NEW Oncotype Dx Roll Call Thread
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Luna,
I hope you don't mind me asking but there are very few people around with onco scores like 0. I have an onco of 1 and two MO's have told me that I have the lowest score they have ever seen. Both suggested tami ( I am a tami- failure) which I am not taking. My question is: what was the likelyhood of reoccurrance they gave you if you took tami or with out it? I thought in my case it is 4%with tami.
Thanks so much. Also if you have more wisdom, I would appreciate it. I am always learning.
thanks
Chocolate
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3% assumes Tamox for 5 yrs. I didn't take Tamox, so I don't know what my recurrence rate would be. The OncotypeDX test research was done on Tamox and therefore assumes the taking of it. The man on the phone told me that my recurrence rate would probably be lower with Aromatase Inhibitors but those weren't available when they devised their test. I did not take AIs either but do use all kinds of "natural" aromatase inhibitor supplements including DIM and I3C and so far my estradiol and estrone are at levels that make my hormone doc happy.
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Never got a oncotype yet, but have just started in my journey. Lumpectomy this last Monday and waiting for results yet. When will they give me my oncotype?
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If your tumor was ER+, then ask your surgeon to get the test done. Make sure your insurance covers it....if they don't, there are ways to get it paid for. Once you have the results, which usually takes 2 weeks...then you can discuss it with the medical oncologist.
Good luck!
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Agree with Voraciousreader, ASK for the Oncotype test. Once they have the tissue from the lumpectomy, they should be able to do it. I didn't realize it wasn't done automatically and lost a couple of weeks between appointments before having it done and getting the results.0
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I had to argue and beg for a month to get my oncologist to order it.
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I also didn't realize the Oncotype DX was not ordered at the time of surgery. I had discussed the test with the surgeon and one oncologist. The Oncologist at the surgeons facility did not order it, didn't think it necessary due to 2 micrometastases. Now the doc is giving me the choice of ordering it. I'm going to find out if it's covered and go ahead and order it. this sets me back a couple weeks, and this is not the first time i've been set back a couple weeks for various reasons.
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Hi my name is Janie and my Onco score is 2. I am doing Tamox but not chemo.
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ohhh..,forgot to tell you the doc said my recur-score was 4%
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Ok, Oncotype just in - 14 - with that 9% reccurance score.
I had a 6mm spot of IDC with a 2mm micromet in my SNB - one and only lymph node taken. Grade 2, Stage 1 - no lvi . . . bmx done one breast at a time . . . TRAM flap recon with this IDC discovery in my PMX. Obviously that next plastics surgery is pending!
I'm feeling a bit in the "Should I? shouldn't I?" zone wrt chemo and radiation. Rad Onc says, "Radiate!! But let's see your oncotype. . . " Not quite sure which way to go. . . VERY open to thoughts, observations, comments . . . .
thanks mucho - Kelleyod
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2 years ago, my Oncotype DX score was 16 so I opted for a bilat mastectomy w/reconstruction and "5 years" of Tamoxifen.
I was given a 9% chance of recurrence if took chemo right then and and there or a 10% chance of recurrence with nothing. For a one percent difference I chose to have no chemo.
It didn't really matter though because 2 years later, I had a recurrence. But whose to say if I was in the 10 percentile that I wouldn't have been in the 9th?
You just have to do what your heart tells you to do.
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KatRNagain92 - I'm so sorry that you've had a recurrence. Your story makes me a bit nervous. I chose bilateral mastectomy and Arimidex. I had that dreaded Oncotype DX score of 18, which is the lowest number in the "intermediate" range. My recurrence rate is 11% and chemo would have given me about 2% extra protection. I opted out of chemo with my MO's blessing.
Would you mind sharing a few details about your original diagnosis (type, stats, etc)? Also, how was your recurrence diagnosed?
Your profile (score, surgery, hormone tx) sound similar to mine so your post caught my attention.
Thanks and Best Wishes with your treatment. Hope it goes well....
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Sure Tina...if you just click on my user name, I've got a bio there with stats.
I had IDC stage IIa of the R breast until a week later of my BMX when they bumped me up to a b because of micromets to one sentinal node. (my left breast had a DCIS that was only found with the disection of my 'prophy' breast after surgery)
Being chemo pure has many many many advantages! Feel good with your decision and don't look back...only forward!
xoxo
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My tumor was also large. Actually it was two smaller tumors totally 4.2 cm. And I'm not that old (50), but my low oncotype score (8) indicated no chemo. I started straight to hormone therapy, and the longer I take it...the more it makes sense. My initial path report had a Ki67 at 31 and grade 2, so I was freaking out about no chemo in the beginning. My hormone recepter scores, though, were in the 90s for both estrogen and progesterone in both tumors. So...if there's no estrogen, my cancer can't grow. It's taken me a while to accept this.
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KatRNagain92 - Thanks for sharing; I understand your timeline now. I'm very happy that my PS and BS have taken seriously the lumps I've found since reconstruction. I've had an ultrasound and an MRI and the areas will be followed with imaging as well as physical exam.
Thanks again!
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I hope I am doing this right---
34% = 54 score -- BLM, R, SNB, HSTY, RAD x33, DD A/C & T
My oncologist said it was good that I had Oncotype testing done because I was found to be ER negative. I have been reading my test results and it says the specimen must be ER positive for the scores to apply. Has anyone else experienced this? I see my oncologist on 5/15 and will ask her this question also.
I wish I would have seen this thread when I first heard about Oncotype!
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Okay- My post might shake some folks up !
Make sure you understand to be vigilant to diagnose a new Primary OncotypeDx merely determines Distant (mets) recurrance NOT a new Primary and both people with a none cancerous breat or a prophylactic removal can get a new primary......so always be checking.
I had BC in 2006 - 3%-score 0--LMP, SNB,RAD,TMXF IDC stage 2a, grade 2, Highly ER+/PR+
Newly dx of IDC April 2012 in Other breast- IDC- surgery pending LMP/SNB/RAD/AI planned tentatively.
Dr is ordering a Mammastrat test on this go round.....stay tuned.
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Cat: You make an excellent point, thank you. I am saddened that my Oncotype score of 42 puts me at a 28% metastatic recurrence rate, but no one can tell me what my chances are of localized recurrence. One doctor said, "Well, it's likely it'll come back" but couldn't tell me anything more than that. Even with chemo my chances of mets are reduced to 18%.
Beth: I went into the Oncotype test being ER/PR+ and HER2-. The test changed my PR status to negative, and gave me an ER+ score of 6.6 - and 6.5 is the cut-off for being negative. So, I am .1 outside of being TN. Like you my understanding is that the Oncotype test is for ER+ tumors, so I don't know what it means when a tumor changes to ER-.
Nancy
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I called Oncotype testing and was told the positive or negative didn't change the outcome of the test. I already had chemo and just now read each word of the results.
If anyone can explain this better, please post.
Thanks, Beth
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CatfrFL your post is excellent! My question is how did you have another BC that they missed in 2006? More than likely your new cancer was already there in the other breast. Did you have a MRI of the other breast at the time of the original cancer diagnosis?
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Can you add me to the list? Oncotype 5% = 5 score, age 35, BLM w/R, SNB, TMXF, Zoladex.
Thanks!
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I came in at 51. MO is going with TCH for my chemo. Hope I did that right?
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Thank you so much for this thread. I am another terrified newbie. I was diagnosed in 03/2011. I agonize daily over no chemo, and, to a lesser extent, no rads. Nice oncologists, but I'm afraid to ask them many questions. I always feel as if I am taking up too much time and keeping them from patients who need them more.
ILC, <1cm, stage 1, 3 sentinal nodes negative, BMX, grade 1, ER+, PR+, HER2-, Oncotype dx: 21, age at dx, 67, no chemo, no rads, on Letrozole.
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My oncotype was 18. IDC with tumor size of 2.2cm, grade 2. Lymph nodes were clear during surgery (2 removed), but 2.2mm of cancer was found in one of them as part of the pathology review. Also, LVI and extranodal extension features. Based on positive lymph node, we opted for chemo. I had the choice of additional surgery to remove remaining lymphs or radiation post-chemo. After consulting with two different teams of doctors I opted for radiation based on their recommendation. So, I'm getting the full meal deal.
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Could you pls add me too. Oncotype 12. Recurrence rate 8%. BLM ,SNB neg, No Chemo, TMXF
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My oncotype is 21 with 14% recurrence. I had lumpectomy and sentinel node removal; will be having chemo, 4 cycles every 3 weeks Cytoxan and Taxotere. BRCA 1 and 2 negative. ER/PR+ HER2 - (but my score is close to the cut off). 9.9 cut off 10.7. Is that significant?
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I am in the process of deciding on whether or not to do chemo. My onco type score was 28 with 18% recurrence. Chemo adds 6-7% I think. I just finished my second week of radiation and would begin chemo two days after completion. Was already planning on taking Arimidex.
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Nancii.......My diagnosis is almost identical to yours except mine was a Grade 3. My Oncotype score was 27 with 18% recurrence. I had opinions from 2 MO's, my gyne and my breast surgeon. They all STRONGLY recommended that I do chemo. At the age of 48 and with a second breast CA dx within a year, I decided to go ahead with it. I felt that if it comes back, I know I have done everything possible to prevent it. I was already on Tamoxifen since February of this year but just recently stopped it during chemo. I'll either be restarted on the Tamoxifen or Arimidex. Good luck on your decision and be sure to let us know what you decide.0
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Nancii and rn4babies: My oncotype was 28, 18% recurrence. Both MO and BS recommended chemo, 4 rounds of cytoxan and taxotere. Lumpectomy 3/12, Stage 1A, Grade 3, no lymph node involvement. I will be done this Thursday--yeah! Then on to 34 rounds of radiation. For me, it was an easy decision. I rounded it up to 20% chance of recurrence with no chemo vs. 10-12% chance with no chemo. Believe me, I DID NOT want to do chemo, but didn't want to live a life of "what if's".
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kjiberty, my Onco was 51, which put me at 30-40%. My MO is not being more specific. She said with my chemo, that should bring it down by 10-15%. I will be getting copies of my Onco and final path. Really going to check into a different MO/RO.
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