Having ALOT of diagnoses problems PLEASE help

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girlsmom3
girlsmom3 Member Posts: 28
edited June 2014 in Stage I Breast Cancer

Core needle biopsy Dec10th 2010, Dec 17th result of (7mm)tubular cancer with DCIS. Lumpectomy/sentinal node removal Jan 7th. Firm belief lumpectomy was made at wrone area of breast. 2O'clock position where biopsy was at 4 O'clock position,. Dr blew off final lump result as no malig cells found. Picked up files/films to bring to 2nd opinion...found diagnoses ofFibroadenoma on report (which I know i have at the 2 0'clock position). was sent for MRI from 2nd opinion dr...result today....no bad cells seen in breast. BUT asked if I have started my Tamox. yet. They say they have no idea what is going on.........someone MUST know what has happened. I will not take tamox or have rads without knowing if i had a false positive....someone please help me.....the operating dr just blew me off and said he had no idea what has happened but never once DARED to tell me it was fibroadenoma because i ALWAYS asked if he is sure he got the right spot...he didn't

Read after that 2nd opinion private clinic uses orig ooerating hospital for 2nd opinion readings.....are they covering for them???? Has ANYONE had a false positive biopsy which led to the kind of mess that i am going through??????? 

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  • LRM216
    LRM216 Member Posts: 2,115
    edited February 2011

    No, I have not, nor do I personally know of anyone going through this travesty you have been put through.  I am so sorry you are suffering in this way, this should not have ever happened.  I don't know what to even suggest to you other than perhaps a third go around.  All I know is that I would not be resting my head comfortably on my pillow at night if I had to go through this, as I am sure you are not either.  I wish you all the best and please keep us posted.

    I hope someone comes along shortly that can point you in the right direction and offer some sort of solace to you.  God bless.

    Linda

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  • lrr4993
    lrr4993 Member Posts: 937
    edited February 2011

    Did they put in a marker during your biopsy?  I think that is standard procedure.  If so, and assuming they removed the wrong lump, the marker will still be there and should be visible on mammo.  It seems to me that you need to be asking for confirmation that the biopsied area is gone, rather than the path on the fibroadenoma. 

    What a mess. I hope you get it worked out soon. 

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  • girlsmom3
    girlsmom3 Member Posts: 28
    edited February 2011

    No, there was no marker. the morning of the OP i had a wire placed by way of US and already then they were fishing around trying to find it. I am wondering if it was a false positive but i am 100%ER and 75% PR. I have read that even benign tissue in perimenopause can be very high during times of the month.

    I am so confused. I have my appointment in a couple of hours and pray for an answer then or I will get my films and move on. Thank God an old friend of mine is head of radiology at MIT so I can forward them.

    It is all so fishy and wrong.

    I am 100% questioning what is with the biopsied area....confirmation of fibro only solidified my feeling that they missed it. I berlive that is why they never told me that was in the report.

    Now the other BIG question is to take the tamox or not....and based on what grounds. 

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  • motherofpatient
    motherofpatient Member Posts: 240
    edited February 2011

    My daughter had a negative biopsy on a second spot that, when the surgeon removed it anyway - it was cancer, too. In your case if both areas were removed and tested, you would have a better picture of what is going on.

    If they are telling you that you need tamox, then you must have a hormone positive cancer. I don't think tamox is a routine preventive drug.

    Can you get another doctor to take your case? Sounds like you need to go outside the system you are in. Can you get copies of the test results and all your medical history? It is always a good idea to get your own copies.

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited February 2011

    contact a major cancer, any center of your choice.  Contact them and ask them where to send the slides/reports/etc for independant review.  Go back to the original facility and get a copy of EVERYTHING, not just the summaries. On the release form they will have you fill out, where it asks what info you want list:  pre-anesthesia consultation information, anesthesia records including sponge, needle and equipment counts, all laboratory and pathology documents, requisitions and results including reference laboratory and pathology requistions and results, post anesthesia care unit records, surgeon's operative report, all billing documents and records, all nursing notes and records, all imaging requisitions, reports and images, all consents signed, the 'face sheet' or demographic data form, and "any and all other documentation, forms, notes, and records not specifically requested and listed that exist."  The cancer center you choose will want to see much of this and you should keep a record of all of it for yourself.  Also contact your insurance company and ask them for help getting a true second opinion. The second opinion center will also help you with getting your pathology slides and samples sent to them for review.  You cannot be denied a second opinion from the center or doctor of your choice. 

    FYI--where the form asks why you are requesting the info, simply write "for my personal files."  If you  mention the possibility of a malpractice suit at this point the facility may start dragging their feed dlivering ALL the info, hoping to take longer than the 2 year statue of limitations for filing a malpractice suit.  

    Also, contact your state's meidcal licensing board and file a complaint against the surgeon.  Don't tell the surgeon you are doing that, just do it.  

    You have a right to all the information, and correct information before you make any treatment decisions.  Stick to your guns and DEMAND that the docs and facilities who are WORKING FOR YOU respect your rights.  

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  • girlsmom3
    girlsmom3 Member Posts: 28
    edited February 2011

    Thank you for the strong and correct advice. I am now at the "best" private clinic in Zurich. all my forms were released to my hands when i told them i was going for the 2nd opinion...that is how and when i read the fibroadenoma finding on iop result.

    I have been fighting this for over 2 months. The day i was supposed to start rads was the day i cancelled it and went for the 2nd.

    I have read very deep on tubular cancer aand know there is a very difficult line diagnosing it from  tubular fibrosis...but question the HR+ I will go in today with ackup knowledge and a truck full of questions and am prepared to walk out with my files again released to my hands.

    I just CAN'T be a medical mystery....not in this day and age.

    I worry about so many woman that don't do research on their bodies and just take everything in that a dr says as correct.

    i will get to the bottom of this....a promise to all the ladies out there that have been or on a runaround. 

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  • girlsmom3
    girlsmom3 Member Posts: 28
    edited February 2011

    o.k.....had a less than warm reception and went through a ton of logical arguements about the hole in the diagnoses. It has been seen today that no, in the lumpectomy, the punction of the prior biopsy was not seen...hence wrong spot. My new Dr then said that she will try and help me fins an answer. i was taken right away for a core needle biopsy after she, needle in the haystack, search for the remains via US. She found it after about 20 min. 3 samples were taken as well as a second sample from another spot in my breast. she said she has no idea if anything will come out of this or if she is correct in her attempt but wants to help me find an answer.

    interestingly enough, she had paper work from the orig. hospital that i did n't bring...again hence my feeling that there was a cover up. I cried my eyes out as i left thanking her for helping me. she said i never, ever have to go back to the hospital and that she will guide me through all my options once the biopsy (sent external to the university of zurich) comes back by next tuesday. so...she is trying to put the pieces together for me and simply couldn't deny that there is a BIG gap of info missing. she also saw the mark from under the breast for the orig biopsy.....you don't go to the 2 o'clock position from down here.....so once again, i have confirmation of my sanity and doubt,.....where it will lead only God knows.

    wrapped up with ponstan and  a few glasses of wine letting the biopsy pain pass once again.

    xoxoxo 

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  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited February 2011

    Finally!  I'm glad you will be getting the answers you need. 

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  • girlsmom3
    girlsmom3 Member Posts: 28
    edited February 2011

    Thank you Ms Native :)

    Tuesday can't come quick enough. i just need one single cell found to solve this all so i can continue correctly :))))) 

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  • girlsmom3
    girlsmom3 Member Posts: 28
    edited February 2011

    Thank you Linda....your compassion is worth GOLD!!!!!!!!! xoxo

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  • dsengplute
    dsengplute Member Posts: 19
    edited February 2011

    Hi GirlsMom3.  I'm so sorry you've had this additional layer of stress to deal with but am glad to hear you are in good hands now. 

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