High grade DCIS with BMX and Path report questions

Options
Mckaylaleigh
Mckaylaleigh Member Posts: 90
edited April 2016 in Surgery - Before, During, and After

For those of you that had high grade (or maybe any grade) DCIS and a BMX (or even ULX), was your pathology sent off for a second testing or was only the "quick look" while in surgery done?

· Share on FacebookShare on Twitter

Comments

  • LAstar
    LAstar Member Posts: 1,574
    edited April 2016

    I wasn't aware of a quick-look. I had to wait about 2 days for the pathology report. Did you get an immediate assessment?

    · Share on FacebookShare on Twitter
  • nightowlhoot
    nightowlhoot Member Posts: 45
    edited April 2016

    Hi,

    In my case, the entire breast was sent to path. The full report took a bit more than a week.

    In surgery they looked at the sentinel nodes and determined no invasion, but the final path included a more thorough review where they specifically looked at the known lesions (where the markers were placed post-biospies. I had two, so two markers). But they slice up the entire breast tissue and look at it section by section. At least that is what was done at the academic hospital I went to for my uni mx.

    I am meeting with the pathologist to review my slides and ask additional questions. I requested the meeting because while they say not to worry, there was a line in my final path about how some desmoplasia in some areas makes it challenging to exclude invasion in those areas, but no invasion was found. I want to understand that more. You can check your insurance to see if they will cover a meeting with your pathologist or at least ask to speak to them on the phone.

    Good luck.

    Night Owl

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2016

    The only pathology done during surgery, to my knowledge, is the sentinel node testing - and even that is somewhat cursory, looking for gross disease. There are some surgery locations that have the capability to look at margins during surgery and this allows for potential avoidance of re-excision, but I think this is used more frequently for lumpectomy. The entire removed breast tissue and any removed lymph nodes are then sent to the lab where a thorough exam and slide prep are done, and this information is what is contained on your path report. You should see info on the labeling of containers received, weight of tissue, inking info, time received, etc. on the report.

    · Share on FacebookShare on Twitter
  • Mckaylaleigh
    Mckaylaleigh Member Posts: 90
    edited April 2016

    This is my concern. I had surgery on base, was told it would be sent off to a lab.  The day after my surgery my BS told me they were sent off.  After three weeks and no results, I asked my BS. She told me they weren't sent off and they often aren't with DCIS which was NOT what she originally told me, TWICE.  I looked at my surgery report and it said they were to be sent of within 48 hours.  My concern is that the "quick look" they did while I was in surgery said "no DCIS seen and no biopsy clip seen."  Well, I had 7+cm of DCIS and obviously the biopsy clip was there.  My BS (who is a general surgeon) assured me that all is well, that my breasts are gone and I shouldn't worry.  How can I not worry if all they did was a quick look and didn't even see what we KNOW was there? How can they say without certaintly that it wasn't invasive if they didn't even see the DCIS that was there? I don't know if this was an error on their part or not but I have been pretty upset about it.

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2016

    mckaylaleigh - um...something is not right there. Post-operative pathology should have been done for the very reasons you state. I suggest that you aggressively pursue this - not just for the health info but because someone dropped the ball. Involve your DH's chain of command if you have to (I am serious about that), but get some answers.

    · Share on FacebookShare on Twitter
  • nightowlhoot
    nightowlhoot Member Posts: 45
    edited April 2016

    I totally agree, advocate for yourself. The reason you want it is because the entire breast will give more information. Was there any micro invasion? Is there any info that will impact your treatment moving forward? What’s the hormone status of the tissue, what are the margins near the chest wall? Sure there’s the known area, but the imaging doesn’t pick up everything and biopsies only test a very small amount of tissue. Like if you pinched off a piece of raisin nut bread you might get a tiny bit of raisin. Also, imagine slicing bread with nuts or raisins. Each slice and cross section won’t necessarily have a nut or raisin bit/piece, which is why you want them to study the whole breast. That’s how my surgeon explained it so we understood. . .

    I hope you find answers you need.

    Night Owl

    · Share on FacebookShare on Twitter
  • Mckaylaleigh
    Mckaylaleigh Member Posts: 90
    edited April 2016

    Thanks ladies.  When I questioned my dr she told me that she can see my reasoning but I have nothing to worry about. I am not sure what approach to take at this point, part of me just wants to let it go but I find myself on the verge of tears daily and having a hard time with it emotionally. I read of other women going to BC specialists and centers and I was forced to go on base where I have questioned things the whole time. My results are also really bad, I can't even bare to look in the mirror. I wanted to go off base and I tried, I should have fought harder and went with my instincts but everyone who had surgery on base (not breasts) always said they had good experiences.  I did feel kind of bullied by my BS when I questioned why my pathology wasn't sent off.  They have always acted like this all was no big deal and when I was authorized to get my 2nd opinion off base with a great BS, she took things much more seriously.   I hate that I have to deal with all this and I believe I may go to the patient advocate!!

    · Share on FacebookShare on Twitter
  • LisaAlissa
    LisaAlissa Member Posts: 1,092
    edited April 2016

    Mckaylaleigh,

    I am so sorry to hear that you're not being given the attention your diagnosis deserves. I have noticed that Walter Reed National MIlitary Medical Center has a Breast Care and Research Center of Excellence. All Active Duty, Dependents, Retirees, and their family members are eligible for care there.

    Maybe you could arrange for a second opinion there. Or even a revision/reconstruction surgery. Undoubtedly they will want to see your pathology. If Walter Reed is asking for it, you might get more attention from your base hospital. You might also be able to arrange for help with transportation.

    But whatever happens, you do want to chase the "chain of custody" of your breast tissue. Get to an administrator, with the surgery report in hand. Point out that the tissue was to be sent to pathology within 48 hours. So where is the check-in report from the pathology department?

    Please let us know how you are doing.

    LisaAlissa

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2016

    mckaylaleigh - I have used the Patient Advocate once when I felt that I had received substandard treatment, and she was very effective and dealt with the situation aggressively and professionally - it is a good place to start. I want you to pursue what happened to your surgical pathology specimens not only for you, but for the next patient too. A full exam of your tissue removed is important and should be done - this is normal protocol. FWIW I have been treated at both Walter Reed in its old location and at the Breast Center at Bethesda National Naval Med Ctr., they have now merged, and both are located at the Nat'l Naval Med Ctr campus across from NIH. They do indeed have a dedicated breast facility within, and their care was excellent for the 9 years I lived in the D.C. area. There are a number of free medical transport services that can get you there if it is something you want to pursue, but it is not a bad drive from Ohio.

    · Share on FacebookShare on Twitter
  • nightowlhoot
    nightowlhoot Member Posts: 45
    edited April 2016

    I’m sorry for the stress and inconvenience this is causing you, so not what you need, but I want to encourage you to pursue it as well.

    Take care and keep us posted!

    Night Owl.

    · Share on FacebookShare on Twitter

Categories