What was your Oncotype score? And treatment?
Comments
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hi, I was diagnosed at 45 years old had an oncotype of 11. I was offered chemo due to my young age but with no node involvement it didn't make sense to have it. I had 36 rounds of radiation and am on anti hormonals for 5 years. Good luck with your decision. I know its a hard one. -
hi bevin, I noticed you are both ER and PR + the anti hormone treatment makes a lot of sense for you. I just started my exemestane again I have 2 years left. Sounds like you have less than 1 year to go.
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Hello,
I had an Oncotype of 5 so I chose no chemo. I had 25 rads and am about to start hormonal therapy. For now, I'm choosing to do ovarian suppression + aromatase inhibitor. Nervous about it, by my onc says that it will 20% more effective than tamoxifen for me.
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Hopeful, I have been away from this thread since before my first chemo and I see you asked if I knew my Ki number. No, I was never told about it. I wish I had all the tests done that are available. I believe knowledge is power.
But everything dealing with my breast cancer was put on hold for nine weeks while biopsies, cultures and scans were done to determine if I also had cancer in my right lung. It was a long nine weeks, but a happy ending. So only after that was over, was my oncologist back as lead doctor and she could order oncotype dx. I was getting nervous about the length of time elapsing before any treatment would be started, so I ran with the info I had and signed up for that clinical trial.
I was also asked why 29 nodes were removed. I don't know. When I read the pathologist' report it only described a cluster of nodes found in some fat. Gross, huh!
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Thanks for the update, Sweet Hope. I'm so glad you didn't have lung ca on top of everything else; that must have been a pretty bleak period for you.
It's too bad you weren't given your Ki-67, which is the replication rate of the cells in the tumor; it gives you some idea of how fast growing (duh) and aggressive the tumor is. As you say, knowledge is power.
I can answer your question about why 29 nodes: When the ALND is done they simply take out that whole fat pad in which the nodes are embedded. Some women have fewer in there, some more. Some pathologists are a bit more compulsive about digging out every last one than others. So the number tested can vary wildly. In your case, given that only the one turned out to be positive, it's kind of too bad you had to go through the full dissection. I guess the good news side of the equation is that you know the rest of them were clear.
Hope you're holding up ok through the chemo. Hang in there!
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Mine was 16; all nodes were negative. I had BMX but no rads or chemo, age 60 at DX. I started Arimidex in June 2014 and will be on it for 5 years.
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I am 35 years old. Diagnosed 12/1/14. I am stage 2a, no nodal involvement. My oncotype is 15. I too had LVI but my MO says that is all factored into the Oncotype score. A MO at Johns Hopkins also said that they do not look at LVI alone and that the Oncotype trumps everything. My MO says no chemo as it would give me less than 3% benefit. I will get radiation and hormone suppression for 5-10 years.
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you can see my stats from my signature. Onco type 41. At age 44. Had chemo. Almost a year later I'm doing great.
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My oncotype score was 11. Stage 2, Grade 1 IDC. I had a lumpectomy followed by 33 Rads treatments and currently on Tamoxifen. 4 years since my DX. Tamoxifen is no walk in the park but SEs are manageable.
Diane
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OK, here it goes, I'm 60 had a mastectomy on my right and 1/42 nodes. Signed up for the study and just rec'd my Oncotype DX score of 9. Yes I was happy with that, now to make the decision on letting the computer randomly select chemo or no chemo, or just cancel out of this study for fear of chemo. Well I would first like to thank Sweethope for all of her help and suggestions with helping me understand that chemo is doable. I have sent a list of questions to my doctor and with the answers I get my children and I will togather make a decision over the weekend on if I should stay with the study or not. I would like to stay with the study as I think it is beneficial to future breast cancer patients. But it is still a personal decision that needs to be made. Prayers to all and hugs for all going thru this terrible time in our lives.
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Bumping the thread by replying. Oncotype 19. Negative sentinel node. No chemo. Will start AI soon. Age 56 at dx.
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diagnosed at 42 end of May. Just finished 4 rounds of TC due to Oncotype 27 the dark grey area.... Had clean margin, no node involved. I remembered my MO said AC-T or TC if score was high. TC if it's in the middle. Starting Tamoxifen in a few weeks.
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Oncotype Dx score was 29, which is on the high end of intermediate. We later found out the cancer spread to 2 lymph nodes, which made me an appropriate candidate for chemo. I did AC + T. In the past Oncotype Dx was used for just none negative hormone positive breast cancer. Now, It can be used in women who have 1-3 nodes positive.
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Hi Ladies
Am I crazy to do chemotherapy with an onco score of 9? I had one node positive which makes me want to do chemo, but reading that some of you opted out of chemo, even with a positive node, makes me re-think my decision. I haven't started chemo yet. My cancer is also low grade which makes me lean toward no chemo, but that darned lymph node. I also see some women with no nodes positive do chemo - what am I missing?
Kim
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I was 58 at DX; 21 onco-score. No LVI or nodes. Decided on chemo. Feeling great 2 yrs later! My decision to do chemo was based on the fact that I did not want to look back and have regrets, should I have a recurrence...but, we just don't know, even if we do have chemo, do we?
Kimmer, I would probably not do chemo because of your grade and onco-score. A few suggestions: Maybe you could get another opinion or ask if you are a candidate for the mammaprint test...? Any family history? Did you have the BRCA testing done? Are you in overall good health otherwise? Hard decisions. Good luck with yours.
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Kimmer33....check out the thread about the Tailorx results. Lots of discussion about the Onco score group your in.
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Onco score 12. Negative sentinel nodes. No chemo. Had BMX, so no rads either. Starting Armidex next month.
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Oncotype 23, negative nodes. Having first round of TC x4 on Thursday. One of the main reasons is that my ER is just 25 % positive. Had I been 90% positive I would not have chosen chemo. In your place I don't think i would choose chemo. Radiation gets the node. Your score puts you low risk for distant metastasis. This is a tough decision and only you and your doctor know all of your circumstances.
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Hi Kimmer:
I note some comments above about the recent TailorX findings for patients scoring 0 to 10. Just a reminder to all that those recent TailorX study results are from node-negative patients:
http://www.nejm.org/doi/full/10.1056/NEJMoa1510764...
Regarding your last question, you are correct that some node-negative patients do receive chemotherapy. These might include HER2-positive patients, in which a chemo plus trastuzumab regimen is indicated [EDIT: (and being HER2-positive are not eligible for OncotypeDX for invasive disease)]. Among HER2-negative patients, it could be some patients classified in the intermediate risk group (score 18-30) or high risk group (score ≥ 31) by Oncotype Dx Recurrence Score ("RS"). Or even some patients in the low risk group, such as those with scores at the higher end of the range (closer or equal to 17). Apparently, some patients do not select treatment in accordance with their Oncotype test results. As explained in a publication about use characteristics:
"Chemotherapy use is not always associated with Oncotype DX RS. The most obvious reason for this is that the decision whether to use chemotherapy is a choice made between a doctor and a patient on the basis of many variables. Despite being at low risk, a younger patient with a large tumor may perceive that she would be more comfortable receiving chemotherapy in hopes of risk reduction, despite the intent to follow the RS value in determining the treatment plan. Conversely, an older patient with significant comorbidity and a high RS might make an educated choice to forego chemotherapy despite the high RS."
Like Keepthefaith said, if you wish to pursue it, you may find a second opinion very helpful whatever you decide. Different oncologists explain things differently. You may find further discussion with another MO helps you to understand better or more about your diagnosis, personal risk, and the strength of the data supporting the use of the Oncotype test for decision-making in node-positive Stage IIb patients. Quite often, I wish I had sought a second opinion about endocrine therapy.
BarredOwl
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kimmer, I'd get a second opinion on the chemo. I had a 14 onco, one positive node, 11 clean, and the positive was 2.8 mm, barely positive according to MO. If you're a grade 1, you have slow dividing cells and chemo kills fast growing cells, that's why they're saying chemo not beneficial for many of us now. Hair cells are fast growing, that's why most lose their hair from chemo. Do you know what your Ki67 stain was? Mine was a 3. I had mastectomy and tamoxifen. I didn't do rads. Kim.
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Kimmer, I am llB, 2 positive nodes and extensive LVI. My oncotype Dx was 13. I was nervous about MO saying no chemo so I got a second opinion. Second opinion oncologist said that if it had been prior to TailorX study I would be having chemo for sure. He said chemo would only provide 3-5% improvement and not worth the side effects however he said he would recommend it to my MO if I want it. I don't, I just needed to hear it from another source. I had some things that happened that left me feeling unsettled but now I feel like I have done my due diligence.
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I am 51, stage IIA, 0/2 nodes with an oncotype of 24. Due to a clerical hiccup and the holidays, it took 7 weeks to get my results, so I am actually going to start radiation this week. I've been told there is no benefit to having chemo or radiation first. If that is the case, I'm not sure why radiation is not started right away for lumpectomy patients.
Because i am borderline, we are also getting a mammoprint. I feel good that we are finally starting treatment, but still may go the chemo route if it comes back high.
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I was diagnosed at age 42. Stage IIb, triple positive with one positive node. Given that I was triple positive and grade 2, they didn't even run an oncotype- just said chemo was necessary. I don't regret it as my BMX showed pCR but I am curious (purely scientific curiosity) what my score was. I guess it doesn't matter now but just wanted to share my experience
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My Oncotype is 18. Prior to receiving the result, my MO wanted me to do chemo because of my age (45) and Ki67 After seeing the Oncotype, she said no chemo is necessary.
I didn't have radiation either.
I just started Lupron to suppress my ovaries and will start Arimidex.
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hi luv joy... What was your ki-67? Mine was 25 with an onco of 1
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I decided on chemo without getting the Oncotype done. In my case, though I have some favorable factors (hormone positive, node negative), I also had synchronous bilateral cancer. That, plus my age (45) and a ki67 score of 25 for the larger tumor, all factored in to my MO and me both having the gut feeling chemo was wise. My insurance company is still arguing with them over a couple of stupid things but once resolved I'll be starting four rounds of TC. I also had a BMX with a positive margin on the right (the sloooooow and tiny side, but still), so, radiation also.
This thread is so interesting because there are so many variables--and so many different comfort levels regarding treatment.
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I had an Oncotype of 15 with one 4mm node, but no LVI or extra capsular extension. My ki67 was apparently 25%, but my mitotic score was only 1 (slow growing cells). Some oncologists don't think ki67 is reliable. Oncotype goes beyond pathological grade and looks at the activity of certain genes. It does include ki67 but there must be other genes that counteract it. With all of that, I was still told that based on non-oncotype factors, chemo would give me a 10-year benefit of 5%. For me it wasn't enough to go through with it. Now I'm on tamoxifen for at least a year (bone issues) until I can switch to an AI. Wishing you all the best.
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This is a great thread
I too wasnt sold on chemo, BUT I have three positive nodes; one with 1cm and two w/ extremely microscopic amounts. My tumor was also 4cm. My oncologist didn't even do the Oncotype DX test she stated that the trial really doesn't include pre- menopausal women ( 27 years old)
Now I want to know my score! Im doing AC-T now and feel like it will be beneficial but I also have to do rads and endocrine therapy
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You can see on my profile my info and treatment. I decided to do chemo because my MO also stated that Oncotype wasn't as reliable for pre-menopausal women (although the consulting MO at MD Anderson said it WAS, but still recommended chemo)... Supposedly I had about a 3% benefit from chemo and a 13% risk but my MO said double that and that would be my benefit and risk. Another consulting oncologist said that wasn't true. So I dunno, I just did 4 rounds of TC to feel better about it. Wasn't bad at all.
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I was one month shy of 41 at dx and had ki-67 of 6%, no nodes - even though I had bilateral bc, my oncodx was 11 so BMX and tamoxifen, no chemo, no rads. My onco never discussed chemo with me: they even estimated my score to be 10-12 - it was smack in the middle!
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