Anyone with DCIS had the Oncotype test?

I think Jamie is talking about the oncotype test for invasive cancer - which is being tested in a phase III trial right now. Neither the oncotype dcis or the Van Nuys Prognostic Index have been valided, and both of them have been developed on very small sample sizes.  While they both show promise, they are not ready to be thought of as "standard of care" yet.  

Infobabe, I am glad that your persistence has paid off and you are getting what you have been asking ...  good luck. 

wow, I had no idea she had triple negative.  In one of her interviews, she talked about chemo and how difficult it was, she did not mention rads.

hi Infobabe, the oncotype test for invasive cancer is actually being tested right now -- in a randomized phase III trial.  Those patients who score in the "intermediate" range of the test are randomized to chemo + hormone therapy or hormone therapy alone (I believe that everyone who has lumpectomy, no matter what the "range" of the their oncotype test, gets radiation).  Maybe the oncotype folks think it is standard-of-care, but if I were in the intermediate range, I would not base my treatment on it (the high and low range correlates well with other markers - like grade, size, etc, so it is not really an issue of whether it works or not in that group).  I am not saying that others can't use these tests to help them decide, I am just saying that as a statistician, until it is proven - I personally wouldn't use it.  That said, the invasive oncotype has a lot of data to back it up already (which is why the National Cancer Institute is funding the clinical trial) -- unlike the oncotype dcis test.  I am not trying to talk anyone out of it, I am just explaining that these tests have not been validated (it is a private company who developes these tests - they make money on these tests, these tests are not regulated by any governmental agency).  I know that you had said you want it to use it as another piece of information, and I think that is great!  And, I most certainly understand the issues you are grappling with -- I really do, I went through the same uncertainty and desire to skip radiation.  At the end of the day -- we all make our decisions on how much risk we are willing to live with, what data we feel most compelled to listen to, and in the end - which doctors we decide to trust 

I do have a dermatologist - but I have not been since I had my last "event" ;-)  I know I should go back for my yearly evaluation, but I am so so so so sick of doctors right now ... but, as soon as I finish radiation I will force myself to go in to get "mapped" -- I haven't seen anything questionable lately, thank goodness.  I am done for a while!!!   

I was ready to skip radiation, I thought that 20% risk (with 10% chance it would be invasive) was a risk I could live with, especially since I knew they are going to be monitoring me every 6 months anyway.  But the risk (because of my age and ER status) ended up being higher than 20% by many metrics, and I decided that closer to 30% was just not comfortable for me.  

Have you seen the Memorial Sloan Kettering prediction tool?  It is sort of like Van Nuys Index, but based on a larger, multisite trial: http://nomograms.mskcc.org/Breast/DuctalCarcinomaInSituRecurrencePage.aspx

Good luck Infobabe!! you have to be able to live with your decision, so you need to do whatever you have to do to sleep at night ;-) 

Infobabe, I have to tell you that I will have 7% AFTER radiation.  Personally, I don't think that the difference between 7% and 1-2% (the risk you just told me and risk after mastectomy) is that different?  I know that we all have different risk tolerances, but heck, I am not sure I would have a mastectomy if I had a 7% risk with lumpectomy ... am I misunderstanding?  are you talking about 7% after radiation?

Infobabe,  you seem much too tenacious to be at that high of dying in the next 15 years (that is a compliment, by the way ;-) ).

Background:  DCIS diagnosed August 2012, september lump took out 6 cm long, 5 of it DCIS, october reexcision took out maybe 20% more (today).  Left breast at issue is AA so this is a very big deal and have visited Khoury in Miami regarding reconstruction as no one in Houston does BRAVA fat transfer or wants to reconstruct radiated tissue. But, sensation!  I am 40 and this was my bday present 1st screening mammo, no palpable mass.

My awesome oncologist (former MD ANderson) vigorously recommended the Oncotype DCIS test for me.  My awesome MD ANderson surgeon at first disagreed - I have high grade DCIS and endlessly long DCIS - 5 cm excised on first go.  So I was facing radiation regardless.  My oncologist responds that the point is that the test is a BETTER predictor than lesion size and those other traditional factors.  But in any case what I wanted, after failing to get clean margins, was to better consider my recurrence risk in choosing between reexcision and mastectomy.  THat sounded reasonable to my surgeon, who then ordered it.

My BC comrades, this test gets reimbursed.  BCBS raised no issues.  It's an FDA approved medical device and I bet Medicare and Medicaid may even pay despite prior post on Medicare.  Particularly post PPACA, which requires, for instance, the BRCA genetic test to be covered by insurers.  Yes, approval was based on one study.  Yes, it's nice to have more, and it's unfortunate that the study was limited to smaller tumors but included some on Tamoxifen.  But look, think about the new genetic work that has just come out regarding breast cancer - September New York Times article summarized the Nature article.  it overhauls so much of how doctors classified in the past.  and what matters now is the gene mutations at issue, which Oncotype DCIS tells you about.  SO crucial.  In the next 5 years we will learn so much more about these gene mutations, and you'll want to know whether you have them.  You will get some of that info from this test, which tests for genes in order to apply its algorithm.   

So I became the first MD Anderson patient to order it.  Frankly that I was the first astounded me.  May many more follow swiftly.  Delays I will not discuss at this time except to exhort people - please do your own checking to confirm that your pathology has been shipped! - caused me to face reexcision surgery today without my test result.  Ironically got it this afternoon.  So as of today I have one iffy margin left, and an Oncotype DCIS score of 59.  Above 55 is considered high risk so it's bad news.  It is very clarifying for me and well worth it.  I WANT that lumpectomy, I do, but now I can weigh that against a much more informed idea of the risks.

Please note, everyone:  while the study on which it's based eliminated women with bigger lesions, THAT ELIGIBILITY TEST DOES NOT APPLY TO YOU!  I would not have been eligible at all in that case, with the world's longest pure DCIS.  Insurance will cover no matter how long your DCIS is, and a high score is still very insightful as was mine.   

I became a member of this board because I really wanted to address some of the previous posts about this test. I really do hope more women start ordering this test because at present DCIS outcomes are basically crap shoots and there is so much overtreatment that hasn't been avoidable - this starts to reveal where that overtreatment may be!  Unfortunately I may not be in that group, but sisters, we all need to understand which DCIS cases are more dangerous. 

Yes, I have considered mastectomy.  And it was why I wanted the Oncotype test.  Just couldn't wait for the result any longer and have an optimum try for the lump. 

I tried the lump because while Khoury says he can restore sensation, I am not holding my breath that I'm going to get erogenous sensation back after mastectomy, even nipple-sparing.

I have risked the bad cosmetics for the sake of sensation, and knowing that Khoury CAN do a nice job of restoring them. 

And I know that a mastectomy is much more serious surgery thanks to the damn sentinel node business and the (at best) scraping out of the inside of the nipple, and the drains, and the phantom pains and all that.  This is not to be done lightly for pre-cancer and no decreased risk of mortality ...

But now I need to reconsider again, due to my score of 59 with total recurrence risk of 23%, invasive risk of 13%.  for 10 years, but I really have 30 years of risk to consider as I'm 40.

remember DCISdiva - it is cancer, not pre-cancer as you've mentioned. I wish you well whichever treatment plan you chose.