Do you have the citation for this publication?  I would like to read the article.

REDSOX  this is the citation for the article above. I have pasted a citation for a second article from 2010 as well. 

Ann Surg Oncol. 2011 Feb;18(2):459-62. Epub 2010 Sep 22.

Analyzing the risk of recurrence after mastectomy for DCIS: a new use for the USC/Van Nuys Prognostic Index.

Kelley L, Silverstein M, Guerra L.

http://www.ncbi.nlm.nih.gov/pubmed/20956828

J Natl Cancer Inst Monogr. 2010;2010(41):193-6.

Choosing treatment for patients with ductal carcinoma in situ: fine tuning the University of Southern California/Van Nuys Prognostic Index.

Silverstein MJ, Lagios MD.

 I haven't figured out how to find the entire articles yet, just abstracts and now I am off to a lecture on breast cancer, diet and aging (ugh)

Julie E

I guess the good thing is that if your SE's with tamox are bad you could stop.

I had DCIS Grade 3.  Surgery and mammosite radiation in February.  My onc recommended tamoxifen to get the lowered rate of recurrence.  I have been on it for three weeks and no SEs so far.  I had not heard about the study.

I thought the van nuys thing was for lumpectomies. 

Due to the high grade and the necrosis, I would do the tamoxifen.  I would do everything possible to prevent a recurrence of an invasive cancer. I had a mastectomy due to my large are of DCIS.  Due to not getting my mammogram at 40, and then three years after as well, mine did become invasive.  Once it becomes invasive, the treatment is longer, harder and can affect your life if nodes are involved (lymphedema, which I have due to all the nodes having to be removed). And of course it is then life threatening. I was told I have a 30% chance of having a recurrence.  And their not talking about a local recurrence, as I was told this was low.  I'm not sure if a 9-10% recurrence rate is high or low.  But a 1-2% chance sounds like a dream to me! 

It does mention mastectomies.  I see with a mastectomy is says 10% chance of recurrence and 2-3% chance of developing metastatic disease after recurrence.  So, this is higher than I expected, but all in all still carries with it a lower 10 year mortality risk than all other mortality risks combined.  10% is high after mastectomy compared to other numbers I have seen.  My dcis was multi-focal and multi-centric and some of it was high grade, but it was still very very small (it was suppose to be a prophylactic mastectomy over a year after my first mastectomy).  OF course, I had triple negative idc in the other breast, which ultimately in the long term is probably going to be less of a risk than the dcis.  I am not on tamoxifen because my idc was triple negative and was advised against tamoxifen because of the risks it has.  I will have to ask my doctors about this.  I think my van nuys score was based on a 9 point scale, not a 12 point scale.  What is the difference?  Anybody know?

here is the link I found to a VNPI calculator. Granted it is an online site, so not 100% sure it is accurate but here is the link:

http://www.theeffectivetruth.info/wksht1.html 

I have read the paper:

"Analyzing the Risk of Recurrence after Mastectomy for DCIS: A New Use for the USC/Van Nuys Prognostic Index" by Leah Kelley, Melvin Silverstein, and Lisa Guerra in Annals of Surgical Oncology (2011) 18:459-462. 

It reports analysis of the institutional database previously used in many papers by Dr.  Silverstein and others.  Some observations about the analysis and hints at why the recurrence rates are higher (9.6% at 12 years) than most of us are used to reading for mastectomy after DCIS (~1-2%):

1. The higher rate is for only a subset of all DCIS patients treated with mastectomy - those deliberately chosen because they had high risk factors and a poorer prognosis.

2. No information is provided regarding whether the patients had bilateral or unilateral mastectomy, skin-sparing mastectomy, nipple-sparing mastectomy. 

3. None of the patients had any post-mastectomy treatment, such as radiation therapy or tamoxifen, regardless of post-mastectomy margins or ER and PR status.

4. Margin status in the Van Nuys Prognostic Index was based on the last attempt at lumpectomy, not the margins after the mastectomy.  This seems strange but was probably driven by the data elements available to the authors rather than logic.

5. They don't explicitly say if all recurrences are in the tissue left in the breast that had cancer and not the other breast but the breakdown implies that they are only reporting on same breast recurrences or distant metastases, not new cancers in the other breast.

6. The database used for analysis is an observational database of a single group of practitioners that evolved over decades.  The assignment of patients to the two comparison groups is not random but deliberate, and treatment choices were based on the data elements that are used for the analysis.  That means the comparison groups are different in important ways that imply we should be very cautious about inferring a cause and effect relationship.

7. The overall survival was 90% for the low VNPI group and 94% for the high VNPI group (the one with all the recurrences), a difference that was not statistically significant.  Still, the group with recurrences had better overall survival.  This probably reflects the underlying differences between the two groups, e.g. the higher group is considerably younger.

8. While the results are interesting, they need to be confirmed in other studies.

My conclusion is that if I fell into the category with more recurrences - mastectomy with younger age and larger tumor and higher grade (with necrosis) - I might consider more seriously post-mastectomy treatment, i.e. radiation therapy if the post-mastectomy margins are narrow or tamoxifen if ER+.  Relying solely on surgery may be inadequate with these factors.  This is pretty much what most doctors have been recommending anyway.

BUMPING

voicewriter, what were your margins?  And has anyone mentioned radiation?  

I find it interesting - and concerning - that the study didn't measure margins after the mastectomy. Margins are such a critical factor in recurrence rates for those who have lumpectomies for DCIS and a recent study showed that for those who have a mastectomy, close margins can increase risk from 1%-2% to 16%.  So I can't help but wonder if margin size was one of the key factors in who recurred and who didn't in the Van Nuys study too. 

It's because of this new concern about margins that more and more women who have mastectomies for DCIS are now getting radiation.  Radiation is targeted against the breast area specifically whereas Tamoxifen is a systemic treatment - it goes into and affects your whole body. If you'd had a single mastectomy, then Tamoxifen would provide a second benefit in protecting your remaining breast from the development of a new BC.  But with a bilateral, your risk of a new BC is already only 1% - 2%, so there's not much that Tamoxifen can do to reduce that risk.  My understanding is that both Tamox and radiation generally reduce local recurrence risk by about 50% so it would seem that both of these options would be equally viable for you. Just something else to consider.. 

Sunshinegal--

You are right that the Van Nuys index is computed after a lumpectomy.  It really does not make sense to use the margin status from the last attempt at lumpectomy in a patient who subsequently has a mastectomy.  The margins after mastectomy are the important margins for those patients and for you.  I am sure that is what the Dana Farber tumor board considered in reaching their opinion and I think you should be comfortable with that.

I think the authors of this article did not have or use post-mastectomy margin status because they come from the tradition of relying very heavily on surgery to eradicate cancer and favor radiation therapy seldom or tamoxifen very seldom compared to most other doctors.  I am currently reading The Emperor of All Maladies and am finding it fascinating.  One theme through the long history of cancer treatment is the conflict between surgeons who sought more and more extensive surgeries vs. medical or radiation oncologists looking for a multi-modality approach.  I think some of the controversy on DCIS falls within this pattern. 

Dear voicewriter ,

You might wish to talk to Dr Michael Lagios one of the the developers of the Van Nuys Prognostic Index He might not even charge you since you already have a score it doesn't hurt to ask. . He did my 2nd Opinion of my Pathology report when I was diagnosed. This is his website, It cost me a little under $500- us dollars to have this done and my insuracne reimbursed me about 70% of it. I am choosing a BMX, one reason is  to avoid Rad and Tam, but my diagnosis is different than  yours and everything can change with what they find ,as we know, once they do my surgery.

www.breastcancerconsultdr.com