Why do they keep telling me to get mammograms?

Options
2»

Comments

  • Fallleaves
    Fallleaves Member Posts: 806
    edited November 2013


    Ballet12, glad you're able to go to MSK where they can see everything. Too bad they don't have that really good equipment everywhere!

  • RobinLK
    RobinLK Member Posts: 840
    edited November 2013


    Beesie, I can understand your concern with the Are You Dense website. I, however, am one that wishes my state had to notify me of my option to ask for further testing. My mammo's have been clear for the past 11 years, the latest being 9 months prior to my diagnosis. ILC and dense fibrocystic tissue look exactly the same on the mammo that was taken after my ultrasound guided biopsy, even with the marker clips in place. It was still extremely difficult to detect the tumor. Imagine thinking you have caught something early to end up with the DX in my tag line. There are at least 5 more just like me on the Stage III newbie thread. All in our mid to late 40's, clean mammos and all with ILC. I can understand how our stories can appear as "fear mongering" but I really feel that women should be informed of more testing options available to them instead of being all treated the same because it is "standard protocol."

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited November 2013


    Hi Divecat and ballet12,

    My comment:

    "The perkier the breasts are, the more dense they are, the harder it is to see the calcifications to tell whether they are shaped and clustered like a cancer or not., and in general, the younger you are. So the trade-off is that the fattier your breasts are, the older you are, the easier it is to see the calcifications,  and the more the breasts sag."

    I didn't say that one could tell by touch or by looking whether a breast was dense, just that in general the younger you are, the more dense the breasts are, which is supported by the information in the link you provided. I agree that there are a meaningful number of outliers at both extremes of age.

    " Conclusion


    Our study shows an overall inverse linear relationship between age and mammographic density. However, age is not an accurate surrogate for breast density. We documented a meaningful population of outliers at both extremes of age, which has implications for screening practices."

     

  • DiveCat
    DiveCat Member Posts: 968
    edited November 2013


    Angel...my point was merely to clarify that perkiness is not a gauge for density since your comments did seem to relate density to perkiness and sag. That is all. While few of us retain perkiness as we age being perky or being saggy does not indicate density. Fatty breasts can be perky at any age (and 40%+ of premenopausal women after all do not have dense breasts) and saggy breasts can be dense with glandular and connective tissue (again, at any age). Also from the link I provided:


    'Knowing if you have dense breasts is an important part of your overall breast awareness. However, you cannot determine your breast density by yourself. It has nothing to do with the size, look or feel of your breasts. It also has nothing to do with the usual changes you may experience as part of the menstrual cycle, when the breasts can feel tender or lumpy.


    Having “dense breasts” is a clinical diagnosis that can only be assessed by mammography."

  • wyo
    wyo Member Posts: 541
    edited November 2013


    I am glad the state notification was raised here. I live in CA and you get this letter which really seems like a CYA (cover your a##) informing you that you have dense breasts and what the imaging difficulties would be because if it.


    Excessive radiation is always a concern- hip surgery and other fracture fixations where they are using intraoperative flouroscopy and heart caths can deliver fluoro time measured in hours.


    wow- have to say I have been working in surgery since 1983 and have never seen a broken knife blade during breast surgery- its not unusual that they get "dull" and need to use a fresh one. A lot of the dissection can be done with electrocautery, harmonic scalpel and scissors depending on the type of breast surgery.

  • LDCald
    LDCald Member Posts: 7
    edited November 2013

    They keep telling you to get the mammogram for two reasons: laziness and mammograms are huge MONEY MAKERS!  The equipment costs a small fortune if your doctor owns the machine, and they need to pay it off.  If they send you out for a mammogram, they send you to someone they have a relationship (ie a friend) and they get something in return whether it is an outright kickback kor just a return referral.

    They are just order mammograms routinely and it's simple and advantageous to them.

    I'm sorry to be so jaded, but we live with a "for profit" health care system. it's easier for the health care community to just overtreat and turn a blind eye to the risks and rationalize that it doesn't hurt anyone. 

    But I'm with you. Why subject someone to unnecessary radiation if the track record shows it is not effective?

    I believe you need to stand up to them and point out your information and stop letting them treat you like fastfood one size fits all! (which incidentally is easiest and most lucrative to them.)

    Good luck and you should be proud that you are putting two and two together! Many people never even think to question it!


     

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited November 2013


    i don't believe it is some vast profit-driven conspiracy. It is simply (sadly) the best technology we have at this time.


    LD- do you have cancer? This is the only topic you ever post about.

  • DiveCat
    DiveCat Member Posts: 968
    edited November 2013


    LDCaid...not all of us live in a "for profit" medical system yet mammograms are still part of the screening guidelines. One gets more radiation from a day at the beach or flying across country than they do a mammogram, especially with digital mammograms which allow more precise imaging at lower radiation doses. They'd get a hell of a lot more dollars using MRI if it is all about profit.


    The track record does not show they are ineffective. Mammograms have extensive research and long term actual clinical use to show they do work for many women. They are not perfect, but relying purely on US or MRI would not lead to 100% detection either.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited November 2013


    The new 3D imaging is wonderful from what I have heard. Our local rural hospital is the first rural hospital to get one and I have seen examples of a dense breast with the old technology vs the new. In my opinion anyone with dense breast should seek out a 3D mammography even if you have to drive a ways to get access to one.

  • ballet12
    ballet12 Member Posts: 981
    edited November 2013


    Hi wyo, about the broken scalpel, she did say "broke", but I was in the recovery room recovering from anesthesia at the time. Maybe she meant that the blade got dull. If they never actually break, maybe that's what she meant. Someday, I'll ask her. I'm sure that at Memorial Sloan Kettering, they use the latest equipment.

  • RobinLK
    RobinLK Member Posts: 840
    edited November 2013


    Mammos do save lives, many lives. My point is there should be added testing offered to those of us who fall into the higher level BIRAD categories. We should be informed that there is a possibility that cancer may be missed with mammo alone. The state I live in now does not have to do this. The state I retired from, and that my insurance is based out of, has an insurance mandate to cover further testing. I know that even with mammo/us testing cancer can still be missed and it is up to each of is to fight for our own health. I just think that having better guidelines/protocols in place nationwide would benefit those who haven't had to find their way here yet.

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


    Robin, I agree with you. Everyone should be informed about their breast density status.


    But if women are going to be informed about their breast density status, they also need to be informed - honestly and with accurate data - about what it means to their risk level and how it impacts their screening. And they need to be informed about what other options are available to them and whether it makes sense to pursue these options. I've seen too many women show up on this board, scared out of their minds, because they've been told that they have dense breast tissue. Many come here thinking that they are very high risk and some are considering having a BMX because they think screening is useless. Yet most of these women are in their 30s or 40s (some even in their 20s) and most have heterogeneously dense breasts - in other words, they are completely normal. Some even have scattered fibroglandular density, which means that they have less than normal density levels, and yet they hear the word "dense" and they freak.


    As I said in my previous post, "I appreciate that the "Are You Dense" website strives to raise awareness of breast density both as a risk factor for breast cancer and for the possible problems it creates for screening - and I think the person who started the site has done a wonderful job at that." I agree with their objective; I agree with what they are doing. I don't however agree with their tactics or how it is being done. I prefer the breastdensity.info website because I believe it is more informative and more accurate on this topic.


    LDCald, I'll second everything DiveCat said. I'm in Canada and no one here is making much (if any) money doing mammograms. As someone with extremely dense breast tissue who's breast cancer was found thanks to a mammogram, I will disagree with you that mammograms are ineffective. Are mammos - and all the current screening techniques - as good as we need them to be? No. But they are getting better. Digital mammos are an improvement over film mammos. 3D mammos are an improvement over 2D digital. Hopefully mammogram technology continues to improve, and hopefully new screening methods are developed that are 100% effective. But we're not there yet and so for now, I will gladly go for my annual mammo.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited November 2013


    I question some radiation because even the very least of it IS considered carcinogenic, and both we and our care providers should be more willing to acknowledge that very openly and take full responsibility for how to use it without over-using it.

    Until a monitoring system that utilizes and maintains a cumulative count for each patient is implemented and the data from that is collected in a general way so that we aren't guessing and instead are acting on genuine information about the impact of every gray administered, that simply is not yet the case.

    Given the cost of radiation use, implementing this is not something that is unreasonably expensive to do. We already have the computer systems in place that could process the information conveniently for us.

    I think my PCP and my BS are quite caring and professional, and quite conscientious, but I also believe that without such a consciously designed and visible reminder keeping count of my radiation exposure, they continue to be quite clueless when it comes to how much radiation exposure I have had as a patient except when I make a point of outlining my history of exposure to it.

    Hospitals and clinics, as businesses, recognize that radiation departments are money-makers. That can be an insidious fact, whether or not anyone consciously makes it so.

    My personal experience includes innocently trusting in a medical system that provided me with mammograms and ultrasounds that indicated something was suspicious, which led to evaluation by a hospital-associated "breast cancer specialist" surgeon, who then did her own ultrasounds in her own office "for comparison". The first hospital set of mammogram and ultrasound for me came back as BIRADS 4, which recommends biopsy. The surgeon did her comparison, failed to tell me what the recommendation was, and recommended returning in 3 months for another hospital set of mammogram and ultrasound. At that point my cancer was 0.6 cm in size. No one notified me that anything was a problem of any kind. I returned for the hospital set of mammogram and ultrasound. Once again the report was not ready yet and she did her own ultrasound in her office. The hospital ultrasound and mammogram reported out as BIRADS 4 again. She again recommended waiting another 3 months and having another set of mammogram and ultrasound at the hospital and another visit to her office for her own ultrasound. No one even set up the third set, and no one arranged for a third set for me. I was alarmed and booked them for myself. I requested copies of my previous imaging. It was difficult for me to get time off but I went to the hospital on my lunch hour to get copies, and was told I could not have them because it was "lunch hour". I could not stay and requested they send them to me by mail. It took them 2 weeks, and when I got the results, they had sent the wrong reports. I could not reach the surgeon because she was "in Europe on a vacation". I then ordered my own 3rd set of mammogram and ultrasound. They again came back as BIRADS 4, this time with the tumor measuring 1.1 cm. Unfortunately during this same period I was being seen by a visiting PCP so the continuity of PCP surveillance was not maintained. With the help of my regular PCPs I changed to a Seattle surgeon for immediate surgery. I have received excellent care from that cancer center. I sent a letter of complaint to my local hospital, asking that the hospital board implement corrective procedures so that this could not happen to anyone else. They did not call me. They sent a letter referring me to the hospital executive but implemented nothing. A caring and responsible physician made a report in my behalf, which was then whitewashed by the "hospital quality control manager", who happened to be a surgeon who had retired just prior to the hiring of the surgeon I'd had, and in his retirement, was making extra money as quality control manager. Nothing was ever done about it. Eventually I was left with a very awkward choice to make under the legal and medical system in dealing with the problem and the issue of the indefiniteness of cancer. The law required me to file any case within 2 years of becoming aware of the problem, which I eventually did. But the reality is that I could not win the case because I had not "suffered any harm" (given that I had cancer regardless of the surgeon). Fortunately for me, the care I received at the cancer care center and my own body responses and my own choices since then have resulted in my continuing NED status. However, the medical system has those kinds of holes in it in reality. The original surgeon I was seeing, at the time I was seeing her, was on probation with my state medical board due to providing Rx's to her live-in. She also was under investigation with the state medical board where she had previously worked, for one patient death and one possible malpractice. For these she later received a slap on the hand. Since that time, in another state she has been involved in a car accident that killed a young child in the opposite car. She was proven to be driving under the influence and had to complete alcoholic counseling. The testimony as to fault was inconclusive, and that was the end of that.

    Had there been a system in place monitoring the practitioners and the facility, as a patient I would not have been abused by it.

     

     

     

  • LizzieK
    LizzieK Member Posts: 67
    edited December 2013


    Hi AlaskaAngel


    Your story sounds a lot like my more recent story. I have dense breasts and received multiple ultrasounds over the years to check out cysts, etc. In October 2012 I went for my annual screening mammogram at a neighborhood radiology practice. They noticed some suspicious calcifications and recommended I go to a breast surgeon for a biopsy. I went to the local teaching hospital to a well recommended surgeon. I had a diagnostic mammogram there and a stereotactic biopsy was recommended. The radiologist couldn't see anything to biopsy and did not do the biopsy. The surgeon came in and told me it was probably nothing and to come back in 6 months. I went back last April and they did a mammogram and said no change come back in 6 months. Well I went back this October and now they saw a mass of 1.5 cm along with the calcifications confirmed with an ultrasound. I requested my radiology reports because I planned to go for some second opinions. When I read the report from last October it clearly said that if a stereotactic biopsy couldn't be completed I should have a surgical biopsy. I also found out they used the better 3D machine last October but the regular machine last April. The surgeon never shared the radiologist report with me or discussed the recommendation. I just had my surgery a couple of weeks ago at another hospital and luckily it is stage 1, no nodes, so I guess I was not 'damaged' by her bad care. I am so mad at that surgeon and will ask to see all reports from now on. I plan to file a written complaint and ask to see the Medical Director of that hospital after I get through treatment. Another way to inform people is the web sites reviewing doctors. Looking to see if they have any judgements against them doesn't tell you much since almost all of them settle out of court.

  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited December 2013


    LizzieK,

    There IS no excuse for not providing such information to the patient in a way that allows the patient to make decisions, whether or not those decisions are "convenient" for the provider. The excuse that has often been given is the elitist notion that patients can't be given the "technical" information because they either can't handle it or won't understand it. My situation happened over 10 years ago but even back then the facility doing a mammogram was required to provide some form of the result to the patient. However, there was no requirement to provide the actual report, because doctors have the reserved privilege of "more fully explaining it and answering any questions". Unfortunately that instead allows such doctors as yours and mine to fail to do so, and to put us on hold without any genuine knowledge of the real meanings included in the report that we or our medical coverage is specifically paying the radiology provider for. And in addition, the requirement only applies to mammogram results, not to any concomitant ultrasound report or any other radiologic report. So if the mammogram is not informative but the ultrasound is, it is still not mandatory to provide the ultrasound report to the patient. It is truly an umarked minefield for patients to try to cross.

Categories