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Refusing an early biopsy? Any opinions?

trying_not_to_worry Member Posts: 12
edited December 2019 in Not Diagnosed But Worried

Dear all,

I am new here. I am trying very hard not to worry, but the
fact that I'm now posting here and that I have done nothing else over the last
several days but researching BC diagnoses, procedures and treatments probably
means that I am worried quite a bit.

So, here is my story so far:

I had my yearly diagnostic mammogram and ultrasound last Wednesday,
July 25th 2012. (Since I have very dense and lumpy breasts with several benign
cysts (that are coming and going), I have had diagnostic mammograms and
ultrasound since I'm 40; I'm 47 now.)

The fact that last week two rounds of pictures were taking
was also nothing new or worrisome to me (in spite of the radiologist's assistant's
facial expression, of course, they don't tell you anything while taking
pictures). After all images were taking, I saw the radiologist for
about 3 minutes; she was apparently in a big hurry. First thing she said, while
still catching her breath from running down the hall: "You have very lumpy
breast". What kind news I thought (not!). Then fiddling with two computers at
the same time, first showing me the images of another patient before she could
find my electronic file, "nothing to worry about" she continues, "there is only
this ...", a little abnormality it seems, she is pointing to a little cluster of
white stripes and dots. "These are microcalcifications," she explains, "we are
seeing these a lot and in 80% of the cases they are entirely harmless". I was
thinking, "fine" and was getting ready to leave. (The cysts that I have since
years usually get the same kind of appreciation, "most likely entirely harmless"-
nobody ever makes a 100% statement). While I thought I was done she hands me a form
for another appointment, "I strongly recommend a biopsy," she says. I
responded, "what for?".  "We don't have enough information and only a biopsy can tell us what is really going on". And then she says it again, "nothing to worry in most cases the biopsies come back
benign". Oh and then she adds (after I asked for the worst case scenario), "in
the case of malignancy, the cancer would be stage 0," implying that this is
also nothing to worry about. Utterly confused I went to the front desk and made
an appointment for a biopsy. The biopsy was scheduled for Monday July 30th.

After I had a moment to think about what had just happened,
talked to a friend, who is currently recovering from BC surgeries, and did some
considerable internet research on microcalcifications and biopsy procedures, I
decided to cancel my appointment for a "stereotactic vacuum assisted core
biopsy." (I have to admit that learning about the details of the biopsy procedure
scared me more than the possible results).

Meanwhile, my gyn has received the report and her assistant
called, asking me whether I knew that my mammogram showed "highly suspicious abnormalities"
- this wasn't the term the radiologist used and urged me to see a breast
surgeon. After I told her that I first scheduled and then canceled the biopsy
appointment, she started yelling at me, "you will not get away with doing
nothing".  She demanded that I call her
back on Monday in order to confirm my appointment with the breast surgeon.

Now, there are plenty of case stories out there that suggest
that in specific situations doing "nothing" (‘nothing' according to mainstream
medical establishment) is definitely not the worst choice; outcomes and
survival rates seem to be pretty much the same - minus the denigrations, the
stress, the worries, the anxieties and recoveries from treatment.

I'm not planning to do nothing, nor have I ultimately
decided against the biopsy. Right now however the wait and see approach might
be a lot healthier for me. I have been living under great chronic stress for a
long time (recently divorced and in-between jobs) and I'm taking this as a sign
for necessary lifestyle changes asap and I know I have to do this for many
other health reasons.

I would love to hear what you think.

I already do know however, that in the worst case scenario,
which would probably be a diagnosis of DCIS, I'll have to fight two enemies:
the cancer and the medical establishment. Given that the fight with the latter
has already begun, I wonder, do I really want to do that to myself?



  • proudtospin
    proudtospin Member Posts: 4,671

    I have been where you are now but did not refuse the biopsy, really think you should go through with it, DCIS is treatable with minor (lumpectomy) surgery if caught early.  I had a lump removed so many years ago I forget when...20 about,  yes and in 2008 DCIS was found and treated

  • hopeful01
    hopeful01 Member Posts: 1

    Trying not to worry...I feel the same way you do...I felt a lump, went to my GP, she felt the lump, went to have diagnostic mammo and u/s, radiologist came into the room and said nothing was found on the u/s but the mammo has shadows when compared to my baseline mammo.  I guess I will is scheduled for tomorrow morning but I'm really regretting getting all worked up over it.  I sort of feel foolish if that makes any sense. 

    Perhaps in your situation you can wait 6 months and things will be better situated for you in your personal life...just a suggestion but I wish I would have considered that. 

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,861

    I understand your concerns. Although you do read stories of stereotactic biopsies being unpleasant, for most women, the discomfort is minor (those who have problems tend to post more). As for the radiologist not making 100% statement, they can't based on imaging alone. For me, watching and waiting would be far more stressful than knowing exactly what I was dealing with. I think once you know, then you can make far more informed decisions about how to treat, whether it be conventional tx or alternative and complementary. Right now, although the chances are greatly in your favor, you just don't know exactly what you're dealing with. Best wishes. Caryn

  • Justsayyes
    Justsayyes Member Posts: 1

    I thought they were overreacting by recommending a steriotactic biopsy, but I went with it.  I was very anxious due to reading about the biopsy and knowing that I don't numb up very well with lidocaine.  My biopsy was problematic in the location and took longer than expected.  I didn't feel any real pain except for a few seconds.  Walked out, drove myself home, went out with friends to went on.

    Expected to be in the 80% that all was fine.  It wasn't, and I'm so glad that I was encouraged to get this biopsy.  My microcalcification were high grade.  That changes everything in my mind.  Who knows what time frame I had for further advancement of this? 

     I was upset that they didn't recommend a biopsy a year ago, if they had perhaps we would have gotten it before the transition to high grade.  But really I'm so very lucky.  I say don't wait too long.  Having an unknown diagnosis is stressful in itself. The biopsy is an hour or so out of your day.  That's it. 

    Best wishes in making the right decision for you.

  • Cindyl
    Cindyl Member Posts: 498

    Some people are OK with watchful waiting. Others aren't.  My Dr missed my cancer, thought it was scar tissue.  Sure wish we had those 18 months back, but we have to play the hand your dealt.  I personally will never "wait and see" again.

  • awb
    awb Member Posts: 213

    working in health care for many years, I've never known a biopsy to be recommended lightly.  If the radiologist is "strongly recommending a biopsy", then he/she probably has a very good reason for that recommendation and you probably would do well to follow it.  I think it is always better to know for sure, rather than to let it go and regret it later. I'm glad I had a biopsy when my radiologist recommended one for my suspicious microcalcifications; (they found LCIS, but had suspected possible DCIS) ; then I was able to make decisions going forward for lumpectomy, closer monitoring and preventative meds.


  • camillegal
    camillegal Member Posts: 15,711

    Please just go and get it over with--there were so many needles in me I asked if he was doing acupuncture, then when he told me this would hurt he went right thru my nipple all I said was I have had better foreplay than that. And it was done, nothing really felt bad it just pinched a little- I had several lumps all over and he did it in no time and I had it done right away. So please just do it and u'll know what if anything u'r dealing with and go from there. Good Luck

  • camillegal
    camillegal Member Posts: 15,711

    I Just noticed this is u'r first post---Welcome to aplace where no one wsnts to be but is thankful that they are. There are wonderfully informed women here (not me) and they are super nice  so let us know.

  • Jodycat
    Jodycat Member Posts: 6

    It is not worth thinking about. Get it done; then you can either go your merry way or make a more informed decision about watchful waiting.

  • janet456
    janet456 Member Posts: 14

    Definately get it done.

    My diagnosis was not straight forward at all, my DCIS was found as an incidental finding on final pathology for something else.  Hence my first biopsy was on 1 June and I didn't get diagnosed until 25 July.

    I now know that the waiting and worrying is far worse than actually knowing.  xx 

  • CoolBreeze
    CoolBreeze Member Posts: 250

    A stereotactic biopsy is done for a specific reason - it's to sample small calcifications.  A core or needle biopsy is to sample a large lump.    So, there is no "overreaction" in the type of tests they choose - they choose the best one for what they see on the films.

    In my case, I had core needle biopsy and a stereotactic as I had a lump and calcifications.  Neither test was anything to worry about or be afraid of, and I described them here.  The worst part of the stereotactic is that i had to keep my head in an uncomfortable position.  I felt no pain at all in any of them.  (Later, I also ended up having an MRI guided biopsy, also pain-free.

    Ultimately, it's your body and your decision, but I would get the biopsy to find out what you are dealing with.  You are right that sometimes doing nothing is not the worst choice - but they mean doing nothing AFTER you know what you are dealing with.

    If you do, indeed, have DCIS, then you can decide whether you want to do watchful waiting or not.  It's not commonly done for DCIS at this point but I believe they are headed in that direction, as they are now for prostate cancer.  You can certainly find a doctor who is willing to do watchful waiting for you if you insist.  The problem is sometimes that there is an invasive component that doesn't show up until it is removed and examined.  You may have LCIS or ADH that is easily watched.  Or, you might have nothing wrong.

    Even a small stage i invasive cancer can lead to death and sometimes quickly, if you are HER2 positive.  With the biopsy, you will find out how fast the cells are dividing, what level of "bad" they are, and other facts that can help you know what to do.

    Speaking as a woman who has been dealing with cancer for three years - and who is metastic and will die from it, I obviously don't think ignoring it is the way to go.  I found a small dimple in May of '09, didn't get my biopsies until late August and didn't have surgery until the end of October.  Who knows if that four months that I kept telling myself it was a cyst is when it spread to my liver?  Maybe that delay killed me.

    That's not to say that even if you have invasive cancer that it is a medical emergency.   Most women can take some time from dx to surgery but I, unfortunately, ignored it before the dx and then had some complicating factors that made the surgery another couple of months. 

    I want to caution you and everybody who reads this about one thing:  do not read into the faces of your radiology techs.  People twist themselves into knots about this and they really should not.    I have had two to three hundred doctor's appointments and maybe 30-50 tests that require a radiology tech.  They really are not giving things away facially or any other way.  Looking to the radiology tech for information is like asking your air conditioning repairman why your dog keeps throwing up.  They are trained to run equipment, not read results.   They are not looking for details on your results, they are only looking to see if the films are clear to give to a radiologist; as I have become familiar with some and become a "regular" I have asked them.    And, they do these scans all day, every day, 5 days a week, and have good days and bad days and fights with husbands and annoying coworkers, etc.  We are really meaningless to them, nice as they may be - they don't cry when they see a result that could be cancer as some think.  

    Anyway, the bottom line is neither you nor your doctors know yet what is going on with you.  It could be DCIS, or it could be invasive.  Or, more likely, it is nothing.  Calcifications are common.  But, I always think knowing is better than not knowing.  Making an informed decision means you need information to base that decision on.  Right now, you have almost none.

    Good luck to you, I wish you the best. 

  • Member Posts: 1,435

    The radiologist misspoke.  She was correct that 80% of microcalcifications that are biopsied are found to be benign and only 20% are found to be breast cancer.  But she misspoke when she said that the worst case scenario is that the diagnosis would be DCIS.  Usually if cancer is found as a result of the presence of calcifications, the diagnosis is DCIS.  But about 20% of those diagnoses will be something more serious than DCIS - those 20% of diagnoses will include invasive cancer.  

    So if 20% of the biopsies result in a cancer diagnosis and 20% of those diagnoses are more than just DCIS, it means that there is a 4% chance that you might have invasive cancer. That's not high - it means that there's a 96% chance that you don't have invasive cancer (and an 80% chance that you don't have cancer at all) but I think it's worth getting the biopsy, because, as Coolbreeze noted, even a very small area of invasive cancer can turn out to be very serious.

  • trying_not_to_worry
    trying_not_to_worry Member Posts: 12

    Thank you all so much for your responses, inputs and advice!

    Let me add a bit of information and a few more questions:

    My situation is complicated by the fact that I'm in the middle of a move; I'm not only
    leaving the city and state, but also the country for a year. In my worst case
    scenario, assuming having a biopsy now with bad results, I might not be able to
    see a surgeon for several months.

    Also, the radiologist did imply that waiting a few months would probably do no harm.
    It very much sounded like "I have to recommend biopsy, to cover my professional
    butt, just in the unlikely case things do turn out bad ...." (this is of course
    my rendering).

    There is no lump on the mammogram associated with the microcalcifications.

    I'm pretty sure that in my case a biopsy is not "just an hour out my life," but entails
    lots of worries before and pain during and after the procedure. I numb very
    badly and am pretty sensitive to needles of any kind. (I am also still sore
    from the mammogram 4 days ago.)

    But I also know that those of you who say "do not wait" have a very good point.

    Here are some fairly provocative questions (in the hope that some of you may contradict
    my assumptions):

    What if the biopsy is non-conclusive?  More, even more invasive, procedures will be ordered ... (there are a few reports of this in this forum).

    Should I really add more traumatic events to my life just for the sake of knowing?

    How much is imposed on us just to cover the doctor's butts?

    Did any of you consider alternative ways of healing before going into surgery?

    Doesn't biopsy only make sense if surgery is automatically the next logical step?

    Don't we all know that there is a strong correlation between stress and BC?

    Why would I volunteer to increase my risk factors for BC so dramatically?

    And, how about the chances of rendering an in situ carcinoma invasive through an excessive
    poking around in your breast during biopsy?

    (maybe all that just means, I'm really scared ...)

  • Mardibra
    Mardibra Member Posts: 194

    Trying - forgive me for being blunt, but it sounds like you have already made up your mind to do nothing.  You seem to be looking for others to agree with you to help you justify your decision.  If you dont want to do anything at this time, thats your decision.  But, I dont think your going to get many people on a breast cancer site to agree with you.  We all have breast cancer!

    Regarding your questions:

    What if the biopsy is inconclusive?  What if it is conclusive and turns out to be nothing.  Wouldnt you love to have that monkey off your back?

    Should I really add more traumatic events to my life just for the sake of knowing?  Nothing more traumatic than a mastectomy, chemo, and radiation.

     How much is imposed on us just to cover the doctor's butts?  In my case, nothing.  Im glad they are cautious.  

    Did any of you consider alternative ways of healing before going into surgery?  No.  If you want to try alternatives after surgery, fine.  Most folks, even alties, at least do surgery where necessary.Doesn't biopsy only make sense if surgery is automatically the next logical step?  No.  A woman who works for me had a biopsy last week.  Results came back cancer.  She has since moved on with her life.Don't we all know that there is a strong correlation between stress and BC?  I dont know that.  I certainly dont believe that.  Cancer risks are many things not just stress.Why would I volunteer to increase my risk factors for BC so dramatically?  Wont the stress of not knowing be worse?And, how about the chances of rendering an in situ carcinoma invasive through an excessiv poking around in your breast during biopsy?  You wont know what you have until you have it biopsied.  Until then you dont know that you have DCIS or, God forbid, IDC.  This is all scary stuff.  Perfectly natural to be scared.       
  • Member Posts: 1,435

    To your questions: 

    What if the biopsy is non-conclusive? More, even more invasive, procedures will be ordered ... (there are a few reports of this in this forum).  Yes, that's possible.  

    Should I really add more traumatic events to my life just for the sake of knowing?  We all had lives going on when this happened.  Cancer can't be scheduled.  Hopefully your calcs aren't cancer but if they are, then you already have BC.  Waiting isn't going to do anything but possibly make the diagnosis worse.  

    How much is imposed on us just to cover the doctor's butts?  Biopsies aren't ordered unless the films appear to present a high enough risk that the biopsy is warranted. There are lots of cases where something suspicious is found but rather than order a biopsy, the radiologist recommends a 3 month or 6 month follow-up. That's a normal part of the process.  Most radiologists would prefer to take the follow-up approach rather than schedule an unnecessary biopsy.  The fact that a short-term follow-up isn't the recommendation in your case suggests that the risk is high enough to schedule the biopsy now. 

    Did any of you consider alternative ways of healing before going into surgery?  A stereotactic biopsy is a not surgery, not by my definition anyway (having had several of these biopsies and several surgeries).  After a couple of my stereotactic biopsies, I drove myself home. I've been told to take it easy (no strenous lifting or activity) for 24 hours but that's the been the extent of it.   

    Doesn't biopsy only make sense if surgery is automatically the next logical step?  A stereotactic biopsy is recommended in order to get a diagnosis and hopefully, if the biopsy is benign, avoid surgery. 

    Don't we all know that there is a strong correlation between stress and BC?  That is a theory, one that I happen to believe. (Edited to add: I don't believe that stress causes BC - nobody knows what causes BC; there are hundreds if not thousands of risk factors. I think stress might cause dormant cancer cells already present in your body to come to life and begin to multiply and expand.)  It's true that having a stereotactic biopsy is stressful. But would you find it less stressful to wait for 3 months or 6 months not knowing if you have cancer in your breast that might be growing, and knowing that the radiologist was concerned enough to recommend a biopsy?

    Why would I volunteer to increase my risk factors for BC so dramatically?  It is said that having a biopsy increases your BC risk but in actual fact your risk only increases if a pre-cancerous condition is found.  And the truth is that your risk doesn't really increase; it's just your awareness of your risk that increases.  Having that awareness allows you to take action, such as participating in a high risk screening program. 

    And, how about the chances of rendering an in situ carcinoma invasive through an excessive poking around in your breast during biopsy?  The biology of DCIS doesn't allow that to happen.  DCIS cells do not become invasive just by being moved from the ducts into open breast tissue. A change has to happen at the molecular level of the cell in order for a DCIS to become invasive and be able to survive and thrive in the open breast tissue. Since most women diagnosed with DCIS start off with a needle or surgical biopsy (a surgical biopsy also disturbs the cells and even cuts the milk ducts that contain the DCIS), if the biopsy itself were to cause DCIS to become invasive, it would mean that by the time they had surgery, most women initially diagnosed with DCIS would be found to have invasive cancer. That's not what happens.  Most women (80%) diagnosed with DCIS via a needle biopsy are ultimately found to have only DCIS. 

    A few other points:

    There is no lump on the mammogram associated with the microcalcifications. With DCIS, there usually isn't.  I had what appeared on my mammogram to be only a couple of small area of somewhat suspicious calcificiations.  It turned out that I had over 7cm of high grade DCIS and 1mm of invasive cancer. But there was never a lump.  

    The radiologist did imply that waiting a few months would probably do no harm.  That's probably true. If you are one of the 80% whose biopsy is benign, then that's certainly true. And if your biopsy indicates cancer but only DCIS, then while surgery will be recommended to remove DCIS, usually waiting a couple of months to have the surgery isn't a problem.  If the DCIS is low grade, waiting even longer likely wouldn't be a problem.  But until you have the biopsy, you don't know whether waiting is a risk or not. 

    A biopsy is a simple procedure that will take a 1/2 day out of your life. It might be painful (although it shouldn't be if done correctly - mostly it's just uncomfortable because of the position that you have to stay in) but it doesn't last long and then it's over and done with. With the answers from the biopsy you know what, if anything, needs to be done next.  

    I've had lots of call backs.  Sometimes nothing more needs to be done after the diagnostic mammo and ultrasound.  Sometimes I've been scheduled for a short-term follow-up.  And sometimes the radiologist recommends an immediate biopsy.  With something as important as my health, I don't try to second guess the radiologist.  

  • trying_not_to_worry
    trying_not_to_worry Member Posts: 12

    dear mardibra and bessie,

    thanks a lot for your detailed responses.

    mardibra, you are right I almost decided to do nothing for now, but thanks to your responses I am in the process of revising my almost-decision. You are also right that women who worried and had benign test results are probably no longer lingering on this site.

    my hesitations are partially due to closely following a friend's BC case , who suffered mis-diagnoses, contradictory diagnoses and also some unnecessary surgery; yes, she did have BC and at least some of it (maybe most, maybe all) was removed, nobody knows for sure. She opted out of the suggested follow-up treatments.

     I really appreciate your detailed input and will think again

    Thank you


  • camillegal
    camillegal Member Posts: 15,711

    Wow trying not to worry U really got u'r answers like I knew u would. And never read a tech's  expression--they're so used to doing what they do their mind might be on what their going to make for dinner. As long as u don't hear OMG I've never seen anything like this don't give it a second thought. So know I hope u'r NEW DECISION has been made and we all hope for the best.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,861


    Beesie and mardibra said it more succinctly and bluntly than I could. Focus not on the "what ifs" of the unknown but on the resolution that a biopsy will probably give you. Do biopsies ever yield inconclusive results? Yes, but not often so perhaps that's why you see few reports of it on this forum (FYI, people talk about everything, the good, the bad and the worst on this forum. Not much sugar coating here!). Remember your chances of having benign results are far greater than your "what ifs". Have the biopsy and hopefully, you can move forward with your exciting move with complete peace of mind. I wish you the best.


  • Stormynyte
    Stormynyte Member Posts: 179

    Ok it's been one of them days so excuse my bluntness...or don't.

    You could have breast cancer. Breast cancer kills people. About 40,000 a year.

    You could have nothing, a cyst, a calcification or whatever other random crap goes on in breast tissue. 


    We are all to busy for this crap, but really, is your trip worth dieing for?

    I blame this on the pink crap. People think that breast cancer isn't a big deal. Stage 0 or Stage IV, it is a big deal and you should take care of it now.

    I don't mean to be harsh or to scare you, but you should be scared. This is scary shit. Stop making excuses like I did and just deal with it.

    I hope like crazy that it is nothing, but you have to find out what it is before you can make a informed decision on what to do or not to do about it.  

  • SewinthePast
    SewinthePast Member Posts: 1

    I had my stero biopsy this past Wednesday - I went to a place that is a regional breast center with an all female team AND they do 4 to 5 of them a day there. They know how to accomidate anything and everyone.

    they knew I don't have great results with the "normal" locals so they pulled out the alternative (WORKED GREAT!) Took my muscle relaxer before for my neck (and it chilled me out) I had to sites in one breast to go for.

    They also knew from talking with me my mom DIED from BC just a few years ago (and yes she went to the dr at the first sign of something being amiss - it can be very rapid (she was gone 5 months after the first symptoms (and had a NORMAL mammogram a month before that)) They asked if I wished to have the biopsy after explaining the proceedure and I said not knowing is NOT an option in my mind.

    Was it a test I would like to have again - NO but as I sit and wait for my results at least I will KNOW what path I am going to be taking. One would be my regular life - the other life with cancer treatment.

    It is up to you BUT if you are fine with not knowing then so be it. The radiologist did say some are fine with not knowing and just leave...Sometimes we just need to face up to the unpleasant things because in the long run they are good for us to do (ie biopsy)

  • pupmom
    pupmom Member Posts: 1,032

    The radiologist also sugar coated what bc diagnosis you might have. It could be DCIS. But it could just as easily be invasive. You won't know until the biopsy. Even after that there is a chance that you have some invasive cancer in there that the biopsy missed. Only surgery where everything is taken out and analyzed will tell the tale. IF you have cancer and it is high grade, whether DCIS or invasive, you could be in serious trouble in a very short tiime.

  • oregongal
    oregongal Member Posts: 4

    I thought I would come along, 16 years of papillomas, lumps even aDH, but no cancer.  The other folks on the board are the unlucky ones, they have the bad outcomes, I have not.  I have even taken the risk of not doing anything about lumps when I had no insurance for a couple of years and not only was everything fine, but my breast had a very its calmest during that time.  But I tribute it to lack of stress, I was selling on ebay, I set my own hours, didn't think about the future financially, got plenty of rest.   And, had I known that you could get help financially with this stuff, I would have had it removed or biopsied. 

    So, how do I feel?  Get the biopsy.  You have been under a tremendous amount of stress, the body reacts to that kind of stress, divorce is hard on the body, physically and mentally and you are facing more stress (both good and bad) with your move.  The other item you did not mention is family.  How would you feel facing your family if you didn't go through with the biopsy and then your outcome was worse down the line?  The biopsy will give you the peace of mind to go forward with your life, if it is negative, have a great year abroad.  If its positive, you will then know what you are dealing with. 

  • amanda1116
    amanda1116 Member Posts: 5

    No one here is you nor can tell you what to do.  What anyone here can tell is is what they have done.  I personally would get the biopsy because if I didn't and went against medical advice, I would be thinking "Should I have?" basically forever and it would drive me even more nuts than my albeit hysterical fear of breast cancer.  That is just me, however and you know yourself and what you can and cannot live with.  The way I figure it is that a biosy is stressful in the shorterm but being instructed to have one and not doing so is a huge, longterm stress that may have emotional and physical consequences. But it's a stress with a very real solution. 

    I keep saying this and saying it and saying it, but there is no diagnosis of B9 breast conditions or malignant ones without biopsy.  That is why pathology exists as a medical sub specialty. It is the bottom line and not just for breast cancer at all. Medicine is your basic inexact science like all of science.  It has its limitations.  But pathology is an exacting part of this inexact science.  Mammography, sonogram and especially MRI of the breast can be very wrong and have false positives and with less frequency thanks to technology, false negatives.  But looking at breast cells under a mircroscope is far more definitive to the trained eye.

    You need to do what YOU feel comfortable with at THIS time in YOUR life.  That is the bottom line.  All the suggestions here are valid and well-meaning but in the end, for everyone, decisions like this are personal. The goal here is that you are at peace with whatever you decide and it is neither right nor wrong: it's about what you choose, period, end of story.

    I wish you luck with all of this.  There is no right or wrong choice.  Amanda

  • trying_not_to_worry
    trying_not_to_worry Member Posts: 12

    Dear all,

    here is an update on my situation:

    I returned to the US and postponed my move in order to keep my appointment with a breast surgeon; the
    first and only physician so far, who took the time to explain my suspicious mammogram to me. I had to wait (almost) a month because she was on vacation.

    I saw her today. What I learned was rarely news, but made me hesitate again to go for the biopsy, for which I
    was almost decided by now.

    The good news is that she affirmed, given my mammogram and ultrasound results that it is very very
    unlikely that I have an invasive cancer right now. The chances for that are very close to zero.

    The worst case scenario is DCIS!
    And the changes for that are 15% in my case, as opposed to 85% chances that my microcalcifications are due to duct contractions that happen as a result of the aging process.

    Upon voicing my concerns with the mammogram guided core biopsy (or stereotactic vacuum assisted biopsy) - extremely high amounts of radiation (6 times as much as a screening mammogram, rather random destructive poking round, pain, tissue scaring, changes of hemorrhage (blood vessel destruction), etc ...- she recommended an open biopsy, that is wire guided surgery and the removal of the calcifications right away.

    I do not understand, why I possibly should have surgery with a 15% chance that there's anything wrong with my breast at all.

    What a surprise: a radiologist recommends a stereotactic biopsy; a surgeon recommends surgery, that's their
    job!!! Nobody seems to care about your well-being.

    MomtoLisa's report is encouraging, but I do think such a treatment is rare.

    I'm very confused again.

    I do understand that nobody with breast cancer on this list or elsewhere would recommend to wait - I wouldn't
    suggest that either if I were diagnosed with cancer.

    However, the recommendations I am getting go against any kind of common sense. 

    (the surgeon whom I saw also admitted that nobody would recommend a biopsy in my case if I were living in Sweden (where 80% of biopsies turn out to be cancerous as opposed to 20% in the US); but in the US we do have the privilege of a large number of unnecessary surgeries; or, is it just incompetent physicians????)

  • Shappy
    Shappy Member Posts: 1

    If you ask in this forum you will get a biased set of answers, the bias here is strongly for more screening/treatment.  I do think everyone's motives are very sincere (in fact I think these are some of the nicest women on the planet) however medical treatment should be based on evidence, not emotion.

    I certainly can't recommend what to do because I don't think there is a 'right' answer.  Here is a link from the NY Times today on how little the medical community really knows about screening: 

    Medical practices should be evidence-based, not based on anecdotes ("I would have died without that mammogram").  The theory of cognitive dissonance means that whatever difficult choices women make in hind site they are convinced it was the right one.   The advances in breast cancer survival have come from better treatment, not better screening.

    The "number neeed to treat"  is the most important one IMHO in deciding on setting guidelines for breast cancer treatment.  Unhappily it seems like thousands of women are unnecessarily treated to save one life.

    Good luck in making your decision.  I'm playing devil's advocate here, not trying to influence your decision but just pointing out there is 'group think' on this forum and people's answers/opinions are quite biased, and yes, I've been in your shoes.

    p.s. I believe the number one lawsuit for radiologists involves mammograms 

  • trying_not_to_worry
    trying_not_to_worry Member Posts: 12

    kayb, I have to politly disagree.

    You are right, doctors are not the enemy, but my body is also not a car or a computer, in which you just cut out the malefunctioning parts. The cancer clinics I have seen resemble factory farms, with the only difference that the goal is to keep alive rather than to kill. And we all know that this is not working very well in the case of breast cancer.

    No, I won't be sitting around and wait until my 15% chance of DCIS develops into an invasive cancer. This has been a warning to me. There are things I can do right now to decrease the risks of that. Things that surgeons, who believe in the car/computer model of your body, will never tell you.

    What will a biopsy that returns a "B9" result with 85% chance do to me? It might give me permission to continue a lifestyle with utter disrespect to my physical well-being. With the only difference that I then will have a scar and considerable less breast tissue and a lot more stress in my life. I will also have contributed to the medical machinery that puts millions of other women in the same position, scaring the hell out of them, disrupting their lives for no good reason - 80% of us scheduled for a biopsy! This is not done with our well-being in mind. It is a risk-reduction not for you or me but for the possibility of law suits against the radiologist or surgeon.

    There is no "care" in this health care system. I have lived in a few other countries outside the US and know that it does not have to be that way. Of course, there are exceptions also in the US. I may eventually have an open biopsy, but that will be done by a physician who treats me with respect and care and whom I can trust, and not one who tells me that "science has proven that biopsies cannot render DCIS invasive". That's plainly an extremely uneducated statement! Science can never PROVE such a thing; it can collected data and evidence in support of this; that's all. The circumstances under which the data in support of this are collected are all what matters. Before i have an invasive biopsy I better make sure that those circumstances are met.

    As Beesie stated above, "With something as important as my health," I will ALWAYS question the radiologist and the surgeon. 

    If this is offensive to some of you, I apologize in advance. Please keep in mind that I am very far away from a cancer diagnosis. I can imagine that i'd put some of the things I'm saying here a bit differently if had been diagnosed with a late stage invasive cancer, but that's not the case right now.

    The most important insight came from Amanda, I quote: "You need to do what YOU feel comfortable with at THIS time in YOUR life".

    All of you, however, have contributed in helping me find what I feel most comfortable with right now. The most blunt statements may have even been the most helpful ones. THANK YOU!

    The hardest thing to realize was perhaps that I have to make the decision ultimately all by myself and take full responsibilty for it; nobody else can do that for me.

  • itsjustme10
    itsjustme10 Member Posts: 64

    It's obviously your body, and you're going to do what you want, as you should.  But, if you get a chance to read this thread, it might give you something to think about - or not -

  • momof3boys
    momof3boys Member Posts: 63

    My SIL went through something similar. Her BS actually called her with the results of her biopsy while she was in the waiting room with the rest of my family during my BMX. He told her that it was DCIS, NOT cancer, Stage 0. After she asked a few questions, he literally said "look, you sound upset, don't be. You can literally pack your bags and go to Tahiti for six months and think this over, there is no hurry at all" She went for a 2nd opinion, BS recommended lumpectomy, went in twice because they didn't get clean margins. Final pathology showed IDC within the area of DCIS. Tahiti huh??

  • ali68
    ali68 Member Posts: 644

    Hi Hun, I understand what you are saying but I just want you to read this.

    I was 43, hill walking three times a week, 9 stone 3lbs height 5ft 6, my diet was great no rubbish, never smoked, drank a glass of wine, no family history , never had health problems, always checked my breasts every month.

    I woke with a lump in my arm pit and two weeks later has a lump on my breast.

    Six weeks it took my doctors to send me to a surgeon because I was 99.96% against me having breast cancer.

    It turned out I had grade 3 stage 3 breast cancer, if I were you I would think about peace of mind. Us girls who have had treatment have been through hell and back - get tested it's nothing to worry about.

  • Member Posts: 1,435

    trying_not_to_worry, since you quoted me out of context in your post, let me restate what I actually said:

    "With something as important as my health, I don't try to second guess the radiologist" 

    I do agree with you however that it's a good idea to "always question the radiologist and the surgeon". I most certainly do that.  I question them so that I have a completely clear understanding of my situation and my options and the benefits and risks of all the alternatives. And I get a second opinion if I don't understand something that's being recommended. Ultimately though I accept that they are the experts and not me. If it had been up to me, I would not have had the excisional biopsy after my needle biopsy showed ADH (a high risk condition).  I'd had excisional biopsies before and I really really didn't want to have another. Another surgery, another scar, all for no good reason. But my doctor explained why he was recommending it, and even though he thought the odds were good that nothing more than ADH would be found, he explained the implications if something more was found.  So I very grudgingly and not very happily had the excisional biopsy. And guess what?  A lot more was found.  7cm of DCIS and a microinvasion of IDC. Stage I breast cancer.  Still very early stage, still very treatable.  A 'good' diagnosis, if there can be such a thing. What would have happened if I'd gone ahead with my wishes over that the recommendation of my surgeon?  I would have not discovered the cancer until at least 6 months later, or possibly a year later. There would have been a larger area of invasive cancer by then and it's quite likely that I would have needed more toxic and difficult treatments, chemo perhaps.  And my long term risk of mets (and thereby my risk of dying of breast cancer) would have been higher.

    That's just my experience.  Listening to my surgeon turned out to be the wise thing to do. His cautiousness undoubtably saved me from a much more serious diagnosis and more toxic treatments.  

    I've been hanging around here for 6 1/2 years now.  I've learned a lot about breast cancer. And the one thing I know for sure is that my knowledge barely scratches the surface.  So as much as I know and as much as I question, when push comes to shove, I don't try to second guess my radiologist and surgeon.