ONCOTYPE HELL, PLS ADVISE

Anonymous

ONCOTYPE HELL, PLS ADVISE

NizD

This is my first post, pls be gentle

May 8th, 3 tumors IDC and a load of DCIS, removed with bilateral mastectomy 5/25/17 in nipple sparing mastectomy. I am stage 1, n0. ER/PR+ HER-. Tumor grade intermediate, KI-67 scores range from 20-50. Negative BRAC tests. No health issues/risks. I'm 42 yrs old.Everything looks really good down there!

ONCOTYPE results are in: 24. This report gives you a 5 yr risk of recurrence /mortality for 5 yrs of tamoxifen v 5 yrs of tamoxifen and chemo. Mine say tamoxifen alone: 14%. Tamoxifen + Chemo 13%.

Am I to assume that this means that chemo isn't worth it?

And if that is true, what could help bring down that mortality percentage? Perhaps that's where ovarian suppression/removal comes in?

Thanks so much in advance. I'm alone and freaking out.

hyphencollins

Don't freak out...we're here for you . Have you had your consult with the MO about your score?

hyphencollins

oh...just wanted to add that the 14% is not the mortality rate at 5 years. It is the risk of recurrence during that time frame (I had thought maybe it was 10 years but not sure).

kira1234

NizD my score was also 24. Chemo was recommended for me. It's not fun but doable for most. Just remember that tamoxifen or one of the ALS is our best defense against getting cancer again.

Rubyroo

hi NizD,

I am in a very similar boat and just received my score today - my oncotype came back with a score of 25 but my overall risk with tamoxifen only is 11%. I also have multifocal IDC with a bunch of DCIS and am somewhat ER+, but highly PR+ and HER-.

My onc thinks chemo will reduce by 4 or 5% which she is recommending, but I am very much having a dilemma too because I am also pregnant. So...unfortunately I have no real advice but wanted to say you're not alone

kira1234

Rubyrorr I pumped a blog about pregnant and cancer here

Rubyroo

Thanks Kira!!

kira1234

I hope it helps

NizD

Hi!

No, my appointment w/ the medical oncologist is in 3 days. My report specifically states that this is a graph for recurrence or mortality in 5 yrs. Not sure why its not a 10 yr estimate but whatever.

My KI scores were 20, 30, and 50% (so all high), my tumor grade was intermediate, and this test grades the recurrence as 24, ie intermediate. What confuses me is that the benefit of adding chemo to the tamoxifen only improved my 5 yr recurrence by 1% (from 14% to 13%.) Anyone figure that one out? Doesnt make sense to me. I guesss that's why there are MDs.

Maybe I should have another genetic test done ?

NizD

Ruby Roo and Kira,

I'm wondering if you were both recommended chemo bc either one or both of the ER/PR were not strongly positive? According to the oncotype test, my ER is 9.2 and PR 6.8, both in the middle of the range of positive. Maybe that's why the chemo isnt listed as making a big difference?

Rubyroo

Hi NizD,

I'm not sure. Mine is listed at ER+ 6.5 (which I understand is right at the cut off) and PR+ at 6.6. My HER2 is negative at 8.8.

BarredOwl

All those receiving this test should be certain to obtain a complete copy of their Oncotype report (not partial information copied into a patient portal with risk of error), confirm your name on it and that it is for the correct lymph node status and all other material information.

Here is a link to a page with Node-negative (N0) and Node-positive (1-3N+) sample reports:

http://www.oncotypeiq.com/en-US/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results

The content of the node-negative (N0) and node-positve (1-3 N+) Oncotype reports ARE NOT THE SAME, and provide DIFFERENT TYPES OF PROGNOSTIC RISK INFORMATION. This is because these different reports are based on different clinical trials, performed in different types of patients (e.g., node-negative (N0) patients versus node-positive patients (N1-3)) and the graphs feature prognostic risk information based on different clinical endpoints with different length of follow-up:

===> Both graphs in the node-negative (N0) report provide "10-year risk of distant recurrence after 5-yrs tamoxifen." This is 10-yr risk of being diagnosed with a distant recurrence (incurable metastatic disease) with the specified treatments (either Tam Alone or Tam plus Chemo).

===> The single graph in the node-positive (1-3N+) report provides a "5-Year Risk of Recurrence or Mortality after 5 years of tamoxifen" (either Tam Alone or Tam plus Chemo). This is a 5-yr risk of recurrence or mortality, and appears to include both local and distant breast-cancer recurrences, new primary breast cancer, or death due to any cause, whichever came first. (See also, "Clinical Experience" information printed above the single graph in the node-positive report, "[t]he endpoint for this study from which the data was drawn was "disease-free survival (time to local or distant recurrence, new primary breast cancer, or death from any cause) and 5-year risks are presented.")

NizD, if your Oncotype report contains a single graph entitled, "Prognosis and Chemotherapy Benefit: 5-Year Risk of Recurrence or Mortality after 5 years of Tam, Based on the Recurrence Score Result", then it is a NODE-POSITIVE report (see also the title of the report at top of page).

You mentioned "n0" in your post above, but the type of Oncotype report you describe (5-year risk info) suggests receipt of a 1-3N+ (node-positive) report. Please raise this question with your Medical Oncologist to ensure you receive an Oncotype report with risk information that is appropriate to your lymph node status.

BarredOwl

NizD

Barred Owl you are right! I noticed this on my report about 3 hrs ago, called my doctor, and they called Oncotype to rerun the test results because I am NODE NEGATIVE. I can not believe they made this error. I also called Oncotype to make sure they had it correct this time on their end....and they do. The rep on the phone said that this will not change my overall score (24) but will change the % of recurrence AND it will be in a 10 yr not a 5 yr time frame.. With a node negative report, its got to either stay the same or get better.

you sure do know your stuff!

THANK YOU