Oncotype Dx Test Anyone?

MsPharoah, I think the challenge with chemo is creating a tool, if you will, that is as tailored to each person's disease, to achieve the best possible outcome.  For many of us our cancer will never recur - locally or distant - whether we do chemo or not.  There is no guarantee and no real way to predict who will recur - we can only guesstimate based on the science in front of us.  The Oncotype test has been a godsend, I'm sure for many of us as we try to weigh data gleaned over decades - good data, to be sure, but it's not us, it's not personal.  The Oncotype test IS personal - it tells me about MY cancer, not cancer in general.  In my case, the Oncotype test made all the difference in the world - it gave me something definitive to hold on to, to believe in, to trust.  It wasn't nebulous or generic - it was very specific, and felt very personal.

Before my test results, my onc suggested 6xTC, "but we'll be happy if you can complete 4."  This decision was based primarily on my tumor size (1.3 cm), and the location of the tumor (against the chest wall in the inner-upper quad).  Had my test come back lower than 20, I wasn't sure I was going to do chemo, frankly - the SEs and risk didn't seem to outweigh the benefit, given that I thought I had a pretty "easy" early-stage cancer.  So did my doctor.  Once the test came back, treatment changed significantly because my cancer required stronger chemo.  Without the test, I might have chosen no chemo, or chosen to try 4xTC (and given up on the final two because, well, my onc didn't seem to think it was *that* necessary).  In the end, however, even chemo is not a "cure" - without Tamoxifen my recurrence rate (with chemo) has been reduced to something like 25%.  

On the flip side of that is the possibility for those to have very low Oncotype scores - their cancer does not require chemo and in fact chemo could do more harm than good.  Sometimes, I wish I'd been given the option to do the "no chemo happy dance" and not be dealing with the long-term side effects that chemo has blessed me with.  There's a trade-off in every decision we make; I think the Oncotype test is giving more personalized options in this battle we fight, and I hope and pray that it continues to be refined so that fewer women who don't need chemo are having it, and those who really do need it are getting it.

Perhaps I have been misunderstood.  I consider the oncotype test to be additional data that we use to make decisions.  So thats a good thing.  But take a look at the relative benefits of chemo in the intermediate zone.  If tailorx shows less benefit at a higher score, is that a good thing?  I don't think so unless it also lowers the recurrence rate and there is no reason to believe that tailorx will do that.   Am I wrong?  If tailorx finds that my intermediate 24 is now in the low category.....will it also tell me my recurrence score is lower?  If not then telling me that chemo is of less value is not a happy story for me or for anyone with a score of 24 in the future. 

MsP

I'm sorry if I misunderstood you, MsPharaoh - I certainly didn't mean to imply anything with my response, either.  I am highly protective (??) of the Oncotype test because of how it turned out for me.  Scares the crap outta me, to be honest, so I kinda hate it, too.  :-)  But it gave me such good information that I otherwise didn't have.  And I've read/participated in conversations here with women who wanted - practically begged - for chemo because they wanted to "throw everything at it," when their diagnosis and Oncotype test did not warrant such drastic treatment.  It's very difficult emotionally to explain to another warrior that the Gold Standard of Treatment would actually be of harm, rather than benefit, in their particular case.  If your score comes back as 2 or 3, you might feel comfortable saying, "Okay, I can forgo this."  But what about when it's 11 or 14 - do you start to feel like it's the "high end" of low risk?  Or 17 or 18 - too close to intermediate to ignore?  That dreaded "grey area" seems to bleed into both the low- and high-risk areas very easily, depending on oncologists - and a patient's fears.  As someone living with cancer, every choice we make could determine our future, so why wouldn't we want to do everything we can to ensure our longevity?

My hope is that research continues so that that "grey area" disappears one day, and there is a definitive cut-off for when chemo is beneficial, and when it is more harmful than good.  Until then, I wish everyone (and you, too, Warrior Woman!) a definitive score one way or another.

We are all looking for the "This is exactly what you need to do/take to live to a ripe old age and make your children miserable" speech.  But in today's world, it will not come.  I did the no chemo happy dance.  Today - I second guess that decision a lot; I was an oncotype 18.  Even a second opinion on the no chemo provides me with no comfort.  Cancer is scary, I want to know I ( and every one on my medical team) gave it my all.  The best I can hope for, is that the world will be different for my children.  May they never have to worry about these things and may they not have my BRCA mutation.  We are paving the road for those that follow in our footsteps.  

Yes, Warrior Woman!  I've thought for many years that the medical world needed Tricorders, like in Star Trek.  When my Oncotype score came back an 8 I was actually disappointed that I didn't need chemo - I was ready to tackle this thing with everything I had.  But, everyone else around me was ecstatic I didn't need it.  

I am one of the strong proponents of the Oncotype test and yes I did the happy no chemo dance. My Onc was ambivalent about my treatment plan. I had Stage 2(micromet in SN). Had lumpectomy. When Path report came back my BS was surprised, I was stunned. He said it would get me chemo; my Onc disagreed and ordered the test. My score came back 11; and my tumor was determined to be mon-aggressive. My recurrence is 8%. I am forever grateful for this test and I don't consider 11 to be in the gray area for a low score at all and neither did my Oncologist. I have seen a lady on this forum with a 0 score but very few 2 or 3 scores. Diane 

I think the lowest recurrence is 4% , I know with a 3 mine is 4% and with a 1 it is also 4%. My onc said not doing hormonals based on the onco score alone is putting a lot of faith in one number.  It will be interesting to see if things change in the future. Perhaps at some point the Oncotype test or similar test will be used to determine not only the need for chemo but the need for hormonals.

I'm someone who has an Oncotype score of 0 which, according to the test results, puts my average rate of  distant recurrence at 3%, provided I complete 5 years of hormonal therapy.  Even though there's not a huge difference in that percentage if I were to opt out of taking my little white pill each day, I'm not willing to take that chance.    I also completed almost seven weeks of radiation.  I do NOT want this thing to return and any little bit I can throw at it, I will.  Every single percentage point counts to me, and if somehow I do have a recurrence down the road I don't want to think, "If only I'd .... "  While I'm very happy to not have to go through chemo, sometimes I wonder if I'm doing enough prevention-wise, but am really pretty much limited to the hormonals at this point.  Well, that and the life-style changes--have gotten below a 25 bmi and am exercising, no alcohol, eating well, taking some supplements, etc. and those things are important too . . . but still there's a kind of comfort in taking something tangible, like my daily Arimidex.  Luckily, I've had very few SEs with that, and radiation was pretty easy for me, too, so I feel blessed. 

Anyway, I'm so very happy the test was available and spared me the chemo.  (Now I just hope it's trustworthy!!  There's always that little doubt.)  Good luck to everyone waiting for their results.

And Happy New Year!  

Paloverde, hi!  Your 4th paragraph expressed my thoughts and concerns so much better than I did in previous posts.  Thank you for that.  "what does that tell us about the quality and efficacy of current chemo options?". Indeed!   For me, it was even more complicated.  My tumor was lobular and had a low mitotic rate.  All the research shows that chemo is less effective for lobular and slow growing cancer!  Huh?  So when I had my consultation with my onc and she recommended chemo, I told her that "if we are going to do chemo, let's make sure we don't just pi$$ off my cancer".  I don't know if chemo did anything; nor does anyone, but I did it.  

Once I made up my mind to do chemo, I was all in!  I did well.  I had some bad days, really tired, but I worked through the entire 18 weeks and maintained a pretty normal life..(which, btw, was much more healthful for me).  Every time I saw my onc and she asked how I was doing, I repeated the same phrase.."I'm doing well!". I remember the shocked look on her face the first time!  And when she sent me back for the next infusion, I always said..."let's kill some more cancer".  I will tell you that they have learned a lot about how to manage side effects...nausea, low blood counts, etc. And you should hold your onc's feet to the fire to make sure you have minimal side effects.  Yes, you will lose your hair, but that doesn't hurt, nor does it affect your health, really...what it does is possibly rob you of your privacy and send off "sick signals" that could mean you have to spend a lot of energy making other people feel ok.  But they have fabulous wigs...I have 3 and quite honestly, i wish I could wear them forever...just might.  

Best to you for minimal side effects and a healthful 2014 .  Let's kill some cancer, hon!

MsP

That's funny, my husband said something similar - that in future generations, people will look back on today's ("3rd generation") chemo, call it primitive & barbaric and compare it to leeches!  

Hi Graceber, 

Most oncologists will take age into consideration.  As a young woman, you have a lot of living to do and so there are many more years you need to be cancer free.  Also, the younger you are, it is presumed that you are more healthy and can take a harsher treatment.  These generalizations are not always true, but they are considerations.  Good luck, hon!

MsP