High Oncotype score (62) - worried they missed invasive cancer

CapeMom

DCIS E+, PR+, Her2-, BRCA- with DMX and no reconstruction May 13.  Pathology found no invasive cancer in breasts or 3 lymph nodes.  Originally, onc said no further treatment required.   Then we got super high Oncotype score of 62 and now I'm scheduled for uterus/ovaries/fallopian tube removal on July 30th and then meds to control estrogen for a few years post surgery.    The only people I know that have such high Oncotype scores have actually had some type of missed invasive cancer that they found at a later point.    Has anyone had a very high Oncotype score and they've found an invasive cancer that was missed originally?  Thank you so much!

Racy

I was not aware that Oncotype testing was used for DCIS. I thought the purpose of the test was to predict the success of chemo, which is not needed with DCIS.



Am I wrong or did you have some invasive cancer?

Beesie

The Oncotype for DCIS was just introduced late in 2011 and is used to determine the risk of local recurrence, including the risk of an invasive recurrence (vs. a recurrence as DCIS).  So it is beneficial in helping with decisions on radiation and Tamoxifen. 

DCIS Oncotype scores can range from 0 to 100.  Because it's such a new test I don't know a lot of people who've had the test so I don't know how unusual a "62" score would be.  Nor do I know what it means in terms of recurrence risk - for the invasive cancer Oncotype, there is a chart available that equates the Oncotype score with a recurrence risk but I have not been able to find the same information the DCIS Oncotype.  I suspect this may be because the DCIS Oncotype was brought to market based on these results from 327 patients (over 10 years) so there simply isn't enough data available.

CapeMom, what was the size of your area of DCIS and the grade? The trial was specifically done on low risk DCIS patients.  Mostly it's low risk patients who have been getting the test - this too would be why not a lot of information is available about higher scores. Was your diagnosis originally considered to be low risk?

CapeMom

Thank you Besie and Racy for your responses.  They now do Oncotype tests to see if DCIS patients are at high risk of recurrence and would benefit from chemo.  I had extensive DCIS throughout nearly entire breast (from nipple to chest and side to side- over 14 cm).   We were very relieved when post surgical pathology found no invasive cancer cells in the removed tissue and 3 lymph nodes.   Doc said no further treatment required-- and ordered Oncotype test just to confirm that I would not need chemo/meds.   My onc and gyn onc were very surprised that the score was so high at 62.   For DCIS as well, a score of 30 or more indicates high risk of recurrence.   I've read insurance company articles explaining that they do not cover Oncotype tests for those who've already been diagnosed with invasive breast cancer (not just pure DCIS) because they nearly always have a high score of 50 or more.  So, that makes me concerned that since my score is so high, perhaps there is a chance that I have invasive cancer that was missed, that already passed thru those 3 lymph nodes or that are in the little breast tissue I still have.   Perhaps one day the research will give this answer.  Just curious if others had a super high Oncotype score and what their doctors are saying/recommended to try to prevent recurrence.  Thank you! 

Sydneyluv

The website of the company that produces the Oncotype has a website on which they have an interesting chart giving statistics on the rate of occurrence of the various Oncotype results, fom very low to very high. I found the site interesting. If you google Oncotype, you'll get to the company. I have no time to do that and I don't know how to 'link'. Apologies.



I wish you well in your recovery.

Beesie

Something is not making sense here. 

There are two separate Oncotype tests.

- One is for invasive cancer. This is a 21 gene test. The results give an indication of the risk of a distant recurrence (i.e. mets).  This test is used to help with the decision on whether or not chemo is required. 

- The other one is for DCIS. This is a 12 gene test. The results give an indication of the risk of a local recurrence (i.e. in the breast area).  This test is used to help with the decision on whether or not radiation would be beneficial.

Women with pure DCIS do not get chemo.  So the Oncotype for DCIS does not help determine if chemo might be necessary for a DCIS patient.  It is used to help with the radiation decision.

If a patient has both DCIS and IDC, to my understanding they would not get the DCIS Oncotype test; they will have the invasive cancer Oncotype test. Insurance companies most certainly do cover the Oncotype test for those who've already been diagnosed with invasive breast cancer but these women will get the invasive cancer Oncotype test.  I'm sure that insurance companies won't pay for women with a combination of DCIS and IDC to get the DCIS Oncotype test because the test is not designed for patients with this type of disease (or even for those with large, aggressive DCIS).

CapeMom, since you had such an extensive area of DCIS, did you have a mastectomy?  If so, then I really don't understand why you had the Oncotype test, since it is specifically indicated those who have a lumpectomy for DCIS. 

Additionally, the primary purpose of the DCIS Oncotype test is to determine if some low risk patients may be able to skip radiation.  The clinical trial was done only on women who had less aggressive diagnoses of DCIS - those who had grade 1 or grade 2 tumors that were less than 2.5cm in size, or those who had grade 3 tumors that were less than 1cm in size.  So here again, CapeMom, it makes no sense that you had this test since with your extensive DCIS, it was pretty much guaranteed that you would have an extremely high score.

In your first post, you mentioned that "The only people I know that have such high Oncotype scores have actually had some type of missed invasive cancer that they found at a later point."  I'm quite confused by that.  Are these women who had what was thought to be pure DCIS who had the DCIS Oncotype test?  And if so, how was it later determined that they had a missed invasive cancer?  Usually, once the pathology is done, it's done.  If something was missed, it was missed. So how would a missed invasive cancer later be found?  What am I missing here?

Here is some information about the Oncotype test in general, and specifically, the DCIS Oncotype test:

Oncotype DX Breast Cancer Test: Now for DCIS Too    "...In the case of DCIS, the test only uses information from 12 genes; the other 9 genes in the 21-gene assay are not applicable to DCIS.

In a new study, the 9-gene assay predicted 10-year risk for local recurrence in patients with DCIS who were treated with lumpectomy alone, without radiation therapy.

Local recurrence was defined as either a new invasive breast cancer or the recurrence of DCIS in the same breast (ipsilateral breast event).

A DCIS recurrence risk score should help clinicians and patients decide about the need for radiation therapy...  Radiation therapy has been shown to reduce local recurrence risk, said Dr. Solin. However, there are no "reliable" methods to determine whether patients can safely forgo radiation and be treated with surgery alone, he explained."

Oncotype DX Test  "...The Oncotype DX test is a genomic test that analyzes the activity of a group of genes that can affect how a cancer is likely to behave and respond to treatment. The Oncotype DX is used in two ways:

• To help doctors figure out a woman’s risk of early-stage, estrogen-receptor-positive breast cancer coming back (recurrence), as well as how likely she is to benefit from chemotherapy after breast cancer surgery.
• To help doctors figure out a woman’s risk of DCIS (ductal carcinoma in situ) coming back (recurrence) and/or the risk of a new invasive cancer developing in the same breast, as well as how likely she is to benefit from radiation therapy after DCIS surgery."

CapeMom

Hi Beesie,  I had extensive DCIS in one breast and a double mastectomy on May 13th.  The biopsy showed no invasive cancer cells in removed tissue or 3 removed lymph nodes.  I am suspicious that a very high Onctotype score like mine (62) indicates that there is invasive cancer in the breast tissue that the surgeon did not remove.   Mastectomies can only remove approx. 95% of breast tissue.   I suspect that many with a super high Oncotype score like mine have cancer cells in the remaining breast tissue.  In the last few days, I have found a red lump about one inch above my mastectomy scar on the side where I had the extensive DCIS.  I see surgeon on Wednesday and presume she will do a biopsy to test for recurrence.  Please cross your fingers for me because a recurrence only two months after mastectomy is bad news.   Thank you Beesie for the information!

BayouBabe

CapeMom - could the red lump be a spitting suture? I had several of these months after my surgery. They, too, had migrated a bit from the incision.

Beesie

CapeMom, I agree with BayouBabe.  The red lump could be a suture. 

As for your Oncotype test, the simple fact is that you should never have had an Oncotype test done. 

The purpose of the Oncotype test for DCIS is to determine if someone who has a low risk case of DCIS might be able to pass on having radiation after a lumpectomy.  The Oncotype is not meant for women who have aggressive cases of DCIS, nor it is meant for anyone who requires a MX because of the size of the DCIS.

Your DCIS, based on the size alone (you have not mentioned the aggressiveness of the grade or type) meant that there was no possible way you could get away with a lumpectomy without rads.  In fact you couldn't even get away with a lumpectomy with rads - you needed to have a mastectomy.  So I would think that it was pretty much a given that your DCIS was going to score through the roof on the Oncotype test.

The DCIS Oncotype is a new test and it's not used very often.  I spend a lot of time on this board and only am aware of a few women who've had the Oncotype for DCIS.  When you say "I suspect that many with a super high Oncotype score like mine have cancer cells in the remaining breast tissue." what is causing you to say that?  I am not aware of any information that suggests this to be true. 

It is true that there is always a small amount of breast tissue remaining after a mastectomy, and that's why it's possible for someone who's had a MX to have a recurrence.  Even if your diagnosis was pure DCIS and there was no invasive cancer, 50% of DCIS recurrences are not found until the cancer has evolved to become invasive.  So yes, it is possible that you could have an invasive recurrence.  But this is possible for anyone who's had a MX for DCIS.  The factor that increases your recurrence risk the most is the size of the surgical margins.  Do you know the size of your margins?