Review of Dr. Lagios - DCIS expert

Rubiayat

Dr. Lagios has been mentioned many times in this forum as he is considered an expert on DCIS and provides second opinions. I recently had a consultation with him and thought I would post my impressions as it cost $600 out of pocket for his services and I know some woman have questioned whether is it worth the money or not. He reviewed all my records, except for my MRI scan which he did not obtain. I don't know why and wish I would have known this because I would have made sure he received it. His report did not tell me anything I didn't already know. He is a pathologist and disagreed slightly with the assessment in my pathology report. He said my DCIS was intermediate, not high grade, and that one of my margins was 0.6 mm not 2.0 mm. My main reason for consulting with him was to help me decide whether or not I should have a mastectomy. I have had three lumpectomies and my doctors are advising me to have a mastectomy as they believe there is too much uncertainty about whether or not they have removed all the DCIS. Dr. Lagios's conclusion was that a mastectomy was not medically necessary and that I was a good candidate for breast conservation therapy (next step radiation). I felt that he downplayed my situation and his conclusion was based on the statistical chance I would have a recurrence. I understand that no one can predict what will happen for an individual and the best we can do is look to the studies to get a sense of what our risk is. I believe he is not actively practicing as a doctor, he is a director of programs and a professor; therefore his assessment is academic. My sense is that my doctors that treat breast cancer patients everyday have a better sense of what their risks are and an instinct for when a patient should take a more conservative route. I plan on getting another opinion from a surgeon at a different medical center I was referred to by my primary surgeon.

ww3354

Of course this is all a very personal decision and everyone has to do what feels right for themselves. My story is different than yours and I did take the recommendation of Dr. Lagios. I went in realizing that most other MO and RO would not agree with Dr. Lagios, but I also realize from so much research that DCIS is often over treated. I really was concerned about causing more problems down the road with radiation and Tamoxifen that I would have worried myself sick. Both my husband and I listened to Dr. Lagios for 45 minutes and I strongly felt that he made more sense than what I was told by my MO and RO.  My primary care doctor, who I totally trust, was happy that I listened to Dr. Lagios and was impressed by his report. That being said, I think that after 3 lumpectomies I wouldn't want to go through breast conserving surgery and radiation and would probably lean towards a mastectomy.  As I said it is all a very personal decision. I am pretty sure that Dr. Lagios would look at your MRI at no additional expense, since it was omitted with the original consultation. I hope you find the right answer soon and wish you the best with whatever it is.

Janet456

Rubiayat - in terms of treatment I think your IDC will trump any DCIS.  In which case I would most definitely be listening to the docs who are looking at the bigger picture and not just the DCIS.

Wishing you well xx

TB90

There is no specialist in the world that always makes the right or best decision for each situation.  It is so important to do your research and get a second opinion.  And then ultimately make the best decision for you.  I was so frustrated when my BS and RO disagreed about whether or not radiation was a good choice for me following my mx with a small positive margin.  That made me do my own research and what I really discovered is that often there is no right or wrong answer.  Half the studies supported the BS and half the studies supported the RO.  The choice was left up to me.  Now I am glad that they did not agree and I had to do my own homework and soul searching.  That ultimately led to me making a decision that was my own to make. 

SJW1

Dr. Lagios was very much worth the fee he charged me. When I consulted with him in 2007, he saved me from an unneeded mastectomy. When local pathologists said 4 of 6 margins were positive after my lumpectomy, he disagreed and said I did get good margins. He also used the Van Nuys Prognostic Index to calculate my risk of recurrence at only 4 percent. Based on this, I decided not to have radiation as the typical 50 percent risk reduction provided by radiation would have only been only 2 percent for me. 

Dr. Lagios was the voice of reason in what seemed like a knee jerk reaction to my diagnosis of DCIS. Overtreatment is a definite problem with DCIS and I believe he saved me from that. 

Dr. Lagios is a DCIS expert, having written many of the textbooks on the subject. He is also a well respected pathologists. He is not a surgeon or oncologist and has never been either of those.

If his recommendations do not give you peace of mind, you certainly should consult with another doctor. Everyone has the right to do whatever she feels is right for her.

Wishing you all the best in whatever you decide,

Sandie

Beesie

Rubiayat,  

Janet's reply had me looking up your profile in order to see your diagnosis.  It appears from your diagnosis info that you had a combination of DCIS and IDC, making your diagnosis Stage I IDC.   So I guess I'm confused on why you consulted Dr. Lagios.

Rubiayat

Yes, I had a combination of IDC and DCIS. The IDC (2.3 mm) was removed with the biopsy. My DCIS was originally found on a mammogram. During surgery, my surgeon found more DCIS, removed it, but did not get a good margin. Therefore, I went in for a re-incision. After that there was concern that something else could have been missed by the mammogram. I had an MRI and sure enough two more focus were found, which led to the third surgery. My doctors are recommending a mastectomy based on their concern that there may be more DCIS that was not picked up by the MRI. I questioned why radiation wouldn't be sufficient if there was something left behind that was not detected. They said radiation is suitable for stray cancer cells, not a focus of DCIS. At first I thought, why is my situation any different? Isn't possible that any woman undergoing a lumpectomy with radiation could have had undetected foci of DCIS, but then in the long term the rate of recurrence is equivalent between lumpectomy and mastectomy? Dr. Lagios seemed to think that in my case it would be very reasonable to proceed with radiation and that statistically I would be of no greater risk of recurrence than if I had a mastectomy. My doctors believe there is too much uncertainty in my case and given that I am young (41) and have a young child that I should take a more cautious route. As more time has passed, I am less afraid of having a mastectomy and more worried about a recurrence. 

I am glad to hear that Dr. Lagios has been helpful to others. It does seem that there is a trend of DCIS being over treated and getting another opinion from an objective third party is beneficial. I wonder if physicians in general advise their patients to take a more cautious route?

Rubiayat

I wanted to add... thank you everyone for your response. It is a very personal choice and for me, the most difficult one I have ever had to make. I really appreciate Beesie's posts on things to consider when choosing between a lumpectomy and mastectomy - it helped me focus on what was most important to me. As I mentioned above my feelings have changed somewhat over time. I guess there is something to be said for taking your time in making a decision like this one.

aunt_paula

I haven't had DCIS (or IDC), but my age (44) and the fact that I have a young child figured heavily into my decision to have a BMX a few weeks ago. Having had colon cancer at 29 (long before I was a mom), and with a daunting family history, including my mother's death last summer after a 13-year battle with colon cancer, the only decision I could live with was the BMX. There's still no guarantee that I won't have to deal with breast cancer, but I feel much more at peace with the knowledge that my surgeon honored my wishes and took as much tissue as he could (I told him to save nothing). Whatever you decide to do, I hope you can feel good about it and have as much peace as is possible.

april485

Dr. Lagios is a known conservative when it comes to treatment for DCIS. His thought is basically that over-treatment occurs far too often and he is obviously on the side of "less is more" if he feels it is safe.

That being said, he is BRILLIANT and wrote the book on DCIS treatment so even though I did have rads when he said I could forego them, I respect him immensely and felt he was worth the money.

Beesie

Many women on this board have gone to Dr. Lagios for a 2nd opinion.  What impresses me is how thorough he is - he looks at all the imaging and reviews all the pathology, and he spends timing explaining his conclusions to the patient.  What impresses me even more is that even though Dr. Lagios is known to not favor over-treatment, I have seen a number of cases where women have gone to him hoping to be able to get away with less treatment than what's been recommended to them by their doctors, and yet he's come back either confirming the original recommendation or even suggesting that more treatment might be advisable.  Certainly he's told many women that he doesn't feel that rads is required (even though their doctors have suggested that they have rads), but he's told just as many that rads is necessary in their case, and he's told some that a MX is advisable. So he clearly doesn't go with a one-size-fits-all approach.  He is willing to recommend any level of treatment that he feels is appropriate for the patient based on the pathology and imaging. 

I find that too often women come here with a treatment recommendation from their doctors that is clearly a "by the book" recommendation, without consideration to the specifics of the case or the concerns and desires of the patient. As an example, doctors who always recommend rads after a lumpectomy for DCIS, regardless of the size and grade of the area of DCIS, regardless of the age of the patient, despite the concerns and questions of the patient... those are the doctors that I have less confidence in.

percy4

I felt that my consult with Dr. Lagios was well worth the money.  He reviewed everything, and arrived, with all his longer experience, at a couple of different conclusions than the HMO pathologists.  He saw my margins as still clean, but narrower than they had, and he identified a second VERY small microinvasion (from the stereotactic biopsy) which had been looked at and ruled out by the HMO.  He also saw the area of DCIS as much larger than they did.  Granted, these things did not change the big picture, as my good prognosis is about the same as originally thought, but it did cement my decision to do rads, and I'd been wavering.  With the narrow margins and the micro(s) confirmed, he recommended not only the rads, but also the boosts.  On the other hand, though hormonal therapy is standard even for the tiniest ER+ tumour, he strongly felt that, in my case, because of the non-aggressive markers and lowest grade of my tumour, that I do not need that (though he does not, of course, promise certainty).  He set my mind at ease about skipping the SNB, which three HMO docs had told me to skip, but which I wondered about as they put my chance of nodal involvement at about 5%.  He put it at a third of a percent.  Why do I tend to believe him and put a lot of stock in his recommendations?  Because, as Beesie said, he looks at every case very individually, he quotes reliable studies and tells you WHY he makes his recommendations, but most especially because even the docs at my HMO had to say he is the 30+-year expert on DCIS and DCIS-Mi, and it's clear he also has a lot of knowledge about at least Stage 1 disease.  I was very impressed with him.

Midwestgal5544

I also had a review by Dr Lagio. I feel it was a complete waste of my money. I already put out over $600 for the second opinion and had to have a second and third lumpectomy. He wanted and additional $425 to review my lumpectomy slides and finally agreed to review it if I ordered my own slides which was a nightmare and the lab had never heard of a patient ordering their own slides. By the time he finally got my slides I had already had a second lumpectomy and ended up with a third lumpectomy. In the end he did nothing more than agree with what my doctor already had told me. It was a complete waste of my money. They are very nice upfront but got rude at the end.