BC mixed DX after false negative biopsy

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BCinfoseeker
BCinfoseeker Member Posts: 38
edited September 2021 in Mixed Type Breast Cancer

I can already tell that this is an incredibly caring community even though it's one none of us wanted to join. After a quick chat with the mods, they suggested I start a thread in this forum.

I'm 61 and otherwise healthy and very active. I have been diagnosed after a lumpectomy with Multi-focal (3 Foci) Ductal Carcinoma In Situ (DCIS 20%) and IDC Type: Solid and Cribriform Carcinoma of the Breast on September 2, 2021 (Right, .2 to 1.7cm, Stage IA, Grade 1, Nottingham 5/9 ER+/PR+, HER2- (IHC)). I had a very confusing false negative biopsy on two of three foci on July 13 with results reported July 20. Surgeon still thought larger, unbiopsied lesion was cancer so I opted for Lumpectomy on August 27. Now it's all dxed as cancer. Margins are negative so that's good.

Initially Lymph involvement was thought to be negative (two ultrasounds and two 3D mammos in June and August) but now there appears to be some ("lymphovascular invasion present"). Because my biopsy was negative, taking a sample of the sentinel node was not indicated or performed. Surgeon has now ordered PET scan to help dx and I have meetings with the RO and BO (radiation oncologist and breast oncologist - am I using the terms right) that will be scheduled this week. The PET will tell us whether more surgery is indicated regarding lymph or other involvement and what kind. My breasts were and remain very dense even after pregnancy and menopause.

My questions for are

- is the timeline too slow

- which physician is the "quarterback" of my case - or is there one

-who else has gotten a false negative initial biopsy and how common is it

-what questions should I ask my constellation of doctors

As a type A prime person this seems to be taking a very long time. My initial screening mammogram was May 24 and here it is yet another holiday where all I have is questions and not a lot of answers.

I hope I'm not whining too much as so many others have very serious and hearbreaking dxes but ugh.

Thank you so much for your help in advance. Hugs

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2021

    Hi BCinfoseeker, and we welcome you warmly here!

    You have lots of great questions.

    Here is a page with Questions to ask your doctor.

    This will give you information on Planning Your Treatment

    It will depend on what your situation is who will be your "primary doctor" on your team: A treatment team is typically a surgeon, plastic surgeon possibly, medical oncologist and radiation oncologist, depending on the treatments that are chosen for your unique situation.

    The timeline also differs from center to center - how busy, if it's community or Comprehensive cancer center, as examples.

    Here is a study from 2015 about the accuracy of biopsy results. And certainly the continue to improve over the years.

    We hope this is a helpful start and that more chime in !

    The Mods


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  • BCinfoseeker
    BCinfoseeker Member Posts: 38
    edited September 2021

    Thanks mods I appreciate it. I have looked at those links and they are very helpful. It's just a super stressful time and I'm not handling this as well as I always thought I would.

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  • jhl
    jhl Member Posts: 333
    edited September 2021

    BC,

    Someone said something to the effect - you don't have to be brave, you just have to show up. I wish I could attribute it to the right individual but it really does embrace the early days of our diagnosis. You have had a lot of hurdles just to get your diagnosis so I can imagine you are overwhelmed. From what you have mentioned, it sounds like you are being treated in a fairly large cancer center. It also sounds to me that your case will be brought to a tumor board, which you may not even know about. This is a group of surgeons, radiation oncologists, medical oncologists, pharmacists & nurses who are presented with all your tests, results & pathology. After your PET, I think it will become clear who will be in charge immediately. However, I do believe your medical oncologist will ultimately take control and be in close consultation with both the radiation oncologist & surgeon. Do you by any chance have a nurse navigator? I was assigned one and she was very helpful in fielding my questions & directing them to the appropriate physician. As time went on, I had regular appointments. While I had radiation, I had regular appointments to see my Rad Onc. After that, I have had regular appointments with my Med Onc. My surgeon kept in touch for the first year but I don't regularly see her anymore.

    Hang in there. Things will certainly sort themselves out. Write your questions down and keep them handy. Until you see your MO, you will have to send your questions to your surgeon. Try using the patient portal since it is very difficult to catch them when they are free & available. Feel free to ask any questions here.

    Best of luck,

    Jane

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  • Rah2464
    Rah2464 Member Posts: 1,647
    edited September 2021

    BCinfoseeker sorry you have had to join us but you have landed in the right community for sure. It really sounds like you are in good hands with a surgeon that pushed forward for a lumpectomy even after a falsely negative biopsy. Going forward the focus will be on the IDC because that is the invasive cancer we all need to wrestle down. Because of that misleading biopsy, you now have to evaluate whether or not nodes are involved. It does sound like your team is being thorough and careful with you. In my opinion I would start my "clock" from your lumpectomy date. Typically you want to begin any additional treatment within 4-6 weeks from then (radiation, anti hormonal). The caveat would be if they have to go in surgically to evaluate your nodes. They may suggest radiation to the axilla instead.

    Your medical oncologist should also be ordering the Oncotype DX test on your tumor in order to determine aggressiveness. I hope your nodes are all clean and the rest of your path is a lot less stressful than it has been so far.

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  • sunnidays
    sunnidays Member Posts: 124
    edited September 2021

    Just curious, how come you did no have a CT scan, a bone scan and an ultrasound to have a fuller picture before they did the operation?

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  • PamEP
    PamEP Member Posts: 82
    edited September 2021

    BCinforseeker: My initial biopsy showed IDC cribriform carcinoma, "lymphovascular invasion present". Unfortunately my margins were not clear, so I went for a second surgery that included SLNB. I was terrified of the path report because of the lymphovascular invasion, but it came back 0/4. So its presence in the tumor does not mean it will make it to the nodes. I did have ADH near one margin, which is another concern, and apparently, per my surgeon, that went before the BC board for review. Clear margins was the verdict, from what I understand.

    Sunnidays: I had only an US and an attempted ultrasound-guided stem core needle biopsy (BIRADS 4) before my two surgeries, never an MRI or CT Scan. I am having a dexascan for bone density before any further treatment (radiation, Ai's) mostly at my asking due to existing osteopenia. These scans are not standard at my hospital prior to all BC surgery.

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  • BCinfoseeker
    BCinfoseeker Member Posts: 38
    edited September 2021

    Thank you everyone for the kind responses and knowledge! I can't tell you how much it means to me!

    JHL - I'm seeing my MO Monday. So relieved I got an appointment so soon. I will definitely ask about the nurse navigator. I feel like I'm starting a highly technical new job with all the new players and terms and a steep learning curve. I had a job like that once - no thank you! And yes, this is a cancer center location here in Vegas and the physicians are well rated. I'm happy with the quality of care.

    RAH - Waiting for oncotype (Mammaprint) results more guidance. Radiation is definitely indicated of course. Waiting to hear where we'll focus and what else is on tap.

    Sunnidays - I had two official ultrasounds (one in June and one by the surgeon prior to the biopsy, then she used it to guide her in the needle biopsy) and two 3D mammograms (one in June and one prior to my lumpectomy in August). I had just had a dexascan which I had when I had my screening mammo in late May which is how all this started. Though weirdly I still need to get the results. That might be different than a bone scan. I had an MRI scheduled which I wimped out on because I'm so claustrophobic. My surgeon let me off the hook though now I wish I'd knuckled through it. That's another thing that the false negative gave me - a sense that I was somehow going to manage to escape cancer's clutches.

    Pam: You and I are on the same general schedule! Yay and boo! Our cancers are fairly similar too though I have both solid and cribriform, and my margins are clear. And thank you - I learned a new term - BI-RADS. It was on my initial Ultrasound on 6/21 - I tested a BI-RADS 5. At the time I just fixed on the terms "Highly suggestive of Malignancy" on the results page right next to the term. But what does SLNB mean? It's not in the glossary posted.

    I might start posting in the IDC forum at a suggestion I got by private message, but again, I thank you kindly for the information and community. Please post any responses to this here :) thank you again xoxo

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  • jhl
    jhl Member Posts: 333
    edited September 2021

    BC,

    SLNB means sentinel lymph node biopsy.

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  • gamzu710
    gamzu710 Member Posts: 214
    edited September 2021

    I also had a false negative biopsy; the core needle biopsy came back as atypical ductal hyperplasia. In about 20% of cases, this gets upgraded to DCIS upon excision, so the standard recommendation is to do excision biopsy. I did that, and it did get upgraded--to triple-positive IDC. There was like a 5% chance of that and I was in 5%. I went in expecting that at worst I'd have DCIS and instead ended up being told I'd need chemo and a bunch of other things.

    I consider my biopsy a false negative because the surgical pathology report noted that there was no needle biopsy site in the tumor that was removed. It was right next to it. Despite having a palpable lump very close to the skin that was obvious on ultrasound, the first radiologist just missed it and instead sampled next to it. I don't know how this happened. The radiologist was also sure she got it and didn't do a post-procedure mammogram to check the clip placement, which might have shown the error. It delayed my diagnosis by almost 2 months.

    Hindsight is 20/20. I'm not happy about it but I don't know if it's made a difference. I didn't exactly go running to the doctor the day I found the lump, either, so who knows. I had some renewed anger last week after another biopsy (MRI-guided) at a different provider when I was taken off for an unexpected mammogram afterward to check the clip placement and suddenly processed that this step was skipped last time and probably shouldn't have been.

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  • PamEP
    PamEP Member Posts: 82
    edited September 2021

    Gamzu: It sounds like your radiologist cut corners outside of standard practice. The clip is important for both future mammograms if the biopsy is benign and to check the location of the biopsy. In my case the radiologist took eight samples in an US-guided core needle biopsy and felt pretty confident about getting the lump tissue, the lump being obvious and close to the surface. However, when she wrote her report based on a benign pathology finding she indicated that there were no microcalcifications in the sample and that the clip in the post US mammogram was superior to the lump site. She concluded that the biopsy may have been performed immediately adjacent to the lump. She gave the biopsy a BIRADS 4 and I got a phone call recommending that I get another US sampling/excisional biopsy. I was upset given the eight samples but asked for a surgery referral for the excisional biopsy, which was positive for DCIS and IDC. My surgeon said that the needle sometimes bumps off the lump and that the radiologist did a good job by finding the sampling inadequate based on the clip location and sample results.

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