Oncotype Dx Test Anyone?
Comments
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Thanks MsPharoah. You're right about feeling better after making a decision. I actually feel surprisingly good. I'm just happy to be able to get moving. I feel like it's another step in the direction of this being over. Granted I'll still have radiation and 10 years of tamoxifen to go, but I feel much happier having my plan finalized.
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Kiwi - Thank you for letting us know. I agree with your decision. You won't regret it. I just did my 3rd TC today. I am so glad I am brave enough to do all I can to live a long cancer free life and you will too.
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Warrior Woman, hello! I can't believe how fast time goes by and here you are at treatment 3! I had 6 TC treatments and it wasn't easy but I made it through just fine. I am 6 months PFC now and I have the cutest pixie haircut ....which I am going to keep. LOL. Who knew? Best to you for minimal side effects!
Love, MsP
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kiwilady - just curious why your Oncologist already decided you would be on Tamoxifen for 10 years; I am Stage 2, Grade 1 and just had an appointment with mine and she said I would not be on Tamoxifen that long. Maybe its the grade of our tumors? BTW my Oncotype score came back@11 maybe that's the reason? Diane
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Kiwi, at least you know where you stand. Having a low oncotype like I did made chemo likely to be less useful, but there is always that nagging voice "Did I do everything?"
Best wishes as you go through treatment; you'll find plenty of support on these threads.
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Edwards - My Oncologist determined 10 yrs. of Tamoxifen based on my prior path reports and not on the Oncotype. If I'm correct, Oncotype determines chemo but not hormone tx. Oncotype assumes 5 years of Tamoxifen. 10 years has proven benefits over 5 years for my cancer. However, after I'm well into post menopause I may get switched to something else for the remaining years. I was told 10 years would reduce my recurrence risk by another 3% over 5 years.
MsP - It was just the other day that you were holding my hand on here as I panicked! Thank you.
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Thanks for the messages of support everyone
Edwards - for me with tamoxifen the Oncologist has said 10 years based on my age. I'm 41 and so he wants me to be on tamoxifen till closer to menopause age. So 10 years of suppressing hormones is what he feels is needed.
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Kiwilady: Glad you made that decision. I am still waiting for my Oncotype results. If I am in the middle, as much as I do not want chemo, I am sure I would probably take it. Good luck to you and please keep us posted on how you are feeling during your treatments. I wish minimal SE's for you!
Edwards, I am post-menopause and have just started taking Femara and was told I should stay on it for 10 years as well. All my MO said was he used to recommend 5 years of hormone treatment, now he wants his patients on the hormones for 10 years. It is a long time but if it keeps me disease free, so be it. Who knows, hopefully they will come up with something in the next years that will be easier on all of us. I sure hope so!
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I just found an interesting site that my radiology oncologist told me about called cancer math. It predicts survivor rates, mortality, and some therapy predictions. Simple to use. Try these out.
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Wanted to share my Oncotype results which I received late yesterday afternoon. 12!!!! So, no chemo, would not help my chances any and now on to rads. My MO gave me a 16% chance of survival over the next ten years without hormone treatment. If I remain on the Femara, which I intend to, the odds are literally cut in half, to 8%. Bracha also came back normal, so rads here I come!
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Okay thanks Warrior Woman, Kiwilady and BigDBeating...My oncologist was so quick to say I wouldn't be taking it 10 years that I just didn't think to ask her why. I am ambivalent about that anyway. Another 5 years would mean the SEs would continue but at the same time I like the extra insurance from taking it. I am post menopausal and that makes a difference too.
Congrats BigDBeating on the low score. I know you are so relieved. I had RADS - 33 treatments and had very few issues with the treatments...burning and fatigue but nothing major and certainly beats the alternative. Diane
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Yep, Diane, I hear ya, always better than the alternative. I do not like taking meds in general, but in this case I will take it. Every doctor is different just like every patient is different. My MO used to prescribe the hormones for five years, now he has upped it to 10. He said it just lowers the risk of recurrence. My MO is the definition of "scientist." We have had discussions about certain supplements I take and he says he does believe in most of them. Why? He says there is no scientific evidence to support it. I disagree with him, but enjoy the discussion about how he thinks and feels. We are each our own most important advocate and we have to do what we know works for us. I am post-menopausal as well. Thanks for your words on RAD SEs. Of course, I am worried about how bad they will be for me. I am very fair and burn easily, but no matter. It is something I need to do and have been told not to worry about SEs, that they are much more manageable now than they used to be. I am having 21 total, a little more condensed and getting more than if I were doing 33. My RO says I can do that because I am no having chemo. 18 whole and 3 boosts. Just hoping and praying the fatigue is not too hard, I need to work but of course will take some time if I need to. I am just grateful to live in an age where we have the options that my DM never had. And grateful to be able to link up with all of your wonderful women in here, you keep me sane on the days when I am down.
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Congrats on the low score, BigDbeatingBigC!
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Thanks, Kiwi, and am happy you have your plan in place as well. We have sort of mirrored each other, with our diagnosis dates being the same, receptors are the same, and we will be going through RADs about the same time too, right? I feel the same as you right now. Since 12/17 it has been an emotional rollercoaster, and the waiting for test results was brutal. Everything the beautiful women in here always said is right, you feel better once the plan is in place. You know what you have to do, and you dig in and do it. Whether this piece of sh_t disease comes back one day or not, I am ready for the fight and will give it my best. It got both of my grandmothers and my mother, but not me. I have a fighting chance and I intend to enjoy every day I have.
Love you all and sending healing light and energy to you.
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BigDbeating Glad to hear your ONC score was low and NO Chemo. I am still waiting for my ONC results, hoping for no chemo. I saw the radio ONC and he said 33 treatments low and slow to minimize organ impact since BC on left side. I should hear ONC results this week. Ready to move on and get this show started and behind me. Ask about creams you can use prior or after RAD treatments to keep skin supple. They can supply them or you can get them. Good luck with RADs.
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Thank you so much, flagirl, and I wish you a low onc score as well. The 33 treatments make sense as your bc was on the left side. Mine is on the right. I have read a lot of info on here about different creams. I will see what my RO give me. Like you, I am ready to get going with this and get it done. Let us know what you find out this week. I will be praying for you.
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BigDBeating
JUST got my Onc score 22. Surgeon said he would like to see a little lower, but thinks I should be able to squeak by without chemo. I have apt with oncologist Monday to see what he thinks. He will run the score through the software and see what percent improvement with and without chemo. If its only three percent I think I will make the decision to not do chemo. My distant chance of recurrence is 10% on Anastrole for five years which can be lowered if I do ten years. Anyone out there with the same score? I Would love to hear your input and how yo made your decision.
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Big D, I am fair w/red hair. I had 28 treatments. The nurses told me to prepare to burn. I used Aquaphor, religiously. Had very little burn. Be sure to slather on whatever you choose and continue for two weeks after treatment is over. The radiated skin will continue to burn. Hope you have great results!!
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Flagirl, my Oncotype score was also 22 and I decided to go ahead. Since the Oncotype recurrence rate percentage was 15% and my Adjuvant Online rate was 16% after hormones and radiation I decided to look at the other numbers Adjuvant gave.
With chemo it was estimated that I would get to 7% and the difference of 9% was way too much for me to ignore. So here I am, 1 infusion out of 6 done.
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Thanks, jlow. I appreciate your input. Hope I get the same result!
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Kiwilady
Went to oncologist today the said No chemo because my BC tumor was 1 cm. Onc score 22 so I have a 14% chance of recurrence, but with Anastrozole it was lowered to ten percent. My page two lines did not cross so I would not benefit from chemo. So, now onto RADs. Meeting with radio oncologist next week for CT Scan and treatment protocol. Ready to get the treatments started. When he did the adjuvant review I was already borderline for NO Chemo, so the ONC confirmed it.
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Question regarding accuracy of the Excel results.
I’m 59 and had a lumpectomy in late Feb; tumor was 2.8 cm,
grade 1 (3+1+1), ER+(high, 100%), PR+(low, 5%), node negative (0/1). Regarding
the choice of chemo, the med oncologist said I had three factors in my favor
(grade, ER receptor & nodes) and two things not so much (tumor size &
low PR). He ordered the Oncotype Dx & the path material was sent yesterday.
Another med oncologist I consulted said he agreed with the decision to order
the test and for any number over 18, he’d recommend chemo since my underlying
health is strong.OK – so I have run my figures through the Excel spreadsheet
and have come up with numbers hovering around 18-19 depending on how I
characterize the 100% ER positive (300 or 270). I don’t have access to a Ki-67
figure though the early biopsy report says that Pan-CK is “strongly positive” –
what the heck is that? Can’t figure out after an extensive Internet search
& I forgot to ask either med oncologist. The surgeon – who was terrific –
didn’t know.My question is: how closely did any of your final Oncotype
numbers track the number from the spreadsheet – what was the margin of error?
This waiting game stinks and I want to prepare for chemo if that’s what is in
store.This is my first post. I want to let you all know how much I
have relied on the advice I have gleaned from all of your postings, from what
kind of bra to wear post-op (yes, the fruit of the loom from walmart website is
the best) to Oncotype info to the amazing positive attitude you all display.
Heartfelt thanks to an amazing group of women. -
Lidzy-Widzy, My actual score was higher than the models predicted by about 3 points. But for me it didn't matter because the "predictor" was coming in at the intermediate zone and I had already decided to do chemo if I was not in the low zone. Where my predictor score failed was that even when I discounted my ER from 300 to 270, that wasn't enough. Oncotype DX uses a different measurement for ER/PR. My pathology was 100% ER and 0% PR. but the Onco said 83% ER....big difference. It is hard for you to know how your pathology translates into the Onco result.
As regards K1-67 (and assuming you are a math geek)...I would look at your Mitotic Index....if it is a 1, I would estimate K167 with 10 or 20.....10 being low and 20 being borderline. If your mitotic index is a 2 or 3, then normally the K167 result is higher.
I know it is hard to wait for these tests....waiting is what we learn to do, sadly. But here's the thing, if chemo is determined to be of benefit to you...then take it on. The alternative is to always wonder if you should have and if you are in good health, you can handle today;s chemo. I did 6 cycles of TC and I did very well. I was able to maintain a normal schedule with the support of my husband. Yes I lost my hair, but so what! Saving my life seemed so much more important.
Much love coming your way, hon.
MsP
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Hi ladies,
My onco score was 21. I am post-menopausal. My recurrence with 5 yrs HT would be 13%. My MO said I would have about a 50% benefit (6-7%), so I decided on chemo. I am otherwise healthy (except for bone loss, which I just found out about). I based my decision on my future and how I would feel if I had a recurrence and didn't do all I could today to try and prevent it. I felt like this was my only chance and I needed to take advantage of it while I could. I am thankful that we have options that others didn't have several years ago. I am anxious to see the results of the clinical trial on intermediates that is supposed to be completed by next yr. As much as I dreaded the chemo, it really wasn't too bad for me as far as side effects. I am going to my first rads appt tomorrow for consult and planning. Then, I will be on HT for five yrs. Right now, I just want my hair to start growing back!
It is really a personal decision and not an easy one. I hope you all get all the information you need to make the right one for you. I am a believer in following your intuition...
Have a good week-end!
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lidzy...I think you need to abandon the spreadsheet. If you read more about the Oncotype DX test, you will see that the two types of measurements cannot be compared. Simply put, the Oncotype DX test was developed because physicians knew many patients were over treated with chemo. The test was developed to determined which patients who might have favorable prognostics could defer chemo. Using genomic testing, the Oncotype DX test came to fruition. What researchers and clinicians discovered was that the current prognostic system, based on grade, size and ER characteristics could not tell them who they could safely say did not need chemo. They found based on genomics that some tumors with favorable grade 1 labels were genetically more aggressive and warranted chemo. Likewise, some grade 3 tumors didn't genetically express the need for chemo.
So, the takeaway message is that the Oncotype DX serves as one tool of many in helping patients and their physicans make the best treatment decision.
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my tumor grade in 2, proliferation rate is intermediate, and my oncotype score is also intermediate....
from my path report, i am highly er/pr + but the oncotype saying i am only 7.9.....very strange.
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I tried to get oncotype test with my .8 cm grade 3 breast cancer and oncologist said chemo would be overkill for me....now I wonder. I also had a 1 cm breast cancer two years prior, KI67 was less than 10% and using that as a "poor man's oncotype" decided not to have chemo. Both small tumors....but still.....I would have liked the oncotype done...asked 3 times (the first time no one heard about it except me I suppose..2011???). I take tamoxifen.perhaps AI for ten years so I can only hope. It pays to bitch for what you want....I am too polite.
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Thank you so much for your responses. I know I really should adandon the spreadsheet and just have to wait for the Oncotype to come in. But it's hard not to fiddle with the tempting spreadsheet tool, especially since the chemo schedule will affect numerous things I have planned since it'll push the radiation out till early summer. Aside from optimistic planning, I just really, really want to know! You all know what I am talking about . . .
I don't know how to identify my mitotic score. The final path report listed just a gross grade of 1. The biopsy showed "Grade 1 (3+1+1)." I wonder if there is an established order in the way the components of the Nottingham grade are displayed. Also, is a Grade 1 that is derived from a "5" worse than a Grade 1 that would come from a "3", I wonder? All speculation, I understand, as I pace and wait :-)
So . . . I just called Genomic Health and Carmen in customer service reports that they got my tissue sample yesterday & that it is in the lab. She gave me an estimbated completion date of next Thursday, Mar 20th! Phew, I think I can hang in there.
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LidzyWidzy,
Put down the Excel sheet and back slowly away from the computer
I speak from recent experience (and my oncotype test was delayed due to insurance and pathology hold ups - I was 8 weeks post surgery when the results came back!).
My reading of your nottingham results - they are the same as mine - total score 5, with 3, 1, 1. The first # is the "tubule formation" - I had a 3 as well, which is typical for lobular cancer - I'm less certain about it's implication for ductal. (So as far as I can tell, ALL ILC's get a 3 on that measure). The other two are measures of "normal-ness" (the second) and mitotic/cell division rate (the third). To me (with ILC), those second two measures are the critical ones - and the mitotic rate which you have is a 1, which is good. And the "normal-ness" score (how different they look from normal cells) is also good.
Again, the oncotype test is a microarray test looking at gene expression, but there is general correlation between traditional pathology and oncotype (though it has the power to unveil oddballs, which is the good thing about it).
My onc was pretty sure I wouldn't need chemo because of the pathology (even though it was a larger tumor) (and despite my anxiety, which was through the roof! Get some Xanax if needed). I had "planned" in advance that my cut off score would be 18 - 18 or higher and I would have done chemo.
My score came back at a 7.
good luck, and best wishes for the wait.
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Lojo --
You're so right! And, while I am back on the computer, it's for information and support, not to get ahead of myself with that spreadsheet. Thanks for the sound advice and the information regarding the different components of the Nottingham grade. My biopsy listed the 3+1+1 breakdown for my grade, but it also reported the presence of LCIS. Ultimately, the pathology report for the lumpectomy (which also reported a Grade 1 - but not the components), did not report any lobular carcinoma, only ductal. So, who knows? Maybe it was 1+1+1. The Oncotype results should tell the full story.
Till then, I will prepare myself for either path, and enjoy the quiet after the surgery and before any other procedure begins. And, be grateful for all of you.
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