NEW Oncotype Dx Roll Call Thread
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mbcr: I am doing very well on the tamoxifen. Had hot flashes first couple months, but that was it. As far as the periods, I had a hysterectomy about 8 years ago. So sorry I can't help you with that.
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I am so glad I found this thread! I am currently waiting for my Oncotype test to be completed. I go back to my onc next Friday to get my score (which I will report to you
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Jen
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Hi All: Age 46. IDC, Stage 1 grade 1. Micro mets in one of 7 nodes. ER+ PR+ HER2-. 1.2 cm. Oncotype score 20, 13% chance of recurrence. BRCA negative, although family history with cancer suggests some kind of mutation. Lumpectomy and removal of lymph nodes. T/C x 4. Radiation and Tamoxifen to follow. Will do zometa some time after that. Fight HARD and God bless all of you! XO, Mary0
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Hi MAGOB: you are node-positive and still had the oncotype test. Was this because you are post-menopausal or because of family history of cancer?
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Hi Mary - Technically, "on paper," I was node negative. I had microscopic traces in the first node. The way they decide is by size - under a certain measurement they still consider it negative. HOWEVER - new data suggsts that recurrence is still higher in women even with microscopic traces like mine. We may see protocol change in the future to consider all micro mets as node positive. That being said, go to the genomic health web site - the official site for the oncotype test. I believe they do testing for some post-menopausal and/or node positive women.
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Sam, here is my info for inclusion:
39 years old, premenopausal, 1.7 cm, Onco DX Score 8 (6%), BLM, node negative, but lymphovascular invasion (LVI), TX x 4, will be taking tmxf after chemo, radiation yet to be decided as tumor was .1 cm from chest wall.
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Sam, even tho I had had chemo six years before, I have been so curious about my oncotype dx score that I recently had it tested with archived tissue. My onc warned me it would be high--but I just wanted to know. I am postmenopausal with extensive node mets (my sb had a large tumor wrapped around it) and a large primary tumor-- 5cm. I am er pr positive, her negative, grade 2, stage 3a ductal. (Yes, they have recently started doing node-positive cases) and guess what? My score was an 18, and it is worth the expense--it has made me feel so much better. I did everything, mast, dd chemo, 6 years of AI's, radiation. Maybe it wasn't all necessary afterall. I think there is no way we can second guess OncoDx results--this is a unique test that goes beyond the parameters we have always had.
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weesa, I am so amazed that your doctor did the Oncotype for you. YOU HAVE A FANTASTIC DOCTOR! Just think if the TAILORX study was completed on the past 10 years of breast cancer tumors instead of the next ten years of breast cancer tumors. So many women could be spared chemo. It just seems that we are so far behind on research. GO WEESA!
Melissa
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I should be getting my oncotype test results this week. I'm SO nervous. I keep telling myself that lots of women survive chemo. Please, please, please let it be a low number......
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I just got the phone call from my dr.'s office. My oncotype number is 9! No chemo. I'm 66 years old. IDC. Tumor 1.2 centimeters. Grade 3. ER+/PR+, HER2 neg. BMX. SNB.
That grade 3 really had me worried.
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Melissa, Yes I do have a pretty great onc. He really believes in teaming up with his patients. When I first broached the subject of getting tested for OnctotypeDx he was taken aback and tried to tell me it was of no use now. I convinced him otherwise. (I was trying to make a decision about quitting AI's as well as always having the nagging feeling I just wanted to know.) I told him I was willing to pay for it, etc. He said, "Well, I can see you are really determined, let's do it." My onc totally skipped the Arrogance 101 course in medical school (Yale) and instead took that great elective, "Building Consensus with Your Patients." I have been very lucky with him--but of course I had to kiss some frogs along the way before I found him. Your idea about the Taylorx study is really intriguing.Do you suppose we have enough political clout to make better use of archived tissue?
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carolehalston, that is great news for you!!!!!!! Celebrate! I am new to posting on this thread, but have been following it for awhile. I am waiting for my oncotype score, and will post when I get the results. I signed up for the TAILORx trail, and hope all works out well. You are all amazing women, and I thank you for your wisdom.
Hugs,
Susan
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Hi,
Just received my score of 9. Age 48~IDC 1.5 cm ~ ER/PR+ ~ Her2Neg ~ LUMP~Meno after LUMP
Alternative Therapy
Carole
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Efflorescing, congratulations on the low score! I'm happy for you.
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HOORAY CAROLE! I'm so happy for you! This is THE BEST NEWS. XO, Mary0
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I am very excited about the results! If it were not for the information posted on this site I would not have known about oncotype, had the guts to insist that my oncologist order it and I would be halfway through the chemo she said I absolutely needed to survive. According to her calculations I had a 25% chance of recurrence in 10 years.
Thank you!
Carole
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Just a gentle reminder to everyone,
Please sign up for the TAILORX study. Be sure and ask your doctor. There is no cost and we can help others in the future. PM if you need information.
Melissa
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Efflorescing - sing is sista! I had the same experience. Ist oncologist wanted me in clinical trial for chemo (2 drugs vs. 3 drugs). No mention of ONCOtype test. If it weren't for this discussion board I might not have had the guts to walk out of there and get a second opion doc who offered ONCOtype to me without my asking.
I thank God for what I have learned here and for having been led to this place.
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MBCR Like you I was 49 when diagnosed and had regular periods, but the combination of chem + tamox sent me in to menopause. My onc was hoping it would come back and had my hormone levels tested every 3 months for 9 months. She wanted me to sign up for a clinical trial on ovarian suppression but the chemo & tamox took care of all that. I do have HOT flashes and a few more aches and pains than I used to, but overall I am back to "normal" after comleting chemo last Oct and starting tamox last Nov. Feel free to PM if you have more questions.
Take care ladies!
Joyce
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I would be interested in learning how many women chose not to do chemo based on a high OncotypeDx score.
My score was a surprising 31. Surprising because everything else had put me in the low group. My tumor was 8mm, Stage 1, no nodes involved, and I had a mastectomy. BS said I was very low risk. After much study & debate I decided not to do chemo. When we looked at the charts, chemo only gave me a 3% better change. The Onco charts group stage I and stage II folks together. I was Stage 1. Plus I was going to be taking Arimidex which I was told offered my case a slight improvement over Tamoxifen. Decided that in my situation the possible side effects of chemo overshadowed the benefits. ONC said he was fine with my decision.
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As others pointed out when I decided not to do chemo, the oncotype score is only one piece of evidence to consider. I agreed with them, because it was not the only evidence my decision was based on, and like any other assessment method it is not (or should not be) relied on absolutely. In many cases it is the most precise way of assessing how a tumor is likely to behave, but that doesn't make it infallible. The oncotype website emphasizes that it should be considered with other indications when making treatment decisions.
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I just recieved my oncotype score of 24. I signed up for the TAILORx trial, and was randomized to Chemo and Tammox. I feel okay about that since my score is close to the cut off any way, but a little sad that I have one more thing to face.
I am 45 with Pleomorphic ILC,1.9cm,ER/PR+, HER2-.
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OK Diva - We're right here with you. And a tip of the hat to you for being in the trial - you are paving the way for our sisters in the future. God bless you. XO, Mary
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17% = 25 score (rdrake0: Age=60, LMP x 2, SNB w/no pos nodes, RAD=33, A/I, Mets to liver, [Ixempra (new chemo) + Avastin] (clinical trial)
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Thank you Mary, I am thankful for all of the women who have participated in trials in the past, so I feel good about doing my part too.
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OncotypeDX score 0. It says 0% local recurrence and 3% distant recurrence.
BLM, BL-SNB, HYSTY
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Wow, Luna5, a score 0!! My 9 looks high in comparison. Will you be taking an estrogen blocker?
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Luna5 - how good is that - never heard of a 0 - must have felt like you won the lottery. Fantastic.
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Just PM'd my details (Onco 17 like the others listed same) Hey Luna that does rock! So what was the TX decision at 0%? Wonder if that means you now have LESS chance than a non-BC person to get BC! Hope so
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Good for you Luna5! I hope you are able to relax and enjoy that awesome result!!!!
Susan
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