Long term "high oncotype test" survivors
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Oncodx is an indicator. My score was 34 and chose not to do chemo. As it turns out my lack of pr receptors and high estrogen 95% and being post menopausal I chose AI drugs. Going on 7 years NED. I also was not grade 3 but barely grade 2. My doctors did recommend chemo but I didn't feel the overwhelming need since my oncodx score was based on tamoxifen not AI drugs and being pr- the tamoxifen is proven not as effective as AI.
It will probably take more time to get the data on AI vs tamoxifen out there. I saw one conclusion dated 2004 very preliminary and another published 2014. The conclusion seeming to be for er+ pr- cancers AI drugs level the outcome the same as er+ pr+ on tamoxifen. Remembering that oncodx only looks at tamoxifen use.
I see many people with oncodx scores in the mid range over 20 jumping at chemo. I could see that if they also had a fast growing cancer. And I see people with low oncodx scores with node involvement not getting chemo.
I think it is a useful tool but also consider other information not just the oncodx number.
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The unfortunate situation for premenopausal women is that an AI cannot be taken. So that choice is off the table....
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You say it is off the table but it is not. You will find more mo's putting people into menopause so the can get the more effective treatment. Check out letrozole.
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Ordinary Beauty, I can empathize! I had just started on AIs when received my oncotype and opted for dd TC, last treatment coming up! Chemo makes me feel like I've done all I can aggressively up front. And, surprisingly, it hasn't been bad. We'll be rooting for you! Best of luck!
Laura
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Well, today is not a good day. I hit a wall of sorrow about my high Ocotype DX score (53) and my chemo plan (dose dense AC*4 +T*4). It turns out I have some infection in my breast reconstruction incisions so that is adding to my funk, as well as my pain. I cancelled our symphony tickets for tonight because I just don't have it in me to get out of my PJs today. Tomorrow, my daughter takes me wig shopping but...........
I'm afraid of chemo and how it will effect my life. I'm usually quite busy with work, social and cultural stuff, hobbies and I'm in the middle of a remodel for which I am acting as the general contractor. The last two days it's all I can do to handle some of the paperwork of life, let alone make the decisions involved in the remodel. It is not like me to get down about anything. I usually figure out what I can do to make things better if I am unhappy with how things are going. I don't know what I can do to fix this though. Sigh..........
On the bright side, I am lucky to have good health care, good support from family and friends, a beautiful home to veg out in, work that I love, a soon to be beautiful remodeled vacation home to veg out in as well and a breast oncologist who has a reputation as being one of the best in the nation.
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Well, I certainly know how an oncodx number can put a cloud overhead. You can look into cold capping, on the local news they just announced Seattle Cancer Care Alliance has installed paxman machines at their infusion sites. Saw a woman who was doing AC and T and her results were pretty good. She avoid the wig.
You can try the chemo and see how it affects you, if it gets too bad you can always stop.
Thinking about you ordinary, this is a hard treatment path but hopefully you will be cancer free a long time.
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Ordinarybeauty - I know how stressful and dreadful chemo is. At my age (68), and having had a heart bypass three years ago, I thought, there’s no way my body can get through chemo. I was told just 4 treatments and thought - well, I can do this. So, I started the treatments as positively as I could. My dose was considered “low”. Well,- I only got through 3 of my 4. Each one was harder to do as my body was showing signs of stress with a backache that I’ve had now 6 weeks post my last treatment. My 3rd one made me really sick. It was actually more my MO’s decision to stop the last treatment, so maybe it was for the best. This isn’t the norm, and I don’t mean to scare you. Many of the women on our November chemo blog have sailed through harder treatments and chemo regimens very well. You will have side effects that are common, but everyone’s body is different, so it’s this fear of the unknown that bothers all of us. I’m amazed how many younger girls have managed to keep working with their jobs through their treatments. So just stay positive and fight it the best you can. It’s frustrating - no one has time for this crap and it does mess up yourdaily routine of things. We’re all there with you!
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OrdinaryBeauty,
I agree, with Meow and Blair, you can start chemo and the adjust accordingly, based on your individual side effects. They can change your pre/post meds, based on your feedback. Also, Meow, I am aware that you can get put into menopause, to allow for AIs. At that point, you are no longer considered pre-menopausal. Although, the AIs come with their own set of potential side effects. There are no easy answers.
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Also, OrdinaryBeauty, I noticed that you are doing dose dense AC. You can always switch to doing non-dense dose, after you read the studies that compare outcomes, side effects/adverse events etc. associated with either dosing option. My point: There are alternatives that your MO can offer, based on your feedback.
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Thanks for everyone's feedback and support.
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Hope you are feeling better today, Ordinarybeauty. We all have our good days and bad days. For me, a new day is always full of new hope for a better day, in spite of circumstances.
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I'm doing psychologically better today because I went back to work and because of the support from friends, you guys and others. I go to my oncoplastic surgeon to see about the infections in my reconstructed breasts. Putting in the port has been delayed until the infections clear, so I'm uncertain when the chemo will start.
Thanks for the info and encouragement.........
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Barred Owl: The single-gene ER score in the Oncotype report does not typically override the pathologic determination of ER positive status by IHC (although there might be appropriate exceptions). This is because antibody-based IHC methods are considered to be more sensitive.
Thank you! Thank you! My IHC and Oncoscore for ER+ were somewhat different, the oncoscore indicating low ER+, though still within range, but my IHC was 95%. Someone explained to me once why they could be different, but this is the first time someone explained which measure was more important. Since I have been debating taking exemestane in the future (I'm in my 6th year now), this will greatly aid my decision.
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My MO told me the same...staining trumps oncotype report for ER
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Hello everyone -
I had an Oncotype of 19. No chemo. Had a recurrence, large node, left axilla...and this happened on letrozole! They sent my original bx sample for Mammaprint and it came back as high-risk. Go figure.
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Farmerjo - this proves there’s no exact science when it comes to breast cancer. I’ve learned there’s not enough research on so many different variables to this disease. They say this causes it, this prevents it, this cures it, this drug prevents it, you’ll have this percentage and they will have that percentage of recurrence, you should, you shouldn’t and - Bla, bla, bla. How frustrating for you to have such a recurrence. I hope it stays away this time for you.
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farmerjo I am sorry for your recurrence and that you are hanging in there. Blair took the blah blah right out of my mouth! So many variables is an understatement. Those with low oncotype can have a recurrence and those with high can have NED for many years. It's such a crap shoot and we never know what side of the coin flip we will be on. I made the best choice for me to allow me to go on with the least amount of worry possible. Worry will always be there. It's the worry that is all consuming and that ruins everyday that I hope to keep at bay as much as possible. Oncotype 27 on a stage 1 grade 1. Arimidex to follow and will cross that bridge when I get there. Hugs to all
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Hi everyone,
I'm new to this thread. I just got my Oncotype DX score and it is 49, so it looks like I'm headed for some chemo. I'm super pissed because my MO has been telling me for weeks "Don't worry -- your tumor is small -1.6cm - and node negative...you won't need chemo, just AI". My mastectomy was just over four weeks ago and I have been starting to feel pretty good again. I figured the end was in sight, so the news about needing chemo really smacked me down.
What's scary is the only reason the Oncotype test got done at all was because I insisted. My MO didn't think it was necessary.
The bigger mystery for me is: the pathology report said the tumor was ER+/PR-. I even had a second opinion and that came back ER+/PR-.
However, the Oncotype DX says the tumor is ER negative...with an ER score of only 5. So do I keep taking Arimidex? Does this mean the tumor is really triple negative? Or is it just that one part of the tumor is ER+ and another part is ER-, so I need to treat it from both perspectives? Since Oncotype DX scores are validated ONLY for ER+ tumors, does this mean the score is predictive for me? Do I ignore it and just assume I have triple negative cancer?
I'm confused, angry and really unhappy about this whole breast cancer business --and who isn't? Any thoughts on how to interpret these disparate findings?
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What were the percentages on your pathology report. If they differ greatly from the oncodx I would think a mistake was made.
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RimRoc - as you can see in my sigline, my Oncotype also came back as saying I'm really a triple negative.
I had several pathologists look over my tumor samples and while they're seeing some staining, they're saying it's very weak - 3 Allred scale, <10% Fwiw, the pathology society or association or whatever they're called say that the IHC that is done on tumor samples is more precise than Oncotype for hormone receptor status. You definitely want to look at your reports and see how strong the staining & what percentage they were reporting because that will help assess how far off their results were from Oncotype. I'd also ask for a review or a total re-test by another pathologist.As to hormonal therapy, my oncology team has been mulling it for months and at the end, they said they can't make a firm recommendation either way. They say the lower the ER+, the lower the benefit of hormonal treatment and the more you have to start considering the negative side effects. The decision is pretty much being left to me and I'm leaning to saying no. I still have a bit of time to make a decision as I haven't started rads yet.
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Thank you Moth.
On the first path report, it listed ER as positive at 11-50% with weak intensity staining for both biopsy sites in the same breast (I had two masses on the left side).
Progesterone was negative with <1% receptors present.
The original path was evaluated by another pathologist at a research cancer center and their report said "ER weakly positive (15%, 1+)" for one biopsy site. For the other biopsy site they said "Weakly positive (25%, 1+)"
I figure my Allred score is maybe 5 or maybe 4.
The Oncotype DX report says the ER score is 5, so definitely below the 6.5 cut-off and they have disclaimers on every page saying "Oncotype DX RT-PCR analysis of ER expression indicates this specimen is ER negative." and so their statistics cannot be said to be valid for me. My recurrence score is 49.
So like I said on my first entry, I am quite confused. I guess there is some ER sensitivity there but not enough to count on a hormonal therapy being the best strategy for lowering my risk of recurrence. So I get it that my MO wants me to do chemo. I guess the question is should I bother taking Arimidex? I've been on it one week with some occasional hot flashes but nothing all that bothersome. I suppose I could just keep taking it...
thanks for helping me think this through...
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Thank you Meow13. I just posted all the details in a reply to Moth up above...I guess in addition to wondering about the value of armidex, I wonder if the chemo being proposed (taxotere + cytoxan for four cycles) is the right chemo for me...may be I need one of the ones for triple negative? I guess I'll have to ask. And then get a second opinion too!
thanks
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I think the issue with the hormonal therapy is not only the immediate SEs but the longer term ones. I mean is there a point in risking bone loss if it's not actually doing anything to prevent the cancer? I don't know - I'm still struggling with this myself.
fwiw, my Oncotype was 60. But you know what's odd when I see your stats? My ER was apparently much weaker on pathology than yours but I scored 6.0 on the Oncotype scale... So weird. My doctor said that they just don't have much info about people like you & me. We're our own little odd subset.
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I would ask about taxotere, it is the drug most associated with permanent hair loss. Other options might be available.
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RimRoc, I had 100% ER/ 0% PR and an RS of 52. I think another growth factor is driving our cancers and making them so aggressive. If I had not had so many ER, I would have chosen a more aggressive chemo, probably AC+T. I think the rule is that if pathology/histology shows presence of ER, no matter how small, AIs are recommended. Will be interested in hearing what your MO recommends!
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Thanks Moth -- I agree, this is sort of weird. Makes me wonder if some sort of re-testing or testing via a different RNA based test should be done. I'm meeting with my MO this afternoon...I see what she has to say then!
And I sure agree -- why risk a significant adverse SE like bone loss if there's no or little benefit to the medication???
thanks!
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Just based on a quick phone call, my MO said she'd be likely to recommend cytoxan and taxotere...and I am willing to put up with all sorts of misery in the short term but I'm very leery of long term SE like peripheral neuropathy (which I already have, but it's not painful) or permanent chemo brain...sheesh. so hard to figure out! All these agents are so toxic. UGH.
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Well, I met with my MO yesterday and her explanation of the seemingly disparate results is that my cancer is heterogeneous. So parts are ER+ and parts are TN. So treat for both. She did not think any additional testing was worthwhile. She was also totally unapologetic over the fact that she hadn't thought the Oncotype DX report was worth doing at all...not a feel good moment.
Her assessment of recurrence risk was that the actual curves and figures in the Oncotype DX report are NOT valid for me, as my report showed ER negative. But she also thought my risk of recurrence was at least as high as the report indicated (like 32% in ten years) and that chemo would definitely be of benefit. But she said there are no good databases or studies on heterogeneous tumors, so no real way to quantify the likely reduction in recurrence risk. So it's all a crap shoot.
She's recommending taxotere + cytoxan for 4 cycles rather than AC+T on the grounds that the tumor was small (<2cm), the margins were very good, the sentinel lymph node was negative. Had any of those factors been different, she would have recommended AC+T.
She wants me to start NOW...as I am already 5 weeks post surgery. I kind of want a second opinion but cannot get any appointments that fast. Yuck. For what it is worth, she said AC is pretty well tolerated and many/most pts are able to keep working, are only out of commission maybe 2-3 days per cycle. Let's hope so!!!
The other weird news was that she took me off arimidex as I have osteoporosis...only no one ever told me I had osteoporosis...including my GP who ordered the DEXA scan as part of a routine physical back in February. So that's one more thing to follow up on.
So I am wrapping my head around all this today.
I guess I'll go sign up for the August Chemo group...it is really wonderful to be part of this community!
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I think a high Oncotype indicates that chemo will be more effective, so that is one way to look at it.
I am glad someone brought up heterogeneous tumors. This still makes me worry, three+ years out.
My tumor was mixed IDC, ILC, DCIS, grade 3, ki67%, and biopsy showed HER2+, surgical pathology equivocal at one place, negative at another. I also had LVI (focal, seen in lymph vessels. But my Oncotype score was low at 8! (Genomic Health says 3-% of Grade 3's have low scores, and also they don't use LVI in score).
My third opinion oncologist retested HER2 with more cells counted, and got a negative, ordered a retest of the Oncotype and I got the exact same number.
I didn't do Herceptin or chemo, had BMX, no radiation, taking Femara.
For some of us, testing of all kinds is just very complicated and even contradictory.
I still worry about the possibility that part of my tumor was HER2+ though they did test in the ductal area where HER2+ is most likely.
Regardless, I looked at the low score as also meaning chemo would have less effect, have other health issues, and was comfortable avoiding it. The initial diagnosis had led to a wig prescription and I was glad not to fill it.
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RimRoc,
I've not read all of your posts, maybe, but if you start chemo within 60 days, most research shows that your outcomes would not change. So, maybe you have more time for a second opinion. Size of tumor has nothing to do with biological aggressiveness. On the one hand, your MO wants you to start right away, presumably because she feels that your tumor is aggressive and/or heterogenously aggressive. On the other hand, she is not recommending the most aggressive chemo, despite your partially TN tumor, very high oncotype score and grade 3 tumor. I am not a physician, but this is quizzical, which I know you feel as well. So, a second opinion likely would give you more comfort.
Best, to you.
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