No Oncotype test ordered ??

poopysheep

I was told today that I'm not a candidate for Oncotype testing because they feel that my DX is low stage/grade and that they aren't even considering chemo for me and i'm being sent directly to a RO. I'm a bit confused cause isn't the entire point of the Onc test exactly for people like me? I am thinking of demanding that they order the test ( I live in Canada ).

readytorock

low stage does not necessarily mean you will get low oncotype score.

They are telling you what was standard of care in the dark ages. Now, so much more information is available and you should definitely request Oncotype.

jwilco

I had to ask my first Onc dr and it was ordered. I didn't like him though so I switched to a new dr.

I don't know much about Canada health care, but demand it if you feel you need to know. It really does help when making decisions.

Good luck!

gracie22

yes, it is for people like you--early stage, hormone +, HER -, zero to 3 nodes involved. I don't know what Canada covers, in the US it's supposed to be offered (though as many posts on this board show, "eligible" Americans are sometimes not offered it, either, more typically because a doc has decided on chemo and feels they would not be swayed by the Oncotype results. I don't get it.)

Beesie

How large is the invasive portion of your tumor? The NCCN treatment guidelines say that the Oncotype is used to advise on chemotherapy when the invasive tumor is 0.51mm in size or larger. But for any invasive tumor that is smaller, their chart shows that the Oncotype is not recommended.

https://www.nccn.org/patients/guidelines/stage_i_i... (see the following page for a written explanation of the chart).

If your invasive tumor (excluding the portion that is DCIS) is larger than 5mm, then you should push for the Oncotype to be done. To my understanding, it is part of the protocol in most (if not all) provinces in Canada. What province are you in?

Warrior4sararyan

My doctor says I did not need it, Small tumors and no cancer in lymph nodes. No family history of breast cancer. Stage1a. All this has happened so fast it is hard to get all the information you need and then process it!

radgal

I had it done and grateful I did.

poopysheep

The invasive portion was 1.2cm and I live in Alberta. (the DCIS was 0.8mm) I think I'm going to force them to do it. I realize I have a fairly low risk DX but these forums are proof that that doesn't always mean anything. Where do you find the protocols for each province? Can the RO order the test or who do I have to freak out at to get it ordered? haha

poopysheep

radgal do you mind me asking what your score came back as??

Meow13

How big was your idc portion? I think it has to be atleast 6mm for oncodx testing. Also the test is expensive and your insurance may not cover but some pay the 4,000 dollars out of pocket.

Grade 1 and er, pr postive might be lower risk so not recommending oncodx.

poopysheep

Meow13 the IDC was 1.2cm. I live in Canada so the cost of the test is covered by our health care. And most of the literature states that the whole point of the test is for low grade low risk DX.

beebs2704

I have known others who, with a similar profile of low grade and small tumour, be told that they were candidates for it. Because you are in Canada ( as I am too) it is covered by your provincial coverage so it's free which means they don't order it as easily as in the US. US is different. IMO, it's your body and if you are insistent that you need this for peace of mind, you may get it.

I have a friend who was stage 1, grade 3 with Oncotype 15; I was stage 2( node negative), grade 2 with Oncotype 26. I elected to do chemo although I was seriously disappointed since I thought my score should be lower because of the grading. Chances are your score is low because you are stage 1, grade 1 but at least you'd know.

Meow13

poopysheep, you should tell your mo you really want the test for your own piece of mind.

Truthelizabeth

I am 26 stage 1A grade 1 my oncotype score is 27. I think you should maybe get a second opinion.

Meow13

Truthelizabeth, what was your er and pr percentages? Just curious your score looks high for a grade1.

poopysheep

thanks ladies, I think I'm going to insist on it being done. I didn't spend the night in hospital with my lumpectomy and I never go to the doctor (literally until i found the lump) so they have saved money on me .... i want the damn test - don't care if it's expensive.

poopysheep

Meow13 what sort of correlation does the percentages of ER/PR have on Onc scores... or were you just interested??

Meow13

it is used in their magee equation

KBeee

There are some people who are grade 3 who come back with low Oncotype scores, and some who have grade 1 tumors who come back with high scores. That's why the test is so important. Definitely advocate for yourself. Hopefully it comes back low. Can you get a second opinion with a different MO?

Beesie

poopysheep, it appears that the reason that you haven't been offered the Oncotype is because your tumour is both less than 2cm in size, and is grade 1. Alberta just issued new guidelines for chemo and for the Oncotype test in October 2016, and that seems to be why you don't meet the criteria.

Adjuvant Systemic Therapy for Early Stage (Lymph Node Negative and Lymph Node Positive) Breast Cancer

On page 2, it indicates that "≤2 cm, grade 1, with no other adverse prognostic factors" classifies a patient as being "low risk".

On page 3, an exclusion factor for getting the Oncotype test is "Grade 1 invasive breast cancer (see note*)". The note, however, says "Special considerations, however, may apply, based on multidisciplinary breast cancer tumour board review" which I think means that if you push for it, you may still be able to get the test done.

Also on page 3, the treatment recommendation for patients who are low risk is "Observation* OR Hormonal Therapy" - no mention of chemo.

This may be a change from the previous guidelines. Here is a copy of the form (dated March 2014 but probably still current) that MOs in Alberta use for Oncotype testing: Oncotype Dx™ Testing and Reporting – Oncologist

On this form, it says, "Currently, ODx is being funded to inform adjuvant chemotherapy treatment decisions in patients with fully resected ER+ and/or PR+, lymph node-negative, HER2- negative early breast cancer patients. This funding will be re-examined after comparison with emerging alternative testing strategies in 2-3 years." So I'm guessing that the new guidelines that I linked above are the result of a re-examination that has narrowed the guidelines for who qualifies for an Oncotype test.

Good luck pursuing this with your oncologist.

poopysheep

Wow thanks for all your information - I really appreciate it.

I met with the radiation oncologist and pushed him for the test so he sent me to a MO and after 90 minutes of me arguing my point with her she agreed to send it for testing. She also ordered a secondary review of my pathology because she wasn't convinced (no idea why) that my tumour was actually Grade 1 ( the RO also made mention that it was "unusual" in someone my age - 43 - to have a grade 1 tumour). She did say it was Luminal A.

Somehow I feel like I'm getting the run around. The way they present their numbers in general seems a bit shifty and the insistence that they have no idea any sort of statistical data for "someone like me" was beyond frustrating. I challenged them, politely, about radiation being effective (he wants to do 25 whole breast and 8 boost treatments) and why partial breast couldn't be an option. I expressed concern about the damage to my lung (the position means he felt that I would have 10% permanent lung damage) and wanted some information to weigh the benefits for me to having that done. I'm an athlete and extremely active - my lungs are important to me. Then the MO freaked out when I said I wasn't really sold on the tamoxifen for myself. I am seriously considering (well dependent on the test results and pathology review) at this point of just declining both the radiation and the tamoxifen and taking my chances on a reoccurrence - nothing they have said thus far as really showed me much of a statistical benefit from either (for me). sigh.....

Meow13

poopy, I know the frustration they just want you to shut up and do what they say. This is your decision, there is no absolute right or wrong when it comes to cancer treatment. I understand your concerns I didn't do radiation or chemo. Well there were no recommendations for radiation since I did mx with fantastic margins. But they twisted my arm about chemo. I just said no and that I would try AI therapy. Tamoxifen wasn't recommended since I was way past menopause but did read the cancer side effect from tamoxifen. My SIL got GYN cancer from it, she is stage 4 from it desperately doing chemo and her tumor markers aren't down. They can't tell if chemo is working. The cancer was determined to be throughout the tissue in her abdomen. Surgeon could feel it all over.

Really upset that she was the small percentage of unlucky ones. Have you thought about AI drugs? You could be chemically or surgerically put into meno so you could take AI. It is an option many mo's are suggesting.

Some doctors just get set in their treatment ways and herd people through like cattle. Breast cancer treatment is something that is discussed and not chosen lightly.