Oncotype poll: Recurrence or new primary?

gentianviolet

Perhaps this has been asked and answered however when I searched for oncotype and recurrence nothing was found.  I was wondering if any of you who had a recurrence or a new primary had an oncotype score for your first breast cancer and what that number was.

MameMe

Hi GV, That is an interesting question. I can't be very helpful, since I did not have oncotype done at first dx. In 2003 I had a low grade, early stage tumor, and after lumpectomy and radiation, fully expected to be done with cancer altogether. Ten years later, a second tumor, other breast. Similar but not exact same features. Same treatment protocal. In 2003 I turned down Tamoxifen, feeling certain that the cancer I had was best put behind me, not tended constantly by a medication that was unlikely to be much help. My very kind, intelligent oncologist at this current episode said that she thought there was some condition in my body that allowed for the tumor growth, and it would be far better to keep it from happening again than to deal with mets. I agreed to try Arimidex, which increased depression badly, and now tamoxifen.

My oncotype this year was a 16, low.

Hope you can get some response to this question, as it may throw some light on what really constitutes low risk.

Take care.

dogsandjogs

My first cancer was in 1982. Didn't have oncotype test - probably wasn't used yet.

Second time (new primary) in 2011.  No mention of oncotype at all by any of the doctors

FLtricia

My oncotype score was 23 (grey area) in 2006. i had mastectomy, CMF chemo and 5 years on Evista.

 Was diagnosed in May with new primary, other breast. 

No mention of oncotype this time.

gentianviolet

bump for any more information

TwoHobbies

I'm not sure I understand your question but oncotype DX provides a risk of distant recurrence while taking hormone therapy. When I locally recurred, I looked to see if oncotype DX predicted local recurrence and I only found one reference that said it should be similar.

My first tumor had an oncotype of 16, 10 percent chance of distant recurrence. Well I haven't had distant but did have a local recurrence. I took my tamoxifen every day so I'm convinced it just didn't work for me.

gentianviolet

TwoHobbies - Thanks for sharing your information. I guess my question is a bit confusing however I was interested in both, local and distant. My onc indicated that it predicted either as long as I took an aromatase inhibitor or tamoxifen for 5 years. My oncotype was an 11, and at that time it was in the middle of the low risk group. I did not do chemo and am interested in whether 11 really could be low risk or have the the numbers for low risk been lowered. Sending good thoughts.

SweetHope

Gentianviolet, thanks for bumping this. I am very interested to see some responses as I will receive my oncotype number on Monday.

Curlylocks

Oncotype testing was not done on me because my first breast cancer tumour in 2005 was 4cm and I had 3 positive lymph nodes (also 41when diagnosed). It was also er/pr+
I was diagnosed with a new primary bc almost a year ago (after being cancer free for 8 years). This time I am triple negative.

So you can have a new primary and it is considered a brand new cancer ( although in same breast) and have it change receptors.

I think oncotype testing helps make the chemo decision if you don't have triple negative bc and negative nodes.

I personally believe if you are going to have a reoccurance or new primary...sometimes it is just flipping bad luck that it happens!

Michele

SweetHope

Geez, Michele, that stinks! Hope all is good now. May 2015 be your best ever.

TwoHobbies

Gentian, I do remember someone saying there was a study going on and I think it was to look at the intermediate risk group( for oncotype DX), however that was four years ago so I'm not really up on any news. I looked on the oncotype DX website and it seems their ranges are still the same, low risk up to 18.

Flipping bad luck is right, Curly locks. This new article says 2/3 of cancer is just plain dumb luck and not what you ate or did or your genes. http://www.medicalnewstoday.com/articles/287542.php

Warrior_Woman

I have no expertise on this but it is my understanding that the TaylorX study results that determine the benefit or lack of benefit of chemo for persons in the mid-range will be available this year.

http://www.genomichealth.com/en-US/Publications/ClinicalTrials.aspx#.VKgAeDE7um4

bevin

HI yes,. As I understand, For the study purpose, they lowered the medium risk to include Onco type score of 11. That information is written under the study specs.

I am 4 years post diagnosis, had a score of 11, chose rads  and Tamox only. I  was given option of Chemo due to my young age of onset. Based on Onco type score I elected not to have Chemo.  I am hopeful that was the right decision but do sometimes worry. I can share had I had any lymph node involvement, I would have opted for chemo;  My lymph nodes were clear and I showed no LVI.

 

gentianviolet

Sweethope - Fingers crossed for a low oncotype score on Monday; the waiting is miserable. Come back and let us know how it turns out.

Curlyloccks - I am sorry to read about your recurrence, we all dread that kind of information. How did chemo go for you? Hoping it was tolerable, and yes, it is just bad luck, blows my mind how random it is.

TwoHobbies - I have heard that TaylorX has different numbers and I have been waiting, waiting, waiting for those results. I can remember that within a year of my dx I had read so much and learned so little........had no idea before bc how incredibly complex this damn disease is.

WarriorWoman - Thanks for the link, I bookmarked it to add to my list of articles to read. With a oncotype score of 11 I was considered in the middle of the low risk group however now, I guess, not so much. I was diagnosed at age 69 and my onc felt chemo was not the best choice. Too late to second guess that decision.

Bevin - You and I had the same oncotype score however I did have a micromet in 1 lymph node and I did have LVI. My mitotic score was 1 so I am hoping that if I recur it is several years away. I am now 74 and would like to see 80 yet I do fully realize that I am very lucky that I made it to 69 before the diagnosis. Not everyone has the luxury I have had to see my kids grow up and see my grandchildren as teenagers.

Wishing all of us a healthy 2015 and sending good thoughts. Thanks for sharing your information.

voraciousreader

Barbara...your Oncotype DX score is low. Anything below 18 is low and means the risks of chemo outweigh the benefit. TailorX was designed to get more patients out of the dreaded "intermediate" range from 18-30. When the study was designed it wanted to pull in enough patients so that they could see at what point there would be statistical significance....who knows? Maybe when TailorX is unveiled later this year it might show that chemo's benefit doesn't begin until a patient's Oncotype score approaches 25 or even 29...

Curlylocks

Barbara chemo this time around was difficult. I had 4 rounds of Taxotere and Cytoxan. I was unable to eat for 5 days each round.

I got through it and hope to never visit it again.

I am 8 months post chemo, still tired but I have had other issues with my right kidney not cancer related thankfully.

Thanks for asking. Hope you are doing well!

Michele

SweetHope

Okay, it's 28 hours til I get my oncotype score. Now I think of nothing else but. Did anyone do chemo that had a low score?

When I was first dx'd, I promised myself to be aggressive in treatment. I had recently lost my DBIL to Stage IV prostate cancer that was very cruel. I often cry over how he suffered.

While I want to throw everything at this, I don't want to end up with SE's that ruin the years I have left. I don't care about losing my hair or sleeping away the Spring. I just want to feel that I did all I could to outwit this #%{£*~¥#[! cancer.

gentianviolet

Hi VR - I have read many of your posts and marvel at the amount of knowledge you seem to have at your fingertips. Initially (before I received my oncotype score) I felt I would certainly choose chemo but my onc stressed long term side effects, even though I felt fine and was physically active. Eventually I decided that no matter how much I had read, his knowledge far exceeded anything I could hope to obtain. If only we knew we were making the right choice. Regardless of the current oncotype numbers, I will feel a bit better if TaylorX comes up with similar scores. Do you have any idea when the results are to be released? I can not seem to find a timeline on this.

Michele - I am assuming that you had chemo with the first dx too. And this time was worse? As if it's not bad enough that we are scared out of our wits but to add chemo and all of the various side effects plus the "forever" unknown for the rest of our lives seems unbelievably cruel. I admire your fortitude to deal with this again.

SweetHope - Still thinking of you with crossed fingers. My onc told me that even though I was in good health he felt my age as well as the oncotype score was not indicative of chemo. We will see how that works out. The worst part for me is the game cancer plays with me psychologically. I am a jeweler and although I now only do 6 juried shows a year, I continue to play with my metals as it keeps the dark thoughts at the back of my mind. Someone once told me how lucky I was to have such imagination..........my answer, "Yes for making jewelry, for cancer, not so much". Will be thinking of you tomorrow.

voraciousreader

Barbara...I haven't seen anything mentioned regarding when TailorX's results will be released other than reading that it was scheduled for 2015. That said, there are two major symposiums in the States that usually present important embargoed studies. ASCO, usually held in March and SABCS in December. So keep those dates in mind.....

gentianviolet

Thanks VR, I will keep those months in mind. Sending good thoughts

Curlylocks

Barbara, I had 8 rounds of chemo with first diagnosis..4a/c and 4 taxol.

My new primary was a 1cm Triple Negative tumour( so more aggressive cancer, than estrogen positive I had with first diagnosis).

I hoped I would never have to deal with this disease again, especially after 8 years of being cancer free. I have come to realize that you can't always control what life throws at you. You just deal with it when it happens, pick yourself up and move on again.

Michele

SweetHope

Got my oncotype dx score today. It's 18 (12% chance of recurrence). Since it is such an iffy number and talking to my onc didn't sway me one way or another, I decided to join a clinical trial that randomizes who get chemo. I was a perfect candidate for the study....good health, hormone receptive positive, HER-2 negative, with 1-3 positive lymph nodes and a recurrence score of 25 or less. If the computer picks me for chemo it will still be the standard treatments (no experimental drugs). I will remain in the study for 15 years or longer. Since I have no desire to move away, and I live so close to the clinic, it is no effort at all to participate. Maybe something good will come out of this crappy journey!

I sign informed consent forms next Tuesday, then meet with my onc with, hopefully, a plan. I can't wait for treatment whether chemo or just hormone therapy. Of course, I will still have radiation. Wish me luck.

funthing42

Hi 2009 0.6cm Lumpectomy and Rads /Tamoxifen then arimadex and Lupron. ONCOTYPE 23.

RECURRENCE X2 Since.

farmerlucy

Holy crap funthing42! I'm so sorry. That is so unfair.

gentianviolet

Michele - My heart is with you, it is the dark cloud that all of us carry. I am doing well, thank you for asking........that is, I have a yearly MRI in May so of course I am optimistically hopeful that it will be clear.

Sweethope - Please know that my thoughts are with you and I so admire that you will be contributing information that those who follow us will benefit from. I find that courageous. I hope any side effects you might have are minimal and remaining in the study for 15 years is in itself daunting. Good luck and let us know which arm you are in.

funthing - I have read some of your past posts on threads trying to get a bit of history as there was nothing in your biography. It certainly sounds as if you have had one hell of a time just trying to keep your head above water. I am so sorry, and understandably it has to be frustrating beyond belief to have the rhythms of your life change with each new diagnosis. As farmerlucy said......so unfair! You are in my thoughts.

SweetHope

Gentianviolet, Thank you for the kinds words. I was a perfect fit, live close to my cancer center and was so perplexed as to which regiment to follow that I was happy to let a computer randomly choose my treatment. I was hoping it would chose chemo and it did. I will have the standard of care. So it was a win-win for me.

I am starting chemo on Tuesday and have been thinking of our true heroes who were the first to try the experimental drugs we are so dependent on now to live. Can you imagine being the first to lose his/her hair, the excruciating nausea, the unknown if they would live through the strange cocktail of drugs that no one else had ever taken? And those who volunteered knowing that they may be getting a placebo as they were in the fight of their lives. I am getting teary-eyed thinking of them. We have a lot of people to be indebted to. We have a lot of paying-it-forward to do.

funthing42

Thanks we are all a tough bunch here. It's like jumping from a plane and hoping your parachute opens.

I think I have the dx down now

The only thing is the local recurrence is in the skin and scar tissue where the breast once was. Not sure what stage. I only had biopsy on two of the 7 bumps lumps /small and pink.

KBeee

My oncotype was 16, and here I am with a local recurrence just after a year later. So far, it appears local. of course, with BMX, chemo and tamoxifen, my odds should have been low at a local recurrence. i guess that's why they are just statistics. We are not statistics, we are people.

My tumor pathology is different this time, so though it is in the same location, they do not know if it is a new primary or a local recurrence.

Anonymous

My Oncotype # was 36 in 11/10. My gyo felt a lump during my last exam, Thursday. I have to wait 2 weeks for a Mammorgam. Tomorrow I'm going to ask for an ultrasound instead, otherwise I think I will go crazy waiting!

KBeee

pasofino, glad you are asking for an ultrasound. There is NO WAY you should be waiting 2 weeks for a mammogram. When I found my initial lump back in 2013, I had one within 2 days. That's crazy! Praying for all clear/benign results.

gentianviolet

Funthing - Hoping that your biopsy showed no signs of a recurrence. For me the thought of dealing with it all over again absolutely paralyzes me.

KBeee - By now you know whether it was a new primary or a recurrence. I have been so busy that I have forgotten to go to this thread, so I am hoping that you have the best possible news. My oncotype was an 11 and even though that is considered a low score, who knows? I am eager to read the results of the TaylorX trial, apparently coming out sometime in 2015.

Pasofino - did you have your ultrasound? I agree with KBeee that waiting two weeks is outrageous. When I requested an ultrasound, I received it within two days and they gave me the results directly after.

Wishing all of you a happy and healthy summer, now that it finally looks like the days are a bit warmer. Sending good thoughts.