Re-excision with lymphnodes biopsy. Very upset

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Everart70
Everart70 Member Posts: 6
edited September 2015 in Waiting for Test Results

Hello friends,

My journey has been so frustrating and my brain is so overwhelmed after my follow up appt. Going back to the beginning, in early June I discovered bloody and clear fluid coming from the nipple of my left breast. After a long mammogram appt they discover a cluster of suspicious microcalcifications under my nipple. I went to see a surgeon and he agreed that I needed a lumpectomy to remove the area and biopsy. On August 27th I underwent the lumpectomy. Not a comfortable recovery but after 5 days I was feeling ok. I went in for the results but the it was inconclusive. The pathology discovered atypical cells, possible invasive ductal carcinoma but possibly atypical hyperplasia. Unfortunately they have decided I need another lumpectomy to remove more tissue and this time we are removing a few lymphnodes to biopsy just in case. I'm so frustrated, scared, and exhausted. I'm 35 years old and I have 3 boys. This of course is less than ideal. I absolutely understand that my health is number one and if I'm in fact dealing with cancer then we need to know. I'm so frustrated that I need a second more invasive surgery to get more answers. I wish we could have known the answers with the first surgery. This entire thing feels so surreal. I could use words of encouragement.

Comments

  • Shannak
    Shannak Member Posts: 5
    edited September 2015

    Hi Everart - just wanted to send positive vibes your way. I'm also a mom of two little ones with another on the way and awaiting biopsy results.

    The waiting and speculating is the hardest. Hoping for good results for you after the next procedure - so you can put this behind you

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited September 2015

    Hi Everart70:

    You indicated the "pathology discovered atypical cells, possible invasive ductal carcinoma but possibly atypical hyperplasia." That sounds a bit like a verbal summary of the findings. If you have not already done so, please obtain a copy of the actual pathology report for your records so you can see exactly what it says.

    You did not mention surgical margins at all, but if they were inadequate, that might suggest re-excision. (I am not sure.) This is another reason to obtain a copy of the pathology report.

    You are right to be concerned about the possibility of over-treatment (and concomitant risks) in the face of unclear pathology findings.

    Rose50 makes an excellent point about the option of seeking a second opinion from another institution, preferably one with extensive experience in evaluating breast cancer pathology, such as an NCI-designated cancer center.

    http://www.cancer.gov/research/nci-role/cancer-cen...

    Second Opinion:

    What you have been through is exhausting, but it may be worthwhile to seek a second opinion, particularly regarding the interpretation of the pathology and the surgical recommendation of re-excision and sentinel node biopsy ("SNB").

    For example, if the second opinion pathology review led to a conclusion of pure atypia, it seems possible that neither re-excision nor SNB would be recommended. If invasive cancer were definitively identified in the pathology review, then SNB at least (with or without re-excision) may be indicated. Another possibility it that the recommendation of re-excision would be confirmed for some reason, but in the absence of a definitive diagnosis of invasive disease, you might have the option of deferring sentinel node biopsy. I am just a layperson, so there may be other outcomes.

    Here is a link to a recent study of interest illustrating why a person might want to seek a second opinion about their pathology results (click at upper right to get past the ad to get to the article). Note that atypia presented a higher degree of diagnostic challenge:

    http://jama.jamanetwork.com/article.aspx?articleid...

    The above JAMA article was summarized by breastcancer.org here:

    http://www.breastcancer.org/research-news/study-on...

    Some patients choose to seek a second (or third) opinion about one or more of their (1) imaging, (2) pathology, (3) surgical options, and/or (4) post-surgical treatment options.

    Some seek a pathology review only. Others seek a more complete review of all imaging (mammograms, ultrasound, and MRI (if any)), all associated written reports, and a fresh review of the actual pathology slides (which are sent overnight to the other institution), plus an independent recommendation regarding surgical and/or post-surgical options.

    If you'd like to learn more about the process, BC.org has a good section about second opinions if you haven't seen it already. There are multiple sections about second opinions, so please see the menu at upper left of the link to review them all. Apparently, some insurance plans may actually require a second opinion. Also check that the proposed second opinion institution and doctors are in-network.

    http://www.breastcancer.org/treatment/second_opini...

    Sentinel Node Biopsy:

    My comments below are based on my understanding that atypical cells have been discovered, but it is unclear whether invasive disease is actually present or not.

    I mentioned above that even if re-excision is indicated, you might have the option of deferring sentinel node biopsy until you have a definitive diagnosis of invasive disease. I realize that deferring SNB could entail a third procedure; however, you might be able to avoid an SNB altogether. As you may know, lymphedema can sometimes develop after SNB, the risk of it showing up is a life-long risk (it may appear years later), and once it appears, it is a life-long condition.

    Each patient must weigh the risks and benefits as they come to a decision. You can discuss this with your current surgeon, whether or not you decide to seek a second opinion.

    You may wish to ask the surgeon what the various US consensus treatment guidelines, such as the National Comprehensive Cancer Center (NCCN) or American Society of Clinical Oncologists (ASCO) guidelines recommend with regard to sentinel biopsy in the absence of a definitive diagnosis of invasive disease. If the recommendation for SNB is not within the guidelines, please request an explanation of why it is being recommended in your case.

    Note that in patients with excision in an anatomic location (e.g., tail of the breast), which could compromise the performance of future SNB procedure, an SNB procedure may be considered. You should ask the surgeon this question to confirm the option to defer SNB is available in your case.

    If an SNB is indicated, please also be sure to discuss what will be done if some positive sentinel nodes are found during the SNB surgical procedure.

    For more discussion about SNB in the absence of a finding of invasive disease, please see this discussion (the focus there was pure DCIS, a non-invasive cancer):

    https://community.breastcancer.org/forum/68/topic/...

    Experience of Surgical Team in Sentinel Node Biopsy:

    With regard to sentinel node biopsy ("SNB" or "SLN" biopsy), the National Comprehensive Cancer Network ("NCCN") breast cancer treatment guidelines (Version 3_2015) state:

    "An experienced SLN team is mandatory for the use of SLN mapping and excision."

    I think that generally a breast surgeon who specializes in the treatment of patients with breast cancer (as close to 100% of their practice) would be the best choice and most likely to have a lot of experience with sentinel node biopsy (versus a general surgeon who does some breast surgeries). I also believe that a breast surgeon specializing in the treatment of patients with breast cancer would also be preferred for re-excision.

    In my case, I sought a second opinion about my imaging, pathology, and surgical recommendations at Mass General. The pathology (DCIS) was confirmed, but the radiologist disagreed with the interpretation of the imaging. This ultimately led to the diagnosis of bilateral breast cancer (previously thought to be unilateral), and a change in surgical recommendation from unilateral to bilateral mastectomy.

    I am only a layperson, and there may be errors in my comments or understanding. So please consider this as information only, subject to confirmation with your doctors. I hope it helps you come to an informed decision about your next steps.

    Don't hesitate to ask us more questions if you need to.

    BarredOwl



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