Why me?

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nycgirl
nycgirl Member Posts: 18
edited March 2014 in Breast Cancer #1
I posted a topic a few days ago about my pathology report. Basicly, my surgeon told me that my report stated my biopsy was benign(biopsy was in Aug). I saw my gyn/ oncologist (separate issue) and she stated the report read that I have DCIS. She sent for my pathology slides from the hospital in Nov so that her pathologist could look at them, well they sent the slides by regular mail (in Nov) and my doctor never received them. Can you imagine by regular mail? They finally got someone to send the slides by fedex in Jan and I got a call yesterday from my doctor that the slides they sent only had regular breast tissue on them and that I may have to have another biopsy because they may have sent all the specimen they had by mail in Nov. Problem is I had a excisional biopsy there is nothing left to biopsy. I want to scream!!! What am I supposed to do now it's been 5 months since my biopsy. I don't want them to wait to figure out something and then it has changed to something aggressive. I just don't like the whole situation. This seems to be the story of my life. Thanks for listening. God Bless You!!!!!!

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  • mrmauld
    mrmauld Member Posts: 44
    #2
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    Maybe that is God telling
    Maybe that is God telling you that everything is ok. He is good at giving us answers that we don't even know about until it is all over. So what I would do is talk to my onc and see what he suggests, maybe a petscan or something to make sure that there are no cancer cells anywhere else in your body. You can also get in touch with an onc online through the American Cancer Society and ask them their oppinion. I hope things go well . I'll be praying for you and your biopsies. Lots of Love
    Michelle
  • Chellebug
    Chellebug Member Posts: 133
    #3
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    If you haven't already I
    If you haven't already I would ask for a copy of the biopsy report and read it for yourself.
  • swalters
    swalters Member Posts: 33
    #4
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    Why me?
    NYC girl,

    You will definitely want to request a copy of the pathology report. Once you get it, you will want to look to see the grade of the DCIS. Unless it is high grade comedo DCIS with necrosis or microinvasion, DCIS is not aggresive and does not progress quickly. If it is low or intermediate grade DCIS, nothing will happen for months or years or in a majority of the time never.

    I waited for 6 month to have surgery on my DCIS, so you have time to weigh your options even with the 5 month delay.

    You might want to have an MRI to see where and how much DCIS you have as they ususally pick up DCIS better than a mammogram anyway. In my opinion, RODEO MRIs do the best job.

    It was tough for me too, and I had to ask for 2nd opinions from 2 different surgeons and 2 different pathologists to avoid a mastectomy, which I was very much against.

    Sandie
  • survivor51
    survivor51 Member Posts: 276
    #5
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    agree
    I agree to follow up with getting the report yourself and there is no excuse for what happened. They should do a blood check and check your counts against what they were in Aug. Also, I agree with the MRI because I know when I had my MRI, I actually lite up and that told them surgery was needed. If the MRI shows great then when you have the next one, you will have a base line to compare. My thoughts are with you. angela
  • seof
    seof Member Posts: 819 Member
    #6
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    I would say get the report
    I would say get the report yourself, so that you have it in your own hands, then maybetake it to another Dr. to get a second/third opinion. The MRI is not a bad idea. It is possible that the excisional biopsy might have been enough to get all the cancer cells out of your system, but I would want to have more consistent answers in your situation, I think. You are the one who has to live with the consequences, so do what you feel you can live most comfortably with.

    Take care, seof
  • lauren08
    lauren08 Member Posts: 29
    #7
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    Always request a copy
    nycgirl,
    I agree with Sandie, call & have them send you a copy of your report, also don't rush into anything until you are sure. I had my biopsy back on Dec 19th, got my results 12/30,consulted with the surgeon 1/9 & my surgery is scheduled for 2/20. I turned down the Friday the 13th date(superstitious) I will make sure I tell them at the surgi center that I want a copy of the report mailed to my home as well.

    You may even want to get a second opinion also before you have any surgery. Depending on my pathology report I may get a second opinion before I do anything else. I want to avoid radiation if I can & from what I hear if your margins are clean & your grade is low enough you may be able to skip it.
  • cabbott
    cabbott Member Posts: 1,039 Member
    #8
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    Lost slides
    You got a good lawyer? Sounds like you have a case of negligence here. They definately owe you bigtime! I'd get a MRI with contrast and a better clinic to work with when it comes to reading and sending tests. If you are in New York, Sloan Kettering is supposed to be one of the best around. Good luck!

    C. Abbott
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #9
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    lauren08 said:

    Always request a copy
    nycgirl,
    I agree with Sandie, call & have them send you a copy of your report, also don't rush into anything until you are sure. I had my biopsy back on Dec 19th, got my results 12/30,consulted with the surgeon 1/9 & my surgery is scheduled for 2/20. I turned down the Friday the 13th date(superstitious) I will make sure I tell them at the surgi center that I want a copy of the report mailed to my home as well.

    You may even want to get a second opinion also before you have any surgery. Depending on my pathology report I may get a second opinion before I do anything else. I want to avoid radiation if I can & from what I hear if your margins are clean & your grade is low enough you may be able to skip it.


    Just curious, why do you

    Just curious, why do you want to avoid radiation? I had DCIS, lumpectomy on 1/23, clean margins and scheduled for 30 radiation treatments. It was a choice but everything I've read and been told gives this as standard of care.

    Maureen
  • gemsa
    gemsa Member Posts: 22
    #10
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    Strange advice
    NYCGirl,

    The fact that your biopsy slides were lost and you are now experiencing a delay in diagnosis is NOT God's way of telling you everything is OK.

    The poster who said that you still have time to make decisions after a five month delay because she waited six months is ridiculous.

    I really am shocked at these two posts. You need to go back and demand that they either locate your original biopsy, or do additional testing to determine what is going on. Tumors can be both DCIS and invasive, so the advice to just take your time is ludicrous, especially when you do not know for sure what is going on.

    Please get a copy of your path report so you can read it yourself, and get a second opinion if you do not feel comfortable going back the place that lost your slides.

    Regarding the poster who said that they owe you "bigtime" is a stretch. Unless that you can prove that the delay caused damages, you will not have a case. But what is more important at this time is that you get a proper diagnosis and start treatment.
  • young_one
    young_one Member Posts: 67
    #11
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    gemsa said:

    Strange advice
    NYCGirl,

    The fact that your biopsy slides were lost and you are now experiencing a delay in diagnosis is NOT God's way of telling you everything is OK.

    The poster who said that you still have time to make decisions after a five month delay because she waited six months is ridiculous.

    I really am shocked at these two posts. You need to go back and demand that they either locate your original biopsy, or do additional testing to determine what is going on. Tumors can be both DCIS and invasive, so the advice to just take your time is ludicrous, especially when you do not know for sure what is going on.

    Please get a copy of your path report so you can read it yourself, and get a second opinion if you do not feel comfortable going back the place that lost your slides.

    Regarding the poster who said that they owe you "bigtime" is a stretch. Unless that you can prove that the delay caused damages, you will not have a case. But what is more important at this time is that you get a proper diagnosis and start treatment.

    I couldn't have written this
    I couldn't have written this better myself.

    Holy crap. Would any of us here really have been satisfied to have cancer go untreated for any length of time? As soon as I was dx'd I wanted that **** out of me. And no one better even dare say I made my decision out of fear. I was only swinging back at what knocked me down and I'd do it again. It's called shear determination.

    No need to OVER-think this. Cancer is bad. Get rid of it.
  • creampuff91344
    creampuff91344 Member Posts: 988
    #12
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    young_one said:

    I couldn't have written this
    I couldn't have written this better myself.

    Holy crap. Would any of us here really have been satisfied to have cancer go untreated for any length of time? As soon as I was dx'd I wanted that **** out of me. And no one better even dare say I made my decision out of fear. I was only swinging back at what knocked me down and I'd do it again. It's called shear determination.

    No need to OVER-think this. Cancer is bad. Get rid of it.

    This thread really brings
    This thread really brings back some bad thoughts I have had regarding diagnoisis, and delay. My cancer was discovered through a routine mammogram last year, January 28 2008, after having moved to East Texas the month prior. After discovery of the tumor, the radialogist called and requested the film from prior mammograms done in New Mexico, 2004,2005 and 2006. During my biopsy, the film from 2005 was up on the screen and lo and behold, the tumor was present even back then. It was not diagnoised, and therefore I went three years without knowledge that I had cancer. They did a lympectomy, 2.3 cm tumor, no nodes, Stage II. Then six rounds of TAC chemo, and 40 radiation treatments. I have often wondered if all of this would have been necessary if I had been diagnoised properly back in 2005. All of these years (probably 25 years) that I have been so diligent in having annual mammos and exams, and then you get an incompetent medical staff that doesn't take the time to really look at films. What is the point in doing the right thing when you have an inept reading? Just guess I am lucky to be where I am today, and through treatment. Now the wait and see game has started. Judy
  • mmontero38
    mmontero38 Member Posts: 1,510
    #13
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    young_one said:

    I couldn't have written this
    I couldn't have written this better myself.

    Holy crap. Would any of us here really have been satisfied to have cancer go untreated for any length of time? As soon as I was dx'd I wanted that **** out of me. And no one better even dare say I made my decision out of fear. I was only swinging back at what knocked me down and I'd do it again. It's called shear determination.

    No need to OVER-think this. Cancer is bad. Get rid of it.

    I agree Young_one. I was my
    I agree Young_one. I was my diagnosed on June 1, 2007 and scheduled the mastectomy for June, 7, 2007. I wanted it out so fast the surgeon's head was spinning. I was just glad he was able to do it on such short notice. In a matter of 6 days I lost 10 lbs from the worry. Can't even imagine what anxiety I would have had waiting any longer. And I've never regretted my decision. Peace of mind was more important to me than anything else. Hugs, Lili
  • EveningStar2
    EveningStar2 Member Posts: 491 Member
    #14
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    mmontero38 said:

    I agree Young_one. I was my
    I agree Young_one. I was my diagnosed on June 1, 2007 and scheduled the mastectomy for June, 7, 2007. I wanted it out so fast the surgeon's head was spinning. I was just glad he was able to do it on such short notice. In a matter of 6 days I lost 10 lbs from the worry. Can't even imagine what anxiety I would have had waiting any longer. And I've never regretted my decision. Peace of mind was more important to me than anything else. Hugs, Lili

    Oh ya. You beat me by 2

    Oh ya. You beat me by 2 days--8 days from diagnosis to surgery. The radiation I'm not so impatient about. But I'm 2 weeks postop and had the markers tatooed today. I'll start at 4 weeks post op unless I'm moving since I'm still looking for a job.

    Maureen
  • mmontero38
    mmontero38 Member Posts: 1,510
    #15
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    EveningStar2 said:

    Oh ya. You beat me by 2

    Oh ya. You beat me by 2 days--8 days from diagnosis to surgery. The radiation I'm not so impatient about. But I'm 2 weeks postop and had the markers tatooed today. I'll start at 4 weeks post op unless I'm moving since I'm still looking for a job.

    Maureen

    Good luck to you Maureen.
    Good luck to you Maureen. Though I didn't have to have radiation, I went through chemo. I wish you well and keep us updated with your progress. Hugs, Lili

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