I think Oncotype DX is a SCAM!!
Comments
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Peppopat: one can be weakly or positively hormone-receptor positive for either or both estrogen and progesterone. I'm not sure where you heard the adding up to 100% idea. In theory the percentages could add up to anwhere between 0% and 200% but unlikely that many people would fall at the extremes.
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This was interesting info I just found regarding if you were ER+ but PR-
In ER-positive breast cancers, PR-negative tumors are more aggressive than PR-positive cancers. Cui et al stated that the reason for the poor clinical course of PR-negative tumors is unclear. We previously reported that a negative PR in women with an ER-positive breast cancer predicts lymph node invasion independent of other predictors of lymph node invasion especially in younger women.4
Source: Journal of Clinical Oncology
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Agree with SusansGarden. I am 100%ER+ and 70% PR+. Clearly the numbers don't need to equal 100%,
Caryn -
From what my MO said the good news is that I am highly positive for the ER 100%.
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one can be weakly or positively hormone-receptor positive for either or both estrogen and progesterone. I'm not sure where you heard the adding up to 100% idea.
Got it,, thanks. THe Peppo.
Bronx Girl, your numbers look great, what was your Onco score?
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ingoodcompany ~ I would agree with your MO.
Hey... aren't you my GH neighbor? I need to call you!!!
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Voracious, a huge THANK YOU for posting these links. I just got my score yesterday. It's 18. I plan to read everything I can get my hands on before making a decision.
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Can someone help me understand these ER/PR percentages? On my oncotype paperwork the ER score says 8.1 and the PR score says 7.7... But I don't see anything about percentages as you all have mentioned. ??
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Can someone help me understand these ER/PR percentages? On my oncotype paperwork the ER score says 8.1 and the PR score says 7.7... But I don't see anything about percentages as you all have mentioned. ??
The short answer is you won't get GH to help you do a conversion into percentages. This is just another stellar example of why I think it's a scam!!
BTW, what was your total score and recurrence %? Looks like you did better than me if you believe in the GH way--I don't.
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My overall onco score was 18, with recurrence rate of 11% with tamoxifen only.
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Peppopat -- what is the reason given to you for why you were initially HER2+ and later HER2-? Is it possible you have more than one kind of cancer going on? (I.e. tubular is just one of the types happening?)
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Peppopat -- what is the reason given to you for why you were initially HER2+ and later HER2-?
I was HER2+ on the DCIS portion of my unifocal neoplasm as is most DCIS. At the first biopsy, the invasive tubular portion was barey discernible. It wasn't until I actually had the lupectomy that a decent set of tissue samples could be offered up. When completed, only the invasive portion for typing is considered. It was ITC and as we all know ITC is almost always neg for HER2. ITC is also almost always very ER+. Hope this clears it up.
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Interesting. I was HER2- at biopsy and told I had DCIS. But on first lumpectomy, the larger sample yielded two regrettable facts for me: HER2+ and IDC. I have never heard that DCIS is often HER2+... and that certainly wasn't true in my case.
Thanks for the quick reply.
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I'm really impressed by everyone's knowledge. I live in chicago and the onco score is like the bible here. Absolutely no doubts or questioning and that makes me very, very nervous. How do you bet your life on a new test? So I went to Memorial Sloan Kettering and the oncol there made sense. said it's a new test, could be perfectly accurate but she'd sleep better at night if i had chemo.
so now what? the drs here won't even give me CMF as she suggests. Getting to ny for 6 months is a challenge but the care there is better and I think i might just find a way. They discovered micromets while the U of Chicago said my nodes were clean. they discovered lympho invasions while U of chicago said there was none. Bottom line, second opinions, not on the reports but on the slides and films are essential. But treatment is still a problem when there is this dogmatic belief in the score. I would Love to believe in the score btw. With arrimidex my recurrence score is 8. I'd love to skip chemo. But I dont trust dogmatism and Sloan allows for doubt which makes me trust them. They don't know everything as much as we'd love to think they do. And this is life or death.
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timbuktu- I received my chemo at The Block Center in Evanston. I think you'll find that they will work with you. Good luck. PM me if you want more info.
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With arrimidex my recurrence score is 8. I'd love to skip chemo. But I dont trust dogmatism and Sloan allows for doubt which makes me trust them.
Well. Timbuk, sounds to me like no score would've been acceptable for you to pass on chemo. HOw ridiculous--chemo with a 6? Sheesh!! Yeah just go out and poison yourself with chemo and make yourself happy. You don't need our opinion.
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Re: "Timbuk, sounds to me like no score would've been acceptable for you to pass on chemo. HOw ridiculous--chemo with a 6? Sheesh!! Yeah just go out and poison yourself with chemo and make yourself happy. You don't need our opinion."
peppopat, please do not insult or demean other BCO members. Timbuktu posted a legitimate concern, and you are belittling it -- and her. Also, "our" opinion might well differ from yours.
otter
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Really, Peppopat? I am pretty sure Timbuk is not looking for your expert medical opinion, she is just looking to satisfy her own doubts so that she can sleep at night. She, like the rest of us, already has plenty of medical experts that can guarantee her nothing. Do whatever floats your boat, Timbuk. I did chemo, radiation and am taking tamoxifen ... and I am doing just fine. If it comes back, at least I know that I won't blame myself for not doing everything that was offered to me.
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I am in total agreement with otter. Do not insult or belittle someone for a choice they are making. It might not be your choice or my choice, but it is timbuktu's choice and we are in no position to second guess or put down someone else's decision. bc does not always bring out the best in us but at least let's try to be kind to each other. Caryn
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Timbuktu, thank you for your thoughts. Dogmatism about BC treatement makes me wary, too -- no matter what direction it's coming from.
My oncologist said that in cases of low Oncotype scores, she relies heavily on patient instinct. If you feel like you need chemo with a score of 8, I say go with that and Godspeed, my dear.
I had a score of zero, the only zero my oncologist has ever seen. Three years later, I was diagnosed with bone mets. BUT -- don't jump to conclusions too fast! -- I do not blame the Oncotype, and here's why: first, I had two types of BC (ILC and IDC), and Oncotype only tests one tumor. I had innumerable tumors -- multifocal, multicentric disease. Second, the scores are based on 5 years of Tamox... but I could not take Tamox due to a genetic disorder that puts me at high risk for clots, and I did not want to have an oophorectomy at that time (I did later, right after the mets were found). My onc left it up to me to decide whether I would have chemo. She would have preferred to give me four rounds despite the zero score, because she is super cautious. But my instincts said no.
Were my instincts wrong? You might be shocked to hear that I don't think so. We discovered later that my particular genetic mutation (in case you're curious, I am homozygous for the MTHFR trait) renders some of the most common chemo drugs potentially lethal. So maybe my instincts were spot-on after all... despite the fact that my cancer came back just three years later.
Incidentally, it's the ILC that spread to my bones. I would have to go check, but I suspect the Onco was done on an IDC tumor. In which case, the Oncotype may have been right about the zero for IDC... but just didn't give us a complete picture because both cancers were not tested.
At any rate... It Is What It Is. We can only go forward from here, y'know?
~lulubee
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Hi Timbuktu:
I had a somewhat similar experience to you at MSKCC. I had four oncology consults. The fourth was at MSKCC. I really felt that I was getting the expertise of a whole team there. Because I was node-positive, the onc I met with insisted on chemo. Also, they asked for all my records and I mean ALL to review everything again. So instead of relying on reports as many oncologists do, the reviewed all imaging and pathology slides on which the reports were based. And they found a micromet in a second lymp node which had been missed in the original review. This didn't change my treatment plan but made me realize how thorough they are.
Yes, the Oncotype DX test is new and I do think it's a useful tool for those who are otherwise having a hard time making a decision about chemo. When I was originally diagnosed, the breast surgeon told me that chemo was almost certainly part of my future even without positive nodes. She said cancer cells can be sneaky and get past the lymph nodes without leaving a trace.
I do think that if the cancer cells have already shown their tendency to stray by showing up in the lymph nodes (as in my case), then one can't be certain that they haven't traveled further afield. They will not show up on scans until it's too late.
It would be a shame if you had to go all the way to NY to get your treatment of choice. Could MSKCC suggest somewhere in Chicago? and maybe work with you and the doctors there.
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Lulubee:
Your story is just a reminder that every case is so different and in the end we never have all the information we need to make a decision. But we make the best decision we can based on what we know.
I didn't know that Oncotype only tests one tumor -- do you mean it can only test IDC or that it can only do one at a time and you woud have needed a separate test on the ILC?
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If you have multiple tumors, each tumor would require its own oncotype test.
I had two invasive tumors and had each one tested, with different results. In general, the treatment for multicentric breast cancer is based on the largest tumor. That doesn't make sense to me, as each tumor can have its own biology. My onc agreed with me, in principal, then argued a bit with me when I wanted a onctoype test for my second tumor, as he had never heard of insurance paying for two oncotype tests. I told him to humor me - that I would insist on it before agreeing to chemo. As it turned out the oncotype score for the second and larger tumor was lower than the score for the smaller tumor. I felt comfortable opting out of chemo.
One thing about making decisions, my onc told me some women would have chemo for a one percent reduction in their changes of recurrence. I told him I would not agree to chemo for that small of an inprovement. People's tolerence for risk differ,
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Strongly encourage each person to check the profile and writings of anyone on here to see where exactly they are coming from by clicking on their name before you follow their advice or allow them to shortchange your decision making process. Breast cancer is scary no matter what the person is facing. No one test / one doctor / one treatment has the definitive answer that gives us 100% security that we are cured or will not face some future issue. The tests today are world's apart from 10 years ago. I did surgery / chemo / radiation and don't regret it -- one year out. Having different types of cancer in my family (father's side), I chose to make the best choice given to me. Prayerfully PeppoPat will be at a better place with all that she has faced on the various testing and all too. Don't mock others who are doing their best in this crazy world -- don't set it up as "they" are fooling "us." One would hope each test / each occurrence is that ONE step away from finding a cure for all breast cancer as well as all cancers.
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I, too, have some nagging, gut-level suspicions about this test. I am a Kaiser HMO member so the qualit of care isn't great to begin with... but the MO ordered one after my lumpectomy last year, when I told him I wasn't going to poison my body with chemo, radiation, OR drugs. He called with the score (12) two weeks later and was quite dismissive... basically told me the score and said good-bye. Strange... I received both pathology reports from the biopsy and the lumpectomy without even asking, but I had to call and email Kaiser and ask for the copy of the oncotype report. They would not fax it, only snail mail it, and the photocopies of what I received in the mail left me wondering if this test was just a jumble of comparative data and not a real lab test at all. Plus, the charge for this test never appeared on my Kaiser member account statements. So I sit here almost six months later, wondering about all of it.
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I'm pleased to see three years later the topic of Onco testing is still alive and well. This is perfect opportunity to give you an update on my decision not to do chemo, rads, or the full five years of an estrogen blocker. I would've at least been open to doing the full 5 years of oral therapy but 2.5 years into it I noticed my gall-baldder was acting up so I stopped about 6 months ago. I never had issues like that before and the patch was not available in the US.I am three years out from lumpectomy and doing very well despite a score of 28!!! In two more years I will be considered at the bottom end of the risk curve. Very happy the decision was an informed one and mine alone to make.
Best to all of you whatever you finally decide upon.
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My Dr never suggested Oncotype testing for me. He said in my case, it wouldn't matter as chemo and rads were a foregone conclussion - period, as IBC Stage III. He did say that for some, he would do it as it is another tool to help with TX planning for SOME.
We are each unique and what is 'right' for any of us is not necessarily the correct 'thing' to do for someone else. It's great for you that your choice to do no TX worked out good. That is not true for all - there is no way that IF had I done 'nothing', instead of fighting with everything possible, I could to beat the Monster, that I would be writing this today as I would not have lived almost 5 yrs since DX.
Bottom line is, it is our decision to make PERSONALLY as to what we believe is best for us/what we should do but that does not mean that decision is correct for anyone else. I do think that the Oncotype test can be something useful for some but is not an absolute for all - so it's not a "SCAM".
Again - congratulations on your decision being 'right' for YOU and your DX.
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I am forever and eternally grateful for the Oncotype test, especially knowing now that pathology is not necessarily an exact science but has some "discretion and impression" to it. Initial path put me in a good place - Stage 1 Grade 2, ER+/PR+. Chemo was still an option at that point and was told that Tamoxifen would give me the best benefit. My path lab doesn't do Ki-67 and I never would have thought it important. Oncotype score came back at 42 and changed my PR status to negative, and ER status barely positive, revealing something we never would have known, expected or looked for - Luminal B subtype. I hit that thing with every bit of chemo available, and chose not to take Tamoxifen. I still maintain that this testing is vital and valuable in looking past the "surface" of our cancer today, to telling the genetic story of how our cancer is likely to act in the future - giving us more and better treatment choices.
We all make the choice that us best for us given the information we have. Oncotype can be an important tool in the decision-making process.
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Nancy I agree with you and I'm on the flip side of the coin from you. My oncotype came back with no surprises, everything was the same as my pathology reports but it did save me from chemo. Since I have IDC, in the old days that would have bought me chemo without a doubt. With the oncotype test results my oncologist said no chemo. He said there would only be a 1% to 2% net benefit from the chemo after removing the 3% risk of chemo. I'm very grateful for the oncotype dx test.
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Hi! Just stumbled across these posts and am interested in hearing if anyone had opted not to do chemo based on their Oncotype test, and had a recurrence? I was diagnosed 3 years ago and was ER+ barely PR-, HER2-., no nodes, no family history, tumors were 1,4 and 1.5 cm. My ODx score was a 21. Drs didn't recommend chemo. Then had a MammaPrint test which said I was HIGH risk for recurrence. So glad I had that test run and did the chemo. Worry about those individuals whose Drs say chemo isn't needed when they get an intermediate score, and then have a recurrence down the road.
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