Anyone with DCIS had the Oncotype test?

Infobabe...I was aware of the reply that your doctor's office gave you. That's why I said to you that you need to speak to your doctorS.  I mentioned that I thought this was more of an issue concerning your doctors' staffs, rather than the doctors.  And again, like I said earlier, it can't hurt to have several opinions from other physicians.

The feeling I'm getting from reading your posts here and on other threads is that you are NOT being given enough information from your physicians FOR YOUR COMFORT ZONE.  Instead, you are coming here to these threads to find out information that you believe your physicians should be telling you in the first place.

Furthermore, because you are new to this "world" and have never studied statistics (like most patients), and do NOT understand well the levels of proposed treatment  (again, like most patients), you are upset.  And THAT'S what needs to be addressed.

I was very fortunate to be referred to, IMHO, excellent physicians.  My breast surgeon immediately ordered the Oncotype DX test for my invasive breast cancer and I had the results by the time I met with my MO.  Deciding on whether or not to have a lumpectomy or mastectomy, I thought was very easy because my surgeon said he could get excellent margins and a good cosmetic result.  He also mentioned that if I agreed to the lumpectomy, that I could choose between brachytherapy or whole breast radiation.  He did point out that it was the left side and that the RO would be mindful.  When I met with the RO, I was told brachytherapy was still considered "investigational" and was NOT the Standard of Care, but I was a good candidate for the procedure.  When I finally met with my MO, he already had my Oncotype DX report in front of him, thanks to the breast surgeon and he was then able to discuss with me my next level of care.  He CLEARLY went over with me what the Standard of Care was.  He discussed with me the NCCN breast cancer guidelines.  He asked if I wanted to participate in one of two clinical trials, The SOFT trial and/or TAILORX.  He then discussed with me all Standard of Care treatments as well as alternatives. 

I was also given a sheet of paper with things to do to live a healthy lifestyle which I was told also contributes to lowering my future risk.  After reviewing the sheet with the MO, it was agreed that I could tear up the sheet because I was already doing EVERYTHING on the list BEFORE my diagnosis.  Pretty frustrating that there wasn't anything that I could do more....

So you see Infobabe, I think your issue is one of communication.  You are enlightening yourself with information here that should have been spelled out to you by your physicians.  They should have told you that you could have the Oncotype DX test for DCIS.  They should have added that it is STILL investigational for DCIS and hasn't been recommended yet in the NCCN guidelines.  They should have told you that many women over the age of 70 with very favorable prognostics MIGHT defer radiation altogether. And if they believe you are a candidate for radiation, they need to spell out why and give you the level of evidence.  This is information that THEY should have been informing you of.

Sooo...my recommendation to you is to consult other physicians.  You don't need curt answers to your questions.  And IMHO, you shouldn't NEED to ask many questions if you are under the care of physicians and staffs who are doing their jobs well.  I distinctly recall that when my physicians asked me if I had any questions, I really had only one or two questions for them because they had done an EXCELLENT job of explaining most things to me.  Furthermore, when I now visit with my MO, I usually have only a post-it with a word or two on it for discussion.  And, most importantly, when there are published reports about BC that I think are relevant to me, I call my doctor's office and the Physician Assistant returns my call.  Likewise, I've been informed by my MO when I need to DIRECTLY contact him and in those few situations, he has returned my calls as well.

That's the kind of care that I am accustomed to and receive.  Seems like you have your work cut out for you!

Good luck.

Infobabe...The decision making process, following diagnosis, is the most stressful time.  I promise, once you decide what treatment plan to follow, and after completion of active treatment, you will feel better.

Furthermore, I don't think you need to travel an hour and a half away to The University of Michigan to get good care.  There are terrific physicians EVERYWHERE!  My 87 year old, retired nurse, mother tells me that I get great care for my family and me because I have my doctors "trained."  That's NOT true.  I just seek out physicians who give me the level of care that I expect to receive.  That also goes for their staffs as well. If I'm not happy, then I move on.  I will NEVER accept the level of care that some people accept as being "normal." 

Again, good luck to you.  Thoughts and prayers to you.

I had the test.  Unfortunately, I had a high score.  It did make the decision-making much easier for me, though, as I was hesitant about having rads.  I was the first one from my breast center to have the samples sent out.

I just got my results.  I'm smack dab in the "intermediate" score range.  My surgeon is recommending re-excision to get larger margins and then, I imagine, radiation.  I'm taking it all in and digesting all this means.  She's going to have her office send me a copy of the report.

I wished for a more definitive answer but this is the one I got so I'll work with it.

Infobabe, becasue of the involved margins, I will have to have MX so we currently do not plan for any radiation.  

I am trying to do my research and find that it is getting confusing as to which doctor to speak with. I was also told that I wouldn't need Oncotype test. I am thinking of making 2nd opinion onclogy appointment to confirm this. any thoughts?

Infobabe - my surgeon told me the opposite regarding the test and tamoxifen. I'm still waiting to get my copy of the results; when I do I'll see if it mentions it.  Good luck to you!

Infobabe....I so wish you had the Dr's we have here in Pennsylvania.  Although my BS didn't do the Onco DX testing but it sounds like my MO will be doing a just out up & coming new type for DCIS to do new subtypes for DCIS.  I haven't seen my MO yet.  But my BS & him along with other Dr's will be doing my case on a Tumor Board.  Many Dr's from Onc's, Surgeons, & Radiologist's get together once a week to discuss BC tumors that are complicated & what's the best most up to date way to treat them.  My BS has already consulted them on several occasions about my DCISmi that's ER-, PR-.  grade 2-3,  2.8cm.  We are waiting for the Her2 testing to come back.  I'm also pre menopause.  I'm in a gray area....they are not sure what to do with me.  I wish you the best with those Dr's.  My BS welcomes my ?'s & doesn't see it as the threat.  Maybe you could do a Conference Consultation with BC Dr's at John Hopkins.  They have a wonderful team there.  Several of my friends have gone to them for BC.  I am at a much smaller place in York, PA.  But they are very comprehensive in there approach to treatment.

Thanks Marilyn I was hoping someone in her state/area would come along & have some helpful Dr's, Breast centers that might be able to help her out.  It's frustrating when your not sure who or where is the best or better place to turn to for answers!

Infobabe,

Why wouldn't your MO give you an AI, like Arimidex or Femara rather than Tamoxifen? I thought AI is standard of care for post menopausal women. 

edited to add,  I also had to fight for the Oncotype to be done in my situation and I also ended up switching to a new MO.  I'm in a much better place now.