ONCOTYPE score of 36

dcarpenter

Anyone have this score,  This is the one thing that I worry the most about- (a reoccurance based on this score)

momand2kids

I didn't have that- I had a 27 and decided on chemo---- I don't regret that decision---- I drove down my risk of recurrence to about 8%--- your doc should be able to explain it so that you can see what the reduction in risk could be.... there is also an oncotype roll call on the boards-- I am sure you can find people there who had the same number.

good luck with your decision

birenegn

My score was 35 and I had started a topic Oncotype 35 - 66 years old. I had a lot of responses -- check it out.

I am now going for a CT of the abdomen and pelvis and also a heart test (MUGR?). The doctor wants me to start chemo right away so I see him Thursday and the chemo nurse.

navygirl

d ~ I know how you feel. It sucks the wind right out of you. I was expecting a low score because my BRACA was negative, my tumor was only 1.9 and I had no nodes. I had been told not to expect chemo, maybe Tamoxifen -but even that was a maybe. Then my score came back at 49 and I almost fell out right there in the doctors office. 

If you look at the stories though...BC is a wiley beast that doesn't follow a standard protocol. People who shouldn't have it come back do, and people who have all indications that they are likely too somehow don't. 

Try to find your peace in the treatments and and therapies, and let the future take care of itself. Worry will steal your joy.

Best wishes.. 

Sukiann

I hear ya! I have a score of 32 and it really shocked me. I addressed this with my oncologist this past wednesday. He told me with the arimidex and the zometa we are doing everything we can to help stop the beast from recurring. Somehow I just have to get over it and move on with my life. It's hard to do when you are put into a high risk category. But like navygirl said, it doesn't always follow a standard protocol. I've got to remember that when I freaking out about every ache and pain I have (and I have a lot being on arimidex!)

lemont

Yeah, it was a shock when my score came back as 40. I was only stage 1 and my BRCA tests were negative. No BC in my family either. I had already had bilat mast when the score came back (my onc "lost" it for two months). I finished chemo eleven months ago, I've taken Arimidex for ten months and I get Zometa every six months. I'm far enough out to stop worrying about recurrence all the time, still worry most of the time. It does help to find out your new recurrence % based on your treatment. That should be a more acceptable number.  

dcarpenter

I see where some of you guys are getting Zometa every 6 months--has this been shown helpful to reduce your risk of a recurrance, and what kind of side-effects does it have, is it an infusion?  thanks,

LizinKS

I was diagnosed with Stage 1B IDC,neg. lymph nodes and clean 2 cm margins in late May 2008. Ten days later,my husband and I talked to my onc,who suggested I have my tumor analyzed by the Oncotype DX test. About two weeks later,much to my surprise,my score came back 30,right on the edge of high. I have a 20% (15%-25% percent range)chance of cancer coming back. However,I do wish Genomic Health and others who have done trials on Oncotype DX validity would test to see what factors were particular to those who had recurrence. (Could be there aren't any!) Because of my age (then 61),fearing permanent damage to my general health from the chemo, and concerned about my aging body's ability to recover from chemo,I chose not to take it. However,researchers continue to validate the Oncotype DX test as the most reliable predictor of recurrence. I still worry about recurrence,like anyone who has been diagnosed with cancer. If I had received the high score you did or if I had been even 10 years younger when diagnosed,I would have considered chemo. It will be two rounds of chemo-eight treatments in all,not the higher number that larger,node-positive cancers might require. Seek out the opinion of several physicians;do research on the long-term health risks and side effects of chemo;consider your age-being younger gives the cancer more time to recur-and the state of your general health. Talk with your family. Taking Tamoxifen or Arimidex without chemo,you're still treating your cancer for the five years in which it is most likely to recur. It's really personal how you decide-and it's a horrible decision to make. I have read and heard from doctors that a lot is done to lessen the side effects, and many women on this discussion board say it's doable. All of us on this board have you in your thoughts and prayers.  Take it one day at a time,and the thoughts of recurrence will lessen with the coming months and years. My mammograms are still all clear,almost 1 1/2 years later. I take my armidex religiously. I'm a bit more creaky,but I'm glad for our modern times with targeted treatments and without routine chemo and mastectomies for everyone. Still,it's not easy. Be sure to let your friends and family know how they can help you.

As Shirlann says,Gentle hugs! You're in my prayers. Liz in KS

Sukiann

dcarpenter, I'm on zometa, 6 months apart.  My onc put me on this for two reasons.  First, for my bones because I am 45 years old and I get lupron shots and take arimidex.  Osteoporosis is a very big possibility. Second, he said I should take it to keep the cancer out of my bones.  I have heard that some oncs don't prescribe this treatment so I am thankful that mine did.  I did get flu like symptoms the day after the infusion (yes, it is an infusion - 15 minutes but I've heard that if they slow down the infusion you get less side effects).  I've only had one treatment so I'm hoping the next one isn't so bad. 

Lizinks - yes, taking tamox or an AI does help keep the cancer away and I'm grateful for this fact, however, I just am so fearful because of the onctypedx results.  I would have like to start with a 10% chance of recurrance than a 22% chance!  Nothing can be done about this fact though.  And yes, the oncotypedx test is supposed to be very accurate on scores that are at the low end and scores on the high end - not so much on the middle scores. Such is life!

mawhinney

I had an onco dx score of 30 which surprised me as everything else put me in the low recurrence group. After much debate I decided against chemo as it was only going to improve my odds by 3%. The side effects outwieghed the benefits in my situation. Onc said he was fine with my decision.

dcarpenter

thanks Liz, very encouraging,