Oncotype DX score 31. chemo or not?
I got DCIS 4 mm, stage I , lymph nodes negative, ER, PR positive, HER 2 negative. I had IORT (surgery and inside radiation) 2 months ago. I'm 47 y.o. My oncotype score is 31. My MO said clinically I don't need chemo, but the score of 31 recommended to do chemo + tamoxifen to reduce the recurrence risk from 21% down to 6%. The chemo would be cytoxan and taxotere 4 cycles. He let me make my own decision b/c it's personal preference. I need all of your opinions. Every single feedback are greatly appreciated. Thank you so much.
Comments
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Chemo. You are in the high risk range. Your doctor should not have ordered the expensive test unless willing to make a different treatment decision based on the results. The results show that you would benefit from chemo. Reducing risk of 21% to 6% is HUGE!!!!!
And, honestly, chemo is NOT SO BAD! (Other than then hair thing - but that is just vanity.)
Good luck to you.
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We have very similar BC stats and my MO did not think it was a choice on whether I should do chemo. My Onco DX was 38, so I did four rounds of TC and am now on Tamoxifen. It was all very "doable" and I continued to work throughout treatment. My risk of recurrence is now between 8-14%.
Do it and rock the bald look!🎀💪
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Chemo. I finished four rounds of TC in June. While it wasn't a picnic, it was certainly tolerable. Especially given the reduction in risk!
The hair part is pretty sucky, but not as suckyas a recurrence.
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Thank you all for your advice. I think I will do chemo. Reading your replies has given me a HUGE strength to get my mind prepared for chemo. For the hair loss side effects, will I loose all of my hair after 1st cycle? Should I buy a wig now and have it ready before starting chemo? Thanks again for all of your support.
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I was 47 at DX but I had invasive BC. I don't think yours is, is it invasive? Anyway I did Taxotere and never got my hair back. That was 5 years ago. There is a 10% chance of that happening with Taxotere. If you are borderline, I personally wouldn't risk it and would ask for a less harsh treatment. It's not vanity when you're stuck in a hat for the rest of your life!! Check out www.aheadofourtime.org for more info. Good luck!
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Didn’t realize they give chemo for node-negative pure DCIS. Isn’t the OncotypeDX for DCIS score supposed to determine the need for radiation, not chemo?
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sandyp do you have IDC rather than DCIS? As Chisandy says, chemo is not a treatment for DCIS.
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Assuming the OP meant invasive cancer, I'm still surprised the tumor was sent off for Oncotype testing, as the NCCN guidelines don't typically recommend chemo for tumors <5mm.
A high Oncotype of 31 would make more sense for pure DCIS, as the DCIS ODX scores are much higher than for those with invasive disease, but as pointed out above are used to determine the need for radiation, not chemotherapy.
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JP, you've made a big decision so make sure you sleep on it. My cancer is a bit different but my Oncotype score was 26 and I was given the choice..I chose chemo, same protocol as you. Yesterday was day 17 from my first chemo and my hair is coming out rapidly..it can start about day 14. In preparation I got scarves, a wig, and a buzz cut last week to help.
Good luck on your journey
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Please make sure whether you have DCIS or IDC. A score of 31 indicates quite different things for each of these. The former whether to have radiation or not and the latter to have chemo.
I had IDC and a score of 30, the highest Intermediate score. I went forward with TC chemo. 31 is the lowest high risk score for the Oncotype for IDC. Except for unusual circumstances and maybe a very small tumor, chemo is usually recommended.
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Thank you all for your input. Now, I'm getting confused. There are two ONCOTYPE DX scores, one is for chemo, one is for radiation. My tumor is DCIS, stage I (so it is considered invasive) ONLY 4 mm, lymph nodes still negative. At first, all of my MDs, including the surgeon, rad. oncologist and even my MO said that with this early stage CA I got, they are sure that I don't need chemo. My Rad. Oncologist once said that he didn't think I need oncotype DX test b/c it's not necessary for this small tumor. Now with the score of 31, my MO mentioned about chemo. So, I think I should get a second opinion from a different MO.
Dear beebs2704, thanks for the hair loss warning. If I decided to do chemo, I would chop my hair short, but with style, get a wig before chemo. I plan to continue working, at least after the first cycle, so I really need to look decent at work.
Jackster51, I'm sorry to hear that your hair didn't come back. Hair loss is the first thing it comes to my mind when I hear the word chemo. I was crying for 3 days, just thinking about having a bold head. My current hair is full, long and beautifully healthy. I just not ready to loose it yet, but I got to do what is necessary to prevent the recurrence of CA. My CA is invasive stage I, no node involved yet, so hopefully I'll get a lighter dose of Taxotere.
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My hair started to fall out about two weeks after my first chemo treatment of taxotere/cytoxan. I chose not to get a wig and just wore hats - my treatment stated in October and lasted until January and it was cold so I would have had a hat on anyway. Chemo wasn't bad but the Neulasta was horrible. It was like I had the worst flu. But I got through it and it is al behind me!. My oncotype dx score was 25 and my MO said he felt I needed chemo and I trust his judgement. I was told from the beginning diagnosis that I would have to have radiation. My cancer had spread to the lymph nodes. I had 12 weeks of chemo and 6 weeks of daily radiation.
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My hair started to fall out about two weeks after my first chemo treatment of taxotere/cytoxan. I chose not to get a wig and just wore hats - my treatment stated in October and lasted until January and it was cold so I would have had a hat on anyway. Chemo wasn't bad but the Neulasta was horrible. It was like I had the worst flu. But I got through it and it is al behind me!. My oncotype dx score was 25 and my MO said he felt I needed chemo and I trust his judgement. I was told from the beginning diagnosis that I would have to have radiation. My cancer had spread to the lymph nodes. I had 12 weeks of chemo and 6 weeks of daily radiation.
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sandyp11, Your latest post said that your are DCIS, Stage I and that it is invasive. That is confusing because DCIS (contained within the duct and not invasive) is Stage O and the Stages 1-IV are used with IDC, which IS invasive.
I am wondering is you are confusing Stage with Grade?
If your tiny tumor had a bit of microinvasion happening, that is what the radiation was supposed to address. Even with an Onco score of 31, I am not at all clear why chemo would need to be considered.
If that risk of recurrence percentage is coming from the Oncotype report, maybe you could ask for it to be presented in another way. A lot of doctors use a program called Adjuvant Online. In fact, you can check that out online yourself...but you have to be a "doctor" to do it.
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Hello to all,
Sorry for the confusion. Yes, my core biopsy said DCIS with microinvasion. But my surgical pathology report stated: IDC, 0.4 cm, grade 2, with atypical papilloma. But they also see DCIS, probably at a different spot. Yes, I did have radiation at surgical time (IORT) and it should kill whatever left after a lumpectomy. My margin was clear as well. That is why I need all of your opinion about chemo or not chemo.
Elimar, my MO wanted to double check my score with Adjuvant Online, but that website has been down since 10/3, and it's still down at this moment.
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Sandy,
Do you have a copy of the Oncotype DX report? If so it will specify whether the sample tested was DCIS (and your score reflects need for radiation) or IDC (and your score reflects efficacy of chemo AND Tamoxifrn/AI). The scores are NOT comparable; the DCIS scores (which are historically higher than the invasive Oncotype scores) cannot be also used to determine the need for chemo. Two totally different tests with different scores and different uses. You really need clarification on this point before deciding on chemo.
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My surgical pathology changed my treatment which it sounds like yours has too. Initially chemo wasn't on the table but then the grade went from 1 to 2 and the stage went from a clinical I to a surgical II. Isolated cells were found in one node which technically is still consider node negative but combined with a lot of other grey areas (intermediate Oncotype score, dense breasts, medium range ER+/PR+, etc.) my case ended up going before a local cancer board. The general consensus was to go with chemo but it in the end it was my choice. Like you, I was offered 4 rounds of TC of which I've finished my second infusion last week. It's not fun but it's doable and I'm still working full time.
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I understand a bit better now that you have given more details. Maybe still find out what the Grade was? If you have Grade 2 or 3, that level of aggressiveness may be behind your Onco score of 31. What I mean is, even tho' it was only microinvasion, it may have aggressive growth features. That is a factor to consider when thinking about doing chemo or not.
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I do have the copy of my oncotype DX here and it didn't said any thing about either IDC or DCIS. It shows the score is 31, prognosis: 10 year risk of distant recurrence is 21% with Tamoxifen alone. Even though my tumor is tiny, there are lesion near the margin and they contain focal atypia. Those cells are not malignant, but they not normal cells either. My MO explained that those funny-looking cells are just like polyps in human's colons. No one know if those cells will become CA or not, but it's wise to remove them. However, my surgeons and the pathologist decided not to re-excise it, b/c they not malignant. Because all of these abnormal cells, my score is high, I guess.
Bagsharon, you're amazing. Do you feel tired, nauseous, or any pain after each cycle? Does your job require lots of physical ? My RN said it usually hit you most on the 3rd and 4th days. She recommended do chemo on Wed. or Thursday, so when it hit you the most, you can rest at home on weekends. I work part time and I plan to continue working, at least through the first cycle and will adjust schedule base on how I would feel. My job required moderate amount of physical, do you think I can handle it? Thanks for your input.
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sandyp11,
You must have the Oncotype paperwork from the IDC. My IDC score was 30 and the recurrence risk after Tamoxifen was 20%. A report on DCIS would not have mentioned risk of distant recurrence.
So the difficult question for you is whether or not to do chemo for a tumor that is small. Mine was considerably larger, 1.5 cm. I'd suggest getting a 2nd or 3rd opinion from MOs not associated with your current one's practice, if at all possible.
I managed TC ok and worked throughout treatment. Still I had a serious SE that would have been life threatening if not treated immediately. Chemo is not w/o risk of serious complications, yet has real benefits for some. Unfortunately we don't know who in the lower stages really needed it. It should be considered with care from both angles.
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Thank you Doxie. Your post is very helpful. Your case is similar to mine. I have appointment for a second opinion in 2 weeks. More likely, I might do chemo. Even if this MO recommended NO chemo, I don't know if I can live in peace or keep worrying about a distant recurrence..
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Sandy, I'm not amazing. I have bills to pay and I'm a desk jockey. I do chemo on Wednesdays so my high fatigue days happen on the weekend. I have had to use a couple of personal days here and there but I had saved them for just this reason when I was first diagnosed.
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Bagsharon, you are deserved to get a big credit here. I admired all of you. Going through cancer Dx, then surgeries, and now chemotherapy and continue working. You all are awesome.
Bagsharon, keep up the good work, you are already half way through. Wish you all the best.
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Biology trumps stage. In other words, the Oncotype score is more important than the size of the tumor.
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