infobabe - my doctor was also proud and told me he thought I was awesome for being proactive. I do believe the surgeon's nurse called me on her own. We developed a nice relationship over the last few months. When she called she told me she hoped she wasn't crossing any boundaries and that I could tell her to mind her own business if I wanted to. I should have the nurse listen in on Dr. Lagios 40 minute phone conversation with me and then tell me what she thinks.

I had surgery last month and am not having chemo or radiation. I am doing alkalized water, 80% raw food, the Budwig diet (flax oil and cottage cheese), and supplements from "Cancer Step Outside The Box" and Bill Henderson's protocol (he uses Budwig). I have more fear of chemo and radiation effects than cancer. I want to build up my body so it can deal with it.

My RO gave me the odds before/after radiation, and then my MO talked about the odds with/without tamoxifen. Both docs gave numbers that were very similar to the MSK nomogram, so I felt pretty comfortable with their answers.

A too small margin is a big deal when it comes to recurrence risk. But if the margin was at the skin and the closest area of skin was removed, that probably would lower the risk. The question, of course, is how much would it lower the risk. And then it's all a question of how much recurrence risk you can live with.

I had a MX but my one narrow margin was right by the skin. So I too had a bit of the skin removed. That seems to have worked for me - I'm 8 years out with no recurrence. But of course one person's experience has no bearing on anyone else's.

The right doc makes a difference! My 2nd RO came prepared to our first meeting with risk recurrence numbers for me -- the same ones I generated from a Memorial Sloan-Kettering calculator. It's easy to use and you don't have to be a physician:

http://nomograms.mskcc.org/Breast/DuctalCarcinomaInSituRecurrencePage.aspx

[Oops, FYI: In subsequent reading I've learned this nomogram is not validated, so use only with caution according to Yi et al:

http://www.ncbi.nlm.nih.gov/pubmed/22253459

Dr. Lagios, the pathologist-consultant with whom I spoke on 11-20-2013, vastly prefers the USC/Van Nuys index, which factors in tumor size. The MSK nomogram omits tumor size, substituting instead "number of excisions"; Dr. Lagios thought that was "ridiculous" & not the same thing at all.--end update]

We had a good discussion and she didn't try to push me into anything, said I have an 8 week window after surgery. If I decide to proceed with RT, at least now I have a doc I trust. Meanwhile, I'm contacting Dr. Lagios' office today to get a second opinion.

I was in a similar situation as you Treelover. Pretty much same size DCIS, etc. I consulted Dr. Lagois and was so happy I did. He gave me the risk of recurrence as 9 % if I go with rads, 14% without. I felt the 5% difference wasn't worth receiving rads. But as Beesie mentioned, we can't compare each others situations. Dr. Lagois is pricey, but I felt totally worth it for the peace of mind I felt. I'm in Eastern Canada so it was considerably more expensive considering shipping and currency differences. I'm sure you will be happy you consulted with him regardless of what he advises. be well!

Bobbin, thanks much. The bills are flying around my head like autumn leaves but I don't care. More info = peace of mind. Really looking forward to the 2nd opinion. Expect to hear something soon.

Since you passed on rads, did you consider tamoxifen at all? (I know Dr. Lagios isn't keen on it.)

Am new to this; not treated yet for <1cent, low-grade ER+ PR+ DCIS from stereotactic biopsy.  I'm post-menopausal, this confirmed by estodial in blood being almost nil.  If one has almost no estrogen in their system already, why do they recommend an estogen-blocker, with possibly huge side effects, at all?

Hi Treelover. I passed on tamoxifen before I passed on the rads. Here in Canada we see everyone in a certain order...or at least I did. Surgery, then MO, then RO. I read all about tamoxifen and decided I didn't want the side effects, or the risk of..... and my RO agreed with my grade etc, to forgo it. Dr. Lagios also agreed. yeah! Looking forward to hearing what his advice to you is!

Hi Percy4, no imposition at all! Let's see if I can answer all your questions. First, there are several of us on this forum who have gone lumpectomy only, I'm sure they will chime in at some point. So, yes, I went lumpectomy only, no rads or drugs. My RO agreed with me, but she said she could have gone the other way if I insisted, but given my grade and size of DCIS, as well as my margins, she accepted my decision not to take tamoxifen.

As for my margins. Most were 9 mm, but the closest was only 1 mm, which was at the chest wall. My surgeon said he couldn't have gone any closer as he was at the chest wall. Dr. Lagois said I have a Van Nuys score of 7, which has a good local control without irradation therapy. He suggested I have a re excision, but at the chest wall,.... there was no more tissue, so it couldn't be done. The chunk that was removed was large, larger than I thought should have been taken, but I had two spots close together and rather than make two cuts, they took out 6.9 x 6.7 x 2.3 cm.

The cost for me was about 800$ Canadian. I'm not sure what he charges US residents. He is in Tiburon, California. Not sure exactly where that is in relation to SF.

And yes, I guess you could say I went against 2 of the 3 docs. The surgeon wanted me to have rads, as well as the RO. They want us to follow the standard of care. My DCIS was left side and I read about heart and lung problems that I wanted to avoid if possible. As well as...if I did have a recurrence, and had rads, the rads MAY take away the chance of more rads in the event of a recurrence. Therefore, a MX may be needed. I've had 2 mammograms since my surgery, as well as an MRI. I'm going for an ultrasound tomorrow, and so far, all is good.

If you can find the funds, Dr. Lagios will be very helpful. He only gives consults ( I think ) after the surgery. You send him your slides ( in Canada, I had to have the hospital send them, and I paid for the shipping) and he looks at them, then calls you with his opinion and sends you a written report. I'm not sure what Kaiser is.

Here is his website if you haven't been able to locate it.

http://www.breastcancerconsultdr.com/

I'd like to say again tho, you can't compare what I did and what others did. Do lots of reading. It's a hard decision to make, regardless of what it is. Here is my theory, I don't think... I know... I won't have a recurrence, so I rolled the dice. Either way, no rads or with rads, there is pros and cons for both!

A year later and I hardly think about it, in fact, I haven't been around the forum much. IN FACT!!!!, I had to go and look up all my reports because I forgot all the details!

Hope I've helped. be well!

Bobbin

my pleasure.... I KNOW all will go well!

Hi Tree Lover,

Great that you had a consultation with Dr. Lagios. His opinion gave me a great deal of peace of mind when I was in major decision-making mode 2 years ago and I am eternally grateful to him. My friend Sandie Walters and I have recently put together a website called DCIS REDEFINED.org (Dilemmas, Choices & Integrative Solutions) to provide support and share the multitude of resources that we have collected over several years of extensive study regarding treatment and monitoring of DCIS. Please PM if you'd like or if you have any specific questions. Good that you are taking time to research before making any further treatment decisions. This is an important time and it is not easy!! Blessings of peace and health, Donna

Anne, is your diagnosis DCIS grade 2 (not stage 2)?  Pure DCIS is always Stage 0.  

If your diagnosis is in fact Stage 2, then it's not DCIS and that's a very different scenario.

anne,

It can't be pure DCIS if you are Stage 2.  There is no such diagnosis. But are you sure that it's not grade 2?  DCIS can be grade 1 (low grade), grade 2 (intermediate grade) or grade 3 (high grade).

If in fact you are Stage 2, then your diagnosis might include some DCIS but it must also include some invasive cancer.  DCIS on it's own is always and only Stage 0.  It's quite common to have a tumor that includes both DCIS and IDC (invasive cancer).  When that happens, the staging, treatment plan and prognosis is based on the IDC, not the DCIS, since the DCIS is the less serious condition.

i was diagnosed in 2008 and had a lumpectomy and tamoxifen, no radiation, margins were wide (all tissue was clear) calcifications were removed during biopsy... i was told it was ER positive...

just diagnosed last week with a new cancer or a recurrence, im not sure which, waiting for the full pathology report, i do know this new cancer is ER and PR negative and her2 positive, stage 1 (tumor is <1cm)

no idea if no radiation was a good idea or not... probably not... but who knows...