SNB for DCIS grade 1?

Options
JACTsMom
JACTsMom Member Posts: 55

I'm having a rough day today and need to make a decision. All advice is appreciated. I am scheduled for surgery on 2/16 (Left breast lumpectomy with sentinel node biopsy and needle localization). My surgeon said I need the LX but not the SNB but I insisted on it so it's scheduled but now I'm having major second thoughts. I've just learned a lot about lymphedema and definitely don't want that. Right now it looks like I need to call first thing Monday morning and cancel the SNB portion of the surgery but I'm still confused.I just read Beesie's 'A laypersons guide to DCIS' and that was very helpful but I still have a few questions.

If I have the SNB and it's negative does that mean I can forego radiation?

If I have the LX only and it ends up showing IDC do I need the SNB at a later date?

I don't want radiation. I don't want tamoxifen or other meds. I don't want surgery. I don't want cancer. I'm 51 and I've never had surgery before. I feel so uninformed. I can't think straight today. I'm so sorry to be a pest. I'm just not sure how to proceed.

Comments

  • jbdayton
    jbdayton Member Posts: 700
    edited February 2016

    I think the issue is at the moment you have been scheduled for a lumpectomy. After the pathology comes back and they find your area of concern to only be DCIS with clean margins then chances are you will be through, or maybe hormonal therapy. No SNB , no fear of lymphodema.

    If an invasive component is found then a SNB can be done to see if the cancer has spread to the nodes.

    This would be the least invasive treatment plan.

    Good luck making your decisions.


  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited February 2016

    None of us wanted cancer. But that train has left the station and now we have to do whatever is necessary to prevent a trainwreck down the line. (Relax: prevention doesn’t necessarily require “throwing everything we have at it”). Surgery is the absolute minimum that is necessary, even with only a grade 1 tumor like you have. It’s 1cm already, so mere “vigilant surveillance” (as the maverick surgeon Laura Esserman offers for very early grade 1 DCIS) is no longer advisable.

    Don’t want tamoxifen (nor, I assume an aromatase inhibitor if you’re postmenopausal) with an ER+ cancer? You know you’re playing with fire, right? Your tumor feeds on estrogen to grow and if you don’t either block its estrogen receptors with tamoxifen or shut down your body’s estrogen production (ovarian suppression or removal isn’t enough, because your adrenal glands and fat cells also make estrogen no matter how far past menopause), you are definitely at higher risk for recurrence. Bear in mind that women who don’t have bad side effects generally don’t post about their experiences with those drugs. And for most of us, side effects are minimal and manageable.

    As to SNB, yes, you will need it IF the lumpectomy finds IDC as well; but as long as you don’t mind the possibility of IDC necessitating a second surgery you could forgo it initially. Bear in mind LE is uncommon with SNB removing only a few nodes (I was a special case, as despite having only 4 nodes removed--all neg.--the weight of my large breast pulled the SNB incision open, causing my seroma to burst; and probably in combination with obesity and high-dose radiation predisposed me to it). But bear in mind too that with SNB alone the risk is only 2%, while adding radiation raises it to about 15-25% depending on whose site you consult (the Lymphedema Educ. Research Network’s site is the more pessimistic). Still unlikely. As to not wanting radiation, if surgery confirms you have pure low-grade DCIS, ask to have your surgically-removed tumor tissue sent for the newer "Oncotype DX For DCIS" test. A low score means that radiation wouldn’t be necessary. You wouldn’t be delaying things unnecessarily, because your incision(s) have to be fully healed (abt. 4-6 wks) before you’d start radiation should it be necessary.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited August 2016

    Hi JACTsMom:

    Question 1: If I have the SNB and it's negative does that mean I can forego radiation?

    No. Sentinel node biopsy is a form of axillary staging, and assesses regional [edited to add: spread and risk of ] distant spread. Radiation therapy to the breast itself is a local treatment, and can be separately warranted regardless of nodal status, based on the results of the surgical pathology of the breast tissues (e.g., if higher risk DCIS or invasive disease is found).

    If no invasive disease is found, then your doctors will consider all relevant clinico-pathologic information, such as the size, grade, hormone receptor status, margins, your age, etc., and Oncotype for DCIS test results (if used), in order to assess your recurrence risk without radiation. You can consider your risk/benefit profile and come to decision about radiation then.

    Question 2: If I have the LX only and it ends up showing IDC do I need the SNB at a later date?

    Sentinel node biopsy is indicated for invasive disease, and can be done in a later procedure. The information is used (along with other information) for assessing the need for adjuvant therapy. With lumpectomy, if adequate margins are not achieved, a second procedure may be needed anyway.

    Additional Information:

    To my knowledge, current US consensus practice guidelines from the National Comprehensive Cancer Network (NCCN) and American Society of Clinical Oncologists (ASCO) generally do not recommend SNB for a patient undergoing breast conserving therapy ("BCT", lumpectomy) for pure DCIS (any grade; no invasive disease present). Note that in certain cases, it may be appropriate to depart from what the guidelines provide.

    Under the NCCN guidelines for breast cancer (Version 1.2016), the lumpectomy options do not include sentinel node biopsy, except in the case of excision in an anatomic location (eg, tail of the breast), which could compromise the performance of a future sentinel lymph node (SLN) procedure, in which case an SLN procedure may be considered:

    Lumpectomy without lymph node surgery + whole breast radiation therapy (category 1)

    OR

    Lumpectomy without lymph node surgery without radiation therapy (category 2B)

    The ASCO guideline does not recommend routine SNB for patients with DCIS undergoing lumpectomy either:

    http://jco.ascopubs.org/content/32/13/1365.full

    "For women with a minimally invasive biopsy showing [pure] DCIS who are being treated with BCS [lumpectomy], there is no evidence to support performing SNB (see Recommendation 4.3). Performing SNB places patients at risk for long-term complications including permanent lymphedema. SNB may be performed as a separate second procedure in the women in whom invasive cancer is found (reported in 10% to 20% of cases overall, approximately half of which are limited to microinvasive cancer). Exceptions may include [note: these may be optional] cases where breast imaging or physical examination show an obvious mass characteristic of invasive cancer or a large area of calcification without a mass (eg, ≥ 5 cm) where the probability of finding invasive cancer on the resection specimen is high . . . These recommendations are primarily based on retrospective data. Therefore, the Update Committee does not endorse routine SNB for patients with DCIS undergoing BCS."

    This 2012 abstract discusses apparent overuse use of the procedure in light of the guidelines:

    http://meetinglibrary.asco.org/content/100421-114

    The abstract concludes: "SLNB can be performed as a second procedure for those treated with BCS and identified with invasive cancer, thereby avoiding unnecessary risk of significant morbidity. Breast programs should review their practices to curtail the use of unnecessary surgery for women with DCIS."

    In other words, in appropriate cases, one can choose to have the lumpectomy for DCIS, obtain review of the final pathology, and if invasion is found, then undergo SNB in a second (later) procedure. If there is no invasion, the patient is able to avoid the SNB procedure and its accompanying risks, including the risk of lymphedema. Lymphedema can occur in some cases with SNB (estimates of incidence vary), 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. Again, most lumpectomy patients can avoid SNB completely, or at least defer it until it is clearly medically indicated.

    With BCT (lumpectomy), if clean margins are not obtained, a further procedure(s) may be needed anyway, so presumably you are willing to undergo a second procedure in general, and have no contraindication for a second procedure (which entails another round of some type of anesthesia, etc.)

    I had mastectomy with SNB on both sides (indicated under guidelines). While I do not appear to have lymphedema so far, my body did not like the lymph node surgery at all. I had serious problems with my arms requiring physical therapy, axillary cording lasting for months, and my arms still bother me over two years later. I try to take lymphedema precautions, and I worry about it.

    BarredOwl

  • JACTsMom
    JACTsMom Member Posts: 55
    edited February 2016

    Thank you all so very much for this invaluable information. Your time is greatly appreciated.

  • Annette47
    Annette47 Member Posts: 957
    edited February 2016

    I think BarredOwl’s post is very good. I did have a SNB with my lumpectomy, but only because the micro-invasion of IDC had been found in the stereotactic biopsy. Had that not been the case, I wouldn’t have done it. I haven’t had problems with lymphedema, but I did have axillary cording for months, like Barred Owl.

  • ORknitter
    ORknitter Member Posts: 119
    edited February 2016

    JACTsmom, I had just the lx. My surgeon explained that in her thinking "less is best" and she would have rather done a second surgery than subject me to a more invasive procedure first. Now that I am through rads and well into AI therapy I couldn't be happier (unless of course I never had It at all). I don't have to worry about further blood draws, blood pressures on that side or anything else. Once you have had SNB you really can't undo it.

Categories