No Breast Cancer Screening For Women Aged 40-49

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2011

    Screening DOES save lives...without a doubt...  That is NOT being debated.  Instead the NUMBER of lives being saved from screening mammograms is being debated.

    At the end of the day, I think this is an important discussion BECAUSE.. WE OWE OUR YOUNGER SISTERS A BETTER WAY TO SAVE LIVES.  And if we sit here discussing how the current method of screening saved this one or that one's life, that's fine...HOWEVER, the larger question is ARE WE OFFERING WOMEN A FALSE SENSE OF SECURITY WHEN WE TELL THEM THAT ANNUAL MAMMOGRAPHY SAVES LIVES (especially for our 40 - 49 year old sisters)?

    And you know what's missing from this discussion?  DENSE BREASTS...I mentioned it earlier and I will say it AGAIN.  DENSE BREASTS.   AND BI-RAD  SCORES.  Women need to understand the definition of BOTH those words and appreciate the context of those words and how they relate to themselves.  As I said earlier, and will repeat again.......When I do speak about breast cancer (which I rarely do in public because I am a VERY PRIVATE PERSON), I ask women if they know if they have dense breasts.  Most don't.  I knew I had dense breasts and was told in my 40's that mammograms were MEANINGLESS without a sonogram.  So during my 40's I had BOTH.  Often I had BI-RAD 3 score results.  BI-RAD scores were explained to me in detail and WHY they were categorizing my breasts that way.  EVERY SISTER DESERVES THE QUALITY CARE THAT I RECEIVED.  That's what Dr. Welch explains in detail in his book.  OUR HEALTH DEPENDS ON COLLABORATION WITH OUR DOCTORS. WE NEED TO EDUCATE OURSELVES AND WORK TOGETHER.  Going for a screening mammogram without further knowledge is DANGEROUS TO OUR HEALTH because we will never know if we are getting QUALITY care.

    AND...I was diagnosed with a DIAGNOSTIC mammogram and sonogram.  I had a clean mammogram and sonogram at my ANNUAL SCREENING.  Several months later, (similar to Peter McMartin's wife) a lump was found and I went for the tests.  The DIAGNOSTIC mammogram MISSED my tumor.  The report referred to it as a BI-RAD 3...which was the same score that I received on all my other screening mammograms.  The DIAGNOSTIC sonogram labeled it a BI-RAD 4 and the subsequent biopsy confirmed it.  Both also missed the DROP of DCIS found in the MRI.  The MRI also had difficulty finding the tumor.  The DCIS was more strongly validated by the MRI than the tumor.

    So, what I am saying and will say over and over again is that our younger sisters need to be more pro-active in understanding their bodies.  This requires letting go of the sense of security with screening.  Be it for our breasts or other parts of our bodies.  I read recently that  screening colonoscopies can miss up to 40% of tumors.  With all the prep involved and time it takes, are YOU comforted by THAT statistic?  I'm not.  And that's why there are researchers out there developing better tests!

    I think, going forward, generations from now are going to look back at us and label us soooo naive.  Sure, we can comfort ourselves now and say, "Well, it's the best we've got for now at saving lives."  But, I will be bold and say, "Maybe not."  I often worry about my sisters who have the false sense of comfort that when they finish their screening, their health concerns diminish in importance, until their NEXT screening.  I worry about my sisters who aren't educated AND I worry about those who are educated and  who are NOT enlightened and the combination of BOTH, those who are educated and those who aren't yet BOTH are not enlightened. I question whether they are getting QUALITY care.  So, I will say, what saves the MOST lives is a combination of education, enlightenment AND quality care, NOT SCREENING MAMMOGRAMS!  AND THAT IS THE POINT THAT THE TASK FORCE IS MAKING!

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2011

    Sorry if I'm yelling!  I have a perforated ear drum and a few other things going on in my ear right now!  My head is ready to explode.  So I'm a little nudgy and have too much time on my hands while I recouperate.  I've been like this for almost two weeks and the doctor said I have several more weeks to go before I feel better.  So, I'm a loose canon right now......Too much time to read and write since I can't do much else without spinning.....

  • LtotheK
    LtotheK Member Posts: 2,095
    edited December 2011

    VoraciousReader, yell away.  You are my BC bootcamp, and I love it.  Every single thing you say is and was absolutely true in my care.

    Did y'all see the Komen site relative risk aggregator?  Wow, if I knew then what I know now.  Density increases risk as much as a previous cancer!!!  No one ever told me that.  And know your Birads score!  I still don't know mine, it's NOT LISTED on the mammo.  

    Bottom line:  had I been educated properly, I would have argued for an MRI with a Birads 3.  Had they agreed to it, even every two years, things might have been different for me.  Maybe it would have been DCIS.  Maybe I would have saved a few percentage points in overall survival.

    Could someone point to a site to help me understand birads better?  And could someone please tell me how to request that score at my upcoming mammogram?

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2011

    If you don't have a baseline mammo (at age 40, let's suppose), how do you know if you have dense breasts?  You cannot go by feel.  

    And if you don't have a mammo, how do you get a BIRADs score?

    Mammos and ultrasounds are inexpensive and easily available.  And for many women, they are effective screening tools.  Contrary to how it might appear on this board where it seems that everyone (who speaks up) has dense breasts, in actual fact only about 25% of younger women have extremely dense breasts and a much smaller percentage of older women have extremely dense breasts.  But until you are first screened, you can't know if these methods will be effective for you or not.  So why not a baseline for everyone at the age of 40 and then a decision as to what screening is necessary from that point forward?   Some women will benefit from MRIs, but not all women need MRIs.  Some women will need to be screened annually, but some can do with less frequent screening. 

    This one page article from earlier this year that analysed the mammogram screening and breast density of 69,000 women is quite interesting: At What Age Should Breast Screening Begin?  http://www.volparadensity.com/wp-content/uploads/RSNA-2011-BruceSchroeder.pdf

    Their conclusion?  "Screening based purely on age may deny access to women who have less dense breasts and in whom x-ray sensitivity is high. Personalized risk/benefit analyses, including breast density assessment, may provide more suitable guidance for appropriate utilization of medical resources." 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2011

    Beesie, yes!  Perhaps a baseline mammography AND sonogram at age 40 for women of "average" risk is appropriate.  Then afterwards, based on history and risk, annual screening MAY NOT be necessary for women of average risk until age 50.  We have to move away from the idea that ANNUAL SCREENING, beginning at 40 is the be all, end all that saves soooo many lives.  That's the point! And if we can shift our thinking away from ANNUAL SCREENING, then we can shift additional funds to research that hopefully will then save the vast majority of other women's lives who are faced with aggressive breast cancers that DO NOT BENEFIT FROM ANY CURRENT METHOD OF SCREENING. We need a better method of screening AND a cure!  Ethically, it is a difficult concept to wrap our minds and hearts around...  Do we continue with an annual screening method that benefits few or look to spend those dollars saved on NOT screening towards research that finds a better way of screening or a treatment that will prolong the lives of many more women with aggressive disease?  In a perfect world there would be money for EVERYTHING and we wouldn't need to even entertain that question.   Sadly, that is the reality.  We owe it to all our sisters to begin thinking in a new direction.  What are our INDIVIDUAL RISKS and how do we go about achieving the best health care.  Perhaps "best" doesn't mean screening annually, but gaining the understanding of where you fit on the pendulum and getting the screening that is APPROPRIATE for YOU.    Again, that takes education, enlightenment and collaboration with your health care team...another word to describe that is QUALITY care!

     And while we're on the topic of screening and baselines...how many sisters and their partners have a baseline EKG?  I can't tell you how many sisters I know who RUN for their annual screening mammograms and haven't had an appointment with a cardiologist!  Ditto for their husbands!  I know I digress, but when we are talking about mortality risks it should be mentioned that for the majority of us, OUR RISK OF A STROKE OR DYING OF A HEART ATTACK IS GREATER THAN OUR CHANCES OF DYING OF BREAST CANCER.  And while this is a breast cancer website, I would be remiss if I didn't mention THAT!  Do the women here know what their blood pressure is and do they know what their risk factors for heart disease is?  Heart disease kills SIX TIMES MORE WOMEN THAN BREAST CANCER.  WE DESERVE QUALITY CARE and that begins with education and enlightenment.  So even though, we are all breast cancer survivors and are at higher risk of recurrence than the "average" woman, we also have to be mindful of our heart health:

    http://www.womensheart.org/content/heartdisease/heart_disease_risk_quiz.asp

    Innocent

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited December 2011

    VR -- An annual complete physical, as well as a GP who asks in-depth questions about family history, diet and lifestyle, should uncover anyone at risk of stroke or heart attack.  I haven't had an EKG (but did have a MUGA scan before beginning tx to ensure my valves were in good shape).  At every doc's appt (GP or onc) my blood pressure is taken and my lungs listened to.  The doc knows that my family history stinks of cancer, but is clear of heart disease.  An EKG would be an unnecessary test (she types with fingers crossed).  But, your point is well taken.

    And, I'm so glad to note that, over the last 15 years or so, much greater attention is being paid to women and heart disease. 

  • Sugar77
    Sugar77 Member Posts: 2,138
    edited December 2011

    I was average risk (no family history) and my GP did a number of "routine" baselines when I turned 45: a mammogram, an EKG, addtional bloodwork, etc.  That mammogram was my first one ever and it detected my breast cancer. The EKG was fine.

  • Tenmom
    Tenmom Member Posts: 205
    edited December 2011

    I loved reading this discussion. I just went thru my first and hopefully only scare. Four weeks ago found small lump in breast. Wasn't even a self check. Was an itch and I scratched it. I don't mess around with that stuff. Went to doctor. She told me she felt it was cyst. Round mobile, etc. She said either way she wanted me to get this biopsied. She scheduled diagnostic mammogram, ultrasound, and surgeon appointment. She figured it was benign but she said cancer cells can live in cyst. I have no family history except for great aunt who has survived stage three 20 plus years and counting! So for her to go this extreme was comforting. Scary but comforting If that makes sense. Went to mammogram; was not bad at all. Had been dreading it for years. I'm 37 so still had a couple of years to go before I started. Well they had me wait for the read ... Tech came back and said we need to do ultrasound which was supposed to be only if necessary. That moment terrified me. They did the ultrasound. The tech said "now where is the spot?" the mammo lady had marked it with a bb type thing that was still there. I showed her. Well I got dressed and the mammo nurse called me in. She said its not a clear filled cyst. Ok, what is it. .... " well we don't know.. Its not charactersic of BC but it's abnormal tissue". I was like what does that mean.... Could this be cancer?. She said she doesn't know but it could be. Bit it could be complex cyst or a number of things. I said " what are the characteristics ?" I dont know she said. You will have to ask your doctor. I asked if anything else was found and she said no. They gave her no other indication of another lesion. She said they just gave her a number and I looked on her desk and it said four. She didn't tell me anything else. She was comforting though. She said she had been in my shoes before. Well I leave and try to call my doctor. She wasn't in. This was Friday the 15 th. I called my mil who is a ob nurse and she said... Do not call and get your report. It will scare you. My BS appointment was on the next Tuesday. So Monday night, I figured out that 4 was a bi rad score. Oh my goodness.... I was terrified. I had not cried at all or been really worried until that moment. No one told me anything!!!! If I hadn't been on here, I wouldn't have figured it out. So BS met with me that morning. Told me nothing other then he was doing a core biopsy on the two spots. Uh.... TWO SPOTS? Huh? I looked at my husband in panic. He said there were two beside each other. So that's why the ultrasound tech asked me where it was!! No one said a word! I asked him... Why the bi rad score? He said it was unknown what it was. He did the biopsy and the larger one immediately collapsed some. He said that was a very good sign. The other one was a wiggler and kept moving another good sign. He also told me I had ultrasound because they couldn't find the lesion on mammo. Hmm, you knew this and I didn't? Least he felt I had a right to know unlike my radiologist. All turned out great. Fat necrosis for the both of them. They were side by side and I probably hit my breast and didn't know it. At the appointment I had for him to check my incision, he told me how to be proactive. He said 20 percent of mammos miss breast cancer. It's important to do breast checks once a month. It's important to not miss a mammo every year starting at 40. Also, ultrasound every two years. I say this whole long story to say we have to start educating women about caring for their breast. You see I knew nothing of bi rads. Nothing of mammos missing tumors. Nothing of that I had a right to question my radiologist right then and there. My ob was livid the radio didn't speak to me and also.... He did not flag her report. She didn't see the report until the biopsy results were in and I called to tell her. Luckily she scheduled my surgeons appointment even though she thought it was cystic. She read me report... 2 nodules , with classifications. Biopsy strongly recommended. Read by two radios ... They were close to giving me a five. We need to walk in these appointments with knowledge. We need to educate our girls on their rights and what they should know. Screenings are great but that's like walking into a test at school without studying. We need to know out stuff!!!

  • Megadotz
    Megadotz Member Posts: 302
    edited December 2011

    VR, 

    FWIW,I just checked out the screening test recommendations for women from UPenn:

    http://www.pennmedicine.org/obgyn/health_info/timetable.pdf 

    Blood pressure  is listed as part of general physical and cholesterol is listed as every five years starting at 45 for those without risk factors.  EKGs, baseline or otherwise aren't on the list.

    I do have risk factors, including a strong family history for heart disease, so my screening including EKG started much earlier.  

    The Red Dress campaign is doing a lot to bring  attention to  heart  health issues for women. The next wear red day is February 3, 2012.

    Here's a nih site with information about heart health risks for women and how to lower them:

    http://www.nhlbi.nih.gov/educational/hearttruth/lower-risk/index.htm 

    There's a lot to know to keep ourselves as healthy as possible.

     All the best,

    Meg 

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited December 2011

    Tenmom...You nailed it!

    "Screenings are great but that's like walking into a test at school without studying. We need to know out stuff!!!"

    And I'm glad to see that the sisters here know their heart disease risks!  KNOWLEDGE IS POWER...and hopefully armed with knowledge the maze through life will be SIMPLIER and LONGER for all of us! 

  • jojoxoxo
    jojoxoxo Member Posts: 34
    edited December 2011

    I'm looking for a new family doctor because as I've written elsewhere on these boards I was so dissatisfied with the first one I got when I recently moved back to Canada.  I'm 53, the last time I had an EKG was before BC treatment in 1998, and I would think it would be a good idea for me to have another "baseline" EKG now, because both chemo and radiation can damage heart tissue.

     But the doctor I saw for my physical a month ago said "your family history and your own history show no risk factors for heart disease so I'm not going to schedule you for an EKG".  Also, she nixed a baseline colonscopy. It makes me angry. I don't think my requests are out-of-line. I am trying to be proactive on my own behalf because I don't feel like anyone else is going to be looking out for my health, and feel that so far the system here won't even ALLOW me to get the tests I want and feel are justified.

    Maybe this will change when I find a more competent family doctor who is a better fit for me.

    Doctors are service providers.  While they have specialized knowledge they should also be willing to refer you to basic screening and tests if you wish to do so and your requests are fairly reasonable and understandable.  

  • Beesie
    Beesie Member Posts: 12,240
    edited December 2011

    ellemint, your requests were not out-of-line.  It was your doctor who was out-of-line.  But unfortunately there are crappy, non-patient centric doctors everywhere.

    My doctor sends me for an EKG every few years when I have a physical.  It's not on the list of tests every time but if I haven't had one in a while, he sends me for one.

    I'm in no rush to have a colonoscopy but when I had my physical right after I turned 50, my doctor had me do the "$#!t on a stick" FOBT test.  I get that every two years now.  Was that offered to you?

    Here are the OHIP guidelines for colon cancer screening:  http://www.health.gov.on.ca/en/public/programs/coloncancercheck/program.aspx   This suggests that if you don't have a family history or symptoms, the FOBT test every two years is sufficient. But remember that these are guidelines and the doctor should decide what's best for each patient.  So if you really feel that you need/want the baseline colonoscopy, there is no reason why your doctor can't order it.  

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2012

    Mammograms are only the first line of defense and don't always help.  I know.  My mammograms leading up to my diagnosis were all "negative"; couldn't see the lump because of dense breast tissue.  But, let's face it: they are an integral part of the current screening/diagnostic process.

    What scares me more than these new guidelines (and they do concern me on several levels) is a newspaper article I read recently, that stated there are a significant number of women in Canada who feel that - if they get annual mammograms - they won't get breast cancer.  I mean, how did these women miss what getting a mammogram is all about?

    I agree wholeheartedly.  Women must read, learn and become their own best health advocates because - until they do, guidelines such as this and continued misconceptions about breast cancer (and other health issues) will only be damaging.

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