Misdiagnosed friend what would you do?

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gracejon
gracejon Member Posts: 972
edited June 2014 in High Risk for Breast Cancer

My friend was diagnosed with DCIS.  Went to a big cancer center for oncologist and treatment.  Had a lumpectomy elsewhere.  Pathology at first place, as I understand it ,read slides as 1 mm of DCIS'  Medical oncologist read the written report and opinion was surgery done with lumpectomy and now radiation.  Breast cancer surgeon a BC center after treatment said no need to follow up since that doc did not do the surgery.  In a effort to find someone for follow up care had a second opinion with breast specialist that involved center's pathology reading the slides and saying there was NO CANCER IN THE FIRST PLACE!  Her quandry now is what to do for follow up.  Oncologist took her off tamoxifen and by her report said that drug was too strong to give for no cancer.  She remains at high risk cause of atypical cells and LCIS and I also believe because she had radiation.  Doesn't radiation increase your chance of cancer by the changes it does on a cellular level?  Clearly in my mind she needs follow up by a breast center.  I think I would also send my slides for another opinion to Sloan or Anderson and expect to give her my opinion on that one.  She is torn about who to see and what to do so I thought before I gave her my opinion in total, I would ask you all.  Please help!  BTW I think you guys are definitely smarter than me!

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  • AnneW
    AnneW Member Posts: 4,050
    edited September 2008

    So, let me get this straight because I'm not sure I completely got it. She was told that her biopsy showed 1mm of DCIS, so she had a lumpectomy, radiation, and tamoxifen (briefly)?? Now, the opinion was NO cancer after all, so how to follow?

    That's chilling, to have had surgery and rads for no reason.

    I don't think breast radiation increases the risk of breast cancer. LCIS is a marker for potentially developing breast cancer as you know. At a minimum, your friend needs to find a breast center she trusts for advice. I mean, at this point, she still needs her vigilant, routine screenings of mammos, clinical breast exams, and possibly MRIs. Tamoxifen isn't recommended for LCIS. But if she truly had DCIS (yes, get those path slides re-evaluated one more time!) it could be. But for 1mm of DCIS? Was it super-aggressive DCIS?

    Bottom line--get a thrid path reading. Take those results and the others to a major medical center and be presented at their tumor board.

    Best of luck to your friend,

    Anne

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  • gracejon
    gracejon Member Posts: 972
    edited September 2008

    Anne, I think you got it completely right.  She was diagnosed and treated.  After all was said and done in an attempt to get breast care follow up, a new doctor requested path slides be sent to her center's pathology department and were read as NO CANCER and atypia with LCIS.  I guess the crux of the matter is a community hospital read it as cancer, the breast center pathologist read it as no cancer but after the fact as she was treated for the DCIS by standard of care.  BTW her oncologist and radiation was done by the breast center but they did not ask for the slides to review prior to or during treatment.  They went on the written report by the community pathologist.  The center pathologist specialize and only read breast pathology slides where I believe the community pathologist reads all slides.  I did think that some girls here are taking hormonal therapy for LCIS.  I do not remember if she ever told me how aggressive her DCIS was but I do remember her reporting her one doctor said this was almost not a cancer.  I can not imagine how violiated I would feel if this happend to me.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2008

    Gracejon---I'm a little confused as well.  It's difficult to hear that someone had to undergo radiation  if it truly wasn't necessary. I was diagnosed with LCIS 5 years ago, had lumpectomy, take tamoxifen (yes it IS recommended for LCIS) and am very closely monitored by mammos, MRIs and breast exams by my oncologist and gyn. I would encourage her to get a 2nd opinion from a new oncologist and consider going back on tamoxifen, but have close monitoring at least.

    Anne

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  • ASL
    ASL Member Posts: 202
    edited September 2008

    I was diagnosed with a very small DCIS in June (along with LCIS, ALH, and ADH). My surgeon said I did not need radiation because it was so small and low-intermed. grade. I decided to get a second opinion just to be sure there was nothing more going on. I saw an oncologist at another medical center and her pathologists reviewed my slides. One of her pathologists thought my lesion was more borderline and didn't think it quite met the definition of DCIS--he thought it was ADH. Another one of her pathologists said it was "borderline" but he DID think it was DCIS. So maybe something like that happened to your friend--maybe her lesion was borderline, where some might think it's DCIS and others not quite. But the oncologist and her team all agreed with my surgeon, that DCIS or not, I should not have radiation. I've also seen a couple of surgeon/plastic surgeon teams because I'm considering PBM due to bad family history and it seems like it's time now due to this DCIS and precancerous stuff they found. One of the surgeons I saw regarding a mastectomy thought I should have radiation if I didn't get the mastecomies. It seems like there will always be a lot of opinions out there. I think the impt thing is to at least get a second opinion and even a third opinion, if necessary. Then you have to put your faith in one of them and decide what you're going to do. Too bad your friend didn't get a second opinion before she had radiation.

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  • Kimber
    Kimber Member Posts: 384
    edited September 2008

    Tamoxifen is definitely recommended for LCIS!!!  Also, my surgeon and oncologist both put as my diagnosis "breast cancer".

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  • otter
    otter Member Posts: 6,099
    edited September 2008

    Gracejon, is it possible that your friend had a biopsy, and most of the tumor was removed with the biopsy specimen?  I've heard of that happening, especially with a core biopsy of a small lesion.  Then, once the surgery is done, little or no evidence of the tumor is found.  (It's a good thing they use those titanium clips to mark the spot!)

    Also, 1 mm is an awfully small area of abnormal cells (DCIS).  I would hate to have been the pathologist who had to read that slide, especially if the DCIS was up against an area of tissue damage from a biopsy.

    I agree with Anne--I think I would ask for a 3rd opinion on the pathology, and go with 2 out of 3.  I wonder if there is any of the tissue block left, from which more slides could be cut...

    It's too bad the science of pathology is still so subjective.

    otter 

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