Oncotype 22, Extranodal Extension, No Chemo?

Pdc

I saw my MO yesterday. My oncotype score is 22, and he says that I don't need chemo.

But, my pathology report from surgery says there was extranodal extension present in the sentinel node they removed.The report also says there was not any lymph-vascular invasion identified, but multiple foci of perineural invasion were present.

While I am happy about not having to go through chemo, in the back of my mind, I am worried it spreading. I mean, how does he know that it hasn't already? I'm a little confused and would appreciate any advice or comments you have.

keepthefaith

I had an onco of 21. I am not familiar with the terms of your DX, but maybe a mammaprint test or 2nd opinion would be helpful...? I had no LVI identified. Chemo wasn't too hard for me, but that's not always the case. Best wishes, hard decisions. ((HUGS))

bevin

HI, I'd also suggest another opinion or 2. most insurance will cover second opinions. with extranodal extension and lvi, I'd be wanting another onco to give an opinion.

ThinkingPositive

I had extranodal extension. LVI present. 1 node positive. MO said to do chemo.... no oncotype done since he figured it would come back intermediate. Was grade 3 as well. So I didn't hesitate to have chemo

Irene1524

Hi. I just found out my sentinel lymph node had an Extranodal extension “less than 2 millimeters”. Curious to know what you ended up doing regarding chemo. I plan to get at least two opinions on how to proceed, but would love to know what advice you received, too. Thanks

carmstr835

Hi, I too had extra nodal extension and onca score of 17 and 19 my oncologist said no chemo, but my 2nd opinionsaid yes to chemo. He also redid the pathology and found I was HER2+. My case was put before the tumor board and it was decided I get HER2 chemo. Please get a 2nd opinion or a third of possible. I completed my chemo in 6 cycles with no issues at all, except chemo brain, but that is improving. I also had 30 fractions of radiation over 7 weeks. Now just finishing up the herceptin and perjeta treatment for HER2+. Good luck to you and I Wish you the best in deciding what to do.

KBeee

Agree that a second opinion is warranted with an intermediate score

ThinkingPositive

I didn’t have Oncotpye test. My mo said chemo so why wait. Had I known better and wasn’t so trusting I would had pressed for it and requested second opinion of pathology report. I guess I will always wonder and worry. Nothing I can do about it now right?

EastcoastTS

ThinkingPos:

I had Ontotype, my score low enough to warrant no chemo, and I worry because I chose no chemo.

So...

(we all worry, I guess, right?) Cancer is a CRAPSHOOT!!!

Amie03

ThinkingPos
I would love to hear what you decided? My case is similar IDC with Lobular features, I also had extranodal extension in 1/3 nodes and LVI in tumor, Grade 2. Oncotype came back 20.
2 different opinions 1 yes for chemo, 1 with No? I'm not sure what to do? This is so difficult!

Meow13

Amie, I had 2 tumors 1cm each, ilc and idc with lobular features my grade was 2, low mitotic rate 1. I did mastectomy and found the tumors were separate occurrences with 95% confidence, er 95% positive but pr negative. I didn't have node involvement. My oncodx was 34. Chemo recommended but I chose to do AI drugs only.

I am over 6 years NED. I looked at all the data not just the oncodx score and made the decision. There is no right decision, if you believe chemo will benefit you and you have a doctor's opinion supporting it then do it. Hormone therapy is effective treatment as well.

ThinkingPositive

the thing that scares me is how do you know the hormonal therapy is working? Especially if you have no symptoms to alert you?

Meow13

That is the thing, you don't know if treatment is working. I mean if you are doing chemo or hormone therapy to prevent recurrence there is no way to gauge if it is working. At least presurgery chemo or hormone therapy and you see the tumor shrink you know it is working to some extent.

I hope I live to see the day that treatment can be shown to eradicate the cancer cells and we can know we are cured.

ThinkingPositive

So then is it true that most of us have cancer cells floating around in our bodies after our surgeries? Lying dormant and getting chemo is to “maybe" kill them and hormonal therapy to keep them from getting estrogen? My MO said well we'd need to do chemo “In Case" a stray cell got out there. It seems the further I get from the end of my treatment the more questions I have and I am afraid to ask.

moth

I just read about theories of breast cancer recently & this really touched on stuff I think we don't talk about enough in terms of our understanding of breast cancer. Here is where I read about it & here's my brief summary of it. https://alanhollingsworth.wordpress.com/2018/02/

There's a theory (Fisher ) that breast cancer is either localized or metastatic at the time it presents.

The older theory posited that breast cancer started in a location and then spread; that gave us radical mastectomy as the preferred treatment because the idea was you need to treat the source and that would prevent spread. The Fisher theory (which led to the idea of lumpectomies) says it's a systemic disease and the tumor could be viewed almost a symptom of the systemic disease. So in that model, yeah, we potentially have cancer cells or cells capable of mutating to become cancer cells, floating around. What we don't know is whether they will or won't.

Btw there's a third philosophy which says it's kind of a mix of both models - that seems to be what mostly underpins our treatments now. There's still so much we don't understand about this disease and what triggers it...

ThinkingPositive

Pretty scary isn’t it? My MO says the longer you are cancer free the risk diminishes. But that’s not true either is it??

edwards750

I think it is ThinkingPositive. From what I’ve read and heard most cancers recur in the first few years after DX. Of course there are no guarantees so you can choose to buy that or not. There are of course exceptions like anything else.

There are countless articles written about BC by very well known and respected oncologists and scientists and a lot of them disagree with the cause, effects and even treatments for BC.

I followed my MO’s advice start to finish. Frankly I was afraid not to.This August I will be 7 years out. I’m no Pollyanna but I do worry less as time passes.

Diane

Lisey

I was a 20 oncotype and so I demanded the mammaprint - which doesn't have an intermediate. It came back low risk, so no chemo. I highly suggest to all the intermediate ladies on the fence to get the mammaprint.

EastcoastTS

Lisey:

I asked for Mammaprint, too. And I came in with Oncotype at 14. I know, I know, it's a bit low to ask for that. But I wanted ALL the information I could get. And I already knew that if insurance denied (which they did and I really don't blame them) that I would be offered a lower rate. I believe it was $500. WELL worth it, imho.

EastcoastTS

I should add that I wanted all the info I could get if I was refusing chemo.

ThinkingPositive

Exactly what info does the Oncotpye test mammaprint print give? I mean I know it’s whether to do chemo or not but what exactly does it mean if you get a low score? Chemo won’t help you or your cancer isn’t going to spread or your cancer isn’t bad enough? I was just told you are doing chemo. No need to wait or two test resul

moth

ThinkingPositive - my MO said a low Oncotype score would fundamentally mean the risks of chemotherapy would outweigh the benefits.

I asked her specifically if it was because it wasn't likely to recur or because it was resistant to chemo and she prevaricated. Made it sound like it was mostly a low recurrence risk but there was a small chance it just wasn't responsive to tx.

Was all moot in my case as mine came super high (because oncotype has me as TN)

Lisey

Here's a good article. Basically the take away is this: Among women with early-stage breast cancer who were at high clinical risk and low genomic risk for recurrence, the receipt of no chemotherapy on the basis of the 70-gene signature led to a 5-year rate of survival without distant metastasis that was 1.5 percentage points lower than the rate with chemotherapy. Given these findings, approximately 46% of women with breast cancer who are at high clinical risk might not require chemotherapy.
http://www.agendia.com/new-england-journal-of-medicine-publishes-mindact-trial-results/

Mammaprint can spare people from chemo when the signs point to chemo in the clinical stats. Chemo can be dangerous and the genetics of the tumor can outweigh the clinical stats. For example, you could have a large tumor with a snl node positive (high clinical risk) but have a low genetic risk score and not have to do chemo. Likewise you could have a tiny tumor with no node spread and come back high risk genetically..

The difference between Mammaprint and Oncotype is that Mammaprint doesn't have an intermediate or gray area...

Also, I've been told my out-of-pocket for Mammaprint would be $500 max. It's been 18 months and still no bill, but I'm prepared to pay the $500 if it ever shows up. - TOTALLY WORTH IT, and having a second opinion genetically, with my Oncotype 20 score.

ThinkingPositive

Thanks for te info. Its been 3 years since last treatment and there are periods where I get extremely worried and it's all I can think about. This obviously is one of those periods!!! Thanks again. Always helpful to take to those who understand.