Oncotype DX anyone waiting for results?

my onco score was 15 in 2012 and my treatment team was elated that I didn't have to have chemo. I believe the new research even raises the score a little higher for no chemo. Over treatment can be a real assault on the body that leaves longterm side effects. Hard choices along this journey but you have so many now compared to even 5 years ago. Hang tough.

Nicole, it is all based on statistics to come up with a risk. My score of 34, gave me a 23% chance of recurrence in 10 years with tamoxifen. If chemo was added in the best situation that risk could be reduced to 12%. Now professionals assessed it was worth the effects of chemo. Well I didn't do the chemo but instead of tamoxifen I chose AI therapy which in my case (PR negative) my risk was less than 23% closer to 17%.

Taking these drugs potentially can harm your health that also needs to be considered. Once you get in the intermediate range the benefits of chemo are not as good as the high range.

Unfortunately, it is not a clear decision and there is no way of telling if the drugs are effective against recurrence. We can only rely on the statistics. Maybe someday we will know more but for now we don't.

NicoleRod, My sister's Onco score was 17 and her ER was 90%, PR was 14%. I am betting you will be below 20 with that high ER number. Best wishes!

NIcoleRod, I remember well the anxiety associated with waiting for the score. My doctor's office promised to call me the moment they received the results. I knew when they had the report because I called the lab in California and they told me they had faxed the info. Unfortunately, the doctor's office never did call me and they also did not return my calls. I was pretty well ticked off when I had to wait for my next appointment. Have you tried the online predictor tools? I think I tried most of them and found them to be very accurate. Hang in there!

It rots to get a high score, but... it means you will get the appropriate care to give you the best chance at a good long term prognosis. I've been through chemo (twice) and tolerated it quite well. If chemo is the route you decide, I highly, highly encourage you to get onto the chemo board for the month you're beginning and join that group. My chemo gals from 2013 and 2015 are truly like my sisters. I've gotten together with many of them, and we're still very close all these years later. It was truly one of the only "good" things to come from cancer. We lifted each other up, gave each other the strength to poswer through, and still keep each other sane when fears crop up. (((HUGS))) You CAN do this.

Hi NicoleRod,

We're rooting for you! Whatever it is, you will find your equilibrium and do what you need to do.

It's okay to cry. It is scary and real. Crying can be a healthy way for our minds and bodies to process rough news. It's probably better than numbness or denial.

For what it's worth, lots of bizarre things can cause body pain. I had a physical therapist tell me I was having pain because my hip muscles were unevenly developed and not strong enough. I was like, wth, hip muscles?!? He gave me some exercises and they helped. There's plenty of things it could be that are not metastasis.

Do what you need to do to get yourself through this excruciating waiting period.

Nicole, was that score on the dcis or idc portion? The DCIS scale is different than the invasive scale.

I didn't read your dx line carefully the idc is the recent dx. Yes 49 is high, it sounds scary but all it really means is you are at higher risk and if you choose to add chemo it should be effective at reducing your risk greatly.

It doesn't mean you will get a recurrence. Good luck to you, also 4mm is really small.

There were 2 areas? My pathology from my biopsy mentions multifocal but my mastectomy pathology confirmed the tumors were completely separate occurrences each 1cm. So you have one 2.1cm tumor with a 4mm satellite?

When I talked to my oncologist he was not worried at all that there were 2 tumors. Still very treatable.

If you are at a major medical center, maybe you could work with them on coming up with a more personalized plan for chemo (if you decide on it). Perhaps they can use the less toxic CMF as opposed to AC+T or TC. Or perhaps they could adjust the dosage. Those are all things to discuss. They also may be able to look at which specific enzymes you lack (if you get pharmacogenetics testing) and see which drugs use those pathways.....and avoid them. Just ideas. I know there are a lot of decisions to make. Make the best decision for YOU that you can, and do not hesitate to get a few opinions.

Nicole - I'm so sorry about the high oncotype score and the need for scans. It's overwhelming, I know. My score was 38 and I was scared out of my mind about doing chemo. I mean, I really, REALLY didn't want to do it. But the size of the tumor is less important than the cell biology and with an aggressive cancer, it just didn't make sense to me not to do it. And it was much more manageable than I anticipated. I'll second KBeee's suggestion to join the chemo board for your month - it made a huge difference to have that support of women going through it at the same time. We're all still in touch.

Hi Nicole,

I'm so sorry to hear this. I'm sure you're having all kinds of feelings right now. But like someone said to you earlier today, wait for the results of the biopsy, and keep the faith in the meantime...

Sending hugs and strength....

Margot