later oncotype test

hodgy

Hi all! Maybe some of you could give me some ideas as to what to do. I was diagnosed in January, 2015 with IDC, ER+ and PR+ at 90%, Her2-, 0 nodes. The ductal cancer was 1.2cm and the invasive cancer was 5 mm - very small. Because of this I was not given an oncotype test. I was told I was a very low risk for recurrance and the test would also show this. So, instead I had a lumpectomy, radiation, and now Tamoxifen. I really wish I had the oncotype test because I think often that it would have been nice to have had an actual blood test to verify the oncologist belief it was low risk - plus, I have since read that low risk in size could actually give a higher risk rate as there are no guarantees with cancer... Here is the question. Can I request the oncotype test 6 months out from surgery? Would it be worth it to me personally to know the MO was correct in saying it was low risk? Would it be worth knowing the score if it came back high? What are your thoughts? Thanks and best wishes to all!

123JustMe

Hodgy,

My MO didn't order the Oncotype for me "because I think it will be between 4 and7".  I would rather see the number for myself so I called the MO's office and had them order it anyway.  You might try calling the office to see if it can be done.I will still be in rads when the results come in.

Stacy7

My understanding is that highER+ tumors work very well with tamoxifen and small tumor no lymph node is a good thing under circumstances. I would trust my doctor and move on in a positive way while on tamoxifen. Thats what i convinced myself to do and i feel normal again, very important for immune system. You should order test for peace of mind but dont sweat it while you are trying to recover and heal.. Its not good for us to stress. My onco was 17 BEST WISHES!!

edwards750

I would call my ONC and order the test. I'm like you I would want to see for myself. It's too big a gamble to just accept what the Dr thinks. BC is a crapshoot. Don't play Russian roulette with your life. And thenthere's he could be wrong.

Btw I had the test and glad I did. Low score and dodged chemo as a result. No guarantees but eased my mind a bit. Radiologists and oncologists both trust the test.

Good luck!

Diane

edwards750

Wanted to just add there are ladies on this forum who had the test and their doctors were stunned by the scores - higher and lower than projected. It's a pricey test so hopefully your insurance co will pay for it - still worth it.

Diane

SpecialK

The problem with ordering the Oncotype Dx test this late is that the information it provides is unlikely to provide any substantive change to your treatment choices. The purpose of Oncotype testing is to determine whether adding chemotherapy to hormonal therapy is likely to provide benefit. Since the optimal window for chemo has passed the information will have less bearing, and your insurance is highly unlikely to pay for this expensive test knowing it provides little information that can be acted upon. You have had surgery and radiation, which were appropriate choices for your situation, and you are on hormonal therapy now, which is hopefully providing you protection for the future. I think the question you have to ask yourself is whether knowing that you had a higher Oncotype score than your oncologist thought you might, would you change anything you are currently doing - and what would that be, or would this knowledge just worry you more than you might otherwise be? It is unfortunate that we all have concern about whether our treatment did what it was supposed to, or whether we will recur or progress - it is the nature of the beast.

Janett2014

The other consideration is this: the Oncotype test is not a blood test. It analyzes tissue which was taken from the surgery. Sometimes it can't even be done if the tumor is very small.

BarredOwl

Hi Hodgy:

I don't really know, but SpecialK raises a good question about whether or not chemotherapy would be beneficial and indicated six months out from surgery, a point you could take up with your providers.

I note from above the invasive component is stated as 5 millimeters. I think you are saying you had DCIS (1.2 cms) with an invasive component (IDC) that was 5 millimeters. The size of IDC controls this decision. It may help you to know that for Hormone receptor-positive, HER2-negative invasive ductal carcinoma, which is pN0 (node negative), for a Tumor ≤0.5 cm, the National Comprehensive Cancer Center (NCCN) Guidelines (Version 3.2015) provide:

"Consider adjuvant endocrine therapy"

So for 0.5 centimeters or less of this type of IDC, neither an Oncotype DX test nor chemotherapy are recommended under the guideline.

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It may also help you to know that under the current NCCN Guidelines (Version 3.2015), for Hormone receptor-positive, HER2-negative invasive ductal carcinoma, pT1, pT2 or pT3, node negative disease, with a tumor >0.5 cm, it says (emphasis added by me):

"Consider 21-gene RT PCR Assay"

This is a reference to the Oncotype DX test, and as SpecialK notes, it is not a blood test per the Guidelines: "The 21-gene assay using reverse transcription polymerase chain reaction (RT-PCR) on RNA isolated from paraffin-embedded breast cancer tissue (Oncotype DX) is among the best-validated prognostic assays. . ."

Note that the Guidelines use the word "consider" indicating it is also within the guidelines to NOT perform an Oncotype DX test even when >0.5 cm. In this case, when the Oncotype DX test is not performed, the Guidelines further provide the following information regarding treatment:

"Adjuvant endocrine therapy ± adjuvant chemotherapy"

Thus, the Guidelines include a chemotherapy decision based on the usual traditional factors even for >0.5 cm (with the stated features).

BarredOwl

BarredOwl

Dear Hodgy:

I just edited my post above, to add the NCCN recommendation for 0.5 centimeters or less, since you stated above that the size of the invasive component was 5 mm.

However, in another thread, you said it was 8 mm or 0.8 cms, so please note above what the guidelines say for larger than 0.5 cms, if that is the case.

I am also assuming that the invasive component was determined to be hormone receptor positive, and HER2 negative.

BarredOwl

hodgy

Thank you to all of you who have replied to my concern. There is no easy answer to our worries once we receive word we have bc. We all feel somewhat protected while we are going through treatment. But when it's finished and we are down to the pill only - I guess that is when we start to question ourselves as of whether we did enough. I'll be seeing my MO next week. First, I need ask if the invasive component was 5mm or 8mm. It was tiny (thank goodness) Still not sure what I'll do about the onco test yet. Thanks again for all your thoughts. It was exactly what I needed to hear! Best wishes to all of you!

BarredOwl

Hi Hodgy:

You can request a copy of the pathology report of your surgical samples. You may wish to obtain a copy before your meeting with the MO, so you can use this opportunity to discuss anything that you are still worried about or anything else you might unclear about.

BarredOwl

hodgy

Thanks, BarredOwl! I will do that. I see my MO next week. And I will be ready with my list of questions ...