Need to make Oncotype DX Decision

OK, Tamara, you asked for our own personal thoughts.

I am looking at your signature line, and it says you had a "grade 2" tumor and one positive lymph node.  If I'd had a positive lymph node, I would be expecting my onco to recommend chemo.  If he/she didn't recommend chemo, I would be asking for the rationale.  Even though your tumor was small (< 1 cm), it had already spread to your lymph node(s), and that means it could have gone beyond the nodes.  That would be my main argument for skipping the Oncotype test and going directly to chemo.

On the other hand--again, if I had your tumor--I would always wonder what the recurrence risk would have been if I had skipped chemo.  The tumor was so small, and it was not especially undifferentiated or aggressive, histologically.   With today's technology, Oncotype testing is one of the few ways of estimating the likelihood that a tumor will spread based on the genetic signature of the tumor.  The "Oncotype Recurrence Score" is a calculation of the likelihood of "distant recurrence" in the next 10 years--i.e., metastasis.  I would want to know that number, which also would provide me with an estimate of the benefit of chemo.

Then again, you have that pesky positive lymph node.  Oncotype testing for women with positive nodes is still pretty new.  There isn't much clinical data out there to provide the evidence of recurrence risk with or without chemo, when one or more nodes are positive.  Most women in that situationg get chemo anyway.

My situation was quite a bit different from yours.  My tumor was larger (1.8 cm), but my sentinel nodes were negative.  My first oncologist really was on the fence about chemo.  He did not want to have to decide, so he was pushing me toward participating in the TAILORx clinical trial.  He even went so far as to say I would sleep better at night if we let "the computer" decide whether I would get chemo (i.e., I would be randomly assigned).   That way, I would not be second-guessing my decision either way.

As for waiting another week or two to get the Oncotype results, the "magic" number is apparently 12 weeks between surgery and the start of chemo.  Whether you wait 3, 6, 9, or 12 weeks will not have a signifcant effect on survival.  If you wait longer than 12 weeks, though, there is evidence that the outcome will be worse (likelihood of survival is lower).  Grim statistics, but this whole thing is based on numbers, whether we like it or not.

I don't know what percent benefit would make chemo worthwhile.  That's way too personal for me to judge for you.  For me, personally, an absolute benefit that was less than 3 or 4% would have been questionable.  That is, if the risk of a distant recurrence was, say, 10% without chemo, and chemo would have decreased that risk by 1/3 (which is typical for an ER+ HER2- tumor), that would bring the risk of recurrence down to around 7%.  I just don't think that small a benefit is worth the long-term effects of some chemo regimens.  The short-term effects of chemo (the reversible SE's) aren't the problem--it's the long-term problems that worry me.

OTOH, my Oncotype score ended up being 26, which meant the risk of distant recurrence in 10 years was 17%.  Chemo should reduce that risk by 1/3, bringing the likelihood of distant recurrence down to about 12%.  I decided that, with all the fuzziness of the numbers (confidence intervals etc.), that was enough benefit to justify chemo in my case.  The two oncos I talked with both recommended chemo, given those figures.

This is a difficult situation.  A lot of times we need to make decisions when we don't have all the information we would like to have.  We just have to do it.

otter 

Check with geomic, the company who does the oncotype...they called me and after inquiring of our family income and number of dependents, they imformed me that I qualified for financial assistance and the test wouldn't cost me at all.

I also had grade 2, >1cm, though stage 1 and no lymph node involvement, my score came back "7", my onc recommended no chemo....the test helped a lot!

good luck,

Amber

I was told oncotype testing was not available for node positive patients, but on these board there have been a few folks who were node positive who did have it. The early research with 1-3 positive nodes seems to demostrate a similar predictive accuracy to node-negative.

If I could have had one done, I would have paid $800 or more for it, just to have that further information about possibility of reccurrance, even though there wasn't an onco around who wouldn't have recommended chemo at age 48 with a positive node.

I had the test done recently, 3 years after being treated.  I didn't do it because it would help me decide about treatment, chemo was a given for me.  I did it because I wanted to know more about my tumor's biology, I have a bc that is a bit different.  Here is what I learned.  

1.  I scored 23, intermediate range of risk.

2.  I received more accurate ER and PR levels.  I was progesterone negative by IHC but Oncotype DX scored it a little bit in the positive range.  I was "strongly" ER positive by IHC and less positive by Oncotype DX.  

This told me two things.   Tumors with lower estrogen levels are more likely to benefit from chemo.  Secondly I may have less probability of benefiting from an AI.

It was worth it for me to know this.  It wouldn't have changed my treatment decisions 3 years ago, and really changes nothing now.  I just have more information. 

I agree with Otter, skip the oncotype dx test and take the chemo...you have lymphnode involvement and that's a spread worthy of chemo...for sure.

Warmest hugs, Lisa