Given Incorrect DX information Twice

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teaka123
teaka123 Member Posts: 95
edited August 2019 in Waiting for Test Results

A bit of a vent here.

First, I received a call from my BS's office telling me my final mastectomy pathology report came back and was clear on everything - margins, lymph node, no other concerns, etc. This call has me thrilled and sharing the good news with family and friends. An hour later the BS himself calls to tell me that the person who called from his office may have left something out. She did and it was/is a big deal. There was a .7 spot of IDC within the DCIS that was removed and it is HER2 positive. I don't know how the caller missed telling me that, but she did. I am referred to the MO.

Friday, I meet with the MO who tells me she is getting clarification from the pathologist because there is a typo in my report. The report refers to the IDC as being .7mm , but also refers to it as 1B. From what she told me and I understand if it is anything that is .7 mm would be 1A not 1B. So either the pathologist entered mm when it should have been cm or they entered a B when it should have been an A. Big difference in treatment as one would be only observation needed w/ no follow-up treatment. But, the other DX would be 12 weeks of chemo followed by a year of Herceptin.

My appointment proceeded under the assumption that the mm size was incorrect and should have been entered as cm. Waiting for confirmation form the pathologist.

I very much like my BS, but I am frustrated and have lost a bit of confidence with my medical group.

Well, I glad I got that off my chest.


Comments

  • Scrafgal
    Scrafgal Member Posts: 631
    edited June 2019

    This is so unsettling...and unacceptable. Honestly, I think that you should consider getting a second opinion at a different cancer center. The issues related to treatment are just too important for you to not be sure. An accurate diagnosis is most important. Any great breast surgeon would understand your rationale for getting a 2nd opinion, given what happened.



  • teaka123
    teaka123 Member Posts: 95
    edited June 2019

    Scrafgal Thank you. And I think you are right. I have done very well through things until now and now I am stressed. I cope best when I know the facts and can deal with it.

  • Spoonie77
    Spoonie77 Member Posts: 925
    edited June 2019

    I completely agree with Scrafgal. Look into a 2nd opinion. I honestly do not know how I would react, most likely very troubled and worried about the kind of care I would get from this team if this is how things start off. Please keep us posted. No matter what, remember you're not alone. I'm so sorry that on top of being here in the first place, this extra confusion, anxiety, and stress has put onto your plate. Hang in there as best you can and try to stay distracted when possible...easier said than done. Hugs.

  • Scrafgal
    Scrafgal Member Posts: 631
    edited June 2019

    Good. I am glad that my comment didn't offend you. I was treated at MD Anderson, and I now volunteer at the center. Since becoming a patient there, I have heard so many other patients tell me that they wish they had come to MDA first...or at least somewhere for a second opinion. About 20-25% of diagnoses are changed by MDA, upon rendering a 2nd opinion. So, that is why I know that 2nd opinions matter...they can save lives! I am not promoting MDA but rather the importance of 2nd opinions. Sometimes your best shot at killing cancer is your first shot. So, I encourage you to take your best shot and that starts with confidence about the diagnosis.

    Keep us posted.

  • teaka123
    teaka123 Member Posts: 95
    edited July 2019

    Spoonie77 and Scrafgal, Thank you both for your responses and reassurances. I will call and set up an appointment as anther cancer care center. I will let you know how things go. And, Scrafgal I am not the least bit offended. I asked for advice and you gave it.

  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited July 2019

    It might be pt1b which means it is between .5 and 1 cm.

    My report said mine was pt1b, but mine was 1.1 cm so it should have been pt1c. My stage was 1A.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2019

    I am curious who you would be seeking a second opinion from? I am not discouraging you, just wondering. The error seems to be on the part of the pathologist, or whatever person in the pathology department typed the report, and the pathologist who signed off on it. To a certain extent it is difficult to get a second opinion from a pathologist on the tumor sample itself, you generally only get an opinion off their already prepared slides.There is no point in a second opinion from a breast surgeon because you have already had surgery - correct? Your BS is pretty much out of the picture. The person in the BS office who gave you info over the phone made an egregious error, but IMHO you should receive all pathology info in a face to face appt with the doctor - that info should not be delivered by someone in the office. Another medical oncologist would need to do the same thing the one you already have is doing - checking in with the pathologist to clarify the invasive component size. Once the tumor size has been confirmed, the road forward is more clear. I also wondered the same thing as farmerlucy - where is your staging info coming from? The report? If so, the tumor size is given in a measurement that many confuse with stage. The TNM staging system uses measurements of size, which are just a part of the total number of things considered for stage - those are tumor size, location, and nodal status. The TNM system incorporates letters and numbers together for sizing. This is what it looks like for a tumor less than 2cm (20mm):

    T1 tumor - 2cm or less

    T1mi - tumor is .1cm (1mm) or less
    T1a - tumor is greater than .1cm (1mm), but not more than .5cm (5mm)
    T1b - tumor is greater than .5cm (5mm), but not more than 1cm (10mm)
    T1c - tumor is greater than 1cm (10mm), but not more than 2cm (20mm)

    Stage 1A, which incorporates tumor size, location, and nodal status is for a tumor in the breast, that is less than 2cm (20mm), and nodes that are clear. So your tumor size can be T1b and your stage would be 1A, if this applies to your stats.


  • Scrafgal
    Scrafgal Member Posts: 631
    edited July 2019

    The breast surgeon should be so appalled with the pathology unit that she should approve of the tumor specimen being sent to and reviewed by another center. If not, then the oncologist should also be invested in getting to the bottom of this. If those two cannot make it happen, then I would (a) contact the patient advocate that many centers assign to get their assistance with getting the medical team to help navigate the situation with the medical team and/or (b) contact the hospital board directly about the errors in reporting.

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2019

    teaka, wow, that's a significant error.

    For those who are explaining that the tumor might 0.7cm (or 7mm) and therefore be a T1b tumor, with the Stage being IA, I think that's already clear from teaka's post. The 1B she referred to was referenced in the pathology report with regard to tumor size. Nowhere in her post did she mention Staging.

    The confusion within the pathology report is whether the tumor is 0.7mm or 0.7cm.

    Option 1: 0.7mm tumor, which is a T1mic tumor. Stage IA.

    Option 2: 0.7cm tumor, which is a T1b tumor. Stage IA.

    teaka's pathology report indicted that she has a 0.7mm tumor and stated that the tumor is 1b. That's one from Option 1 and one from Option 2. Impossible, hence the error.

    A 0.7mm tumor, even being HER2+, would not warrant no chemo or Herceptin.

    A 0.7cm tumor pretty much always comes with a recommendation for chemo and Herceptin.

    This isn't a misunderstanding of Staging or tumor size within Staging. There is an error on the pathology report that had a huge impact on the treatment plan.

    teaka, I hope you get this figured out quickly. I hope you do have a 0.7mm tumor. And I urge you to make a formal complaint so that the Radiology department is called out for this. Every pathology report should be written by one person and signed off by another. So two people let this critical error slip by. Unacceptable.


  • SpecialK
    SpecialK Member Posts: 16,486
    edited July 2019

    beesie - totally agree that the error is in recording of the measurement, that the pathologist and staff made serious mistakes, and that further treatment - or whether there is need for it - is dependent on an accurate measurement and report. It was unclear to me in the OP's post whether the 1A and 1B were referring to the size or the stage - that was why I included that in my post. I apologize if I added unnecessary and/or confusing info.

  • teaka123
    teaka123 Member Posts: 95
    edited July 2019

    Thank you all. It is helpful to vent and think things through via these posts.

    Oncologist is to notify me tomorrow which one is correct .7 mm or .7cm. Part of me wishes she would have postponed my appointment until she had heard back from the pathologist. She proceeded with our visit on the assumption that the pathologist would be more likely to mistype the mm / cm than to miss type 1A / 1B. So our conversation focused on 12 weeks chemo and Herceptin. If it turns out to be .7mm my treatment will be observation only and I will be one happy lady.

    I think I will start with a conversation with the breast surgeon (who I like very much) and let him know how difficult this has been and that I need to have complete confidence in what I am told. This is detailed work. My insurance company and the medical group both send out surveys for patients to complete and I can bring things to those who need to know that way. This is a very respected medical group so I'm certain they(?) will be concerned. My breast surgeon (still can't believe I am saying my breast surgeon, my oncologist...) would probably appreciate my speaking with him first.

    The devil's in the details.

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2019

    teaka, what did you find out?


  • Spoonie77
    Spoonie77 Member Posts: 925
    edited July 2019

    Yes, I'm with Beesie...thinking of you.

  • teaka123
    teaka123 Member Posts: 95
    edited July 2019

    Thank you checking in. My pathology report was reviewed and it is .7 cm. Oncologist called me and we had a good, but brief conversation. I will get a chance to speak with my BS next Tuesday. I held out a little bit of hope it was .7 mm. Since the size is .7 cm and is HER2 positive I will start chemo soon. My port placement is scheduled and my appointments for reconstruction have been canceled. I have not told my hair yet.

    My cat has decided to distract me from any chemo stress I might have by going missing - he has been gone for 24 hrs. It's working. I'm thinking I won't let my husband out tonight so he doesn't take off too. I'm kidding, husband will come for dinner when I call him. :) I am feeling a bit blue tonight with it all.



  • Spoonie77
    Spoonie77 Member Posts: 925
    edited July 2019

    I'm sorry to hear the chemo news and the cancelled recon, Teaka. :( You're not alone. Hopefully others will chime in soon with ways to fight to keep your hair and to find your cat! I remember my sister telling me that there is a test that exists now that can tell you if you will lose your hair during chemo or not. She said her friend had the test and unfortunately she was one that would and did lose her hair. I'm sorry I don't know the specifics and maybe it's incorrect. Word of mouth sometimes can be and I didn't have experience with Chemo. So sorry this is the path ahead. Hopefully you will win the war on the hair front. Hang in there. Easier said than done....but I am thinking of you. Feel sad. Feel mad. Feel whatever you need to feel. This is a hard thing and a scary thing to face. Give yourself permission to be blue and to work through it bit by bit. Sending you hugs.

  • Scrafgal
    Scrafgal Member Posts: 631
    edited July 2019

    teaka,

    I've been traveling over the past few days and just caught up with your situation. I'm sorry to hear about the upcoming chemo but glad that you've gotten the information clarified to get the best treatment. I don't know whether you've been here long enough to see that you will usually find a group that is starting chemo during the same month. It is nice to join those threads where you can share your experience with others who are going through it at the same time. I am wishing the very best for you, during your treatment. It's a long road but a well-trodden path. So reach out to us. As Spoonie said, you are not alone!

  • Beesie
    Beesie Member Posts: 12,240
    edited July 2019

    teaka, sorry to hear the news, but as you (and your oncologist) suspected, 0.7cm did seem more likely given the 1B reference in the pathology report.

    Good luck with chemo. Hope it goes as well as possible for you.

    Has the cat come home?

  • teaka123
    teaka123 Member Posts: 95
    edited July 2019

    Thank you all for your responses and apologies for my slow response. I had my port put in and had a chance to speak with my Breast Surgeon. He did both my mastectomy and port placement. I told him that I know both the clinic group and my health insurance would be sending satisfaction surveys to me and I had a question on how he would like me to address my concern. First I mentioned his assistant giving me the wrong information and how I had specifically told the person on the phone I wanted to wait for my Dr. I did not want to speak with his assistant. I really got the impression he did not know that. I then mentioned that to have the pathologist make a significant typo on my final report was not acceptable either - it is after all detailed work. I know mistakes happen, but to have it happen twice to me on the same case was really hard emotionally, etc. He agreed, thanked me and assured me this was going to be addressed. BTW I have switched my oncologist to one that I like very much. The clinic has wonderful nurses and is only a 15 mind drive from home. Thank you for your concern and support.

  • teaka123
    teaka123 Member Posts: 95
    edited July 2019

    Bessie, YES, that darn cat came home. He slept and slept and did not want to eat. Took him to the vet and they did blood and urine tests. Test did not come up with anything, but they could tell he was not feeling well. I sure need him around right now! Thank you for asking.

  • teaka123
    teaka123 Member Posts: 95
    edited July 2019

    Spoonie, Bessie and Scrafgal, My first chemo session was yesterday and went very well. I will feel perfectly comfortable going back next Wednesday. Nicest nurses. Thank you!


  • Scrafgal
    Scrafgal Member Posts: 631
    edited July 2019

    teaka123

    I am really glad that things are working more smoothly for you...and that you first chemo session went well. I also am happy that you let your surgeon know about the errors that were made. He needed to know and sounds like you made your voice heard!👍👍

    Keep us posted on how you are doing during treatment. Wishing the very best for you!

  • teaka123
    teaka123 Member Posts: 95
    edited August 2019

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