Topic: Question about the "intermediate range" on OncotypeDX

May 26, 2012 01:00 PM yorkiemom wrote:

Maybe to check whether the current guidelines are accurate? I hope they are, cause my Oncotype was 14 and I did not have chemo. However, I am not young and have a low Grade cancer. I think it was the appropriate decision.

May 26, 2012 04:35 PM, edited May 26, 2012 04:39 PM by otter

wildrumara is correct.  The "official" categories are still 0-17 for "low risk," 18-30 for "intermediate risk," and 31+ for "high risk."  Remember, though:

1) Those categories are defined arbitrarily.  What one person considers "low risk" might be different from what another person thinks is "low risk" (etc.).  A score of "15" corresponds to a recurrence risk of 10%, which sounds pretty meager.  But, that's the risk of developing metastatic breast cancer ("distant recurrence") in the next 10 years.  Some people might not think a one-in-ten chance of mets is such a trivial thing.  OTOH, other women on these boards have not been convinced that a score in the "high risk" range was necessarily that high.

2) It seems like the difference between the categories is more significant than it really is.  Remember that the scale for the "Recurrence Score" is continuous.  For instance, a score of "29" is classified as "intermediate risk," while a score of "31" is in the "high risk" group (according to the official criteria).  But, that score of "29" corresponds to 19% chance of developing mets, while the "31" represents a 21% chance of distant recurrence.  Really, there's not much difference between 19% and 21%, even though the scores are in different risk groups.

Finally, as per the question about the TAILORx categories vs. the official categories:  I've been looking for a good answer for that question, ever since I found out my score was a whopping "26". Here's what I've located (note that it's a pdf file)... ecog.dfci.harvard.edu/general/...

The relevant section:  "Slide 13 -- Definition of Risk Groups for TAILORx"

++++++++Quote begins++++++++

1) It is important to point out that the definitions of low, intermediate or mid-range, and high risk have been modified for the TAILORx trial, and are different than the original definitions reported for the assay.

2) The definitions were modified in order to reduce the risk of under-treatment in the trial. In other words, an effort was made to minimize the risk that patients who are truly benefiting from chemotherapy would not receive it.

3) It is currently unclear at which Recurrence Score benefit from chemotherapy occurs. It is clear that chemotherapy is not likely to be beneficial if the Recurrence Score is less than 11. It is also clear that chemotherapy is very beneficial if the Recurrence Score is more than 25. The trial will determine whether there is any chemotherapy benefit if the Recurrence Score is 11-25, and if so, at what level this benefit can be detected.

4) For the low Recurrence Score group, the upper bound was reduced from 18 to 11. … This was done because at Recurrence Score of 10 or lower, there is a less than 5-10 percent chance of relapsing with hormonal therapy alone. This 5-10 percent threshold is typically used for recommending adjuvant chemotherapy. Therefore, women with a Recurrence Score of less than 11 will receive hormonal therapy alone.

5) For the high Recurrence Score group, the upper bound was reduced from 30 to 25. … A RS of 30 is associated with a 20 percent risk of recurrence. This group will receive chemotherapy in addition to hormonal therapy. Lowering the threshold to 25 will reduce the risk of under-treating this group.

6) Finally, the definition of the intermediate or mid-range group was adjusted from 18-30 down to a range of 11-25. This is called the Primary Study Group because it is in this group we are evaluating whether chemotherapy is beneficial. Changing this definition reduces the risk of under-treatment at the upper range of this mid-range group.

++++++++Quote ends+++++++++

The bottom line is that the categories were changed (cutoffs were lowered) for the TAILORx trial for ethical reasons.  The researchers dared not risk denying a woman the treatment she ordinarily have received, given the aggressiveness of her tumor.

BTW, my med onco recommended chemo for me in part on the basis of my score of 26. He pointed out that if I had enrolled in the TAILORx trial (which I declined to do), I would automatically be getting chemo with that score.

otter

May 26, 2012 07:46 PM momof3boys wrote:

It is very interesting. My Oncotype score was 16. My MO's group uses "11" as the cutoff score to recommend chemo for "young" (im 43) otherwise healthy women. I did TC x 4, finished early March....

May 27, 2012 03:35 AM NancyHB wrote:

I asked my MO and BS these same questions while waiting for the outcome of my Oncotype test.  They were both of the opinion that chemo would be recommended when a score falls into the intermediate range but that the choice was ultimately up to the patient.  My MO didn't feel comfortable "splitting the difference" because he felt that 25 (about mid-range) wasn't much different than 24...or 23...or 22...  I think they preferred to err on the side of caution, share all the associated information, and support their patients in the choices that are best for them.  As awful as it sounds, I was so grateful when my Onco score came back in a definitive range so that I didn't have to make that choice.  But I suspect that I would have opted for chemo if my score had been in the mid-range, too, just because I personally wanted to throw everything and the kitchen sink at this disease.  Of course, I had prayed for a score of 0 (would have been happy with 1), but was still shockingly surprised with 42.

May 27, 2012 10:00 AM jenn333 wrote:

My score was 14. I wanted to do everything I could do to be here for my daughter too but I didn't do chemo because my oncologist believed it wouldn't do anything for me with a very indolent, grade 1 cancer and the side effects were not justified. I agreed. I did do radiation even though I think that was probably overkill with a mastectomy though.

At the end of the day, if my cancer comes back I will not regret not doing chemo - I will be confident it would have come back regardless. If I had been grade 3 or had node involvement, different story. I would have had chemo regardless of my Oncotype score.

Jenn

Jul 17, 2012 10:10 AM juneaubugg wrote:

I just got my #from BS and see MO tomorrow. Number is 22. Really uptight again.

Jul 17, 2012 07:29 PM Lee7 wrote:

To add this discussion, there is also a trial now called RxPonder that is like the TailorX trial.  The RxPonder is looking at the Oncotype low and intermediate area for those that have 1-3 positive nodes to see where chemo is a benefit and where it is not.  

Jul 18, 2012 01:18 AM cookiegal wrote:

@jeauneaubug

I'm a 22 also.

On the node positive chart, it looks like the "chemo benefit" kicks in at 20.5. Yeah it would be good to be there.

My onc was fine with no chemo for node positive up to 20...but I declined it.

Jul 23, 2012 11:51 PM juneaubugg wrote:

Cookiegal: love the name... I think im going to opt out too. My MO hasn't pushed either way. In fact she's driving me a bit nuts! I have clear nodes and margins and I just don't think I can handle this too. I've had enough. My exchange is still a little over 3 months out.

I see my BS for the first time since surgery Thursday.

Jul 26, 2012 12:15 AM juneaubugg wrote:

How did you arrange for the cold caps. Did you order a kit and they bring the ice too!? I'm so confused. I'm supposed to start Monday in north jersey.

Jul 26, 2012 10:53 AM edwards750 wrote:

My ONC decided the Oncotype test would determine my treatment plan. I had Stage 2, Grade 1 BC. One positive micromet in the SN. Had they not split the tissue they would not have known about the micromet but they did and my BS immediately said it would get me chemo. Devastated of course but luckily its the ONC who makes the call. I had the ONC test done and my score came back 11. It is true a low score does not mean you dont get chemo but it is an overriding factor that you wont. I also had a non aggressive cancer and a small tumor. I think even though there are conflicting reports and decisions made by a BS and ONC the final say is made by your ONC. We were all inundated with information at the time of DX and when it was time for a treatment decision because the fact is it is our decision. I had 33 RADS treatments. They were a piece of cake compared to chemo. The techs were great and the procedure took less than 10 minutes. I had SEs like fatigue and burning but overall it was not bad. I am on Arimidex and am blessed that I dont have the debilitating SEs from the drug. Of course we all are going to be forever looking over our shoulders because once you are DX with the C word your life is never the same. How could it be? I have read a lot of stories from women who are over 10 year survivors and some of those women had Stage IV which is remarkable. I have also read accountings from ladies who had low ONC scores the cancer came back. Researchers are at a loss as to why that happens or even why some of us get BC to begin with. We would all love to chill and not fixate of what ails us but that is virtually impossible to do. I try to focus on other things and not dwell on an ache or pain but rest assured if it is a pain that does not go away and I didnt have prior to my DX I am going to consult with my ONC. I prefer to be the perpetual optimist. Had all of us not had our annual mammograms we might not be posting on this board. I was blindsided but relieved that BC is no longer the death sentence. With absolute certainty I would change doctors if you dont feel comfortable with your dr; he/she is your lifeline. Had my dr been too ambivalent I would have looked elsewhere. There are a number of drs to choose from. I found mine from advice from a friend who had BC. He is one of the two best in town but also a charm school dropout. He so needs to work on his bedside manner. Still at the end of the day it is our life and our decision. Just make it and dont look back.

Jan 18, 2013 06:00 PM Rockym wrote:

Jazzygirl, I can tell you from my own experience I would have done anything to NOT have had to do chemo.  Looking at your stats, it seems that you have had all the treatment that usually goes with IDC, DCIS and no nodes.  The big question would be perhaps your age and how do you feel in your gut.  Chemo is very powerful and for some it can cause permanent damage and leave you worse off.  I'm not saying don't do it, but I am saying it's important to look at the benefits versus the harm.

Jan 19, 2013 11:37 AM Rockym wrote:

Jazzygirl, have you had the BRCA test (since your sister had cancer too)?  Have you looked at cancermath.net?  You can plug in your stats and see how much of a percentage difference (regarding recurrence and death) one or another treatment makes.  Also, if you have some specific questions, Lilly (a 2x survivor and RN) at Johns Hopkins answers individual questions on their website at:

www.hopkinsbreastcenter.org/se...

I asked many questions before treatment and she was great.  She gave me better answers then my MO at the time.  I ended up sending my pathology slides to them for a second opinion.  That helped a lot with my decision.  By the way, I was a 22 Oncotype too.

Jan 19, 2013 05:33 PM Jazzygirl wrote:

Rockym- yes, I had the BRACA test and it was negative. We have no history of bc in our family, but when we both came up with it at the same time and also some other reasons, I had the test done.

Thanks for the Hopkins and cancermath.net links, going to look into that too!

Jan 20, 2013 07:35 PM Lee7 wrote:

curveball, yorkiemom, the way I read chris's comment was she's 65 and that is too young for an automatic AI...meaning, they wouldn't just skip chemo and put her directly on the AI because of her age.  I would think after chemo, then they would follow with the AI.   I am surprise though that her MO was recommending chemo with the low score, unless her MO still always recommends chemo when a node is positive no matter what.