Who has used Dr. Lagios for a second opinion? Please weigh in.

april485

First of all, I am waiting for my path results from my lumpectomy that I just had on Thursday. I anticpate it will be DCIS as originally diagnosed, but one never knows. I am also praying for those all important "clean margins" so I don't need another surgery. BS is excellent and she feels she "got it all out" on the first try. Hope she is right!

Now, as to the second opinion. I realllllly don't want to be over-treated for my DCIS if possible. I am facing rads and AI's most likely and QOL issues loom large. I know that if this is what is prescribed, that is what I will do, but a second opinion could be a game changer if it is from a highly respected expert in what is found in my path report.

So, anyone have an opinion on the BEST Dr. to use for a second opinion. I have been reading a whole lot about Dr. Lagios on these discussion boards and was thinking of having my slides/reports sent to him.

Thoughts? I would appreciate any input on second opinions regarding DCIS.

louishenry

Hi April,



I used Dr. Lagios for a 3rd opinion actually. He was great to deal with. They are very organized and pretty quick. The nurse will deal with getting all of your mammos, u/s, and information from your drs. You will fill out a bunch of forms and have all of your questions for him. After all is said and done, he will call you personally with his opinion.

I believe my insurance covered most of his costs.



His opinion was the same as my docs. All said tamoxifen was optional but I ended up doing my 5 years. It was fine and I wish I could do another 5 years, but I'm having a hard time convincing my onc. He said he has read all the new research but feels the 5 year extension is more for invasive disease.

I'm currently thinking of getting another opinion on that.



I hope this helps. There is another board member that called him. I can't think of her name. Put his name into bc.org search engine and you may find others.

Good luck,

Nada

SJW1

April,

When my post lumpectomy pathology report came back, they said I did NOT get clean margins and were recommending a mastectomy. I got a 2nd opinion from Dr. Michael Lagios, who is a world renowned DCIS expert and pathologist, with a consulting service that anyone can use.

He disagreed with the local pathologists and said I DID get good margins. Additionally, he used the Van Nuys Prognostic Index to calculate my risk of recurrence WITHOUT radiation as only 4 percent. Since radiation can only be done once, I wanted to save it in case I ever got invasive breast cancer.

He also explained that the most recent studies show that the abolute risk reduction of tamoxifen is NOT impressive, at best 2 percent. Because of this, I opted out of RADS and tamoxifen, concentrating on other more natural, less toxic ways of risk reduction.

Dr. Lagios is a sought after speaker who has written many of the DCIS textbooks. He has been extensively involved in DCIS study for the last 30 years. In addition to being knowledgeable, he is very kind and easy to talk to. I personally know and communicate regularly with many women who have gotten a 2nd opinion from him and are very glad they did.

Please feel free to PM me or email me at lovetennis60@aol.com if you have any questions.

You can also read more about the role Dr. Lagios played in my DCIS story or get more info about him from my website: http://dciswithoutrads.com/

or his website:http://www.breastcancerconsultdr.com/index.html

Hope your pathology report is all good.

Best,

Sandie

OldOakTree

April - if I had it to do over I would have had Dr Lagios review everything and give me his opinion when I was diagnosed almost 10 years ago.  To me it would have been well worth the money spent.  In fact, every once in a while I still think about having him do this.   As you probably know he is on the side of do as little harm as possible so if he were to tell me that I definitely need radiation than I would go for that.  It's when his opinon is on the line between no treatment and treating with rads that the controversy starts and doctors disagree. 

To me the most important part would not so much be to have him say "you scored an 8 on the VNPI so your treatment should be so and so" as anyone can figure out their score as long as they have their pathology report.  The important part would be that there is someone I can talk to, who will take the time to answer my questions and explain to me exactly what was seen in the pathology and why he recommends the treatment he does.  When first diagnosed I had SO MANY questions.  I wrote them all out, compiled a list of the top 25 took them to my doctor.  He got so tired of me after about 8-10 told me can't answer anymore and maybe a I should go to Boston and see a specialist.  That did not sit well with me at all.

In the real world the pathologist who reads the slides is like a secret forbidden person/place.  To actually be able to talk to the person who looks at both the slides and the mammogram and to ask this person questions is ideal for somone like me who wants to know everything and that's where the real value in his consultation comes in.

You also have the option of having your doctor be a part of this consutation which has its good and bad points.  I think it is a great idea but I probably wouldn't have done this.  One reason is the time constraint.  I could easily take an afternoon off for the phone consult for whatever time he wants but to also have to schedule a doctor for this specific time seems next to impossible.  For one thing, sometimes I have an hours wait in the waiting room and other times a five minute wait, so if the phone consulation is at 2:00 what's to say my doctor will not be held up somewhere else and not be available.  Then I'm out of the consultation and the money and the afternoon at work.  And if the two doctors disagree I'd feel like I might have to be a referee.

If you decide not to consult with him I would still stongly recommend getting a second opinion from another pathology dept just to be sure they concur.

Sending thoughts for only good results this week on your lumpectomy. 

april485

First, I want to thank all of you for weighing in on Dr. Lagios and what a consult could mean for me personally. I am a "need to know everything" type as well Old Oak Tree so I know there would be a lot of value in just that part of this equation for me. I know that I am going to drive all of my doctors nuts with my million questions but it is my nature. I am doing plenty of my own reading and research as well, but I know that a pathologists view of my cancer is invaluable to me, both in choosing my tx's as well as just plain knowing what I am dealing with.

SJW (Sandie), obviously, his opinion made a HUGE difference in how you went about choosing your tx! I will definitely check out your blog as well. I was not aware that there would ever be a difference of opinion on something as simple as whether or not cancer cells were found in the margins! I thought that would be pathology 101. I guess I am for sure ignorant about more than I thought I was in terms of this disease. The fact that someone as well versed in DCIS as Dr. Lagios suggested you did indeed get clean margins is huge! And, it obviously had huge implications in your choice of not having a MX! Doesn't get too much bigger than that imho.

Nada, the fact that you sought out a third opinion shows me how diligent you were in making your decisions about your tx options and that you did not take anything lightly, particularly taking an AH. They are indeed powerful drugs and I understand how important they are in the tx of some BC's and that you had a good experience with the Tamoxifen regimen. I will likely be prescribed an AI as I am post meno and am almost 58, but I also have arthritis already and even with lifestyle changes that I have made, have a lot of joint pain on a daily basis. So, that is why I want to be diligent in seeking out opinions on how much an AI will cut my reoccurance rate and if it is worth the horrible side effects that many women get from them.

I am leaning toward using his service and in my reading his name has come up on a lot of studies/papers regarding DCIS tx etc. He is most definitely the expert in this field from all that I have read.

Thank you for all of the responses. If anyone else can weigh in, I would also appreciate any and all opinions. Second opinions are tricky deals, but I don't care about that. I have well respected doctors at Yale who all encourage second opinions at any phase of tx so I am ok with that aspect. I would not likely involve any of them in the confernce with Dr. Lagios unless they expressed an interest in being involved because I am going to tell the MO that I will be seeking his opinion if I do end up using his services. The cost, even if not covered by insurance will be worth it to me for my piece of mind.

Praying for those all important clean margins right now is all I can handle..that and praying no IDC is found in the path report!

Thanks again!

Rhiannon78

Hi there:

I used Dr. Lagios even though my own doctor sought out 2 additonal opinions for me on her own.  One was from another facility within the system but that had a breast center with a stronger reputation, and one from UCSF.  In the end, Dr. Lagios' opinion was the same as the other-only the originally path report failed to find ADH in the left breast.  It found the DCIS in the right side.  So basically, in my case, 3 out of the 4 opinions were in agreement.  There is some controversy around Lagios in terms of his treatment recommendations in the Bay Area, especially from Radiation Oncologists-although my RO also agreed that radiation would not provide enough additional benefit in my particular case and actually gave me a lower VPNI score than Lagios based on margins.  My doctors do agree that he is a gifted pathologist. Lagios is firmly against Tamoxifen in general.  My MO is not pushing it, other than to encourage me to try it to see if I acutally experience any SE's.  She thinks there could be some benefit in my case.

Bottom line, I think getting a second opinion is always a good idea, and if you want someone to strongly weigh in on treatment options, then Lagios is your guy.  But bear in mind, he does have his own agenda and definitely errs on the side of "less treatment" and I think that treatment decisions are very personal, based on your own risk tolernace. But I think many of the leading breast centers around the country can be trusted for 2nd opinions (UCSF, Vanderbilt, Mayo,etc). Good luck!

april485

Thank you for your very thoughtful post Rhiannon and I will be sure to keep all of that in mind when and if I use Dr. Lagios for a consult. I know that whatever I decide to do, it will have to be within my comfort level and that may mean rads and an AI no matter what he says in terms of tx. It depends on how I synthesize ALL of the information that I get from all doctors involved and what I feel is best. I appreciate the response a lot!

mbordo

I used him in 2007.  I live in the Bay Area, so I actually had an in-person consult with him.  He spent over an hour with me and tape-recorded our conversation so I had a record of it.  His pathology opinion differed from the pathologist at my local hospital.  I leaned towards Dr. Lagios' opinion. (one of my tissue samples had damage near the margin - Dr. L said he could not say with certainty it was a clean margin.  This was after a re-excision.)  It cemented my decision to go with a mast. While I felt he definitely had treatment biases, I had a lack of confidence in my pathology from the start (there was some question if it was LCIS or DCIS) so I felt better having him evaluate my specimen.  He also gave me a VNPI of 10 (high) so I felt better going with a mast.  I am of the mindset that the more information one has, the better.  No regrets having him take a second look.

Mary

Bobbin

Hi April

I used Dr. Lagois in early December 2012.  My DX is exactly like yours!  My DCIS was 12 mm tho.  I'm in eastern Canada and had to send my slides to him in California.  It wasn't cheap, but well worth it for my peace of mind.  I too didn't want rads.  So much possible damage AND I was left side too, therefore worried about my heart.  I know the chances of long term SE are small, I just didn't want to take the chance.  Plus, I wanted to save the rads for a time when I might need it ( I don't plan on it tho, it's all gone!!!!!) 

He was wonderful. And very fast.  I had a converstation with him within 2 days of sending the slides.   I had to call him tho, he didn't call me.  He spent about 45 minutes on the phone.  My husband said as the phone was ringing we should be taping it!  But by that time it was too late.  He determined that my risk of recurrence without rads was 14%, with rads, 9%.  I decided to go without.  My MO also agreed that Tamoxifen was not for me, the risks outweighed the benefits.  

I think you should go for it!  feel free to PM me if you have any questions!

april485

Thank you Mary and Bobbin for weighing in. I just had a re-excision on Monday for a "close" margin of <1mm on the posterior-lateral margin. I now have confidence that all my margins are wider cause I told the BS to shave all of them. My other closest margin was 5mm and the others were both 1.8 cm and 2.5 cm respectively. Also, my total size of my DCIS was downgraded from 1 cm to 5mm x 3mm after surgery. So, it was smaller than anticipated.

I am going to get that second opinion from Lagios when I get my results of this pathology report from my re-excision as I really want to know what my odds of recurrence are and whether rads and tamoxifen (that is what my MO is recommending, not an AI even though I am post meno) will cut my odds enough to warrant the treatment.

I am nervous about both of these things. It is my left so my heart will possibly be in the way (although Selena Wolf told me that they have ways to avoid that which made me feel a whole lot better) and tamox is tolerated well by many who do take it and that I am only reading the really bad se's here on the boards from those who have a rough time.

These decisions are so very hard! I am nervous about making the wrong one. But, I think a second opinion will go a long way toward alleviating my anxiety. I know Lagios goes for less is more on the tx end, but his opinion is important from other points of view for me (as OldOak said, the pathologists are always forbidden territory to talk to and I have a million questions!)as well as having another set of eyes to look at what was found there.

My report stayed with the same diagnosis - DCIS -grade 2, no lobular involvement and smaller than originally thought. ER+ >95% and PR+ 60% which means that my MO wants me to take the tamox. Arghhhh! So many decisions!

Thanks for all of the input. I now have to wait for the second path report from my re-excision which I will get on 3/19. Hoping for LARGE margins!