i think it's common for an oncologist to not be involved until after surgery. i just asked an oncology counselor today about that, and she said typically it's after surgery that the oncologist is looped in. i'm with ucla so it may be different at other places. i have to say, my experience is totally the opposite -- i was diagnosed in february and won't have surgery until may. you could always see another oncology surgeon for a second opinion.

I think you should look for a new surgeon - arrogance and not listening is not acceptable. My understanding is DCIS is slow growing, and waiting a few months isn't a big risk. After my first DCIS diagnosis I chose to do nothing, just wait and see if any new calcifications developed. They did, after two years, and after a second lumpectomy and DCIS diagnosis I agreed to radiation. Unless you have no other choice of surgeons, my suggestion is take the time to find one that will take your concerns into account.

I third that notion.  If you are not comfortable with your surgeon, get a second opinion and if you like that one better than the one you have, switch rather than fight.  A couple of weeks is not gonna make a big difference.  Best of luck to you.

I agree that you should have a surgeon who will clean up the first surgeons mess. Sometimes they dont want the liability. Surgeons are funny like that. Prayers and gentle hugs

Ideally, there would be a team, called a tumor board, that meets together to formulate a coordinated treatment plan. Pathologist, radiologist (imaging), surgeon, medical oncologist, radiation oncologist, etc. In the absence of that, you want to make sure everyone is communicating. And there is no harm in getting a second surgical opinion or meeting the oncologist before proceeding, is there?

I know someone whose surgeon took them off their blood thinners for a minor surgery, and they had a stroke. Definitely get your cardiologist involved and having the last word on when/if to go off meds. I believe low dose aspirin might at least be allowed.

Remali,

I don't believe they do OncoType DX for a diagnosis DCIS, mainly as this is a test of whether CHEMO would be beneficial (the benefits outweigh the risks) and chemo is also not used for DCIS. The treatment choices are typically lx + rads + tamox/AI (if ER+) or mx + tamox/AI (if ER+) and in some specific cases perhaps + rads. Chemo isn't used as that is for cells that may have escaped the tumor and DCIS, by definition, is in situ (or doesn't leave the duct).

Hi Remali:

The Oncotype test for DCIS speaks to the question of Radiation Therapy and is within the area of expertise of Radiation Oncologists.

The Oncotype test for DCIS is not always offered for a variety of reasons. For example, if the results of any biopsy or surgery showed the presence of invasive disease (e.g., microinvasion), the test would not be indicated. In this regard, be sure to obtain complete copies of the pathology reports from all biopsies, surgeries and any re-excision(s)) for your review and records.

General Information - Oncotype - Invasive disease test versus DCIS test:

Note that the tests for invasive disease and for DCIS differ in the number of test genes used, they are used in different patient populations (different "eligibility" requirements), for different purposes, and their recurrence risk ranges are also different.

Because of these differences, if a person has invasive disease (e.g., IDC, ILC) and received the test for invasive disease, then their Recurrence Score cannot be compared to DCIS scores.

Invasive Disease ("21-gene test"):

The Recurrence Score for invasive disease relies on the mRNA levels of 16 cancer-related genes and 5 reference or control genes from a sample of the tumor. It is used in patients with invasive disease that is hormone receptor-positive, HER2-negative, regardless of type of surgery, to inform decision-making regarding chemotherapy (endocrine therapy alone or endocrine therapy plus chemotherapy).

The standard recurrence risk categories for the test for invasive disease are:

Low-risk (Recurrence Score < 18)

Intermediate-risk (Recurrence Score 18 to 30)

High-risk (Recurrence Score ≥ 31)

DCIS ("12-gene test"):

The Recurrence Score for DCIS relies on the mRNA levels 7 cancer-related genes and 5 reference genes (a subset of the genes used in the invasive test) from a sample of the tumor. It is used in patients determined by surgical pathology to have pure DCIS (no invasive disease) and who were treated by local excision (also known as breast conserving therapy or lumpectomy) (with or without tamoxifen), to aid in decision-making regarding radiation therapy. Eligibility for the DCIS test does not require any particular receptor status.

The standard recurrence risk categories for the DCIS test are different, with "high risk" starting at a higher score:

Low-risk (DCIS Score < 39)

Intermediate-risk (DCIS Score 39–54)

High-risk (DCIS Score ≥ 55)

The Oncotype test for DCIS:

For those with pure DCIS (in one breast) treated by breast conserving surgery alone, the DCIS test generates a "Recurrence Score." Based on certain trial data, individual Recurrence Scores have been correlated with certain average rates of ipsilateral recurrence at 10 years (any event (invasive or DCIS); and invasive only). This type of information is "prognostic" in nature (i.e., it speaks to recurrence risk).

The "eligibility requirements" for the test for DCIS versus the test for invasive cancer are not the same.

Regarding Oncotype for DCIS, the eligibility requirements of the commercial provider are described here (my [edit] in brackets):

"Eligibility" for DCIS test: http://breast-cancer.oncotypedx.com/en-US/Professional-DCIS/WhatIsTheOncotypeDXBreastCancerTest/WhichPatients

- For women with ductal carcinoma in situ treated by local excision [also known as breast conserving therapy or lumpectomy], with or without tamoxifen.

A sample report from the DCIS test can be found here:

Sample report for DCIS test: http://breast-cancer.oncotypedx.com/en-US/Professional-DCIS/Ordering/ReadingReports

When indicated, the Oncotype test for DCIS is usually performed on surgical samples, after surgical pathology establishes pure DCIS in a breast treated with lumpectomy.

The above is probably a broader statement than what occurs in practice in the clinic at this time. This may reflect in part the characteristics of the patient populations in which the DCIS test was evaluated (limitations in "clinical validation"), and that (to my knowledge as a layperson) the DCIS test is not included in the National Comprehensive Cancer Network (NCCN) guidelines for Breast Cancer (Version 2.2017).

The DCIS test may not be recommended to some patients:

- This may reflect that the test is not included in consensus guidelines for DCIS.

- In some patients with pure DCIS, the test may not be seen as sufficiently reliable if their pathology differs in significant ways from that of the patient populations in which the test has been studied (a question regarding the "scope of validation" of the test).

- In some cases of pure DCIS, certain clinicopathologic features may weigh strongly in favor of radiation.

The test is not a stand-alone test. It is used to provide prognostic information about recurrence risk without radiation, and its outputs are considered along with other clinicopathologic factors that affect personal risk profile. In certain cases, these other factors may easily dominate the calculus (making the test of no added value).

The outputs of the test for DCIS currently do not provide a recommendation about radiation, and do not predict efficacy of radiation, per one commentator:

"Of note, in contrast to the Oncotype DX 21-gene array and systemic therapy, the DCIS Score defines a risk of recurrence (prognostic) but conveys no information about the effectiveness of WBRT (predictive)."

All information above should be confirmed with your Radiation Oncologist. Anyone interested in the Oncotype test for DCIS should not hesitate to ask their Radiation Oncologist for current professional advice regarding eligibility and the potential utility of the test in view of their particular presentation and current clinical evidence.

BarredOwl

In case other surgeons have said the same thing about the DCIS test, and other patients may be unduly concerned, given that the DCIS test is not included within our local consensus guidelines, taken alone, the fact that a breast surgeon does not recommend use of the Oncotype test for DCIS in connection with the question of radiation therapy (not his formal area of expertise), should not be a significant cause for concern. You can always discuss it with your Radiation Oncologist after the full surgical pathology is back, assuming you are still "eligible."

Regarding margins for DCIS with breast conserving surgery, our local NCCN guidelines for breast cancer (Version 2.2017) were just updated this month:

"MARGIN STATUS IN DCIS

The NCCN Panel accepts the definition of a negative margin as "No ink on the tumor," from the 2016 SSO/ASTRO/ASCO Consensus Guidelines on Margins.

For pure DCIS, margins of at least 2 mm are associated with a reduced risk of ipsilateral breast tumor recurrence (IBTR) relative to narrower negative margin widths in patients receiving WBRT. The routine practice of obtaining negative margin widths wider than 2 mm is not supported by the evidence. DCIS with micro-invasion (defined as no invasive focus >1 mm in size) should be considered as DCIS when considering the optimal margin width.

For patients treated with excision alone (without radiation), regardless of margin width, the risk of IBTR is substantially higher than treatment with excision and whole breast radiation therapy (even in predefined low-risk patients). The optimal margin width for treatment with excision alone is unknown, but should be at least 2 mm. Some evidence suggests lower rates of IBTR with margin widths wider than 2 mm."

Here is a link to the recent 2016 SSO/ASTRO/ASCO guideline:

"Society of Surgical Oncology–American Society for Radiation Oncology–American Society of Clinical Oncology Consensus Guideline on Margins for Breast-Conserving Surgery With Whole-Breast Irradiation in Ductal Carcinoma In Situ"

Morrow (2016): http://ascopubs.org/doi/pdf/10.1200/JCO.2016.68.3573

This guideline does not apply to the setting of DCIS with mastectomy.

BarredOwl

Remali,

While your surgeon sounds like a jerk (for a whole lot of reasons) and while I agree that it's probably wise that you seek out another surgeon, personally I would not consider the need for a re-excision to be a "mess". Re-excisions are actually not unusual, particularly with widespread DCIS. DCIS usually presents as microcalcifications, which are invisible to the naked eye. So the surgeon is in effect operating blind, removing the amount of tissue that seems to be right based on how the calcifications presented on the mammogram. But DCIS is sneaky and there often can be more in the breast than what shows up on imaging. When that happens, a re-excision necessary. To one of the earlier posts, yes, a frozen section can be done while the patient is in surgery, but this method of doing a quick check of the surgical margins while the patient is on the operating table is far from certain - and in fact widespread DCIS in particular tends to have a high false negative rate. So the patient ends up spending an extra hour or so in surgery and under anaesthesia, the surgeon is told that the margins look fine, and then days later, when the final, more thorough pathology results come out, it turns out that the margins weren't clean after all - and the patient still requires the re-excision. The other issue is that the frozen section can damage the tissue - and again this is a particular issue with DCIS - and therefore impact the ability to provide a full and accurate pathology assessment after the surgery. This is why frozen sections aren't regularly done. This may change in the future as technology improves, but right now doing frozen sections for margins, particularly for DCIS, is actually quite rare.

So the fact that you require a surgical re-excision isn't your surgeon's mess, it's just what sometimes happens. In my case I had what appeared on my mammogram to be two small areas of calcifications, but in the end it turned out that I had DCIS pretty much throughout my breast - and most of it didn't show up on my mammogram. So I needed a second surgery too - definitely not my surgeon's fault.

One additional comment. Although the Oncotype test evaluates the genes within the tumor sample, it is not considered to be a "genetic test". The Oncotype website calls it a diagnostic test. A "genetic test" is a test that's done to determine if you carry any inherited genetic mutations, such as BRCA1 or BRCA2, that might increase your risk to develop breast cancer. This is a simple blood test and it's usually done in cases where there is a lot of cancer in the family, or cases where a patient is diagnosed with breast cancer at a young age (usually under 50). If you use the term "genetic test" to refer to the Oncotype test, you will confuse people.

Do you know the grade of your DCIS? With a 5.5cm tumor, even with a low Oncotype score, I suspect that most Medical Oncologists and Radiation Oncologists would still recommend rads. If the DCIS is high grade (and usually widespread DCIS is high grade), that would seal the deal. So in that case, I can see that the MO might not see the point in ordering the test. That said, with your additional health issues, you could argue that the Oncotype score is more relevant in your case because you might be willing to pass on rads (likely against the recommendation of the MO and RO) if the score is low enough. However if you are resigned to having rads, then there is really no reason to have the Oncotype test done. It's simply one more tool to help with the rads decision, and if the decision is already made.... (Note that this is different from the invasive cancer Oncotype test, where the results are often used to decide whether or not chemo will be recommended, i.e. the invasive Oncotype result holds a lot more weight in the decision-making than the DCIS Oncotype does.)