ER+ PR+ HER- : Stage 1/ Grade 1: ONC test necessary??

I am still waiting for surgery and have exactly what you have.

 Maybe I have it wrong, I am a bit behind you in treatment but I thought the ONC test was exactly for folks like us. On the surface it looks simple and the test can make sure that is the case or uncover other factors that warrent more treatment for good measure.

I plan on doing the test because cancer is unpredictable and whatever happens (hopefully nothing!) in the future, I will not have to look back and wonder if I missed something. I will know that I did the best I could at the time. 

Don't you think you should get a free t-shirt or promotional mug or something when you pay out of pocket for these tests?  

I am 46 so probably in a higher risk catagory that you are. Maybe your doctor is right.

Hope more people way more knowlege and experience than I weigh in on this for you.

Linda ~ There's a perfect example of the differences within this thread.  Did you notice don23's and mommy2two's identical stats, yet totally different Onco scores?    Deanna

Hi Linda,

I think Genomic Health will work with you to help pay for the test if it's not covered by insurance.

Good Luck!

It's all so complicated. My Oncotype score was 27 or 28 - high end of intermediate. I thought sure that meant chemo. BUT three drs said no chemo. Why? Age 62, low mitosis rate, 99% ER+ and they all agreed not many points improvement in recurrence rate. They said big gun was Arimidex.

We'll see what happens.  Best wishes to you!

pam 

Hi Linda,

I'm not an expert but here is what I think:

Tamoxifen works by competing with estrogen to bond to estrogen receptor cells. Arimidex works by blocking the production of aromatase which is essential to the production of estrogen. Both are used for ER+ women, meaning their cancer cells need estrogen to divide and grow.

I know that sounds like  the same thing and the goal is the same but the mechanism is different.

Arimidex is no good for premenopausal women because there is simply too much estrogen being made by the ovaries for it to be effective, In post menopausal women small amounts of aromatase are being produced by the adrenal glands (and maybe liver and fat?) so Arimidex is very good at stopping the aromatase from becoming estrogen. 

Because TAmoxifen works in a different way, it interferes with estrogen in larger quantities, like when the ovaries are still producing estrogen. So it is used for menstruating women. It has been around a long time and used to be given to all ER+ (meaning their cancer grows with estrogen) women.

Arimidex and other aromatase inhibitors have been around only 5-10 years but are now the recommended drug for post menopausal women. So much so that many younger women have oophorectomies so they can take an "AI".

Tamoxifen has more serious side effects; uterine problems and blood clots for instance, but is generally well tolerated. AI's (Arimidex, etc)  have more quality of life issues; joint pain mostly and possible osteoporosis in some women.  Tamoxifen is available as a generic while AIs are currently still under patent and are very expensive.

Pre-menopausal women do not take AIs but post menopausal women can and do take Tamoxifen due to cost or because they are unable to tolerate an AI. 

I hope I am right about all this and hope it helps you.

pam 

RedHeadPam,

You have a different hormone receptor subtype than both Linda and I.  Yours is ER positive/ PR negative - ours are both ER and PR positive.  Grade 1's IDC's are sometimes PR negative, but not usually and when they do turn up that way, you've got to at least wonder if a mistake hasn't been made somewhere in the pathology lab.  The ER+/PR- type seems to be more aggressive for some reason, with a greater risk of cancer specific mortality associated with it and that's probably what your high oncotype score is reflecting. I'm baffled as to why your oncologists wouldn't expect an Oncotype score on the higher side being it was PR negative - they should know this.

In any event, chemo was a good choice for you - and thank God for Oncotyping in helping both oncologists and patients to more clearly see what they're dealing with. But generally, chemo isn't going to be much benefit for the majority of small, ER+/PR+ tumors. They're just too slow growing for chemo to have any significant effect on them.

Linda, it sounds like a well thought out, sound decision. I wish you the best going forward and I love the "pink peeps" things...it makes me smile everytime you say it

Hi Linda,

I am here in Vancouver Canada and was diagnosed 2 years ago at the age of 39.

My tumors were tiny...4mm and 1mm and were Grade 1.  ER 3/3 and PR 2/3.

Oncotype DX was not available to me then but my Oncologist offered it to me anyway if I wanted to pay for it.  He told me Canada was not ready to add it to their regular protocol as they US does because they are still finding that most scores return back as a mid-range where the decision to take or to not take chemo is the same whether you had the oncotype test or not.  I think from his persepective he was not confident that it would change some of the treatment plans that they are doing here.

Anyway...he also told me that with Grade 1 tumors, because they are slow growing.... Chemo has less of an impact.  Chemo works best with fast growing tumors.  He told me I would not have much benefit from it and to take the tamoxifin.

Anyways,,,here I am 2 years later.

Should I have paid for the test or should I have not...who the heck knows at this point. I try not to look back and try to trust the sysetm. I know many Stage 1 women that did not have the Oncotype DX test that did no chemo that have never had recurrance. I hope and pray I am one of them.

Anyways...hugs and keep us posted!

And I just love Victoria