Oncotype DX testing

HI Beth- I am sorry about your experience. I can tell you many oncologist dont yet feel comfortable with the Onco type and if you are young or have node involvement they  may want to recommend anyway and in spite of a score. hence this could be the reason they didnt order it.  Chances are your Onco used another diagnostic tool to check if you would benefit from Chemo like adjudavant on line.  Good luck.

LittleMelons, did type surgery did  you have, and how are you  doing?

I had a bilateral mastectomy.  Multifocal in right breast, left breast clear but chose to do both, immediate reconstruction with TE and in a few months silicone gel implants.  I am very happy with the aesthetic portion of my surgery, and of course ridding myself of the cancer.  I have two Oncotype scores on two tumors, 18 and 28.  Haven't seen Oncologist yet.  I have been reading as much information as I can so when I see MO I know what he is talking about.  I am in the middle portion on the Oncotype scale.  I am anxious to know what my MO suggest. 

LittleMelons, thanks you for your input.  I wish you well on your recovery too.  From what I gathered you are finished with your treatments.  I know it's a shock when you find out you have BC.  I had to have a mastectomy because two very close tumors, I would of had a huge portion of my breast missing if it was a lumpectomy.  I am very okay with my decision to have the mastectomy.  I will be getting tamoxifen most likely.  It's going to be interesting what the Ononcologist recommends. Like alot of women I have read about, they want to do all that they can now. 

Hi Dave

I'm not sure of your wife's type of cancer, size of tumor, stage, grade, surgery, age, etc.

My Oncotype score came in at 16. My MO was 50/50 on the chemo because it meant a 10% chance of recurrence, which is 'great'.... But, we finally decided to go ahead with 4 rounds of TC because of my "young age" (43), the fact that the tumor was larger than 2 cm, and the fact that even with negatives nodes, there's a possibility that there are undetectable cancer cells out there... The Oncotype score is for 'distant recurrence' and it just one "tool" that the MO should consider when it comes to chemo. I have 3 young boys, and psychologically, for me, I needed to know I was doing everything I could to raise my 90% chance of no recurrence, ever for an estimated (from MO)

1-4% benefit. It is a personal decision, I have seen many women on these boards with higher scores than mine not do chemo.

I would ask the 2nd oncologist what criteria she used to decide to test you.  If they sound reasonable (ER positive, PR positive, Her2 negative and either node negative or 1 to 3 positive nodes) I would  choose to switch oncologists.  Your oncotype score may or may not reaffirm the need for chemo but if you feel it was a reasonable test that should have been run before chemo I would choose to find someone new. 

I would also want to know what the calculated chance of distal recurrence is based on the oncotype score and also what it now after chemo (based on the oncotype score).  These numbers will most likely be different than the numbers calculated based on only on tumor size etc.  The oncotype calculation is supposed to be more accurate -based on the proteins (actually mRNA) expressed in your particular tumor.  This information may help you make decisions going forward.

Beth, I haven't read all of the above posts, but your stats lead me to believe chemo probably was the right choice -- although I agree, skipping the Oncotype-DX was very assuming of your onc.  But with a positive node, PR- (sometimes thought to be a bit trickier to treat than PR+), and a lesion over 1 cm, it doesn't sound at all illogical to me that your onc RX'd chemo for you.  

So sorry you're having a rough time with it.  Have you read all the hints & tips pinned to the top of the Chemotherapy Forum?  Some of those are just so important, and things our oncs never bother to tell us, or maybe don't even know.    

By the way, I'm not too far from you, near Palm Desert.  Feel free to PM me if I can ever help beyond these discussion boards.  I had a lot of tx @ UCLA, and can highly recommend them (as if they needed my recommendation, LOL!) -- if you ever need a 2nd opinion.   (((Hugs)))  Deanna

PS ~ Just wondering... since the Oncotype-DX test was skipped... did you have an MRI prior to your surgery?   I just want to be sure this step wasn't also overlooked.

Beth- My MO didn't mention the oncotype. I had to ask for it(3 times) before he agreed to run it on me. He said it wouldn't change his mind. Very frustrating. I  have a friend who is a NP at MD Anderson & she also told me it was for "node negative" women. There is a stage 3 clinical trial in progress looking at the relationship between oncotype & the needed for chemo in node positive women. It is randomly assigning women to get either chemo or no chemo. Smaller studies are showing a relationship.

I had a long wait between surgery & MO visit. So I had a long time to look things up & for some of my fear to dissipate. Otherwise I would have probbly gone to chemo. About 50% of the medically qualified told me to do the chemo. It was difficult decision, even though I had a low oncotype.  We really will never know if our BC comes back, if it is because of our choices or just the nature of the beast.

I guess if your MO doesn't believe it's useful in node positive women, then s/he wouldn't bring it up. Mine didn't. I'm frustrated currently because my MO won't go along with ovarian suppression for me even though others are getting it & I feel I can benefit.............. I can't wait for 5 years of hormonals to be over. It looks like you're just behind me.

Not true Bevin and in fact many oncologists are using the Oncotype test to determine treatment. Oncologists have said for years they have overtreated women and the Oncotype tests provides information about your particular cancer. They dissect and redissect your tissue sample and arrive at a number that predicts recurrence, accurate size of your cancer and how aggressive it is. Oncologists are however on the fence when a score comes back in the intermediate range. If you are on the low end they make a judgement call; high end typically means chemo or rads or both. My oncologist was on the fence with mine but because even though a micromet showed up in the SN it was so small she was not ready to recommend chemo so she ordered the Oncotype test. My score came back 11 with a less aggressive cancer and smaller than first thought. Had she not ordered the test more than likely I would have had chemo. I had 33 rads treatments so the test is extremely beneficial to oncologists and patients. I do think however the oncologist in beth's case probably should have ordered the test b4 subjecting her to chemo. We all have to stay on top of our particular situations by researching, reading and posting on websites like this. It has been a godsend to me. I was dx in Jan 2010. This website was my lifeline throughout my surgeries and treatments. Nowhere else do you have the kind of support and help from women going through the same thing you are. Best of luck. diane

smva, have you considered getting a second opinion? I don't think the decision to do chemo in your case is cut and dry. (my understanding is that an intermediate score means "we don't know" whether chemo will help). Do you know the grade? My understanding is that grade 1 tumors (the slow growing kind and the most like normal cells) don't "benefit" as much from chemo as ones that are higher grade.

bethhoul, Good luck with your second appt. on Monday. I don't have any info to add but yes, I can imagine you feel like you're on an emotional roller coaster. This decision process is so hard. Good luck. I'm sure you'll make the right decision for you. (and hopefully you can do something fun today; a bit of "distraction therapy" in the midst of all this). 

doxie - thank you for the info .. am getting a copy of my Oncoype report tomorrow and also talking to my surgeon.  I will look at the sample report you mentioned.  I know what you mean about 10 years looking different.  My Mom is still alive (96) and in fairly good health.  She had bc at 80 years old, lumpectomy and radiation then tamoxifen.