LCIS- Sentinel node biopsy- To do or not to do?
I am 50 years old. I am not positive for the Brac 1/2 gene. On my recent MIR it showed abnormal, had a core bio and LCIS was found. The MRI report said depending on the finding to do core bio on the right, as well. After years of being monitored and two core bios and one lumpectomy I elected to have a bilateral mastectomy. My surgeon said I could have sentienel lymph node biopsy in both, one or not at all since they test the tissue. Not sure if I should do. I really appreciate any insight. Thanks!
Comments
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I had bmx after an LCIS finding in multiple areas of both breasts, and like you, BRCA negative. Family history sent me flying to a bmx. Breast surgeon felt that a sentinel node biopsy was called for on one side, because radiology team felt that imaging by another breast center (a fiesta of mamms, duct imaging, and MRIs) left one tiny question about the potential for something lurking behind a papilloma. I asked about lymphedema risk and she pooh-poohed it, telling me that no one in her practice ever gets LE after SNB. I had the SNB, which can mean more than one node; in my case it took 5 in the axilla and one within the breast. And I did develop lymphedema. Had I imagined my real risk of LE (up to 17% depending on the study you choose to believe; the BS apparently chose to believe the 'negligible risk' studies), I would have had some additional imaging and even yet another biopsy, rather than risk lymphedema. Not to say you'd get it, but if that SNB is not justified by some real risk, then I'd think long and hard about doing it. LE is a lifetime condition and it's annoying at best, and life altering if you get a nasty case of it.
There's no free lunch in any of this, of course, and the issue that suggests having the SNB is that if there's no SNB and path of your removed tissue reveals something sinister, you will have full axillary node dissection and that, unfortunately, brings a very significant risk of LE.
I'm biased because of my LE outcome, but I do understand that this is a very hard question. Best wishes as you sort through the options. If you'd like some LE incidence studies, PM me and I'll find some for you.
Carol
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I had the same situation at about your age. BRCA neg, strong family history, LCIS on core bx. I did the bilateral. Really agonized over the sentinel node choice as I was afraid of lymphedema. After bilateral excisional biopsies of anything that registered on MRI, with benign findings, I did the mx surgery without sentinel node bx. No occult cancer was found, so that was the correct choice. Very, very happy.
These days the trend is for less and less node removal. Maybe biopsy the right side spot found on your MRI and make your final choice after that. As I saw it, it was both my arms, the rest of my life. I really did NOT want the sentinel and that's how we went at the end, no nodes out. Remember, the node removal is only for staging and does not improve or extend survival in the case of invasive cancer. You could be treated (and possibly avoid the aux dissection) if they find unexpected invasive. There is a lot going on in this area of research.
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Good morning ladies. I am a newbie to posting but have been roaming this site for the last couple months trying to get up the nerve to post or maybe just gettingup the nerve to face the final decision what to do. The LCIS post has been so quiet for several weeks-wondering where everyone was. I too was dx in May-LCIS and ALH found on biopsy for microcalcifications. Saw BS for path and followup-the usual three options and out the door. So have been investigating every site on what path to follow. And after decision with DH and daughters (and self) will be going to second opinion but will be choosing bilateral mastectomys.
But the question about SNB has been on my mind-thanks ncsord for asking!
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I had a preventive mx for ADH and ALH. A 1.1cm IDC was found in the final pathology. No nodes were taken at the time of the MX surgery. Three weeks post mx, I had a SNB (apparently I needed the three weeks to heal from the mx). One node was taken in the SNB. I don't know how common this is, but in my case it could be done.
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This was an excellent question that I don't remember seeing addressed before. From what I've been reading, it doesn't sound like it's absolutely necessary. Best of luck to you on your surgery.
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farmerlucydaisy, if the breast tissue was gone, how did they decide where to inject the dye? My understanding is that there are multiple pathways from within the breast to axillary nodes, so a dye injection in one spot would travel to one node, and a dye injection in another spot would take a different pathway. I'd be very interested in a diagram or other explanation of how your surgeons knew they'd found 'the' sentinel node. That approach would have saved me from lymphedema, because my path was 100% clear on my prophy bmx. Had I known an after-the-fact SNB was possible, I would have turned down the SNB during my surgery knowing that I wasn't risking the alternative of a broader node dissection if the bmx path was not clear.
Very, very interesting.
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Not an LCIS person here, but in the DCIS world the question of "do I or don't I?" also comes up a lot with regard to sentinel node biopsies.
So often doctors dismiss patients concerns about lymphedema developing from an SNB. They downplay the risk, which is relatively low but not insignificant. It's not like there's only a 1% chance of lymphedema from an SNB; I believe the most favorable study puts the risk at about 5% and other studies suggest the risk is considerably higher, as Carol said, possibly as high as 17%.
They also often don't explain that properly done, an SNB removes any of the nodes that 'light up' from the dye or isotopes that are injected into the breast prior to the procedure. If only 1 node lights up, then it's okay to remove just the 1 node. But if 6 nodes 'light up', you have to consider that if the dye or isotopes can travel so quickly past the first couple of nodes and into 6 nodes, then obviously cancer cells could do the same. So for the SNB to be accurate, the surgeon should remove all 6 nodes. The risk of lymphedema goes up if more nodes are removed. Since SNBs can vary so much in terms of the number of nodes removed, and since there's no way to know how many nodes will need to be removed during an SNB until you are on the operating table, it's misleading for doctors to imply that an SNB only removes 1 node and to quote only the lowest lymphedema risk numbers.
The other problem that many doctors never mention is that even if you never develop lymphedema, the risk remains with you for the rest of your life, so you need to be vigilant for the rest of your life. For many women, this means no blood pressure or blood draws on the SNB side, extra care in how one uses one's hand and arm, extra caution to avoid infection if there's a cut, etc.. etc.. In the scheme of things, it's all manageable, but frankly, it's a pain in the butt. I am fortunate that I don't have lymphedema, but I can't tell you how often I have worried about something related to my right hand or arm in the 7+ years since my surgery. So any SNB can affect you even if you don't develop lymphedema - it's because of all the things you have to do to avoid getting lymphedema.
I had an SNB on just one side - in my case, it was necessary because my excisional biopsy had found a microinvasion of IDC along with my DCIS. I imagine that it must be much more difficult for those who have nodes removed on both sides.
farmerlucydaisy, when you had the SNB after you MX, where did the surgeon do the dye or isotope injection? I recall years ago someone on the board mentioned that her doctor did the injection into her arm, and sure enough, the dye moved into her nodes and lit up one or a couple of nodes, so the sentinel nodes were identified and the surgeon was able to just remove those nodes. I used to mention that situation when I was posting here on the board but over all these years, her's was the only case in which I'd heard of this happening, so I went back to saying "you can't have an SNB after a MX" because it seemed that no other doctor was willing to try something like this.
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Carol, we were posting at the same time, with similar questions.
Your point about there being multiple pathways through the breast tissue to the nodes is an important one. This is exactly the reason why usually there are several injections of dye or isotopes done prior to the SNB surgery, with the injections either surrounding the tumor area, or done all around the nipple. I had 4 injections around my nipple and with each injection, the needle was intentionally aimed in a different direction. After I had the injections, I had to lie (with my arm raised over my head) under this machine (can't remember what it's called) that was able to 'see' the isotopes as they travelled through my breast and into the nodes. The image was displayed on a computer screen that I was able to see. It was fascinating to watch the stream of isotopes from the four injections, each initially heading into a different part of my breast and then all of them turned and moved towards the nodes. I could see that they all came together at the same node so I knew before my surgery that I had a very clear sentinel node. Apparently the isotopes and dye then travelled through that one node into two more nodes - my surgeon removed 3 nodes that each were stained with the dye. That all happened over about 20 minutes.
I found the injections to be very painful (but at least it was quick) but the process was fascinating.
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Beesie, your description of your SNB prep is remarkable! It must have been amazing to watch it happening like that.
During my procedures I often felt as you did, this was such tremendously interesting stuff......if only it were not happening to me!
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Thank you so much for the responses. This sure is not an easy decision however I am leaning more toward not having any nodes removed from the posts and my gut. If cancer is found, I will deal with the next step. My surgeon did say it not to difficult to go back and check nodes after the MX (I do need more detail on what"not too difficult" means)
I wrote to Susan Love's website- great site!
Here's the reponse they gave me......
Thank you for contacting the Dr. Susan Love Research Foundation Website.Because LCIS is not a carcinoma, more a misnomer as it is a risk marker, we usually do not do sentinel nodes when a patient has been diagnosed with LCIS. That being said it is difficult to go back and do a sentinel node after the breast has been removed.If the MRI is negative, then I do not think you need a sentinel node. I would discuss it with your surgeon - if he or she is an experienced breast surgeon, I would do whatever he or she recommends. A sentinel node in an experienced breast surgeon's hands should not involve much more time or result in more side effects. Hope this is clear.The Medical Team at the Dr. Susan Love Research FoundationThanks!
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I was in no condition to ask details, so I trusted my BS. Perhaps they were able to do it based on the location of the cancer from the pathology. All I know is that the tech put in the dye, saw the node light up and said "I got it". Now I'm getting scared again . . . eek!
Didn't Angelina Jolie have the dye put in just in case, but no nodes taken? I wonder how long they can see it. She may have had a pathologist on site.p> -
farmerlucydaisy, usually the dye is injected into the breast before the breast is removed - that's what Angelina Jolie had done. So once the breast is gone....well, that's usually why doctors say an SNB can't be done after a MX.
You obviously had an injection of dye - that's the important part - but where was the injection done? In order words, where did the doctor stick the needle?
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They inserted the dye close to where the lower part of the right upper outer had been, avoiding the expander. The onco wasn't sure it could be done. He said if they went in before it was healed all the nodes would light up, thus the three week wait. The BS was confident he could do it and he apparently did.
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A quick Google search brought this article up, about SNB after mastectomy, and it's very interesting. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2909950/
The article describes one case where SNB was administered from close to a nodule that presented in a woman who had an earlier diagnosis of DCIS and who had had a total mastectomy. She had lymphoscintigraphy first, to see if a lymphatic pathway existed from the nodule (it did). The authors do not generalize to say this is a procedure that should be done; they simply conclude that based on their experience, it seems that SNB is not contraindicated following mastectomy.
Thoughts?
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This article describes 20 patients who had SNB after MX.
http://www.journalacs.org/article/S1072-7515(08)00726-6/abstract
These cases date from a few years ago. I am wondering if the approach is under continued review.
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Carol - Excellent research! Very interesting. Thanks!
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What about the Angelina Jolie method for those doing the PBM. Seems like a great idea, assuming the node is still visible several days post op AND they can get the surgery scheduled. Hmmm therein may lie the problem . . .
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farmerlucydaisy, good question.
Here's a blog post by David Gorski, who generates a lot of controversy in his posts about 'science based medicine' . Gorski is a 'surgical oncologist, Professor of surgery at Wayne State University, and a surgical oncologist at the Barbara Ann Karmanos Cancer Institute, specializing in breast cancer surgery.' He endorsed Angelina Jolie's pbmx decision, but he is a skeptic on the approach her breast center took for the sentinel node biopsy. Here's a link to the full post, followed by what he said about the SNB.
"Finally, more questionable is the use of a procedure known as prophylactic dye injection. During breast cancer surgery, we do a procedure known as sentinel lymph node (SLN) biopsy, which involves injecting (usually) two kinds of dye before surgery: A short-lived radiotracer and a blue dye, both of which are taken up by the lymphatics and head to the first draining lymph node (or lymph nodes) under the arm, known as the axillary lymph nodes. These nodes are removed and checked for cancer. In the old days (about 12 to 15 years ago), we used to remove all the lymph nodes under the arm in a procedure known as axillary dissection. These days, we get the same information (whether the axillary lymph nodes are involved or not) with much less morbidity using the sentinel lymph node procedure. When we do prophylactic mastectomies, however, we don’t know if there’s cancer there. There probably isn’t, although there might be. Consequently, we usually do sentinel lymph node biopsies, in case there is cancer in one of the breasts, because once the breast is gone we can no longer do that procedure, and SLN biopsy is pretty low risk. However, that is not acceptable at Pink Lotus, or so it would appear:
Whenever a breast contains cancer and the armpit lymph nodes cannot be felt on exam, we routinely perform a sentinel node biopsy, which is the removal of the first nodes that receive breast lymphatic drainage. By injecting blue dye into the breast, which then travels to the lymph node(s), we find out if cancer spread beyond the breast. Until now, the trend has been not to perform sentinel node biopsies in conjunction with prophylactic (preventive) mastectomies since the discovery of cancer in breasts removed prophylactically only ranges from 2-8%. Therefore, most women do not want to take the additional risks associated with a sentinel node biopsy, especially since they can have complications, such as pain, numbness, arm swelling (lymphedema), fluid buildup (seroma), limited arm movement, and infection. This dilemma has been resolved with a new technique that was pioneered at the Pink Lotus Breast Center, called Prophylactic Breast Dye Injection, or PBDI. PBDI allows the sentinel node to be identified, but not surgically removed, giving more control and peace of mind to women. I developed this technique while treating Angelina, and I hope other women will now benefit from it. It was at her friendly insistence that I wrote the rationale for it in our blog post, Prophylactic Breast Dye Injection.
If you peruse the rationale published by Dr. Funk, you’ll find that she invented this procedure in February 2013. I’ll actually give Dr. Funk credit. PBDI is actually not a bad idea. In fact, in concept, it’s a pretty good idea. However, by Dr. Funk’s own admission, it’s also a new idea thought up by her while treating Jolie that is completely unproven. (One wonders whether Jolie balked at bilateral SLN biopsy.) Hence, from my perspective it is irresponsible to promote PBDI in the context of Angelina Jolie’s surgery given that, also by Dr. Funk’s own admission, there is no evidence for the superiority (or even non-inferiority) of the procedure compared to standard sentinel lymph node biopsy. She even includes a disclaimer:
Disclaimer: We at the Pink Lotus Breast Center have started using the PBDI technique very recently. It is currently unknown which factors influence the precise length of time that the dye remains in the sentinel nodes. Further studies in that regard are needed.
In that case, Dr. Funk and colleagues should be doing preclinical trials in animals and clinical trials in humans to answer the question of what factors determine how long the dye persists in the sentinel nodes and why, not offering this procedure to, in essence, any woman undergoing prophylactic mastectomy."
So, Dr. Funk is either groundbreaking or irresponsible, depending on your viewpoint. It sure would be wonderful if the procedure she invented could be demonstrated to work through legitimate trials and long-term follow-up.
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Seems like Dr Gorski's thoughts are exactly right. Exciting stuff though.
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Hello,
Thanks again everyone for your input. Just to update, I had the BLM two weeks ago and I did not have the sentinel lymph node biosepy. My BS felt it was the right decision for me and said she does not recommend biosepy anymore for LCIS. So far, everything is going well. I did have LCIS in both breasts. My implants feel strange but so far doing well. I am thrilled to have this over, even though I need to stay on top of this the rest of my life, I feel it was the right decision for me. Thanks and all my best to all of you.
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ncsord, it's great that you have the surgery behind you, and now it's just a matter of patience and time. Wishing you an uneventful continued recovery!
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Ncsord - I am so very happy for you! Yay - the big monkey (gorilla) is off (mostly off) your back!! As Carol says - happy healing. I'm a year out from the exchange and I rarely notice the implants - it is just the new normal.
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So happy for you! Is all they found LCIS, nothing worse? If so, that is really great.
What follow up will you be requiring now for ongoing surveillance? Will you take tamoxifen?
I don't take anything, just see my surgeon 1x per year for 5 years.
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Ladies, I realize this thread has not been active in a while but perhaps someone will see this and have an opinion. I have LCIS and am seriously contemplating PBMX. My surgeon has informed me that she would perform a SNB on the affected side. I'd really like to push back on this. I see the links to the studies in the earlier posts. My question is has anyone here gotten a lot of flack from their surgeon (along with a sound explanation as to why) if they have indicated they not want the SNB done? I would much rather have a 2nd procedure for SNB only if it's found to be necessary based on the pathology from the MX. Thx.
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The procedure involves injecting tracer through your nipple, so unless your doctor can somehow do this and place a marker during your surgery their is no way to go back and do it after the breast is gone.
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Hi Melissa. Did you read the studies that were posted on the earlier threads (one from '08 and one from '10)? They seem to describe in detail that SNB after MX is not contraindicated. It's been done, in some cases long after the MX had been performed (in the case of a suspected cancer recurrence). There may be differing opinions as to how reliable that is. I don't know. That's what I'd like to question my surgeon on.
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I know, I understand that there are a few places doing this, which is great. I just didn't think the procedure was very widely available. I hope they can do that for you
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