Surgeon Vs. Dr. Lagios? Battle of the opinions
Hi All,
I wanted to give you all a review of utilizing Dr. Lagios service and seek your opinion.
I had my first lumpectomy roughly 30 days ago and the margins did not get clean. I was told since a few of the margins did not get cleared it meant the DCIS is larger than imaging shows. How large? They do not know. Imaging showed about 8mm of DCIS activity. The surgeon scheduled me for a second lumpectomy which is scheduled to take place in a few days. FYI I have very large breasts (DD), not dense according to the surgeon.
I had a second opinion with Dr. Lagios to see what he thinks and if I truly do need a second surgery. First he is a very nice and kind person who really tries to provide answers to your questions backed by facts and data. I had loads of questions and he answered them all! He is very well known in the DCIS community and he would be someone I suggest as a pathology opinon for. His service cost $635 which was not covered by my insurance since I have Kaiser.
He received all my imaging (mammo, biopsy, pathology slides from lumpectomy) and analyzed it. He confirmed I have high grade DCIS, no invasiveness found. He did say radiation is recommended for my case since it is high grade. He also said the imaging does not show an accurate size and maybe my DCIS is really around 15mm. Could be bigger? Sure. But no way to know yet.
He stated that my Van Nuys Index score is 10. The reason is because of three factors: my age early 50s, the grade being high and the margins being unclean. All these factors gave me a score of 10. He said when I do a second lumpectomy I need at least 3mm of clean margins so that way my Van Nuys score can reduce down to 8. Age and grade cannot be changed, but margin quality can be changed and that allows the score to go down. With a score of 8 reoccurence is at 13% per 12 year interval.
My main question to him was whether it is wise to have a second surgery done as the surgeon is suggesting. He said I should not undergo another lumpectomy in a few days. He stated my breast needs more time to heal. He said to let it heal for now and before any surgery is done I will need to have an MRI and mammogram done. He believed that an MRI will pinpoint the exact size of the DCIS so next time the surgeon can perform a more successful surgery and get the margins clear, instead of doing a blind surgery like what was done the first time. He suggested a second surgery be done in 2 months. His analysis makes sense to me. It is reasonable to give the breast time to heal and it makes sense that the MRI could give a better sizing of the DCIS so that next time the surgery would have a higher chance of success.
I relayed Dr. Lagios conclusion to my surgeon and she was absolutely against his analysis LoL! Basically called him outdated and not abiding by standards of practice and incorrect in his report. Said the surgery needs to be done on time, because some surgical cavity exists there that will help accurately take everything out and waiting until a couple months will cause stuff to be left behind. Also that my pathology results do not qualify me for an MRI and the most recent data say only 2mm of margins need to be clean not 3mm. So surgeon will not do any MRI on me and wants the surgery to be done as scheduled in a few days. There was a big dismissal of Dr. Lagios report from my surgeon, granted Dr. Lagios has 30+ years of experience in this whereas the surgeon only has 10 years and works in general surgery. The surgeon said something to the extent of "he is not a surgeon and I know better." Yea....ok....
I didnt know what to do and I did not want to go back and forth between her and Dr. Lagios. Obviously my surgeon is convinced that Dr. Lagios is not accurate in his assessment. Am I making the right decision by accepting her advice to go ahead with the surgery? I have no power to change her mind and the surgeons at kaiser will all regurgitate the same standard words so going to another surgeon isnt going to help me. They are going to agree with my surgeon because they are all on the same team part of the same organization.
I did my due diligence and got a second pathology opinion, the surgeon was given a possible route so that a better success rate could happen next time and the surgeon refused this route and dismissed it. I have done my duty and job, now the burden is on the surgeon's shoulders. I dont know what else to do or who to turn to. I feel helpless because the surgeon says one thing and Dr. Lagios says something else and my main worry is to get clean margins this time to prevent a 3rd surgery. Would you all have accepted the 2nd surgery just as I am doing now to get it over with or would you have kept pushing to delay the surgery and get an MRI.
(Dr. Lagios report was still worth it!)
Thanks!
Comments
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Wow! That is quite a hard place to be in. I cannot tell you what to do, but my story may help. I, too had a lumpectomy for DCIS. The margins were not clean and I had a re-excision 3 weeks later. The margins were still not clean. DCIS can be tricky that way. I had an MRI prior to the first surgery and it was not too helpful. My surgeon offered a 3rd surgery, but wanted another diagnostic mammogram to look for more calcification at the margins. They ended up finding more locations of DCIS and since I have small breasts, that meant no more lumpectomy. I have no options now, but I do wish we had known what we were dealing with before the additional surgery instead of just going in blind and hoping for the best. So, I agree that more diagnostics before surgery would be wise, but every single situation is so different, how can you know? I am sorry you have to anguish over this! I remember the feeling well! Hoping you find an answer that you can feel peace about! Prayers!
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Thank you Beachmama! Exactly! You said it! "Just going in blind and hoping for the best." Blind surgery and hoping for the best never helped anyone. How could a surgeon choose to do a blind surgery on something so detrimental to a woman's livelihood and state of mind? Surgeons have the tools to help them. Yet they choose to do something blindly than to use the tools. What sense does that make? How many hundreds if not thousands of women had to have 2nd, 3rd and even 4th lumpectomies due to the refusal of their surgeon to use proper resources to identify the DCIS and the end result is a MASTECTOMY! The standard response is we dont do MRIs, you dont qualify, your breasts are not dense, you will get false positives. It seems like they love to deny a womans right to being cured so that she will have to do more and more surgeries. Perhaps this is how they make their money! To make you believe that having more imaging wont help you and you dont need it so you can keep doing more surgeries.
Its like say you have a patient with cirrhosis of the liver with progressive liver failure, this is a gold mine for a Hepatologist (a medical specialist in liver disease). The patient will make multiple outpatient visits, have many billable procedures like drainage of fluid from the abdomen, endoscopy etc. There will be many hospital admissions as complications of cirrhosis develop repeatedly.
If such a patient is referred for a liver transplant at an appropriate time then a liver transplant can be done safely and with good outcomes. However, the patient is unlikely to need the services of the Hepatologist after transplant. The goose will lay no more golden eggs.
The alternative, of course, is to continue with futile medical management until the patient is close to death. At that point when the "goose" is nearly dead, the word 'transplant' can be safely uttered. Unfortunately, now the patient is too sick to have a safe transplant. If a transplant is offered as a desperate measure to try and save a dying patient, the risk will be high and the success rate of such transplants will be low. This will further reinforce the Hepatologist's view that liver transplant is a risky operation, not to be offered except under threat of imminent death.
At the other end of the spectrum is the 'hungry' surgeon who is in a competition for numbers since his income is directly linked to the number of transplants he performs. He may see a patient with cirrhosis of the liver but good liver function who does not need a transplant. He manages to persuade the patient to have a 'prophylactic' transplant "don't wait till you are so sick that transplant becomes risky".
Unfortunately what he fails to tell the patient is that at this time, transplant is actually more risky than waiting.
I am not suggesting imaging is 100% successful but thats all we have today to help us! Thats all we've got it! Why not use it at least? Even if it may not be totally accurate at least this way they would have done everything in their power to identify the DCIS and make the patient feel at ease. I would feel more comfortable if the surgeon used proper imaging and failed than if they used nothing at all and relied on this phony hope they use! Imagine having a bullet stuck inside you and the surgeon has a machine that can help him locate the bullet. The machine may not be 100% accurate but its close enough. Closer than relying on blind surgery. Yet the surgeon says let me just try to locate the bullet on my own and hope for the best! What?!?! LoL
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Camille - sorry you have been through the wringer. So this Dr. Lagios is NOT a surgeon? Is he a medical oncologist?
My surgeon requested a CT with & w/o contrast after my diagnosis of DCIS by Ultrasound biopsy. That is a pretty standard test. Lots of insurance companies resist jumping directly to an MRI. In any case, what my doc saw on the CT determined that she wanted to see an MRI, again with & w/o contrast to compare the two tests. And that determined my choice - BMX. Note - she particularly wanted the pinpoint imaging of the CT. Note - an MRI can have false positives. Note - until the surgeon opens you up, there is no way to be sure of the size & each different scan can come up with a different size ahead of time.
Has anyone given you your ER/PR numbers? Did they do SNB (serial node biopsy)? Maybe you can get a CT first? Or consult with a different surgeon since you have lost confidence in this one.
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Camille, it sounds as though your surgeon is upset that you got a second opinion. That doesn't speak highly of your surgeon.
Dr. Lagios is pretty much THE EXPERT on DCIS, with decades of experience, so I'd put a lot of weight on what he said. Your surgeon's comment about 2mm being an acceptable margin vs. Dr. Lagios saying 3mm is a minor issue - there has never been agreement among doctors on the size of an "acceptable" margin; some research studies have even suggested that any amount of clean margin, even a fraction of a mm, is good enough, while other studies have found that larger is better. The difference between 2mm and 3mm is a minor quibble.
The idea of having an MRI after a first surgery with involved margins is not revolutionary - it's pretty common, in fact (more so than CT scans, at least from what I've seen here on this board). I was diagnosed almost 12 years ago; there were no clean margins after my first surgery. My first surgeon immediately wanted me to proceed to having a MX, which was not something I wanted. So I went for a second opinion. The first thing my second opinion surgeon did was schedule me for an MRI to see if he could get a better idea about how much DCIS might be left in my breast. The MRI showed that my entire breast was full of "stuff" (that's the word that my surgeon used since there was no way to know for sure if it was all DCIS until the surgery was done) and that convinced me that a MX was necessary. The pathology from my MX proved the MRI to be correct - my breast had been completely full of DCIS.
Because of the scheduling of the MRI and because I wanted immediate reconstruction with my MX, which required meeting with a plastic surgeon and coordinating the schedule between the breast surgeon and the PS, it turned out that I waited 2 1/2 months between my first surgery and my mastectomy surgery. My surgeon had no concerns at all about that delay - and would have had no concerns even if I'd opted for a lumpectomy rather than the MX (he did give me that choice, even after the MRI results). I know many women from this board who've had this type of delay between their first and second surgeries. From imaging, your surgeon should know exactly where to operate the second time; if there is a concern, I would imagine that a marker could be placed now in the location where it's known that the margins are involved.
Not sure why MinusTwo asked about the SNB (sentinel node biopsy). SNBs are not required nor recommended for women who have pure DCIS and who are having a lumpectomy. Checking the lymph nodes using an SNB procedure is necessary for those who have invasive cancer, but since no invasive cancer was found in your first surgery, the odds that any will be found in your second surgery are very low. So if you have not had an SNB yet, I can't imagine why it would be necessary as part of the second surgery, if you end up having a re-excision lumpectomy (there are other issues related to having a MX that sometimes lead to the decision to have an SNB with the MX).
To MinusTwo's point, is there any chance that you can find another surgeon who will be more agreeable to the recommendations from Dr. Lagios?
Here is a link to the NCCN Guidelines, Physician's Version. These are the gold standard guidelines used by most cancer facilities in the U.S. and Canada. You do need to sign on with them to get access, but it's worth it because it's great information - there is also a Patient's Version, but it has much less detail. What you want to click on is the PDF for Breast Cancer, in the drop down menu under NCCN GUIDELINES FOR TREATMENT OF CANCER BY SITE.
- You'll notice in the discussion about DCIS, starting on page 9, they do mention an MRI as an optional diagnostic test (but no mention of a CT Scan), although they note "the use of MRI have not been shown to increase likelihood of negative margins" and go on to say that "Data to support improved long-term outcomes are lacking".
- Also on page 9, you'll notice that in presenting the surgical options, they state "Lumpectomy without lymph node surgery" and further explain this in more detail in one of the notes.
- On page 11, in the discussion about margins, they mention a minimum acceptable margin of "at least 2mm".
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Hope that helps!
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Beesie - thanks for all the data. I did have SNB on both sides with DCIS, although maybe because I had a BMX instead of an LX. Or maybe because I had an MO contact who pushed the BS to do that even though it was clearly DCIS.
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Saw a lecture last spring by the chief breast cancer surgeon at UCLA—where the definition of “clear margin” is “no tumor on ink.”
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Camille,
Dr. Lagios is in California and, as Beesie mentioned, is pretty much THE expert on DCIS. The chances are that he knows docs in the Kaiser system (also mostly in California), and has been attending meetings and conferences with them for years.
So he may be able to direct you to docs at Kaiser who would be more receptive to his recommendations. I don't now what the rules are about changing docs within the Kaiser system.
At any rate, I wouldn't give up without calling Dr. Lagios' office and asking for a referral to a Kaiser physician.
HTH,
LisaAlissa
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MinusTwo, yes, having a MX rather than a lumpectomy would mean that an SNB likely will be done even for someone who is diagnosed with DCIS. Did you have bilateral breast cancer, or did your scans show concerning areas in your non-cancer breast? If not, I don't know why your doctors would have done an SNB on the prophylactic side. In any case, Camille had a lumpectomy, and her second surgery is likely to be a re-excision lumpectomy, which means that an SNB is definitely not required nor recommended for her. Most doctors agree that when doing a lumpectomy on someone with pure DCIS, there is no point in putting the patient at risk of lymphedema unnecessarily.
ChiSandy, it's true that some studies have shown that no tumor on the inked margin is sufficient to be considered a clear and adequate margin. But many other studies have shown that recurrence rates are higher for those with such narrow margins. That's why, I suspect, that Dr. Lagios and the NCCN Guidelines continue to suggest that 2mm or 3mm margins are necessary. When the data isn't completely consistent and clear, my choice would be to opt for the more conservative approach, so personally I wouldn't want to have my surgery done by the UCLA surgeon you saw at the lecture.
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I have no doubt about Dr. Lagios advice. The reason I chose him is because of the wonderful reviews women on this site gave him. I found him to be spot on in his analysis!
I agree 2mm or 3mm clean margins is a small difference and not a big deal, but my surgeon made it sound like 3mm of clean margins is very wrong and 2mm is the right number.
Dr Lagios told me the exact thing as Beesie said: "From imaging, your surgeon should know exactly where to operate the second time; if there is a concern, a marker could be placed now in the location where it's known that the margins are involved."
My thing is my surgeon is refusing to do an MRI as if shes gonna pay for it out of her pocket LOL. Whats the deal....wouldnt you as a surgeon want to know what other stuff is lurking in the breast anyway? This gross refusal of allowing women to get MRIs is beyond my comprehension.
My surgery is scheduled in 3 days! I accepted it, since I didnt know what else to do. The surgeon's response to the report of Dr. Lagios was adamantly discouraging postponing the surgery like Lagios said. She was practically begging me to keep the surgery date and do it. At that point I just complied and didnt make any fuss.
Regarding seeing other surgeons at Kaiser: when I was told I had DCIS, Kaiser paired me with a surgeon. This was way before any lumpectomy happened. I listened to the 1st surgeons views and decided to get another surgeon's opinion. I listened to the 2nd surgeon and decided to get yet another opinion. I went to a third surgeon (my current one now) and listened to her opinion. At the end of my appointments with all three surgeons all said the same exact things. I wrote down the same questions and asked them all - the result was the same rhetoric spoken by them all:
- When asked about MRI all three stated that MRIs are not needed before a lumpectomy and that MRIs lead to false positives.
- When asked about radiation all three said I needed it no matter what (remember they dont even know my pathology result at this point since they havent done any surgery on me yet they say I need radiation beyond a reasonable doubt LoL) .
- When asked about whether or not I can do an MRI after radiation basically 6 months Mammo and 6 months later MRI they too denied this and stated mammogram is sufficient enough. So all of them had the same things to say.
At that point I stopped seeking more opinions because I knew the Kaiser system feeds its surgeons certain standards and they echo the same standards to all their patients. So I stuck with the last surgeon. I hope you know why I am hesitant to go with another Kaiser surgeon now because whoever I go to will prob deny me an MRI and repeat the same sad & sorry words of all these surgeons. Plus Im afraid if I go to another surgeon and they refuse MRI and do a blind surgery again they will fail since they didnt perform the first surgery and dont know the right area like my current surgeon does. They might say "whoops sorry since I didnt operate with your first lumpectomy I had a hard time getting all the margins clean and finding the area, you know I cant see the DCIS with my eyes".....
I guess I am forced to just do this second lumpectomy and be like a sheep led to the slaughter.... No surgeon at Kaiser will want to give me an MRI. My insurance is Medi-Cal which is for low income people in southern Calif. My surgery was covered in full and every service I get at Kaiser is fully covered by my insurance. Maybe thats why they are against MRI or other imaging.
Side note: Do you know my surgeon did not even have the decency to schedule me for a followup after my first lumpectomy? I got no followup. The followup will be on the day of my second surgery lol. They told me the surgeon is super busy and has no time to see me for a followup. Imagine, you cannot even be seen after you get a piece of your breast taken out because your surgeon is too "busy" for you. I felt like they did the surgery on me and threw me away in the trash and never cared enough to give me a followup. When I told my husband the surgeon is too busy to see me he said the reason she is busy is because she always fails on her first lumpectomies and her patients have to keep coming back for 2nd and 3rd ones so of course she is fully booked.
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I'm not in the Kaiser system, but my original BS was all set for lumpectomy following biopsy and it was the radiologist who was set to place the locating wires who stopped it the morning of and stated we needed MRI first. And thank heavens he did as MRI ended up showing IDC in the other breast that didn't show on mammo. I'd say if you have info from the NCCN guidelines recommending MRI like Lagios said, I'd cancel the surgery, call Lagios for a Kaiser referral (he may be willing to talk with the Kaiser doc beforehand especially if they know each other), and go from there. I wonder if you could possibly get a different answer at a Kaiser doctor a couple cities away from where you are-sometimes if they're too close physically to each other it can present a problem as they have to see each other at meetings and stuff and you're asking them to counter what a close colleague has recommended. They could also be on the same surgical review board and have been involved in the decision on your case and therefore have to keep the party line. (Those death squads everyone was so scared of under Obamacare? They existed before then and still do today-they are medical case review boards bigger institutions use to decide the fate if each patient based on disease, comorbidities, age and cost). if that doesn't work, I know you've already paid out of pocket for Lagios, maybe pay to see an out of network surgeon and get another opinion and see if they agree on MRI, and if so, submit that plus Lagios' recommendations, and NCCN guidelines to Kaiser surgeons and/or corporate or HR for an appeal. With that much ammo coming at them they may start worrying about a complaint to the insurance board, medical board and/or a lawsuit. At that point paying for an MRI is peanuts to them
You have just as much control over whether that surgery happens as they do. I'd cancel it (and if course reschedule when you have the answers you need.)Shoot, if you wanted to, you could probably turn around and say sorry I've opted for BMX instead and they'd have to honor it. Don't ever forget that you are in charge of your own health no matter what they say. Good luck!
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(1) MRI in DCIS:
Re: "I'd say if you have info from the NCCN guidelines recommending MRI . . ."
As Beesie already noted, NCCN guidelines do not "recommend MRI" as routine in the work-up for DCIS, but expressly provide MRI is "optional" (case-specific).
In particular, regarding work-up for DCIS, the NCCN guidelines for Breast Cancer (Professional Version 2.2017, Chart DCIS-1) applicable to DCIS indicate (emphasis added):
>> "Breast MRI [c,d] (optional)"
Footnote (d) reads: "The use of MRI has not been shown to increase likelihood of negative margins or decrease conversion to mastectomy. Data to support improved long-term outcomes are lacking."
(2) Differing recommendations re Margin Size
With DCIS, the goal of local treatments is to reduce the risk of same in-breast recurrence (ipsilateral recurrence), about half of which are invasive disease. Margin size is one of the factors that can impact recurrence risk profile. As noted in the NCCN guidelines for Breast Cancer (Version 2.2017):
>> QUOTE: "Whole-breast radiation therapy following lumpectomy reduces recurrence rates in DCIS by about 50% [a relative risk reduction]. Approximately half of the recurrences are invasive and half are DCIS. A number of factors determine local recurrence risk: palpable mass, larger size, higher grade, close or involved margins, and age <50 years."
As far as the differing advice between 2 versus 3 millimeters, I believe this reflects at least in part reliance upon differing studies and/or frameworks underpinning the advice provided by Dr. Lagios versus by the breast surgeon.
Dr. Lagios: "He said when I do a second lumpectomy I need at least 3mm of clean margins so that way my Van Nuys score can reduce down to 8. . . With a score of 8 reoccurence is at 13% per 12 year interval." This advice from Dr. Lagios appears to be founded upon on application of the Van Nuys index. A margin size of (3 mm) appear to be recommended to achieve a specific Van Nuys index (8.0), which he advises correlates with a particular recurrence risk.
Of course, there are a number of clinical trials and studies available that can be used to inform medical advice regarding adequate margin size for DCIS, such as those underpinning the recent 2016 SSO/ASTRO/ASCO guideline. The Surgeon emphasized that "the most recent data say only 2 mm of margins need to be clean." Her advice that a 2 mm margin would be adequate is likely based on current clinical consensus guidelines, and thus upon the trials and studies which underpin these guidelines. Indeed, the 2016 SSO/ASTRO/ASCO guidelines for those with DCIS who received breast conserving surgery (lumpectomy) and whole breast irradiation take the position that:
>> QUOTE: "A 2 mm margin minimizes the risk of IBTR [ipsilateral breast tumor recurrence] compared with smaller negative margins. More widely clear margins do not significantly decrease IBTR [ipsilateral breast tumor recurrence] compared with 2 mm margins."
In view of the above, those with 2 mm margins should not be unduly concerned by Dr. Lagios' more conservative, case-specific recommendation above.
In addition, in my layperson understanding, 2 mm actually do not "need to be clean" in every single case. The panel's choice of the 2 mm threshold reflects multiple considerations, and is NOT mandatory in all cases, as explained in the guideline:
>> QUOTE: "The choice of the 2 mm threshold rather than > 0 (no ink on tumor) or 1 mm was based upon evidence of a statistically significant decrease in IBTR for 2 mm compared with 0 or 1 mm in the frequentist analysis (OR 0.51, 95% CI 0.31-0.85; P = .01) coupled with weak evidence in the Bayesian model of a reduction in IBTR with the 2 mm distance compared with smaller distances (ROR 0.72, 95% CrI 0.47-1.08). However, while the MP [multidisciplinary margins panel] felt that there was evidence that the 2 mm margin optimized local control, clinical judgment must be used in determining whether patients with smaller negative margin widths (> 0 or 1 mm) require re-excision. Factors felt to be important to consider include assessment of IBTR risk (residual calcifications on postexcision mammography, extent of DCIS in proximity to margin, which margin is close [i.e., anterior excised to skin or posterior excised to pectoral fascia v margins associated with residual breast tissue]), cosmetic impact of re-excision, and overall life expectancy. The conclusion that re-excision could be selectively used with margins smaller than 2 mm was influenced by the high long-term rates of local control reported in the NSABP DCIS trials which required a margin of no ink on tumor[7] as well as the study of Van Zee et al which, after adjusting for multiple covariates, found no difference in risk between margins of ≤ 2 mm and more widely clear margins in patients receiving WBRT.[22]"
Thus, it appears that the question of adequate margin size in the individual case entails a personalized risk/benefit analysis, made in light of multiple factors that affect ipsilateral breast tumor recurrence risk, and patients should receive case-specific medical advice.
(3) Evolution of Clinical Consensus Guidelines for Margins in the Setting of DCIS Treated by Lumpectomy and Whole-Breast Irradiation:
2016 versions of the NCCN guidelines for breast cancer indicated that "substantial controversy exists regarding the definition of a negative pathologic margin in DCIS."
ASCO stepped in and conducted a systematic review and meta-analysis, which led to publication of the following SSO/ASTRO/ASCO guideline in November, 2016:
Morrow (Nov. 2016), "Society of Surgical Oncology–American Society for Radiation Oncology–American Society of Clinical Oncology Consensus Guideline on Margins for Breast-Conserving Surgery With Whole-Breast Irradiation in Ductal Carcinoma In Situ":
SSO/ASTRO/ASCO guideline (2016): http://ascopubs.org/doi/pdf/10.1200/JCO.2016.68.3573
Regarding a "positive margin" in this setting, the SSO/ASTRO/ASCO panel took the position that:
>> QUOTE: "There is no debate that a positive margin, defined as the presence of ink from the specimen surface on ducts containing DCIS, implies a potentially incomplete resection and is associated with a higher rate of IBTR [ipsilateral breast tumor recurrence]."
>> QUOTE: "This increased risk [from a positive margin] is not nullified by the use of WBRT [whole-breast radiation therapy."
Regarding various margin sizes in this setting, the SSO/ASTRO/ASCO panel took the position that:
>> QUOTE: "Margins of at least 2 mm are associated with a reduced risk of IBTR relative to narrower negative margin widths in patients receiving WBRT. The routine practice of obtaining negative margin widths wider than 2 mm is not supported by the evidence."
However, as per the text quoted above, "while the MP [multidisciplinary margins panel] felt that there was evidence that the 2 mm margin optimized local control, clinical judgment must be used in determining whether patients with smaller negative margin widths (> 0 or 1 mm) require re-excision."
In early 2017, NCCN updated their guidelines, adopting the view of SSO/ASTRO/ASCO. For those with DCIS treated by lumpectomy plus whole-breast irradiation, the current version of the NCCN guidelines (Version 2.2017, dated April 6, 2017; Chart DCIS-A) states:
>> QUOTE:
"MARGIN STATUS IN DCIS [treated by lumpectomy plus whole-breast irradiation]
The NCCN Panel accepts the definition of a negative margin as "No ink on the tumor," from the 2016 SSO/ASTRO/ASCO Consensus Guidelines on Margins.
For pure DCIS, margins of at least 2 mm are associated with a reduced risk of ipsilateral breast tumor recurrence (IBTR) relative to narrower negative margin widths in patients receiving WBRT [whole-breast radiation therapy]. The routine practice of obtaining negative margin widths wider than 2 mm is not supported by the evidence. DCIS with micro-invasion (defined as no invasive focus >1 mm in size) should be considered as DCIS when considering the optimal margin width."
The NCCN guidelines are available at no cost with free registration at:
Note that the Discussion section of the NCCN guidelines is under revision and has not yet been updated to conform with the updated treatment algorithms in the charts (including Chart DCIS-A quoted above).
I am a layperson with no medical training. All outside information and understanding of such information should be confirmed with your team, to ensure applicability and receipt of accurate, current, case-specific professional advice.
BarredOwl
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ok so here's what I found out when I posed your issue to a surgeon at work today- they would want to do the MRI to ensure that the dirty margins were not because of transecting another area of DCIS that could later develop into IDC that just didn't show up on mammo. MRI is more sensitive and would give them the best view possible. Of course you'd also find this out potentially if you had the re-excision without MRI and those margins came back dirty too.
I am living proof mammos do not always pick up bc. Mammo showed nothing going on in right breast and only calcifications in left breast. One MRI later (that the radiologist pushed for) and I have a bc diagnosis of DCIS & IDC in the right breast. I'd want to be sure the dirty margin isn't due to transecting another are of DCIS and you may want to ask the surgeon how they can be sure of it without the MRI since they can't see it with the naked eye
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I agree with Lula. I had IDC that wasn't visible on mammogram and was very hard to see on ultrasound even though they were consulting the MRI, which showed it clearly.
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I am just going to do the 2nd surgery tomorrow. I am crunched on time and cannot go researching other surgeons now. Each surgeon is gonna give me his philosophy and feed me promises and medical protocol! I feel obligated to do the surgery and my surgeon made it sound like I really need to do it as scheduled and not cancel. Perhaps failing again on this surgery will motivate her to do an MRI? But why wait until failure?
I dont have another game plan lined up. I feel optionless. I dont know which other surgeon in Kaiser can help me. So far 2 other surgeons said no MRI needed and my current surgeon is being hard headed about an MRI. Dr. Lagios suggested Mel Silverstein who does MRIs, but hes too far away about 1.5 hours north in newport beach I think and my insurance doesnt cover non-kaiser doctors. You guys said the NCCN guidelines dont require an MRI and dont make it mandatory (it is optional) and thats probably what my surgeon is gonna use as her defense if I bring it up. By refusing an MRI, i feel like they are intentionally saying my life is cheap and not worth the extra imaging.
My surgeon didnt even say I could get a second opinion or ask someone else, she just said not to cancel and to do it....Kind of lame, but it is what it is I guess.
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Dear CamilleXO, I hope your surgery went well and your recovery will be swift. Just a thought, maybe do the MRI with and without contrast as a cash patient. If you go to an outpatient imaging center where the radiologist's fee is included in addition to the imaging cost and not a hospital based imagining center where there will be 2 separate and higher cost bills for reading the imaging and taking the images, I think you should be able to get the MRI done for under $1,000 dollars. Of course you would want to verify that the facility does have a radiologist who specializes in breast readings and I noticed the larger outpatient centers do have breast specialists on staff because breast imaging via mammograms and ultrasounds are common enough. $1,000 isn't small change but maybe for the piece of mind and to provide to Kaiser a baseline of your current status, it may be worth it.
I don't have Kaiser but I have heard that they have a grievance procedure in which you can ask for a consult with an outside Kaiser provider and I believe it would probably work better if you request a consult from a teaching hospital/tertiary medical center vs a private/group provider. In Southern CA, tertiary centers would be like UCLA, USC, UCI, Loma Linda, and UCSD.
When doctors refuse to budge, then the alternative may be to work around them...wishing you speedy recovery!
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Hey Guys,
I am back to update you on my second lumpectomy I had this week. My surgeon left a voicemail to tell me that the surgery went well BUT ONE margin was still not clear and that they supposedly found another 4mm of DCIS. Hmmmmm....isnt this more proof I need an MRI? But thats none of my business, right......When she said that I died. I was so upset because she totally was against Dr Lagios report and she refused to accept Dr. Lagios and called him OUTDATED and INCORRECT in his evaluation of me. Here we go again, needing to do another surgery because of "blindness". When Dr. Lagios began assessing DCIS cases, my surgeon was not even born yet, but she thinks he is wrong...ok! I think its time for me to insist on an MRI now and I refuse to do any more blind surgeries. I did the 2nd surgery out of hopelessness and feeling pressured, but now the game plan has to change. I have a followup scheduled with the surgeon in 3 days and I am going to plead for an MRI. I cannot do anymore blind surgeries. This is just crazy!! When she refused to do an MRI before the 1st lumpectomy, I complied and said fine, when she refused to do it for the 2nd lumpectomy, I complied and said fine, now for the third one I dont think I need to comply again, enough is enough.
The surgeon said she has only had to perform a 3rd lumpectomy only twice in her career, this is laughable because I am now her third case.
Questions:
1. What do I do if she continues to refuse an MRI when I see her again this week? Do I need to go hunting for other surgeons at Kaiser who will accept an MRI? It may take me a while before I find someone. You know with appointments and consultations it will take time.
3. Or just give up and do as Heartdesire above suggested about paying for my MRI out of pocket. UCSD medical university is here, I could go there and see the price, but first should I try to get an MRI by fighting for it?
PS: What other articles and research can I use to prove my case. The NCCN guideline thing you guys suggested said MRIs are optional so that may not help me.
Thanks for your love and support
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Camille, so sorry that you need another surgery!
What do I do if she continues to refuse an MRI when I see her again this week? Do I need to go hunting for other surgeons at Kaiser who will accept an MRI? It may take me a while before I find someone. You know with appointments and consultations it will take time.
- If she refuses, find another surgeon. You have the time. You now have the experience that shows that Dr. Lagios was correct in his assessment and recommendations, which means that your surgeon was wrong. She was wrong about the MRI and she was wrong about pushing you so quickly into the second surgery. If she suggests again that there is urgency, then she's wrong again. As I mentioned in my earlier post, I waited 2 1/2 months between my excisional biopsy and my MX - and I had extensive high grade DCIS, lots of dirty margins, and a micro-invasion had already been found in the middle of all that DCIS. Yet my surgeon (head of breast cancer surgery at one of the world's leading cancer hospitals) had no concerns about the delay. And he was right. My MX found lots more high grade DCIS, which was all in my breast for those 2 1/2 months, but there were no further areas of invasion, no positive lymph nodes, no negative implications at all from the delay. (As a side note, my take away from 11+ years on this board is that the surgeons who worry about delays with DCIS are surgeons who don't know much about DCIS and don't understand the distinctions vs. invasive cancer. Anything I can recall ever reading from a surgeon who is an expert on DCIS says that the patient has time to make a decision and can wait months with little to no risk.)
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Or just give up and do as Heartdesire above suggested about paying for my MRI out of pocket. UCSD medical university is here, I could go there and see the price, but first should I try to get an MRI by fighting for it?
- You do have the time to fight for the MRI, but if you are concerned about that or don't want to do it, paying for the MRI yourself is an option. That's a financial question that only you can answer. The bigger question is whether you surgeon would even look at the MRI results, if she doesn't want you to have one. Personally I would find another surgeon before trying to get an uncooperative surgeon to agree to use a test that she didn't want done and refused to order.
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No time now to search for any research for you but I'll see later if I can find anything. But about the NCCN guidelines... when they say that an MRI is optional for those with a diagnosis of DCIS, I believe that they are talking about diagnostic tests at the time of initial diagnosis. At this point, after two unsuccessful surgeries, your situation is very different and any responsible surgeon should want to do anything they could to ensure that the next surgery is successful. If your surgeon doesn't agree, find another surgeon.
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I would talk to insurance. Tell the front line person right away that you need to talk to a supervisor, and then tell the supervisor that the front line person did nothing wrong and you are not complaining but needed to talk to someone with authority. Also tell the supervisor you will put this all in writing.
Ask for permission to see a surgeon outside of the Kaiser system. Then see whoever Lagios recommends, or whoever your research finds. Explain the whole story and how you have tried to cooperate with the Kaiser surgeon after requesting and MRI, but that the failed margins the second time shows that the non-Kaiser MD was right. Tell the supervisor you are concerned there is extensive DCIS that is not being revealed by mammo and surgery. Insurance will lose more later if this is true.
I absolutely agree that MD's in the same system or even who know each other well, will have the same opinions. You need a truly independent doctor. Kaiser MD's may even see agreement with an MRI now as admission of fault. I think you are wise not to trust them.
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I am a long time Kaiser patient and have been living well at stage IV for 6 years. My bc circumstances are very different than yours, but I can speak to the Kaiser experience. I did not find that the docs within the Kaiser system all agreed with one another. I not only switched Kaiser facilities, but switched oncologists, who had differing approaches, quite easily. I will add that a family member generously paid for me to go to Stanford for second opinions and that my Stanford doc worked in cooperation with my Kaiser doc on treatment plans. So, check out Kaiser facilities in your area as well as docs. They do not march in lock step even within Kaiser's system. All the best to you
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My facility does MRIs has a cost if you cash pay between $700-800. But you should demand an MRI and find a doctor who will order it. I just wanted to let you know that there are facilities that do it for a reasonable cost so you should be able to find one if all else fails.
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Does Kaiser have an ombusperson? That person may be able to help you navigate this. I wouldn't let that surgeon stay on my case.
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Thank you guys for your tips and advice. I honestly trust the advice from these forums more than my own surgeon. What does that tell you?
If it has to come down to me paying for an MRI and I have no choice, I will do it. But if it had to do with insurance not covering it I think the surgeon would of told me by now. Cost of MRI has never been mentioned to me as being an obstacle. I have Medi-Cal insurance in San Diego which is an HMO with Kaiser and this Medi-Cal is given to people with low income status. I dont know if my insurance type has to do with her refusing an MRI. If it did why didnt she just tell me this? All my services/appointments at Kaiser are fully covered by my insurance. I dont pay a dime for anything. Whatever surgery I get is fully covered whether breast, heart, etc...
My 1st and 2nd lumpectomies have been fully covered by my insurance. An MRI costs less than a lumpectomy right? So if cost was an issue, my insurance should not have any problem paying for a MRI since by now they have already covered me for two full blown surgeries which costs way more than an MRI. I feel like the refusal of an MRI has a much deeper issue than insurance being the reason. I dont know what that reason is, but its fishy. In any case I am going to push for an MRI when I see her.
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Kaiser does have an appeals process. If you call member services, they can direct you to the right place. Kaiser plans vary widely depending on who it is through, so what is covered or not can vary. Mine is through CALPERS, as I am a public school teacher and considered a state employee Take care.
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Hey Guys,
Latest update: I had my followup with the surgeon today regarding my 2nd lumpectomy. She said she was able to clear all the margins by a good amount except for the ONE MARGIN that remains. She said she cleared the others by a good amount. But the ONE that remains was only 1mm clear and she needs at least 2mm. She said technically all your margins are clean but 1 is not clean per medical standards.
Regarding me asking her for the MRI she said all the negative things you could imagine about the MRI.
- She said if we do an MRI now its gonna light up like a bulb because MRIs cannot distinguish between post surgery changes and the real dcis cells. So it wont help about locating the extent. (but what about the women who had MRIs help them get a successful surgery? lol)
- She also said getting an MRI approved might be tough! Now we know why shes hesitating all this time. Its about $$ I guess. She said I dont qualify and women with DCIS dont qualify for MRIs whaaaat!!
- She also said the MRI may take a couple weeks and by then scar tissue will form on the margin and the next surgery may be tougher for her to distinguish the scar tissue from the other clean tissue.
- She said if MRI finds something in the other breast we have to biopsy that stuff and delay the surgery by weeks which will cause the scar tissue to also form.
Then she said I can get a second opinion with another surgeon at Kaiser but that will take more time and the scar tissue will form also. What is this B.S. about scar tissue guys? She acts like if we delay 1 or 2 weeks the scar tissue is going to devour my cells LoL.
Overall my followup was grim. I heard everything negative about MRIs. She said she can order an MRI for me if it makes me feel comfortable, but it is going to delay us since it takes time to order one and it wont help us identify the size. She said no imaging exists that can help pinpoint size. She was shutting down everything I told her.
My options are:
1. Do the surgery on monday (she already has a date for me haha)
2. Get a second surgical opinion from Kaiser which will prob be the same kaiser medical talk and this will delay and cause scar tissue LoL
3. Do an MRI and risk other stuff popping up in the other breast, waiting too long for it and having scar tissue which makes it harder to perform a 3rd surgery.
Every way you look at it I am screwed. The only good thing she said was my one positive margin is clean by only 1mm and needs to get it more cleaner to be in line with standards (2mm). It sounds like she only has to focus on one margin now which should be easier...but who knows, so far my luck has been horrible.
Opinions on this mess? Any creative ideas on how to solve this dilemma? She already booked me for the 3rd surgery and says I have some time to discuss with family and she discourages waiting due to scar tissue!! whats the deal with scar tissue LoL i dont get it!
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Camille, I was reluctant to weigh in previously, as when I read your thread you were literally going into surgery the next day, but for what it's worth. I was diagnosed with dcis 14 years ago. I got a second opinion on pathology because I wanted to make sure that my local pathologist got it right and didn't miss anything. I got my opinion from Dr. Lagios. I credit him with potentially saving my life. I got his report the day before I was to go into rads mapping. He recommended mri (due to the architectural pattern of my dcis typically presenting as multifocal and my age - 38). I decided to put off rads and flew off to get one. (at that time, there was no one who was routinely reading breast mri in my area) My BS also had some lingering concerns about a very close margin (a little less than 1mm). The mri was able to differentiate between post surgical changes and dcis, telling my team that there was no dcis left at my surgical margins. ( and the mri was more than a month after my lx) What it did find, however, was 2 more areas of dcis in an entirely different quadrant. I was about to go into rads with 2 tumors still intact. The final recommendation was mx. I had tried to avoid that, but was very glad to have mx rather than a 'recurrence' years later when those 2 tumors had gotten big enough to be appreciated by mammo. I'd follow Dr. Lagios' recommendation (but I'm biased) and I agree with Beesie. I'd get another surgeon. And based on exbrnxgrl's experience, different Kaiser docs recommend different approaches. So sorry you're in this position and am sending you warm thoughts and gentle ((hugs))
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Thanks MTWoman for weighing in. So in your case the MRI was able to differentiate between post surgical changes and dcis, ( and your MRI was more than a month after your lumpectomy). Yeah, I dont know why my surgeon is afraid to wait a month or two. She kept saying the scar tissue will form and make it harder for her to remove accurate tissue if we wait and do an MRI later.
And if we do an MRI now she said the MRI will light up like a christmas tree and not be able to differentiate between surgical changes and dcis.
We are damned if you do and damned if you dont. If we wait a month or two to do MRI its not good and if we do MRI now its not good. Confusing!
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my mri did NOT light up like a Christmas tree. It was NO PROBLEM for the experienced team at the MRI imaging center to distinguish post surgical changes and the only areas that 'lit up' were the 2 previously unseen areas of dcis. I don't think of surgeons typically being very experienced with radiology, mri in particular. It wasn't recommended for me to get an mri in my area as they weren't experienced in doing breast mri. So it is a specialty, even within the imaging community. I'd get another surgical opinion.
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Camille,
My post-surgery MRI was also able to distinguish between surgical changes and DCIS and honestly in 11 1/2 years on this board, I have never heard this concern raised before and I've probably seen hundreds of women come through here who've had post-surgical MRIs.
Similarly I have never heard the concern about how scar tissue forming might cause a problem with a subsequent surgery, and again I've probably seen hundreds of women through here who've had lengthy delays between surgery.
Your surgeon appears to be full of crap... sorry for being that blunt, but I think I need to be since your surgeon is presenting the same arguments she did last time, which were contrary to Dr. Lagios's recommendation and contrary to the experiences of everyone here. Yet you still seem to be believing what she says and as a result you believe you have no good options.
Find a new surgeon.
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I'll add that I had a DCIS diagnosis and received an MRI. It showed DCIS and IDC that didn't appear on mammogram in the other breast.
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CammileXO, didn't you say that your surgeon was a general surgeon? If so, I think that would explain a lot. If it were me I would definitely go with another surgeon.
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