Low grade DCIS/Sentinel biopsy

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LovesLiterature
LovesLiterature Member Posts: 33

Hello, I was just diagnosed today with DCIS. My surgeon wants to do a Biopsy of my sentinel node. Can someone shed light on how soon you can have a sentinel node biopsy after a lumpectomy excision? Ps. Scared shitless and 🙏🏼. Hugs to all.

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

    Sentinel node biopsy (SNB) is done during a lumpectomy surgery. (And if by “excision” you mean the process by which your tumor was biopsied, you can get a lumpectomy/SNB as soon as you want and the surgeon has availability).

    Before surgery, you get either a locator-wire or (more often now) a radioactive seed inserted into your tumor (guided by either MRI or ultrasound). Then you have blue dye &/or a radioactive tracer injected into your breast. Once you are under anesthesia, there is a nuclear-medicine tech who passes a Geiger counter over the breast—when it “chatters” that’s where the surgeon knows where to cut for the tumor (with further guidance from the imaging you’ve had thus far). Once (s)he is inside, the first lymph nodes that the tumor would drain to either also “light up” under Geiger counter or scanner, take up the blue dye, or both. (I didn’t have the blue dye). Those are the sentinel nodes, which are then removed for biopsy (sometimes additional nodes—stuck to them like grapes in a cluster—that don’t light up get removed too because it is impossible to remove just the sentinels and leave those behind). Then you are sutured closed—sometimes, if the nodes are close to the tumor, you might have only one incision. The whole procedure from anesthesia taking effect to closure takes less than 2 hrs., sometimes much less.

    Breast cancer is scary. But the lumpectomy/SNB isn’t as scary as most of us fear.

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2016

    Actually, it's a good question.

    With a diagnosis of low grade DCIS, there is no reason to have a SNB. Most women who have a lumpectomy for DCIS do not have an SNB; the SNB is only necessary to check the nodes if invasive cancer is found during the lumpectomy (or excisional biopsy, as you had), and in that case, the surgery can be done after the lumpectomy. Normally, from what I've seen happen to other women on this site, it is scheduled within a few of weeks.

    LovesLiterature, if your excisional biopsy resulted in clear surgical margins and if nothing more than low grade DCIS was found, then there is no reason that I can see why any additional surgery should be required. If the margins were not clear, then a re-excision lumpectomy will be necessary, but still, not an SNB. An SNB for someone with a diagnosis of DCIS is a completely unnecessary procedure. Removing lymph nodes, even just 1 or a small number (normally anywhere from 1 to 4 nodes are removed during and SNB), puts you at risk to develop lymphedema, and this is a risk that stays with you for the rest of your life. Should you develop lymphedema, this is a condition that stays with you for the rest of your life. So having an SNB when it is not medically indicated (i.e. as in the case of a diagnosis of non-invasive disease) simply puts you at unnecessary risk.

    I'd suggest that you ask your surgeon why he is recommending an SNB when your diagnosis is low grade DCIS. And check out the NCCN guidelines - these are the cancer treatment guidelines used by most doctors in the U.S.. You can see on page 26 that an SNB is only mentioned (as an option) for those who have a mastectomy. This is because unlike with a lumpectomy, where an SNB can be done after the fact (should invasive cancer be found during the lumpectomy surgery), with a MX it is difficult to do the SNB afterwards. So most women who head in MX surgery with a preliminary diagnosis of DCIS do have an SNB, whereas most women with DCIS who have a lumpectomy do not.

    https://www.nccn.org/patients/guidelines/stage_0_b...




  • Snowflake67
    Snowflake67 Member Posts: 32
    edited September 2016

    hi I was diagnosed recently as well. I meet with breast surgeon Monday and my lumpectomy is Thursday -I think he is checking nodes during surgery-but will know Monday. I am terrified to

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2016

    Snowflake, in one of your other posts you indicated that you believe you are Stage I. If that is the case, then you have invasive cancer (although still very early stage) and an SNB to check nodes is necessary and standard practice.

    However for those diagnosed with Stage 0 DCIS (with no invasive cancer present), there is no medical need to check the nodes and therefore an SNB is an unnecessary procedure.

    LovesLiterature, I went back and read your earlier posts. I noticed that you were initially diagnosed with ADH, and then had the excisional biopsy which found the grade 1 DCIS. While I know that you were hoping for a final diagnosis of ADH, keep in mind that grade 1 DCIS is very close to ADH - in fact sometimes even pathologists looking at the cells under a microscope have a problem distinguishing between ADH and grade 1 DCIS. It is also good news that your excisional biopsy resulted in clear margins. So there is really no reason why you should have any additional surgery. Keep in mind too that an SNB is not recommended (within the NCCN Treatment Guidelines and by most experienced breast surgeons) even for women having a lumpectomy who have been diagnosed with aggressive grade 3 DCIS. So it would be most unusual to have an SNB with grade 1 DCIS.

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

    Hi LovesLiterature:

    I agree with Beesie. Please be sure to obtain copies of the complete pathology reports from all biopsies and surgeries, to review the findings, confirm the diagnosis (pure DCIS with no evidence of invasion) and other important information such as grade(s), ER status, PR status, and margins (of the surgical excision sample).

    I also agree that you should request a reasoned explanation of the basis for the recommendation of sentinel node biopsy "SNB") in your case. You may also wish to seek a second opinion, if unsure of what is best for you.

    Additional Information:

    To my knowledge as a layperson with no medical training, 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 or wide-excision) for pure DCIS (any grade; no invasive disease present). In certain cases, it may be appropriate to depart from what the guidelines provide.

    Under the NCCN guidelines for breast cancer (Version 2.2016), the lumpectomy options do not include sentinel node biopsy, except in the case of excision in an anatomic location (e.g., 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 cases are not mandatory indications for SNB] 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, which have been in effect for some time, although some doctors and institutions have been slow to adapt their practice:

    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 the appropriate case, 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 the patient is willing to undergo a second procedure in general, and haw no contraindication for a second procedure (which entails another round of some type of anesthesia, etc.)

    BarredOwl

    [Edited to add: The above applies only to apparently pure DCIS treated by breast conserving therapy.]

    [Oct 13, 2016 edit: The NCCN guidelines for breast cancer, with separate sections on DCIS, are available with free registration here:

    https://www.nccn.org/store/login/login.aspx?ReturnURL=https://www.nccn.org/professionals/physician_gls/pdf/breast.pdf

    ]


  • jenn32214
    jenn32214 Member Posts: 89
    edited September 2016

    "Snowflake, in one of your other posts you indicated that you believe you are Stage I. If that is the case, then you have invasive cancer (although still very early stage) and an SNB to check nodes is necessary and standard practice."

    And this is how it was for me. My BS never wavered from Lumpectomy with SNB, unless any tests showed it was worse than we thought. Luckily my nodes came back clean, but I am still glad I had the SNB.

  • Beesie
    Beesie Member Posts: 12,240
    edited September 2016

    jenn, with invasive cancer, an SNB is an important part of the diagnostic progress, whether it turns out that one's nodes are clear or not. Invasive cancer can move into the nodes, and therefore it's critically important that this be checked, because nodal involvement, if found, will change the diagnosis and likely change the treatment plan. DCIS cells are confined to the milk ducts, and as such, DCIS cannot move into the nodes. This is why an SNB is not necessary for someone with DCIS.

    I wanted to reiterate this point since any discussion on this topic that includes both those who have invasive cancer and those who have pure DCIS is bound to be confusing, particularly for those who have DCIS. DCIS is different from invasive cancer, and therefore the treatment protocols are different.

  • LovesLiterature
    LovesLiterature Member Posts: 33
    edited September 2016

    wow, thank you everyone for putting in work on this topic. I too was a bit surprised about the SLB recommendation. But my plan ladies is to go the double mastectomy route. I have extremely high risk (I'm 3rd generation cancer diagnosis on mom's side). But this is the other reason I think he is suggesting it... Beesie or Owl maybe you can make sense of this on my pathology report: Other findings:Focal Biopsy site related changes at lateral specimen margin/edge. Of course on diagnosis day I was deer in headlights so didn't ask. Thank you everyone for your thoughtful input. Hugs, a 42 year old mom and teacher

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

    Hi LovesLiterature:

    I am not certain what is meant by that comment, so it would be best to add it to your question list for your surgeon.

    With apparently pure DCIS to be treated by mastectomy, the guidelines do include sentinel node biopsy ("SNB") on the DCIS side, which is typically done in the same surgery. This is because the SNB procedure relies upon intact lymph channels to identify the sentinel node(s). The radiotracer and/or blue dye is injected in the breast and flows through the lymph channels to locate the sentinel node(s) ("mapping"), which are thus identified for removal. The lymph channels are likely to be disrupted by mastectomy surgery.

    With prophylactic mastectomy, SNB may not be required. Some considerations that may influence the recommendation received include, for example, whether you have had a recent breast MRI or not, or certain suspicious imaging findings (by any type of imaging) that have not been biopsied. Thus, if you are receiving a purely prophylactic mastectomy on one side, you may wish to discuss the pros and cons of SNB on the prophylactic side with your surgeon (including the possible outcomes and what would be done if invasive disease were to be found). Some surgeons may also have experience with a newer approach in which the sentinel nodes are mapped and marked, but are not removed during mastectomy surgery. Instead, the surgical pathology is examined, and the nodes are removed later only if invasive disease is found.

    BarredOwl


  • Beesie
    Beesie Member Posts: 12,240
    edited September 2016

    LovesLiterature, I will take BarredOwl's post one step further. Since you have had an excisional biopsy, which is essentially the same surgery as a lumpectomy, and since you came out of that surgery with a final diagnosis of Stage 0 DCIS, grade 1, and with clear surgical margins, at this point you are done with any medically required surgery. So in choosing to have a BMX, you are in effect having a prophylactic mastectomy on both sides. By extension then, this thereby negates the need for an SNB on either side.

    In the past I have seen women on this board who were planning to have a BMX (because of family history, as in your case), choose to first have a lumpectomy in order to confirm a final diagnosis of DCIS, specifically so that they could avoid having an unnecessary SNB at the time of the MX. Their surgeons were on board with this approach.

    If you had not had the excisional biopsy, or if the margins were unclear, then most breast surgeons would recommend the SNB at the time of your MX. But in your case, unless there is a reason why your surgeon believes that you might still have invasive cancer in your breast (i.e. an area of concern seen on an MRI, for example), there is no reason that I can see, based on current treatment guidelines, to have the SNB.

    This is definitely worth a discussion with your surgeon, and possibly a second opinion from another surgeon.

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

    Hi Beesie:

    Your analysis makes sense to me. Follow-up questions would appear to be in order for both sides in LovesLiterature's situation to understand the basis for the recommendations, and possibly a second opinion.

    BarredOwl

  • Snowflake67
    Snowflake67 Member Posts: 32
    edited October 2016

    Wow-anyhow I added to my profile -had lumpectomy on 9/29. Lymph nodes clear, margins clear but close -meet with surgeon on 10/5 for full report and next syeps

  • rosierosie
    rosierosie Member Posts: 71
    edited October 2016

    i had the same diagnosis low nuclear grade grade 0 DCIS I had a lumpectomy and snb biopsy , I was scared at at first alot of people told me not to get the snb,on these boards but I followed my surgeon, it was painless and my margins were clear, just discuss it with your surgeon. I glad he did it. dont worry you are under when it happens at least I was


  • TrmTab
    TrmTab Member Posts: 832
    edited October 2016

    I agonized about the SNB up until going into surgery for my MX...actually had the doctor return to the pre--op room after he had left for the surgery suite to ask one more time...

    I had two lumpectomies without clear margins but large areas of pathology showed no evidence of invasive activity, pure DCIS.

    I had areas of DCIS at 6 o'clock and 3 o'clock on my L breast...so my first consult was "you don't really have cancer but standard practice is a MX" I fought over that and had 2 lumpectomies..unfortunately without clear margins...so MX in fact happened.

    At that point, we "argued" over the standard practice of SNB with MX for DCIS...having had 2 LX, I argued this was MORE information and shouldn't it be included in the decision making??? Finally my surgeon agreed that indeed it was more info, so we marked the SNB, but did not go for it. The final pathology continued to see no invasive cellular activity and very wide margins, so I am grateful that I didn't set myself up for a potential of Lymphodema down the road.

  • rosierosie
    rosierosie Member Posts: 71
    edited October 2016

    i had the same diagnosis low nuclear grade grade 0 DCIS I had a lumpectomy and snb biopsy , I was scared at at first alot of people told me not to get the snb,on these boards but I followed my surgeon, it was painless and my margins were clear, just discuss it with your surgeon. I glad he did it. dont worry you are under when it happens at least I was


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

    Certainly, one's surgeon should be most familiar with one's diagnosis.

    If a person's biopsy shows invasive breast cancer (rather than apparently pure DCIS), then they will typically receive a recommendation for an axillary staging procedure (e.g., sentinel node biopsy ("SNB")), regardless of surgical approach. This was clearly stated above.

    In contrast, with breast conserving surgery (lumpectomy) for apparently pure DCIS, an SNB is not typically recommended under consensus guidelines from ASCO or NCCN. The information quoted in my post above regarding the content of the ASCO and NCCN guidelines in this setting speaks for itself, and patients with pending treatment decisions should not hesitate to access the original sources. There may be exceptions applicable in the individual case, such as for example, surgery in the tail of the breast, and the surgeon should be able to explain the basis for recommending SNB.

    When in doubt, one of the best ways to probe the basis for and quality of medical advice is to seek a second opinion at an independent institution, preferably one with a comprehensive breast center and breast surgeon who specializes in the treatment of breast cancer or patients at risk of breast cancer as essentially all of their practice.

    BarredOwl

  • Beesie
    Beesie Member Posts: 12,240
    edited October 2016

    Let's be clear about this. The risk from an SNB is not what happens during the operation; the risk is what might happen in the years that follow, i.e. the development of lymphedema. Having an SNB sometimes results in a longer, more painful recovery with sharp pains and underarm / arm numbness (my numbness lasted 6 months), but that's a short-term issue. Lymphedema, should it develop, is a life long condition.

    While lymphedema can develop immediately after surgery, or could possibly even develop many many years later (if you experience trauma to that arm), a recent study suggests that the period of greatest risk is years 2-3 after surgery. So unfortunately making it through surgery with no problems is not a sign that someone might not develop lymphedema.

    Topic: New Study Lymphedema and Breast Cancer: When Is Risk Greatest? https://community.breastcancer.org/forum/64/topics...

    Since all the leading experts and the ASCO and NCCN treatment guidelines say that an SNB is not recommended for someone having a lumpectomy for DCIS, personally I would not expose myself to the risk of lymphedema by choosing to have a medically unnecessary SNB, except in the case where my biopsy pathology and pre-surgery imaging indicated that it was almost certain that invasive cancer would be found during the lumpectomy. My objective with treatment is to reduce the risk from my breast cancer diagnosis, while exposing myself to the minimum number of new risks (some new risks being unavoidable with surgery, etc.).

  • Dizzybee
    Dizzybee Member Posts: 142
    edited November 2016

    My surgeon was not certain whether he would find microinvasions, but even with my 5cm of high grade DCIS he was adamant he didn't want to do a SNB, his view was that he would only want to do it after the lumpectomy if the pathology showed it was necessary.

    I guess if there had been any invasion I might have felt it would have saved me another procedure, but as it is, I'm really glad it's one thing that I don't have to stress out about. If we only knew how things would turn out, we could save ourselves so much worry.

  • Annette47
    Annette47 Member Posts: 957
    edited November 2016

    My micro-invasion was found on the initial biopsy, which was why I had a SNB, but my surgeon specifically said that she would not have done one otherwise.

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