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Refusing an early biopsy? Any opinions?

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Comments

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,315

    DCIS is cancer, hence the C. It just not invasive cancer.

  • trying_not_to_worry
    trying_not_to_worry Member Posts: 12

    infobabe,

    Yes, I know, there is a three months waiting period. I have already applied for the health card; I'm officially in Canada since early August - 2 months and a couple of weeks to go.

    This all part of the craziness, my extreme insecurity and the vacillations ...

     RobinJoy, Thank you!

  • SallyO
    SallyO Member Posts: 8

    Think we have been down this road before!!!

  • edwards750
    edwards750 Member Posts: 1,568

    Wow how did this situation become a verbal volleyball? I will echo what others have said and that is it is your life and your decision. I for one would not consider not having a biopsy. A friend's sister knew she had some concerns but chose to wait...six months later she had a double mastectomy, massive doses of chemo and died a few years later. She was young but obviously in denial. I can relate to trying to get a read on the tech's face and in fact my tech told me I would be ready to get dressed and go home after I was told to come back for another mammogram. One of my breasts looked larger than the other. Talk about your immediate giveway. Never happened to me before and I just knew. I was feeling better when the tech told me that so you can imagine how devastated I was when the Rad walked in and said "you are not going to like this". And I didnt because it turned out to be IDC...Stage 2(micromet in SN) and Grade 1. I am a poster person for worrying so there is zero chance I would not do whatever I had to to allay my fears. Again it is your choice and your life.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    Hey folks, don't be so quick to judge.  The issues and concerns that Trying has are quite different than Rena's and the way that she is responding here and participating in the discussion is very different as well.  

    The other thing to keep in mind is that there are a lot of people reading this thread and the good information provided in response to Trying's concerns and questions will be helpful to anyone who reads.  

    trying_not_to_worry, there is a lot of history on this board and you are getting caught up in some of it.  

    Back to the issue at hand.  Here is an explanation of BIRADs ratings:  http://www.birads.at/kategorien.html

    And here is a recent study that looked at the predictability of BIRADs ratings:  http://www.ncbi.nlm.nih.gov/pubmed/20410428   The study was relatively small, only 146 women, but it was specific to the BIRADs ratings given to calcifications seen on mammograms, so this study is particularly relevant to your situation. "The positive predictive value for malignancy according to BI-RADS assessment categories were as follows: category 2, 0%; category 3, 0%; category 4A, 13%; category 4B, 36%; category 4C, 79%; and category 5, 100%."  With a larger sample I'm sure we would have seen some malignancies in the BIRADs 3 category and some benign results in the BIRADs 5 category. But what's most relevant to you are the BIRADS 4 results and those are pretty consistent with what would be expected.

  • bkinney
    bkinney Member Posts: 1

    I realize I am very late to join this conversation, but if you are still listening, I'd like to know what you ended up doing. I just got home from my post biopsy visit with the surgeon. Stereotactic biopsy revealed lobular hyperplasia, which, according to my research, is even less of a threat than DCIS, but the surgeon wants to do a follow-up excision to check to see whether nearby cells have DCIS. Given that I would probably refuse a lumpectomy even if low grade DCIS were the outcome of an excision, I am strongly inclined to refuse all further treatment. In fact, it's hard for me to imagine a scenario under which I would change my mind.

    The issue for me is, what happens now? If I go back for another mammogram in a year, and it again shows micro-calcifications, I'm not even going to be willing to undergo another biopsy, which, by the way, was not painless at all, not to mention costing me hundreds of dollars even after insurance. But the question then becomes, what is my plan for detecting invasive cancer before it is too late? Should I forego mammograms entirely and stick with monthly self-exams? Who can I talk to about options other than the ones that have the blessing of the medical establishment? I'm not interested in alternative therapies, only in avoiding unnecessary procedures.

    Stage 0 cancer doesn't scare me. Technically speaking, Stage 0 cancer IS NOT CANCER. There is precious little evidence to suggest that treating stage 0 cancer decreases your odds of developing invasive cancer. That said, my husband and my friends are worried that I will turn away from this nasty game to the extent that I may actually end up dying of breast cancer. What can I do?

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435

    bkinney,

    trying_not_to_worry hasn't signed onto BC.org since August 25th 2012 so I'm guessing you might not get any response from her.  But perhaps she's reading and will check in to let us know what she did. It would be interesting to know.

  • Mskitty
    Mskitty Member Posts: 6
    Bkinney,

    Your story/opinions really stood out to me. Had routine mammogram, showed micro calcifications, had ultrasound on Val Day.....they are clustered. Now scheduled for biopsy this Wed. Feel overwhelmed & rushed. Going on whatever the breast center is telling me because I'm basically in shock.....how did this touch ME!? I'm 47, workout daily, eat right, take care of myself, basically doing better than most my age. I'm wondering, is this opening a can of worms? What if I do nothing, & just get follow up mammogram to watch for changes? Feel like this is only going to awaken the beast....



    I've been online daily, hours at a time, looking for any information. This has been the most helpful site yet. My gut is telling me this is over-kill on all the tests, don't know what to do really.



    BEST WISHES to you!

  • MrsH
    MrsH Member Posts: 1

    Mskitty, I'm relatively new here and, although it never occured to me to not get a biopsy after mammo and ultrasound revealed some suspiciousness to my palapable lump, it turned out to be cancerous and actually multiple cancerous lumps (3). I felt like you, how could it happen to me? 46, breastfed my kids, eat healthy, don't smoke, drink occasionally, practicing yoga for almost 2 decades, changed careers to minimize stress and no history of breast cancer in my family... it's just dumb luck, and there are multiple types of breast cancer. I'm sure there are other women who can articulate this better, but I think that if it's anything, the earlier you treat it, the better the outcome. I've had every test done under the sun at this point and I feel pretty good knowing I am doing everything I can to move forward and heal. I hope that helps :-)

  • april485
    april485 Member Posts: 1,983

    MsKitty, and BKinney, My Birads rating was 4A and according to Beesie's recount of the study, had only a 13% chance of malignancy. Guess what? Here I am. Lumpectomy this coming Thursday for suspected DCIS (why do I say suspected?) One never knows what ELSE pathology will find upon dissection of the area they took out in the lumpectomy. It could be hiding IDC. I am scared but grateful that my chances are small that this will come to be, but it is still there. I am in the "Get it out" camp as I don't want to fight for my life down the road when I can possibly walk out with a scar and some rads and AH's. No chemo, no mastectomy right now. I am blessed..at least until the path report comes back.

    GET the biopsy! Anyone who doesn't is as crazy as they come imho. A small price to pay for not only peace of mind but possibly for your LIFE! YOUR LIFE! Can it be any more clear to anyone with a suspicious mammo/US/MRI? Go on over to the Stage IV threads if you need to see what could be your fate if not caught early enough. Those brave men and women are in a fight every single day. EVERY SINGLE DAY. Eventually, they will die from their Mets. Hopefully they can buy lots of time and many have but not without a price.

    I pray that anyone reading this thread who is on the fence get real with themselves and stop the madness. A tinly little incision via a biopsy for Pete's sake. That little piece of tissue can mean the difference between life and death. Literally. Sorry for being a hard ass, but that is the facts. Period.

  • Mskitty
    Mskitty Member Posts: 6

    April485,

    Thank you being straight-up, I did get my biopsy today. I wasn't worried about the procedure, just the results, which I will get & face tomorrow. Reaching out for any advice, info, opinion....I feel very on my own with this right now. It has completely blindsided me.

    You have a big day tomorrow, I hope all goes well. Would like to know any details you are willing to share. Reading & following personal experiences seem to be the most beneficial to me, since everyone's cancer is different.

  • april485
    april485 Member Posts: 1,983

    Ms Kitty, I was pretty raw when I wrote that post. I am truly scared. Cancer is an isidious disease and even after treatment ends, you spend years waiting for the other shoe to drop. It might get easier after a few years of no bad mammos, but it is still there waiting...lurking in your mind. Will it come back? Will it be worse? Will it be mets?

    I just wanted to make the point that a biopsy is a small way to find out what you have there that caused the concern. Biopsy is the only way to know. It hurts a little bit but it goes away. If I didnt have the biopsy, the DCIS in my breast that was found could have become IDC in a short time or never. I won't take the chance to find out.

    Tomorrow is a huge day for me. They will remove a good sized chunk of my breast. But, after the path report comes back and I pray that it says "all clean margins" I will just go on to the next step. Rads. Then I will take the AI so that I keep lowering my chances of getting this disease again. I want to live. I don't want to die. I may be over reacting since mine is as early as it gets, but that is how I am feeling.

    I am glad you did get your biopsy. The results will be what they will be. I pray for you that you hear the words I didn't. That yours is benign. But, if you don't, this community is amazing. I have received so many hugs and good thoughts since coming here. We are all united in this  quest for staying alive. That is a pretty profound thing. You are NOT alone. We are here for you. Everyone in this community has been very supportive.

    Keep me posted! And know that we care!

  • Mskitty
    Mskitty Member Posts: 6

    April485,

    I can't even imagine what you're dealing with, I am so very sorry. I sat here & cried after reading your reply. I will be thinking & wondering about you. You said everything that I'm feeling.....I want to live, I'm not done yet. I wish I knew the right thing to say to you, sometimes there are no words to comfort. But, I truly hope for the best possible outcome. I will be looking for you on here.

  • Mskitty
    Mskitty Member Posts: 6

    April485,

    Biopsy showed no cancer, BUT, have A-type pre-cancerous cells in the cluster of micro calcifications. Meeting with a surgeon next Thursday to get a date to have it removed - lumpectomy. I feel very fortunate & grateful......considering it could have been much worse. Take it as it comes.



    It is late evening, I'm thinking your surgery has finished by now & you're in recovery. Ahhh, I'm anxious to know you're ok.

  • april485
    april485 Member Posts: 1,983

    Laughing Great news! I agree that getting it out is a good idea. My lumpectomy took longer than they anticipated because they ended up giving me general anesthesia due to where it was located (lots of nerve endings) and they didn't want me to have pain during surgery. So, I ended up in recovery longer than I would have been. But, home now and wrapped in my blankie with a nice fire in the fireplace, ice on the boobie and pain killers making me loopy..lol

    The hubby went to get me soup from the deli cause I didn't want to eat anything else (my BFF brought me a couple of meals she cooked to heat up but dont' want anything heavy right now) so all is well. Now I wait for the path results which I will hear on March 5th at post op appt.

    Hugs and thanks for caring! Really happy for you!

  • janet456
    janet456 Member Posts: 14

    Glad you're recovering from your lumpie April.  I've been hopping from thread to thread lately but did know that your op was yesterday.  xx

  • Mskitty
    Mskitty Member Posts: 6

    Can't believe I'm having surgery in the morning to remove pre-cancerous tissue from my left breast. Less than 3 weeks ago, I was normal, I was ok, breast cancer was never on the radar. I'm feeling like I'm in the best health of my life right now, & tomorrow it goes straight out the window......all the working out, eating right, & feeling strong......f-ing gone!! I know I have it early, for that I'm grateful. I'm blessed to have a wonderful husband (married him only 19 mos. ago, after being single 22 yrs. He had to be someone pretty special for me to get married this late in life, but its been the best thing I've ever done.) Guess I'm just so mad because FINALLY I got it right, & I'm so happy where my life is now. I struggled my whole life, was always with the wrong guy, & for a brief moment I got to just breathe. I even felt nervous, everything was too good (it's never like that for me), I thought something bad is going to happen.....& it did. I'm scared about losing part of my breast, the pain, & waiting on the path results to come back. It gives me comfort knowing my husband will be there, along with my parents & sister. The surgery is not a huge deal, the FEAR is. Take it as it comes, that's what I keep saying to myself :)

  • melissadallas
    melissadallas Member Posts: 929

    You have every reason to believe you will have benign results. I had very little pain after my excisional biopsy, and most women here seem to think it was actually easier than the stereotactic one. I didn't even use my pain pills. Just took some Aleve.



    Yes, waiting is the pits, but being anxious and upset doesn't change the outcome. It just steals the joy out of the day. Find something to do to take your mind off it the best you can.



    Nothing horrible has happened. You're still lucky. Just one of those little blips in the grand scheme of things.

  • april485
    april485 Member Posts: 1,983

    (((MsKitty))) We really understand. This stuff stinks. Know that we are here if you need to vent. Good luck tomorrow. It will all be over soon and you will be ok and can put this behind you.

  • ballet12
    ballet12 Member Posts: 66

    Mskitty--best of luck with the surgical excision.  Hope it's no more than atypia.  I had an atypia diagnosis 17 years ago, and didn't have anything more serious until now, and even now, i'm only a step up from that.  Don't worry.  You'll get through it.  Enjoy your new marriage and new life!  Yeh, I can relate to what you are saying, though.  I lost a significant amount of weight about five years ago, and then began to exercise and maintain the weight loss. When I got the DCIS diagnosis, I briefly regretted not losing the weight sooner, figuring the extra weight and lack of exercise for a period of time--I'd say around 10 years--was what tipped me over into this category.  Now, I just say it happened, and I'm so glad that it was caught before anything really serious could develop.

  • TXWildFlower
    TXWildFlower Member Posts: 1

    MsKitty I totally relate. I just had an excisional biopsy as well as a lumpectomy (two separate places in the same breast- one at 12 0'clock and one under the arm) on the 6th. My wedding is in 8 days and we leave for the honeymoon the day after and now I've got stitches all over and a crazy looking breast and bruised chest but as long as pathology comes back good then I'll be a happy girl! Even though I won't be able to swim in the pretty blue water in Hawaii I can still be thankful to have this surgery behind me!

    I, too, feel like my life is really, really good right now and then out of the blue came this but I'm glad it came now when things are so good than when they were harder if that makes sense. My thoughts and prayers are with you! Fingers crossed for good results!!!

  • Mskitty
    Mskitty Member Posts: 6

    Late in posting, but thank you for the encouraging words. Surgery went well, & no cancer cells found, only atypical precancerous cells. Off work for 2 weeks, I have a weight restriction which I can't have to return. Still sore, & protective of it, wear a good bra 24/7, lol. Very happy with my surgeon, he did a wonderful job cosmetically. I know I am very lucky that it was caught so early. Guess my awareness is heightened, but I hear about breast cancer almost on a daily basis. It is still an isolating feeling I have inside of me. It will all get better with time. Talking with someone who has been there is the most comforting. Family & friends mean well, but cannot imagine how it has affected me. My scar will now be a part of me, a reminder that I came so close.....it will help me to appreciate everything & everyone in my life.

  • april485
    april485 Member Posts: 1,983

    So happy to hear this news Mskitty! Doing the happy dance for you Smile

  • Sharon53
    Sharon53 Member Posts: 1

    Dear "trying not to worry"

    Your story sounds very similar to mine. I just discovered your post...and would be interested (now 4 years later) what has happened for you? Can you give us an update?

    Thanks

    Sharon53

  • exbrnxgrl
    exbrnxgrl Member Posts: 5,315

    this is an old and inactive thread. The op, trying not to worry, has not signed in since 2012

  • YogaJo
    YogaJo Member Posts: 1

    just wondering how things turned out for you? I am in the same boat right now

  • gb2115
    gb2115 Member Posts: 553

    Hi YogaJo, welcome to BCO!

    This is a super old thread and the original poster hasn't logged on since 2012. I suspect you are unlikely to get a response from her.

    If you want to chat with others about your situation and concerns, feel free to start your own thread!! There are many people on these boards with a lot of knowledge and experience!

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