Possible wrong diagnosis

peaceofmind

Recently I learned that my diagnosis of IDC may not be correct.  I was told by a very good souce that he believes that my core biopsy was accidentally switched with someone else's.  There are inconsistencies in my medical records which I didn't think to get until after I heard this news.  Too trusting!! Also, I've already had a surgical biopsy and a sentinel node biopsy.  These two procedures were done separately, a week apart.  I was not told the grade (3) of my core biopsy even though it was in my records before my other 2 biopsies.  I figured out the stage of my cancer (1) and lots of other things on my own before going to a followup visit with the surgeon.  He really didn't want to answer my questions and sent me to the oncologist.  Right now I really don't know what to do.  If I need chemo, etc. I'm willing to do it, but I don't want to if I don't really need it.  Does anyone know if you can do DNA testing to determine if the biopsies are all mine? If so where?  I am planning to have my slides and tissues reviewed somewhere else in hopes that will ease my mine and so I can proceed with the correct treatment.  I will not go back to the same clinic for treatment.  Thanks and God bless you.

flash

I'm not sure what can be done to verify that the samples are yours.  I hope it all works out well for you.  It's not an easy rollercoaster and you certainly don't need the extra curves. 

good luck

AnnNYC

Have you gotten reports of the surgical biopsy yet?  I'm assuming you mean an excisional biopsy, where the entire lump was taken out.  The path reports on an entire excised lump ought to supersede the core biopsy, I would think.  Also, the measurement details and descriptive details in the path report from the surgical biopsy should give you a lot more to go on in terms of whether it is in fact your biopsy.

I'm curious who the "very good source" is.  Someone working for the surgeon, or the pathologist?  If such a thing really happened (a mistaken switch), or even if procedures were so lax that mistakes COULD happen, the person observing this really ought to report it to a higher-up (if it's a hospital or clinic or group practice) or to a Board like the State Medical Examiner's Board or Licensing Board, and to the insurance company who paid for it -- not just to you.  You should not have to be playing detective.

Hugs, and good luck,

Ann

peaceofmind

Yes, I received the pathology report upon written request.  The core biopsy showed my lump to be 1 cm and the excisional biopsy was 1.4 cm. 

Another woman got a core biopsy on the same day as I did.  The doctor doing the biopsy was certain hers was cancer and he was almost sure mine was negative.  He argued to have hers rebiopsied and tried to get mine redone, but they refused.  They did send what was thought to be mine (same biopsy) to another facility for a second opinion and being the same got the same report and they did the ER,PR and HER2 testing on it.  The ER,PR and HER2 was not done on the excisional biopsy.  I will have this done when I go to another doctor.

I saw my core biopsy when it was removed and it was not white.  My biopsy was difficult because it was deep and very hard to find.  It took several people pressing on me and using ultra sound to locate it.  The ultra sound machine was old, not digital.  I had some bleeding and this sent up a red flag because it is associated with cancer . I also had a MRI done the next day, but because of how it looked on the MRI they said I would have a biopsy of the lump and a sentinel node done at the same time .  Then I  got a call and was told only the excisional would be done.

I was told by a doctor later that because of the pressure, brusing, etc. during the core biopsy my lump may have been inflamed which would have caused my MRI report to be not normal.  Also when the wire was put through the lump for the excisional there was no resistance.

On the day I had my excisional I received a general anesthesia and later found out this is usually done under a local anesthesia.  Also found out a pathologist was in the surgery room. My doctor had informed me that the lump would be removed with a surrounding margin of normal-appearing tissue.  Before the surgery I had asked him if it was possible to have the lump and other tissue looked at under a microscope to determine if more tissue needed to be removed so I would not have to have any more surgery.  He said they did not have the capability to do that.  My daughter had a DFSP tumor removed from her leg and the surgeon who did it cut out a section and then it was looked at under a microscope to determine if more needed to be removed. 

The pathologist in my surgery room had the surgeon remove more tissue than what had originially  been planned.  The surgeon never told me the pathologist was in the room.  He just told me in a follow up visit that he thought the margins were clear and I would not have to have any more tissue removed.  He also told me at this time probably no more 2 or 3 nodes would have to be removed.  Again a pathologist was in the surgery room without my knowledge and I received general anesthesia again.  Only one node was removed and it was negative.

Thanks for taking the time to respond.  God bless you and I hope everything is going well for you and your family. 

peaceofmind

Yes, I received the pathology report upon written request. The core biopsy showed my lump to be 1 cm and the excisional biopsy was 1.4 cm.



Another woman got a core biopsy on the same day as I did. The doctor doing the biopsy was certain hers was cancer and he was almost sure mine was negative. He argued to have hers rebiopsied and tried to get mine redone, but they refused. They did send what was thought to be mine (same biopsy) to another facility for a second opinion and being the same got the same report and they did the ER,PR and HER2 testing on it. The ER,PR and HER2 was not done on the excisional biopsy. I will have this done when I go to another doctor.



I saw my core biopsy when it was removed and it was not white. My biopsy was difficult because it was deep and very hard to find. It took several people pressing on me and using ultra sound to locate it. The ultra sound machine was old, not digital. I had some bleeding and this sent up a red flag because it is associated with cancer . I also had a MRI done the next day, but because of how it looked on the MRI they said I would have a biopsy of the lump and a sentinel node done at the same time . Then I got a call and was told only the excisional would be done.



I was told by a doctor later that because of the pressure, brusing, etc. during the core biopsy my lump may have been inflamed which would have caused my MRI report to be not normal. Also when the wire was put through the lump for the excisional there was no resistance.



On the day I had my excisional I received a general anesthesia and later found out this is usually done under a local anesthesia. Also found out a pathologist was in the surgery room. My doctor had informed me that the lump would be removed with a surrounding margin of normal-appearing tissue. Before the surgery I had asked him if it was possible to have the lump and other tissue looked at under a microscope to determine if more tissue needed to be removed so I would not have to have any more surgery. He said they did not have the capability to do that. My daughter had a DFSP tumor removed from her leg and the surgeon who did it cut out a section and then it was looked at under a microscope to determine if more needed to be removed.



The pathologist in my surgery room had the surgeon remove more tissue than what had originially been planned. The surgeon never told me the pathologist was in the room. He just told me in a follow up visit that he thought the margins were clear and I would not have to have any more tissue removed. He also told me at this time probably no more 2 or 3 nodes would have to be removed. Again a pathologist was in the surgery room without my knowledge and I received general anesthesia again. Only one node was removed and it was negative.



Thanks for taking the time to respond. God bless you and I hope everything is going well for you and your family.



[Edit] [Delete]

pj12

Dear Peaceofmind,

If I am correctly reading between the lines what you are worried about it that your initial biopsy was switched with another patient's sample.  And that that patient was positive for breast cancer and you were not.. but because of the mistake you are now the one with than cancer DX.  Have I got it right?  And what about the other patient who may have BC and does not know it!

I would not attach much significance to the fact that your lumpectomy was done under full anesthesia.  I think that is common... mine was, in fact.   It does seem unusual that the pathologist was "in" the operating room.   Usually a specimen is sent "down" to pathology while the patient remains sedated and a report is send back immediately if the margins are clear or not. Sometimes a facility does not have that capability and a delayed path report is issued; hence the need for re-excision.  In my case the clips from my ultrasound mammotome biopsy were in the wrong place, as was the locator wire placed under mammogram immediately prior to lumpectomy so the first specimen showed no trace of a tumor.  The surgeon waited for the report to come back and therefore was able to go back and take a deeper sample and this specimen showed the tumor with clean margins.  No going back a second time, thank goodness. 

So I am not clear about this:  Did the pathology done at the time of the lumpectomy show a cancerous tumor consistent with your biopsy and demonstrating clean margins?  That should belie your doubts.

If I was still confused and not convinced I would ask my doctor to arrange a conference with you, the surgeon and the pathologist.  Perhaps they are just not appreciating the doubts you are experiencing and a sit down talk could reassure you. (Be fully clothed at this meeting - we are always at such a disadvantage if we are half naked!)

 If you feel like you are still not getting straight answers you might call the Risk Management Office of your hospital.  This is the department that deals with malpractice issues and tries to prevent future law suits. If there are genuine concerns that biopsy samples were mislabeled the hospital should be financially responsible for the cost of any tests to rule in or out an error.   Whether or not your insurance will pay should not be an issue and certainly not their responsibility.

Finally, if you listen with an open mind and the doctors are unable to assuage  your doubts, contact an attorney or a patient advocacy group and ask for their help.  Breast cancer treatment is hard enough to go through when you know you are doing the right thing.   Mistakes do happen, we are all human and you need reassurance.

Good luck.  Please let us know what happens.

Pam 

AnnNYC

Hi PeaceOfMind -- I just wanted to say that my excisional biopsy was done under general anesthesia, not local -- and I know for a fact that my breast surgeon (an excellent surgeon specializing in breast cancer, at an NCI-designated cancer center) almost never does an excisional biopsy under local -- I know that once she did it for another doctor who had a heart condition and refused general anesthesia.

So I agree with Pam (pj12345) that  you shouldn't be troubled by the fact that your excisional biopsy/lumpectomy was done under general.  I also agree with all of Pam's suggestions about how to proceed.

Wishing you the best,

Ann

shadow2356

I recently heard a story from a friend of mine who works in a breast center. She said a woman, in her 30s ,was diagnosed with IDC and told to have a mastectomy. She insisted on a lumpectomy and that is what they did. Her final pathology came back, no cancer. They had mistakenly switched her biopsy with someone else's and she never had cancer.

 This worries me a lot since my first biopsy, fine needle aspiration, came back negative. My core was positive. Does this happen a lot?

 Maybe yours was wrong. How would you be able to check? If you find out, let me know since I am scheduled for double mastectomy.

 Good luck to you.

dlb823

peaceofmind ~  I see your original post was a week ago, and I'm just wondering if you have any update for us.  My first impression in reading your account of what happened is that you seem to have a lot of nebulous information.  For example, I know for a fact that a pathologist was in the OR when I had my original lumpectomy because he later told me he had hand carried my specimen from the OR to the lab.  So that may not be so unusual in some facilities.  I also don't understand why you're under the impression a wire should meet with resistance, as it normally doesn't go through the lesion but around it, to mark the area. 

But my overall impression is that your pathology results absolutely need to be determined to be yours and re-read.  I'm not sure how you go about doing the first (determining the tissue is yours), but if you haven't moved forward yet, I would definitely get a complete set of "your" slides and take them ASAP to another facility.  If you're anywhere near an NCI-designated facility, you might want to consider going there.  Errors can happen anywhere, but I would trust one of the cancer centers on a list I'm going to give you to pinpoint any problems with your diagnosis and/or treatment to date, and get you on the right path:

http://cancercenters.cancer.gov/cancer_centers/map-cancer-centers.html

If by some chance you're not within a reasonable drive of one of them, I would call the closest one and ask who they could refer you to someone in your area, as chances are the best local docs consult with them re. difficult cases on an ongoing basis.

Hope this helps... so sorry this has happened to you... and please keep us posted ~   Deanna

PaminFL

y

lbrewer

It is your life, your breast.  YOU are the team lead.  You have every right, even a responsibilty to question your doctors and make sure you are getting the care you deserve.  Any competant doctor welcomes informed patients.  IF your doctor makes you feel awkward by asking questions, FIND A NEW DOCTOR.  No one should undertake such drastic surgery and treatment like chemo or radiation without a second opinion. 

lbrewer

It is your life, your breast.  YOU are the team lead.  You have every right, even a responsibilty to question your doctors and make sure you are getting the care you deserve.  Any competant doctor welcomes informed patients.  IF your doctor makes you feel awkward by asking questions, FIND A NEW DOCTOR.  No one should undertake such drastic surgery and treatment like chemo or radiation without a second opinion.  And no doctor should see that as a insult.

jmcoop

peace of mind - definitely have the slides and, if possible, a block retested.  I had an excisional biopsy for a .8cm tumor and everyone was shocked when it came back IDC.  The path report showed I was a triple negative but none of the numbers (ER, PR, Her 2, Ki-67 made sense) for my diagnosis.  My Ki-67 score on the path report was 0%!  Oncotype of the tumor showed I was ER and PR+ but with a recurrence score of 20.  I went to a new onc, who is re-running a block all over again because the recurrence score doesn't even make sense to him.  Sometimes mistakes are made.  Unfortunately, no one seems to feel that I was misdiagnosed with cancer but my new onc doesn't like any inconsistency with the numbers.  Please let me know what the new path testing showed.

Vicky123

I am so glad to find someone else who had a problem with their pathology.  Two years ago, I was diagnosed with Invasive Lobular Cancer -8.5 cm.  I had a mastectomy, because it was so large.  To make a very long story short--I did NOT have Invasive Lobular Cancer.  When they biopsied my breast after the mastectomy, they found NO cancer cells! 

After reviewing my medical records, I discovered that my breast MRI, which was done AFTER the biopsy, but BEFORE my mastectomy, showed NO invasive cancer cells!  I was never told that the breast MRI showed no cancer cells.  This information was never given to me; although I had the report, I did not understand the medical language that was used in the report, so I trusted my breast surgeon that those reports were read prior to my mastectomy (of course, I was told now that the breast MRI is unreliable, so they go by the pathology.)  I'm in the process if getting my pathology slides, so I can have them read by another lab, and also have them tested for DNA, since I did not have any invasive cancer in my breast.  Of course, now my breast is gone, so too late!  I met with an oncologist, and he told me there is a chance that the slides could have been read wrong.  I have been researching this subject on the Internet, and some professionals, even though there are no real studies, believe that the slides are read incorrectly as high as 18% of the time - that blew me away!  I never knew that or suspected that a mistake could be made in pathology.  Plus my doctor made a mistake by not reading the MRI report - at that time she should have ordered another mammogram to compare the two mammograms, since the MRI showed no cancer, as well as the blood work and other tests that were done.  So now I have lost my sentinel lymph nodes, my breast, and suffered with the reconstruction -- almost died on the table.  It took them 3 hours to revive me (a lung collapsed and it too 3 hours to get my lung working again.).  It has been an absolute nightmare for me - I can only say, my counselor has kept me going, and kept me from having a complete mental and emotional meltdown.  What really upsets me, is that I called the radiologist who read me MRI, because I thought that is what it said but wasn't sure, and I called twice and he never returned my phone calls, and I gave up and just said, "oh well, my surgeon knows what she is doing".  Had I talked to him, I would have made sure my slides were read by someone else. 

I guess my message is that mistakes can be made at anytime in the process, so be extremely careful and smart about the people who are suppose to be helping you, not hurting you. Our cancer center is ranked in the top 50 cancer centers in the US - so don't go on reputation, it means nothing.