Surgeon Vs. Dr. Lagios? Battle of the opinions

CamilleXO

Thanks for your input guys! I am willing to go to another surgeon. Im just wondering if he/she is going to have a hard time with the right area since he/she wasnt the initial surgeon working on me to begin with. I asked my surgeon if she left markers in my breast now and she said she did. If I find another surgeon and he follows Dr. Lagios advice and allows me to do an MRI say in 1 or 2 months. Is that surgeon going to be able to still see these markers she left (to help guide him) or do these markers dissolve or something?

MTwoman

markers are typically made from titanium so that they are there permanently (unless the subsequent surgery removes it along with additional tissue). It aids in any additional surgery and marks the spot for future imaging studies.

ChiSandy

If your surgeon is a general rather than a breast cancer surgeon, definitely see one of the latter ASAP. It is a load of baloney that MRI isn’t indicated for DCIS—that’s how my friend’s DCIS was diagnosed in one breast and ruled out (ADH, it turns out) in the other: bilateral stereotactic MRI-assisted biopsy after an initial ultrasound-guided core-needle biopsy. She got a BMX based on that. It’s your life, not your surgeon’s and not your insurer’s.

Unless you are in a semi-rural area where it is not possible to see a breast cancer surgeon, I wouldn’t advise settling for a general surgeon. It’s not like you’re getting a sprained ankle treated or a cooking-accident cut sutured, when you can safely use a FP or even an NP. I wouldn’t wan’t a breast cancer surgeon removing my gallbladder, doing my colonoscopy or fixing my hernia. Whenever possible, you want someone with long experience and high volume of a given procedure to perform it. Same when it came to my knee replacements. I wanted someone who did joint replacements almost entirely, rather than the orthopods who treated the stress fracture in my foot and set my broken leg.

LisaAlissa

The American Board of Medical Specialties is the group that recognizes medical and surgical specialties in the US and administers the boards related to those specialties. There is currently no recognized specialty in Breast Surgery or Breast Cancer Surgery.

So when you look for a breast surgeon, they will all be designated as "General Surgeons" (which is a specialty designation--and you do want a surgeon who has passed their boards and has the specialty designation "general surgeon"). But you want someone who spends most if not all of their time on breast surgery. So how can you tell if the "general surgeon" you're considering is a "breast surgeon?" There are a couple of ways.

Do they say the "limit their practice to" breast surgery or breast cancer surgery or possible breast oncoplastic surgery? Do they participate in the various conferences on breast cancer where medical, surgical and radiation oncologists gather to review the latest research on breast cancer. Do they participate in research studies on breast cancer topics?

Have they completed a fellowship in breast surgery? While there are no boards or specialty designation for breast surgeons, there have recently been a growing numbers of post-grad (that is, after internship and after general surgical training) fellowships in various aspects of breast surgery. If your surgeon is younger, I'd look for a grad of a well-regarded fellowship program in breast surgery or breast cancer surgery.

In Southern California there is a large enough population that you should be able to find a surgeon who limits his or her practice to breast surgery & keeps up with the evolving research on breast cancer.

Best wishes,

LisaAlissa

MelissaDallas

In our litigious society and given medical malpractice insurance I would be very surprised if there are many surgeons out there that do appendixes, tonsils and breasts

CamilleXO

I looked at the Kaiser surgeons who are in a 50 mile radius around me and none of them are breast cancer surgeons. So you guys are right. There was a total of 28 surgeons and all are under general surgery. The only clue I have is as I was reading the profiles of these surgeons on the website five of the 28 stated "our practice is a broad-based general surgical practice, including hernias, gallbladder, acute care emergencies, and gastrointestinal, colon, breast and skin cancers." So they mentioned the word Breast. Thats all I know about them. No mention of specialization or attending conferences or fellowships. No info is given about their speciality in breast care. My surgeon wrote on her profile "perform all aspects of general surgery but specialize in complex breast cancer and esophageal cancer patients". LoL hmmm...

Dr. Lagios recommended Dr. Mel Silverstein at City of Hope e in Newport beach. He said he does MRIs on women who had failed lumpectomies and then will perform a surgery to correct and clean the failed margins from the previous surgeries. But then I have to pay from my own pocket for that surgery since its out of Kaiser. My data shows a lumpectomy in the US can cost (national average about 10k) not including rads Ouch!

In other news, my sis who lives in the Middle East told me where shes lives, doctors offer MRIs as part of annual screenings. You can get a mammogram, ultrasound and MRI done if you feel comfortable that way. Any woman can get it whether or not she has BC. She said MRIs there cost about $300. Crazy that in this country if a woman has DCIS she has to beg for an MRI but in other countries you get offered one for the hell of it.

LisaAlissa

Prepare to be surprised! You are in a large metropolitan area (assuming you are in Dallas), but in smaller markets, you will definitely find surgeons who do everything.

For instance, I just looked up a practice where I am now (not where I was treated) Named something like "Breast & General Surgery" which, after listing 20 years experience focused on breast issues, says "In addition to breast health issues, Dr. ______ also provides surgical expertise for procedures such as gallstones, gallbladder problems, skin cysts and lumps."

The surgeon everyone we talked with recommended for my Mother after her BC diagnosis says on his website that he: "specializes in the surgical treatment of diseases affecting the breast, lymph nodes, gallbladder, pancreas, thyroid, parathyroid, stomach, hernia, colon, and rectum. He can also provide general surgery, and skin lesion surgery."

But even in metro areas, the formal surgical specialty designation for breast surgeons is "General Surgeon." Which is why you can't stop there. And since "breast surgeon" isn't a recognized specialty, calling themselves a "Breast Surgeon" doesn't mean that they have passed any surgical boards.

Which is why you want to make sure that they are a board-certified "General Surgeon." And then look into their practice. "limited to breast surgery?" successfully completed a breast surgery fellowship from a reputable program? follows the on-going research and developments in breast cancer? involved in research?

No surgeon has to do everything, but absent a medical specialty board for breast surgery, it's up to the patient to "vet" the doc.

HTH,

LisaAlissa

CamilleXO

I am in southern CA. Unfortunately none of the surgeons Im looking at tell me if they are:

• Limited to breast surgery
• successfully completed a breast surgery fellowship from a reputable program
• follows the on-going research and developments in breast cancer
• involved in research.

I have no way of knowing that because their profiles do not indicate this. I tried going to the Board of surgeons website to see their education and fellowships and what type of research they do but it doesnt answer the questions above. Sure they are all certified but their specialties that are listed are so many. I have no way of knowing. Take a look at this surgeons profile as an example. Does it tell us anything about his speciality in breast cancer? It lists all the breast procedures he does but thats about it:

https://www.facs.org/profile/51039287

I guess I have to physically go see them all and ask them these questions. Online searching didnt reveal much.

ChiSandy

The phone is your best tool. Ask how many breast cancer surgeries a particular surgeon performs—per year and even per week. Ask how long they’ve been performing them. Ask plastic surgeons with which breast cancer-specific “general” surgeons they prefer to work. Ask nurses and nurse-navigators—they will often be more honest. Look at the websites of cancer centers—you are likelier to find surgeons who for all intents & purposes are breast cancer surgeons and perform surgeries for almost no other conditions.

Jackster51

I just googled my doc that did my BMX - it says "Specializes in Surgical Oncology" "Board Certified in General Surgery" I know breasts is all she does.

exbrnxgrl

I have never had difficulty finding info about my Kaiser doctors. Yes, they have an online bio, which may or may not be up to date, as is often the case with such things. Member services, oncology social worker, bc nurse navigator, or just interviewing the doctors will yield the answers that you're looking for. Take care

MTwoman

Camille, you (and possibly your doc) might find this interesting: https://www.ncbi.nlm.nih.gov/pubmed/28567547

The title is " Breast MR imaging for the assessment of residual disease following initial surgery for breast cancer with positive margins" and it was published in the May 2017 edition of European Radiology

CamilleXO

I am all for it! The article is great MTWoman. I wish she would be convinced by that! The underlying problem is my surgeon has no confidence in her ability to execute a clean margin procedure with the help of an MRI. When I told my surgeon why cant we follow Dr. Lagios advice to let the breast heal and do an MRI in 8-12 weeks. She immediately shot this down and said if we wait and do an MRI later in 8-12 weeks, scar tissue will be at the site and "I will be removing scar tissue not real breast tissue and I may have to take out a bigger chunk to capture the breast tissue." How do you respond to this? I agree with you guys, I never heard this scar tissue thing being a problem for others. How do you reason with a surgeon who is pumping herself up for failure?

She called and said she consulted with another surgeon about my case to see what other surgeons would say. That surgeon told her to go ahead and do a 3rd excision ASAP and go for it. She is getting validation from other surgeons now LoL. How do you fight a system and a corporation with this mentality? I have not been able to find a "breast cancer speciality" surgeon in my network. Will do more searching around. Pray for my deliverance.

SusanaQ

Camille,

You are correct in that Kaiser doesn't have "breast surgeons" per se. They do have surgeons w areas of expertise in a given facility. I had my latest surgery by an incredible General surgeon at Kaiser. If you want her name, PM me. I have a small scar and she was thorough-got all the fascia.

Susan

BarredOwl

Hi CamilleXO:

You mentioned after re-excision: "The only good thing she said was my one positive margin is clean by only 1mm . . ."

Perhaps I am misunderstanding, but in my layperson understanding, a margin cannot be both "positive" and yet "clean" by 1 mm.

As mentioned above, there is now consensus among (1) SSO/ASTRO/ASCO and (2) NCCN regarding the definition of a "positive margin" with DCIS.

(1) SSO/ASTRO/ASCO

Morrow (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

>> 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]."

(2) NCCN

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:

"MARGIN STATUS IN DCIS

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."

One thing both Dr. Lagios and your current surgeon appear to agree upon is that margins larger than 1 mm are desirable in your particular case.

BarredOwl

BarredOwl

Thanks for the link MTWoman. Here is a direct link to the journal's website. Unfortunately, the full-length article is behind a rather large paywall.

Krammer (2017): https://link.springer.com/article/10.1007%2Fs00330-017-4823-y

The website also includes "Key Points":

"Key Points

• Post-operative breast MRI accurately defines residual disease of ≥5 mm.

• Surgical cavity sensitivities were high for both invasive carcinoma and DCIS.

• Post-surgical changes and very small residual disease (<5 mm) may overlap.

• Post-operative breast MRI may help planning an accurate re-resection."

In general, one should not rely on the content of an abstract re the implications of a study for treatment decisions. This is because the full text of the article may contain important information about the study population, details of patient management, certain caveats or limitations, including a discussion of conflicting studies, any of which may affect understanding and applicability of the findings.

I am not sure, but there is some suggestion that the patients here may have been diagnosed with invasive breast cancer, based on reference to "residual invasive disease":

"The readers identified 42/45 (93%, reader 1) and 43/45 (95%, reader 2) patients with residual invasive disease at the cavity of ≥5 mm and 22/22 (100%, both readers) patients with disease ≥10 mm."

Note also that the objective of the study was: "To determine the accuracy of post-operative MR in predicting residual disease in women with positive margins, emphasizing the size thresholds at which residual disease can be confidently identified."

The above MIGHT (but might not) suggest that the patients included in the study population here all had invasive disease and positive margins. Access to the full-length paper may be helpful to clarify this, as well as what the authors consider to the clinical application of their findings. For example, IF all patients in this study had invasive breast cancer and positive margins, can the results be appropriately extrapolated to patients with apparently pure DCIS and negative margins (e.g., clear by 1 mm)?

I would also be curious to learn about timing considerations. For example, what was the time-frame between surgery, MRI, and re-excision in these patients? IF the patients all had invasive breast cancer, it seems unlikely that they waited for a month or two for MRI and re-excision.

Note also the finding that "Post-surgical changes and very small residual disease (<5 mm) may overlap." Are they saying that "post-surgical changes" impacted the ability to visualize residual disease less than 5 mm? Are such "post-surgical changes" a possible reason why Dr. Lagios recommended the following?

"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."

In view of the above, I really don't know what to make of this abstract or whether the findings of this particular study should be applied to a person diagnosed with apparently pure DCIS and a 1 mm clean margin. Without it, it seems a reasonable case has been made above for MRI.

BarredOwl

CamilleXO

Dear BarredOwl,

Sorry for the confusion in my verbiage use. English is not my 1st language. She said during my 2nd lumpectomy she cleared the remaining margins by a significant portion. She said she acheived about 1 centimeter of clearance on/around those 3 or 4 margins. However One margin is still positive. Her wording was "I got that one margin clear, but not by enough." Its like saying I cleaned all your dishes but not by enough, I left a few in the sink lol.

She went on to explain that her goal is to clean the remaining margin by a 2mm clearance, but that she only achieved a 1mm clearance on it. According to her: 2mm is the standard of practice. So she made it sound like this time around her excision will be "minor" and more easy, since she only has one margin to focus on and that margin needs a little tiny bit of clearance.

BarredOwl

Thanks CamilleXO. Her wording, "I got that one margin clear, but not by enough" suggests to me that the current margin is clear and not positive. Please confirm it.

With a "clear" margin (i.e., not positive), the next question is whether the size of the margin is "adequate" in light of all relevant factors impacting recurrence risk.

Whether a 1 mm margin is "adequate" or a margin of 2 mm or greater may be preferred is a case-specific determination based on a personalized assessment of same in-breast recurrence risk. It seems that both Dr. Lagios (who recommended striving for 3 mm) and your surgeon (who recommends 2 mm or more) are in agreement that 1 mm may not be optimal in your particular case.

BarredOwl

CamilleXO

You are correct. The margin is technically clear, but still lacking the full clearance needed. The guidelines she uses say she needs 2mm of clearance not 1mm.

Regarding differing medical opinions on margin size clearance. Dr. Lagios stated that my first lumpectomy results gave me a Van Nuys score of 10. He said if your surgeon can do a second re-excision and successfully gain (3mm) of margin clearance it will lower your score to 8 which means reoccurence risk for DCIS is at 13%. When I told my surgeon what she thinks about getting 3mm of clearance. She stated that Dr. Lagios is wrong and all she needs is 2mm lol. I relayed this info to Dr. Lagios and he said, "The VNPI is based on more than 1800 patient cases the margins of which were prospectively measured. So we know they reflect reality. There is probably little difference in outcome between 2 and 3 mm, but the 2 mm adequate definition is based on consensus not prospective measurements. A 2 mm margin would not provide certainly about local control with irradiation."

BarredOwl

For other patients with apparently pure DCIS treated by breast-conserving surgery (lumpectomy) and whole-breast irradiation, I note that the guidelines do not mandate 2 mm margins in all cases. The question of the adequacy of margins is not based on size alone.

The advice that each patient receives is case-specific, and there will be some patients with 1 mm margin(s) who may not receive a recommendation for re-excision.

The 2016 SSO/ASTRO/ASCO guidelines for those with DCIS who received breast conserving surgery (lumpectomy) and whole breast irradiation take the position that:

Morrow (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"

http://ascopubs.org/doi/pdf/10.1200/JCO.2016.68.3573

(Free PDF available for downloading)

>> "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."

The panel's choice of the 2 mm threshold reflects multiple considerations, and is NOT mandatory in all cases, as explained in the guideline:

>> "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 (same) breast tumor recurrence risk, and patients should receive case-specific medical advice. Because of this, not all patients will receive the same advice about margin size.

BarredOwl

CamilleXO

Yes! For my individualized case my surgeon is using the 2mm guideline, some patients will receive different advice about margin size based on their case.

My DCIS is focally well-developed, high-grade with prominent mitotic activity, vesicular nuclei, and small conspicuous nucleoli. There is prominent zonal necrosis & there is a solid growth pattern. My age and failure to get clear margin(s) the first and second time also contribute. All these factors were determining components of what margin size is needed for my case. I presume many factors are used to assess what margin size is adequate. They look at the full picture.

BarredOwl

Hi CamilleXO:

Given the additional information available (including some rather handsome margins despite the 1 mm one), it occurred to me that you may wish to forward the latest pathology report(s) to Dr. Lagios to confirm that his original advice still stands.

BarredOwl

CamilleXO

I sent him my pathology report of my 2nd excision and he appears to still encourage me to follow his initial advice of allowing healing and doing re-imaging(MRI) in 8-12 weeks followed by the 3rd excision. His advice still stands. I asked him whether he knew any surgeons at Kaiser who could be open to his ideas. Didnt seem like he knew anyone, but he recommended Dr. Silverstein as a surgeon who is supposed to be the best go-to surgeon for DCIS, Its just tough since he is not covered by my insurance.

Roxy_89

Sorry guys I could not get an MRI to be done on me. Surgeons in Kaiser pretty much had the same opinions. I went ahead and did my 3rd surgery a few days ago and the surgeon called me today and said I got my last margin cleared!! A huge burden has been lifted off my chest and I can breathe. I will have a followup next week and be able to ask more questions.

My only issue now is what if theres DCIS somewhere else in the breast? Ughh I dont want to think any negative thoughts, but I do have high grade and high grade is more risky to me, but I want to make sure there isnt any other area that the initial mammogram missed when it indicated microcalcifications. Could the mammogram have left out any other spots in my breast or the other breast?

The only reason I am asking is because if there is more DCIS in other areas of the same breast (that was missed by mammogram) or even in the other breast, then radiation isnt going to do anything for that. Should I ask for additional imaging before radiation? Or just leave it alone and trust the initial mammogram and move towards radiation?

ChiSandy

Whole-breast radiation should take care of any DCIS remaining (if it even exists) in your lumpectomy breast.

BarredOwl

Hi Roxy_89:

While breast MRI is "optional" or case-specific under the NCCN guidelines for breast cancer applicable to DCIS, in contrast, the NCCN guidelines (Version 2.2017) specify that the work-up for DCIS includes (among other things):

>> "Diagnostic bilateral mammogram"

I was diagnosed with unilateral (right) DCIS after routine bilateral "screening" mammogram, followed by unilateral "diagnostic" mammogram (right) and core-needle biopsy. The first institution neglected to perform a "diagnostic" mammogram on the left (not in accordance with guidelines at the time). Luckily, in my second opinion, a left diagnostic mammogram was ordered, which led to diagnosis of bilateral disease.

Perhaps the first institution was lulled into a false sense of security by the results of my pre-surgical MRI, which confirmed the extent of biopsy-proven disease on the right, but (in a less common turn of events) missed over 5 cm of DCIS on the left (while flagging two areas of suspicion that were found to be benign upon MRI-guided biopsy).

You may wish to review your mammography reports to confirm that you have received bilateral (left and right) "diagnostic" mammograms as part of your work-up for DCIS. If not, please consider requesting same with reference to NCCN guidelines.

BarredOwl

MTwoman

I didn't get a bilateral diagnostic mammo either (maybe the guidelines were different in 2002/3?). But the mri following my lx did, in fact, find other areas of dcis in another quadrant of the affected side, that had not been seen on any previous imaging.