweatyspice
    sweatyspice Member Posts: 922
    edited August 2013

    Let me clear some things up -   

    Mastectomy was recommended in my case.  I couldn't emotionally handle that, and pushed back and pushed back until I found a BS/PS team who, due to the specific location of my areas of DCIS, were able to give me a breast lift and reduction - because the areas of DCIS were areas that would have to be removed in that sort of procedure anyway.  (You don't want to know how many Dr's I saw.)

    Mind you, this was not a procedure I wanted.  I was happy with my middle aged sag-bags. 

    So yes, I guess you could say I had an extreme lumpectomy.  The margins were clear of DCIS but contained ADH and LCIS.  Including in what I thought of as my "healthy" breast - when they did the reduction surgery they biopsied the tissue from that breast as well. I think that's the one with LCIS.

    After consultations with more BSs and oncs than I care to remember, I was told that I'd have approximately a 20% likelhood of recurrence if I chose this path over mastectomy.  I accepted that risk.

    My thought process is that my body, for whatever reason, is inclined to make breast cancer cells.  Now that my breasts are disfigured anyway, and the sensation's all changed (and not in a good way), I'm less attached to them.  I'll say goodbye if I have to at some point, but I don't regret keeping them for a few bonus years if I fall into the unlucky 20%.

    I don't really expect that I'll have a "recurrence."  Technically, that's inaccurate.  I realize that the margins were clear and that I radiated the poor thing to hell and back.  What I'm afraid of is a new primary.  Or more specifically, a new primary which is isn't discovered until it's invasive.

    As someone with multicentric Grade 3 DCIS w/necrosis, with one area that remained invisible on mammo throughout the process.....well....

    There's a big controversy about whether or not to MRI.  Several hospitals, including Sloan Kettering, didn't want to do it - they believe it's not helpful for DCIS and causes too many false positives, biopsies for no reason, etc.  Not their protocol.

    I won't rehash the whole story here, but the surgeon at Columbia Presbyterian was adamant about MRI, and I had to agree w his reasoning.  If he was going to do surgery, he wanted as much info as possible about what he was getting himself into.  And I felt that if I was having surgery anyway, I might as well find out to the best of medicine's ability what was going on in there so all the nasty could be dealt with.   I didn't want to lie awake at night wondering if there was undiscovered cancer, lurking.

    The MRI found an additional area of DCIS in a completely different area of my breast, this one was grade 2-3 (the first area was a 3 w/necrosis) and much larger.  If I hadn't had the MRI, I'd have had a much smaller lumpectomy surgery.  Let's assume clean margins.  Then either I'd have had radiation or not.  If I hadn't had radiation, I'd be a recurrence waiting to be discovered; if I had done radiation it's less clear to me - though NO ONE was willing to simply treat the second area with radiation alone.

    So what's the bottom line?  My body seems to like making breast cancer cells.  I have a 20% chance of it doing so again.  If it does, I have a 10% chance of a mastectomy for DCIS and a 10% chance of invasive cancer: a mastectomy + chemo and all that comes with it.  I'd like to stay away from the chemo thing, if at all possible.  I hear it really sucks. 

    I don't think my concern is phobic, I think it's reasonable - but then I would, wouldn't I?  I don't mind MRIs, other than the emotional trauma of "what will they find?"  Sometimes I've felt the gadolinium and sometimes I haven't (I"ve had 3 MRIs now), but it's never been a real problem. 

    Maybe I'll go back to Columbia....I dunno.  I'm not ready to do anything yet, but in 6 mos or a year I might feel ready. The MRI was a game changer, and I'm scared to face that demon again.  That's the part of me that might be phobic, the part that just doesn't want to know. 

    Last year at this time I still had normal breasts and was interviewing surgeons.  I need to get through the surgery anniversary before I deal with any more emotional hurdles. ....

    /end quasi rant 

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2013

    I think it's reasonable too.  If we've been diagnosed with BC one time, why wouldn't we want to have the best screening we can to ensure that if we are diagnosed again, it's caught early? That's not crazy, that's not phobic, it's sane. The medical community seems to embrace this logic for women who are high risk but who've not yet been diagnosed. Why are they so reluctant to apply the same logic to those of us who've already had BC?

  • dsj
    dsj Member Posts: 277
    edited December 2010

    Sweatyspice,

    When I was diagnosed one breast surgeon said to have a pre-surgery MRI, the other said not to.  The one saying not to was the Director of the Multidisciplinary Breast Cancer Center at the university.  The one recommending it was a clinical breast surgeon.  I think the research doctor saying I didn't need it was approaching from an epidemeological perspective, and I understood her argument is based on no statistically significant difference in survival.  Nevertheless, I had the MRI and was glad to have the reassurance.

     My rad onc and medical onc both want me to have another MRI, six months after my first pre-surgery mammogramm (which was  last October).   They both said, though, that insurance would balk but that they would try to push it through. I had a small, discrete Grade 2 area of DCIS, but I did have very small margins.  I am going to try to push it with insurance.      

  • Sherryc
    Sherryc Member Posts: 5,938
    edited December 2010

    I was lurking on the thread as I have IDC not DCIS.  I wanted to see what you guys said about MRI's.  I have had microcalcifications for almost 14 years.  At the time they were discovered they were considered Atypical Hyperplasia but my BS recommended a lumpectomy at the time to remove it.  I have had yearly mammo's since then and have been called back on several occasion for more views but nothing at that point.  In July of this year I was called back on my mammo's and then told to have a biopsy.  Have moved since my last surgery so found another surgeon that specializes in breast disease.  We tried doing an excisional biopsy and was unsuccessful because they could not get the mammo's to line up horizontal and vertical with the wire.  I have so many calcifications.  Anyway my BS gave me some options and one was to have an MRI to basically rule out DCIS because she and the radiologist really did not think the calcificatons were cancer.  So I choose the MRi and when it was done I had IDC under my old scar tissue that never showed on any of my mammo's over the last 13 years.  My BS had several radiologist relook at all my mammo's over the years to make sure if anything had been overlooked.  As it turns out I did not know until now that I also have very dense breast tissue.  So thankfully it was stage 1.  My BS said at this point there was no way to tell if it started out as DCIS or how long it had been there.  It was very close to my chest wall.  I had a lump and am currently doing radiation.  My BS says that my follow ups will include MRI's because of my breast dense tissue and the scar tissue that I have that was hidding the tumor that I had. I will alternate mammo's and MRI's every three months for a couple of years.  I am fine with that.  The dye did not bother me.  I could tell when it was going in as it was a little cold in my vains. 

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2010

    I got a call back from the hospital regarding the mri test. They would like for me to do it again, but they understand that I rather not. They did see something in the left breast and recommend a ultra sound. So how would you compare a ultra sound to a mri?

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2010

    I think that the combination of a mammo, and ultrasound and an MRI presents the best possible picture of what might be going on.  But if I had to pick just one, I'd pick an MRI.  Next would be a mammo and then an ultrasound.  But that's just my impression in terms of their effectiveness.  The fact is that ultrasound show some things very well - better than mammos.  So adding an ultrasound to the MRI that was already done can't hurt.  

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited December 2010

    Barry:  as Beesie stated above combinations are used more commonly these days and give us the best shot at seeing if there is anything to be seen.  The "false positives" that are always brought up when referring to MRI's are real, but then there are false positives for mammo's as well.  I guess I'm a strange duck <g> but I had a mammo (clear) digital mammo (clear) ultrasound (clear) and so no one expected anything to show up on the MRI (done within a few days of the other tests), yet there is was DCIS grade 2/3!  The bs was shocked and when I asked him if he would now include MRI's for his high risk patients (in the past he had believed they were "useless" for DCIS) he said no that I was 1 in a million (thanks I think so too <grin>).. but in the 3 years since that MRI the research is showing that MRI's are indeed the tool of the future...  Yes all of the test show different things, but the MRI's are proving to be the best at finding most everything as the radiologists and tech are becoming more trained and have more exposure to them.  I only ran through the San Antonio BC Symp. results but I believe there is something in their findings that does suggest that MRI's are showing more potential than was first expected..  I'm with Beesie if you get a choice (and I would push it if your bs is a bit lax) I would go for the MRI..  Barry, if I remember correctly this is not the first time you have had something show up... My ultra sound was absolutely negative and within severals days of each other my MRI showed DCIS..  I'd suggest that you go for the MRI especially since you are doing the "watchful waiting" or did I get that wrong?  Take care, Deirdre

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2010

    Deirdre, yes, I'm doing the watchful waiting. I've struggled over the decision to do the mri over.
    I know you are a advocate for mri's as it probably does give the clearest picture. But, don't you think having the constrast dye twice so close together puts you at risk for renal problems? I am uncomfortable putting toxins in my body....and yet, I'm uncomfortable missing an early dx of cancer. I want to be cautious and I'm not sure what's right for me.

    ,,,,


    The problem with the mri I had last week is there was too much movement (breathing movement) and it was too difficult to read. However, they did pick up something suspicious in the left breast. The two previous dcis dx were in the right breast. I have a lot of scar tissue in the right breast and since my last pathology report was multifocal, I've been more concerned about the right breast.

    I'm not that worried. It's probably a false positive. And if it is positive, hopefully it's nothing more than dcis and the good news about a left-breast lumpectomy...is my breast would finally be the same size.







  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited December 2010

    Hi Barry, well yes it's a bit of a risk to take the contrast too often and too close together, perhaps ask if they can do the MRI without the contract (my first breast MRI was without contrast) and then perhaps have a second, different radiological group try to read the first MRI that showed the "something suspicious" and by all means have the ultrasound, but I wouldn't go back to "watchful waiting" until I had a better understanding of what that was that did show up... Now even a clear ultrasound won't really prove that there isn't anything there unfortunately...  I hope all goes well no matter what you do, keep in touch!!!  Best, Deirdre 

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited December 2010

    I had the ultrasound today. It did show up something so the next step is a biopsy on January 5th. I highly doubt it is anything serious. The RN who works in the breast cancer rads said since I didn't do the recommended treatment for my dcis that I would need to continue the mri's every year. She recommended a double mx if the biopsy came up positive. For now it's a wait and see...

  • Deirdre1
    Deirdre1 Member Posts: 1,461
    edited December 2010

    Oh barry I'm so sorry - I too hope it is just a blip on the screen and that you are fully healthy at the end of the biopsy..  Take care, and keep us informed OK... Best, Deirdre

  • Hindsfeet
    Hindsfeet Member Posts: 2,456
    edited January 2011

    I just got a call from my b.s. about my biopsy results. First to say is that I do not regret my choices. The last two years has been a journey to coming to grips with what caused my body to go wrong. I'm just now getting it :)

    So...the report is I do have invasive cancer in my left breast. The doctor is going to be out next week, and suggested I see her associate to talk through my dx. I said, I can wait until she gets back. I'm glad. It gives me time to process this information, and to research more into what I want to do.

    Right now, I don't even know what grade it is or what kind it is.

    I am trusting that God will give me wisdom in how to proceed from here.

    E Barry

  • Sherryc
    Sherryc Member Posts: 5,938
    edited January 2011

    Barry so sorry to hear your news.  I think slowing down and processing sometimes is better. One week will not make a difference in the end.  Good luck with the decision you have ahead of you.

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