Recently Diagnosed - Many Questions - Overwhelmed

It is my understanding that the MRI is a pretty standard part of the pre-surgical workup, as it helps the surgeon identify the true extent of your tumor (I think this is particularly true with DCIS, which might be very tiny indeed) and lowers your odds of needing a rerun of your surgery to achieve clear margins. And by the way, please do have the MRI before the second biopsy. There is a chance that it will show another area of concern needing biopsy. I know you do not want to go through that a third time when the two could be combined in one unwelcome procedure.

My MRI showed an area that, when biopsied, proved to be a conglomeration of about six different benign but abnormal cellular changes.. Technically, this was a false positive. In my opinion, it was a lucky find and I was very happy to have it removed.

As for your insurability, genetic counseling has no effect. Your testing is not designed to diagnose a problematic set of symptoms, but to determine whether your risk of future breast cancer is high. Your diagnosis of DCIS, however, does affect the life insurance and disability rating an underwriter would offer. At this point, completing your diagnosis and treatment would be required before an offer could be made. Existing term life insurance can normally be converted into a permanent plan at the same rating as when you first took it out. Feel free to pm me with questions along this line as this is my professional expertise.

Someone with more knowledge of DCIS will probably be along soon with clarifications, but I believe it highly unlikely you would need to join a trial in order to have an oncotype test. Moreover, I believe radiation is standard for medium or high grade DCIS.

Here in California where I live doctors often use a breast mri, stereo. biopsy,ultrasound and mammogram to get as much information before they "go in". What I learned here on this site is that each test gives the doctors a different look or perspective  of the area in question.In my opinion that is a good thing.  Stay on this site and you will learn a lot. My own doctor (primary care) told me I knew more than she did about dcis and it is because of the women here that are actually doing research and are sharing it. But remember each woman and case is a little different in what type of treatment they need and the treatment we choose for ourselves.

Hi Balthus:

I am just speculating here, so please confirm things with your providers, but I think it is possible that your surgeon feels that the Oncoptype test for DCIS may not be very valuable for decision-making in your particular case. But if it were done, she would support it in the context of a clinical trial.

Perhaps she is surmising that traditional pathological factors will weigh in favor of radiation in your case, and/or she may feel that the test is not sufficiently validated, and/or that the test is not sufficiently reliable for you in view of the composition of the patient pools in the studies performed to date. Although the decision will ultimately be made in light of the final surgical pathology and in consultation with a Radiation Oncologist, I do appreciate that the likelihood of receiving radiation may play in to the decision between lumpectomy and mastectomy. Thus, you may wish to ask your surgeon to explain the basis for why she does not support the test, in case it reflects a view that radiation therapy would likely be recommended. You may also ask for a consultation with a Radiation Oncologist prior to deciding on your surgical plan.

I note that Beesie's post (last edited on Feb 11, 2015) linked above has commented on the composition of the study population (relevant text reproduced here):

"If you have pure DCIS and are having a lumpectomy, you may benefit from the new Oncotype test for DCIS. The original Oncotype test was used to determine distant recurrence risk and the need for / benefit from chemo. Since chemo is not given for DCIS (see above), that version of the Oncotype test wasn't used on women who had pure DCIS. In December 2011 a new version of the Oncotype test was made available, specifically for women with DCIS. This Oncotype test provides an estimate of the 10-year risk of an invasive recurrence after lumpectomy surgery; test results may be helpful in determining whether or not to have radiation after surgery. Note however that all the patients in the trial had low or intermediate grade DCIS that was ≤2.5 cm in size or high-grade DCIS that was ≤1 cm. The other criteria in the trial was that surgical margins had to be 3mm or greater. Therefore this test may not be worthwhile for those who have larger areas of DCIS or smaller margins, cases where it's more clear that radiation can provide a significant reduction in recurrence risk. Note as well that the Oncotype for DCIS is new and doesn't yet have a lot of testing behind it. Even Genomic Health, the company that sells/markets the Oncotype tests, says that the test provides "additional information" that doctors and patients can use in addition to "the traditional measurements such as margin width, tumor size and tumor grade". Given the cost of the test (approx. $4000), this may put into question the value of the Oncotype test for current DCIS patients, at least until more testing is done on the test itself."

I believe that this is the study Beesie is referring to (with accompanying commentaries):

Solin et al (2013): http://jnci.oxfordjournals.org/content/105/10/701....

Berg commentary (2013): http://jnci.oxfordjournals.org/content/105/10/680....

Duggal commentary (2013): http://jnci.oxfordjournals.org/content/105/10/681....

However, since she last edited her post in Feb. 2015, another study came out in which "Individuals in our population cohort were not as highly selected as those in the ECOG E5194 study":

Rakovitch et al. (July 2015): http://link.springer.com/article/10.1007/s10549-01...

pdf access here: http://link.springer.com/article/10.1007/s10549-01...

I confess I am still trying to figure out the inclusion/exclusion criteria of the 2015 study.

Note that while the National Comprehensive Cancer Center (NCCN) guidelines for Breast Cancer (Professional Version 3_2015) include the use of the other Oncotype DX test (21-gene test) in certain cases of invasive disease, the NCCN guidelines (which predate the July 2015 publication) do not seem to mention the Oncotype test for DCIS.

Anyway, questions for those interested in the Oncotype test for DCIS might include: What patients are eligible for the test? What is the quality of validation of the test? Do consensus treatment guidelines incorporate this test? How relevant are the patient populations studied to my particular presentation? Could the results affect the recommendation in my case?

Best of luck to you.

BarredOwl

Hi:

It is a huge amount of information to absorb, and they seem to have given it to you all at once! You are asking the right questions, and you have time to investigate, think on it, and ask follow-up questions.

I believe the Oncotype test for DCIS would be done on a tissue sample from the surgery (i.e., after lumpectomy). This is because it needs a reasonable amount of tissue. Also, sometimes a small area of invasive disease is found, and if so, then the DCIS test would not be apropriate or meaningful.

As noted by others, at some point, you may also wish to seek a second opinion. That could include an independent review of the pathology slides (sent overnight), all imaging, related written reports, and an independent reccomendation regarding initial treatment. Again, you have time and can ask your surgeon to confirm that you do.

BarredOwl

Hi:

The 2015 study I cited (published after Beesie's last edit) included high grade patients, although I'm not sure of the range of sizes. Margins also play in. The margins and true size or extent of the DCIS (now estimated1.2 cms) will not be known until after surgery.

I agree with Ballet that with certain surgical pathological findings, such as extensive high grade disease, the test reasonably might not be recommended or one might not be at all comfortable in relying on it.

As Beesie and the commentary stated, the test does not make a recommendation about radiation. It is not a stand-alone test. It is used to predict the risk of recurrence without radiation, and is used in conjunction with all other relevant info to reach a decision about risk/benefit. In some cases, such other info may easily dominate the calculus.

Again, this DCIS test does not appear in the most recent NCCN guidelines, and if these boards are any indication, is not used nearly as often as the test for invasive disease.

BarredOwl

Just want to add I believe preoperative breast MRI is very important before making any treatment decisions.Good luck....