Oncotype Dx for Node Positive
I thought some who post here might be interested in this update.
This test has proven a reliable tool for node positive assessment as well as node negative, and it is now available to more of us. The bad news is that it is not yet covered by insurance--at least not generally--but it can save a lot of doubt, unnecessary treatment, and time that could be spent doing something that actually works.
I took the test because my surgeon referred me to an oncologist who insisted that since I was node positive I HAD to do chemo, and who pushed AC+T at that. I had done enough research to make me wary of Adriamycin for HER2 negative tumors. It works on some, but statistically its rate of success with classic ILC is unimpressive, and there is the cardiac risk as well.
I told my surgeon I wanted another oncologist, and furthermore I wanted to take the newly available Oncotype test. She was quite willing to oblige, and no doubt to her and the second oncologist's astonishment, my recurrence score was a sweet16, and on the graph comparing hormonal treatment alone to hormonal treatment plus chemo for node positives, there was no gain for doing chemo. For higher scores, however, chemo was clearly effective, so it has a place, but not for everyone, some node positives included.
I notice that someone who has posted recently (Sorry, I don't have your name in view.) thinks it is an advantage in Costa Rica to be given copies of your reports. It is a nice gesture, but actually you OWN your reports, and all of your medical records besides. You have bought and paid for them, just as you have paid for your doctors' servides, and you only have to ask (or insist) to get your copy. For the most part they are easy to understand, and make fascinating reading. I learned, for example, that macromastia is doctor speak for "huge boobs."
I'm also keeping copies of the bills, so I will know at the end what it costs to stay alive after being diagnosed with BC. If I manage to keep my breast, I expect it to be worth at least $100,000.
Comments
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I agree with you about getting your reports for yourself. At the beginning of this journey I got a folder with pockets and have kept literally EVERYTHING associated with my cancer in it. I have a green folder for all bills, EOBs, and everything else financial, as well. Each appt I go to I carry along my trusty file folders. I like having all the info at my fingertips.
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Seabee,
that is wonderful that Oncotype is now being used for node positive... challenge your insurance co. as long as it is medically neccessary they should cover it... your oncologist should handle the appeal. I had recently posted that Oncotype is now testing for HER and providing results in report as of september 08.
my FISH was HER+ (2.3) oncotype test done -- similar score of 16-- and a finding of Her-...... with that score if not for the inconsitancy of the Her testing I would have been advised no chemo... however both Oncologists I saw reccommended chemo -- due to size of tumor and the Her issue... they were both concerned that I would opt for no chemo based on the test alone.
Based on my Oncotype score my chemo reccommendation by one Oncologist (the one I ultimately chose for many reasons) was slightly downgraded to Taxatere , cytoxin (every 3 weeks 4x)and herceptin from ACTH which is tougher...
Ironically, the oncologist from Sloan -- stuck with the ACT H
Anyway get another opinion with all your records... keep on doing your research -- Lets see what happens in San Antonio in the next month...
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Emily,
My husband and I also take a small digitial recorder to each meeting with a doctor. It can be very helpful in catching missed details or refreshing a hazy memory.
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Mattscott,
The graphs for node negative and node positive on the Oncotype Dx test are slightly different for a score of 16. For node negatives, a difference of about 2 or 3% shows up between Tam alone and combined therapy, in favor of the latter. A 3% gain might well make it worthwhile to do TC, but I'm not so sure about A.
On the node positive graph, there is absolutelly no difference between treatment with chemo and without chemo for a socre of 16, and this continues through a score of 20 or so. Since both my path report and the Onco test say my tumor is HER2-, I decided not to do TC, but I would have done it had my score been higher.than 20.
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Seabee--macromastia is not a term that has ever shown up on any of my medical records, LOL! I'll have to go through my records and find whatever the clinical opposite of that is, b/c I'm sure it's noted somewhere.
It's very interesting that Oncotype can now be used for node positive and HER2 cancers--thanks for the update.
I, too, have a notebook with all my test and lab results that I tote around with me. I also got a complete copy of my medical records, which I copy off as necessary as I go to new doctors.
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Nash--
I suppose, to be perfectly logical, the opposite term would be micromastia, but I doubt that there ever was a woman whose breasts could only be viewed with a microscope.
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I had the oncotype dx, I can't remember what my score was, will have to dig bag through paperwork but I do remember that I was at the high end of the low risk category. I am a triple negative and took 4 treatments, 3 weeks apart, of Adriamicin and Cytoxen, on my doctors recommendation. I had a Muga prior and it said my heart would withstand the drugs. Ya right, easy for the test to say, huh? lol I've been 4 years cancer free and feel great, hopefully I stay this way, I just turned 46. My Onc told me that even though there are so many chemos out there that unfortunately, it's the old ones that work the best for BC. I put my trust in his hands and agreed to my treatment. Have to believe I made the right decision.
Macromastia is not a term for me either.....I started as a barely A, now I'm a barely A with a big dent in one! hahaha
Just a bit of info., my insurance at the time would not pay for the tests either, they still considered it experimental. I'm guessing they still do by what I've read. If you're Onc cooperates with you and files the proper appeals, whether your insurance pays for it or not, the diagnosis place should write it off.....at least they did with mine, I never had to pay a penny.
Don't think we should have to worry about that crap when battling for our lives but unfortunately, we do.
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Seabee,
I just wanted to stand up and cheer for you when I read your post, and I'll tell you why. I didn't read about Adriamycin being not helpful for HER2-tumors until after I went through treatment back in 2006. When I read the same studies you did, I WAS FURIOUS. I am HER2+, but alll I could think about was the women who were HER2 negative that took this drug. Adriamycin has been used for breast cancer treatment for years, and, granted, we've only known about HER2 since1999, but it irks me that many women are getting toxic, needless therapy that's not helping them. It's so nice to see someone doing her homework and making a smart, evidence-based decision on treatment. I'm guessing that there are still many HER2- women getting a protocol that includes Adriamycin and that needs to change. Your story is a glowing example that we all need to do our homework and be our own best advocates. You go, girl!
Bobbie -
P.S. Love the comment about your records belonging to you. Just another example of the fact that when you have BC (or any serious illness), every healthcare professional you see works for you!
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SpunkyGirl, I thought I did my homework but apparently, not enough. Is that true for just HER2- but postive ER/PR or is that for triple negatives?
I too get copies of my paperwork no matter which doctor, it is my file, not theirs but I've never had an issue with a doctor giving me any of it.
Thanks
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Seabee..thanks for reporting this..
It is about time they did this for node positives..
Eight years ago they didn't even have the ONCOdx test..it is a wonderful tool, I think
It would have helped me that is for sure...
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Diamond--
It's great that you've done so well. At the time you were treated, AC was widely used and probably was the best aggressive chemo available. Since your tumor was ductal and a grade 3, and you are triple negative, AC might still be the most effective treatment, and the risk would be offset by the possible gain.
What we're learning is that breast cancer exists in more subtypes than just ductal and lobular, and that the treatment that is best for one is not necessarily the best for all. Treatments like AC work particularly well on the most aggressive tumors. One would think that they would therefore work for less aggressive tumors, but apparently there are enough biochemical differences between the different subtypes that this doesn't happen. Lobular seems generally resistant to anthracycline chemotherapy, maybe partly because it is usually HER2- and ER+, but there are exceptions that are probably due to the specific genetic makeup of the tumor. I think we still have a lot to learn about this.
I came across a BBC News Report http://news.bbc.co.uk/2/hi/health/6199422.stm
which implicates a gene called FGFR1 in about half of lobular breast cancers. Whether or not this is the breakthrough the report suggests, it is an example of what we may learn thorough genomic analysis.
I can't agree that the old methods are always the best. Some of them still work very well for the kind of cancer they were developed to combat, but one size definitely doesn't fit all in the treatment of breast cancer.
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Seabee, the link didn't work for me. Do you mind cutting/pasting the article?
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Spunky--
Thanks for the encouragement, but I'm just taking the advice of the American Cancer Society, which urges us to be informed and take an active part in deciding on our treatment. ACS also advises us to choose an oncologist carefully, since this is a crucial and often long-term relationship. (Indeed, given some of the chemo regimens prescribed, it could border on interminable.) My surgeon jokingly suggested that I would get a Ph.D. in breast cancer before I finished treatment, but I think my level of involvement has exceeded her expectations.
As my husband says, a doctor is not your boss but your employee. Doctors are expert consultants, but they are not infallible, and you are not bound to follow their advice. I have been burned more than once by trusting doctors when I should have trusted my own reasoning. As a rule they have dozens of other patients who demand their time and attention, and therefore they can't possibly devote as much time to your case as you can, nor do they have the same incentive to get it right. It's your life, not theirs. I'm sure some oncologists would prefer to believe that one regimen is best for every breast cancer, especially the regimen they are used to prescribing. That way they can believe that they have done what's best for thr patient without unduly exerting themselves.
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Nash--
Sorry! I dropped a slash out of the first version of the address. I have corrected this, but the corrected version doesn't work either, so I imagine the article has been replaced.
However, try entering "breakthrough breast centre lobular" in your browser. That will take you to several other reports of this discovery and to the research center's site, where there is also an item on pleomorphic.
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Nash--
Try this one. It's based on the BBC article, which is of course not entirely accurate. Lobular is resistant to treatment but doesn't have an especially poor prognosis.
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Thanks, Seabee, that was really interesting and encouraging. Maybe we'll get our own version of Dr. Slamon/Herceptin to combat the FGFR1.
I'm with ya' on the research/informing oneself. I have never found a doctor who explained things to my satisfaction or to the depth that I wanted them explained, and have always done my own research. Between researching issues for my late Stage IV bc mom, who was on active treatment for 5 1/2 years and myself, I've probably gathered enough knowledge to sit for some sort of breast cancer board exam.
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Well, Nash, I'm convinced that we'll learn how to treat cancer more selectively eventually. I just hope I'm around to see it.
I haven't yet figured out how to access Adjuvant Online. They discourage patients from running it themselves, and of course none of my doctors has offered to do it. How does one handle this situation? I'd like to consider as many assessment methods as possible before deciding absolutely not to do TC.
How up-to-date is it?
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I just registered on Adjuvant Online as "other", after certifying that I was a medical professional. White lie. At any rate, I have used it--have no idea how up-to-date it is, but I would assume it is updated regularly, as I know a lot of oncs who use it. Your onc really should run it for you if you ask. If not, just register and do it yourself--it's another handy tool.
It's all sort of a crap shoot, anyhow. My mom did every chemo in the book, and eventually the cancer took over. It was stronger than any drug out there. I have no idea how aggressive my cancer is, b/c I get conflicting info on it. I have no idea if the CAF I did killed any stray cells, or if there were even any stray cells to kill. I have no idea if the Tamoxifen is doing any good. For all I know I could have done nothing but surgery and been fine. Or maybe I went through all this and it's going to come back anyhow. There are just so many variables that it's impossible to know or predict outcome.
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Hi Nash and Seabee, I just wanted to pop in to say I have had the same thoughts Nash just typed. It's really difficult to accept the apparent randomness of cancer. As much as I hope for a cure, I am in awe of its power and sometimes it's overwhelming.
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I agree that cancer is insidious and unpredictable, but that's partly because we don't fully understand how it works. I can understand how cancer cells get into the lymph nodes, but II don't understand how they get from the lymph nodes into the bloodstream--if they do; or why they aren't attacked by the immune system when they get trapped in the nodes--if they aren't. About all we know is that there's a rough correlation between the extent of node involvement and how advanced the disease is.
I took Nash's hint and ran Adjuvant Online. It is not very up-to-date. They're just now working on an update of the breast cancer program that will incorporate the first (node negative) version of Oncotype DX. The complete and usable version of Adjumant mentions only a limited range of chemo regimens. Taxanes aren't included.
What did interest me is that Adjuvant strongly favored hormone therapy over chemotherapy. However, the first oncologist I met with suggested that chemo was more effective than hormone therapy. In both cases this was expressed in terms of numbers. Both agreed that 56% of women my age with similar tumor size, grade, etc. would survive for ten years with surgery only., and thirty-odd% would die of cancer. The percentages added to survival by chemo or hormone therapy were reversed, however. The oncologist claimed that chemo would save more lives than hormone therapy. Adjuvant indicated that chemo would add only a few percentage points, and was comparatively marginal.
I didn't find anything there to convince me that I would benefit significantly from doing chemo.
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I agree once you have the oncotype the Adjuvant at this point seems outdated... they still have not updated it to include oncotype findings
How many opinions did you seek?? 2 did they both recommend chemo?? Did you contact MD Anderson -- (they seem to be the only institution that looks at lobular with interest...)
My decision was a little easier... based on possible Her2+ status which now 2 different tumor boards have decided that I am probably negative, size of invasive component (which we are similar) my age 49 (damn I was keeping it a secret until the bc rollercoaster began) and the fact that I am a single mom with 2 kids 10 and 12.... So yes I am ready to use the kitchen sink approach -- I did get a downgrade of the treatment to TC H every 3 weeks 4x from the more toxic AC T H
Note that my doctor was very concerned that I would base my decision solely on the oncotype findings... I pesonally think we are not there yet for cases that are not a slam dunk ie size of tumour 2cm or over , node involvement and of course Her2 status....
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I had oncotype DX and was a 16 on one and a 15 on the other ( I had 2 IDC of 5 mm and 9 mm). I also had Grade 1 tumors. But I had 1/2 positive nodes and did not want them to take more nodes. So the oncotype helped change my chemo to CMF from the earlier recommended ones. Two major cancer centers agreed on that. I thought about just going straight to hormonals but I was not convinced that I would be willling to put up with arimidex side effects for 5 years and wanted to take some precaution. From the way I read the charts, it was not that chemo did nothing, it was that hormoals did more at my oncotype and chemo did not add to the hormonals. So far I have had 2 infusions and they are doable but not wonderful. I am hoping that I can get the insurance company to cover the testing since it did affect and change my treatment.
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Mattscot--I totally agree with your statement that it's not possible to make treatment decisions on Oncotype alone. I look at Oncotype as a piece of the puzzle. My score was 18, but my tumor was 2.7 cm, and I was 38 years old with a very, very strong family history of cancer, including a Stage IV bc mom. I had four docs tell me I had to do chemo--the disagreement came in over which regimen.
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Mattscot--
The local oncologists (at least two in the large medical complex where my breast surgeon is located, and one in the university medical center) tend to favor AC+T, and are rather reluctant to consider any other regimen. I've been reading widely and consulting websites, including M.D. Anderson's, so I have a good idea of what the options are. I know there are a number of studies which indicate that anthracyclines generally don't have much effect on lobular and HER2-. Indeed, in one study I found, only 1% the lobular tumors (as opposed of 9%of IDC) achieved a pathological complete response. Therefore, if I did chemo, I would do TC, but I have no reason to believe that it would be any more effective for lobular. I would do it because it seems to be more effective for HER2- and it involves no cardiac risk.
My decision isn't based entirely on the Oncotype DX, but on a number of sources I've read. The Oncotype score just reinforces my perceptions and makes the decision a bit more straightforward for someone in my specific circumstances. If I were younger and didn't have a progressive movement disorder and a history of low WBC, I would probably opt for the kitchen sink approach myself, but just as I'm not about to try out for a triathalon, I'm in no mood to run the gauntlet of chemo, rads, and hormonal therapy if there's a shorter course that looks just as effective and will spare me unnecessary trauma.
I also have some doubts about the wisdom of postponing radiation therapy for more than three months, plus time for recuperation, when I have no assurance that I will benefit significantly from chemo. I don't have a family history of BC, but my mother was diagnosed in 1947. She had a radical unilateral mastectomy and radiation, and lived until 1985, with no recurrence. She didn't die of cancer or of anything related to it. Maybe she was one of the lucky 56% who would survive anyhow, but I believe radiation administered in a timely manner is an effective treatment. Oncologists say chemo should be administered promptly for maximum effect, but the same could be argued for any of the treatments known to benefit cancer patients. Since I have a strong ER+ score of 10.9, the normal adjuvant sequence of chemo, radiation, and hormonal therapy seems to me counter-intuitive in my case.
I wouldn't advise anyone to make a decision of this magnitude based on only one source of information--or even a decision of lesser magnitude. I usually consult at least three sources before deciding what to cook for dinner. ;-)
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Seabee:
You said, "On the node positive graph, there is absolutely no difference between treatment with chemo and without chemo for a socre of 16, and this continues through a score of 20 or so."
My score was 20. I thought I did my homework too but my Oncotype chart showed a very small benefit from chemo which I did, TC. I have since read a study that showes that weekly taxol was more effective for ER+ than TC. I didn't have any insurance issues even though I had a micromet in one sentinel node and had my oncotype test in Aug.
Peeps
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Peeps--
Yes, the graph shows a small benefit at 20---maybe 1 percent. I didn't consider that significant enough to change my mind, but as the curve rises the difference gets more significant. If my score had been 22 instead of 16, I would have been more inclined to do TC.
I don't know about Taxol and E+. Do you have that URL? I did come across a study which found Taxol ineffective against HER2-: http://www.msnbc.msn.com/id/21225760/
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Seabee....You seem like you have done a lot of research. I any more advanced so wasn't given the test so do not know where I stand....maybe a good thing? I wanted to pass on to you a sight I found doing my research. It is being developed at Harvard. I am a math nerd so this sight caught my eye. Thought you might want to look at it...woops lost the sight www...just do a google search for breast cancer mortalitiy....or life math cancer...you will find it...interested in your thoughts...Judy O
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Judy--Yes, I have tinkered with Life Math. It looks slightly more detailed than Adjuvant Online. That is, is lets you select more items and specify more detail. However, if you do comparative graphs, it doesn't actually distinguish between ductal and lobular, at least not for someone my age, so the selection is meaningless. It does deduct over a year from life expectancy for each positive node, which I think is excessive emphasis, though it is no doubt based on some statistics. I have also tinkered more with Adjuvant, which I now see does give chemo more credit for later generation regimens--but not a lot. Adjuvant is also riddled with disclaimers and inconclusive waffling which makes one wonder why they bother with numbers at all.
The thing to keep in mind about these math projections is that they are averages, and most people aren't average. Some people who have breast cancer may live to or beyond the normal life span. Others will relapse and die within a few years. The Oncotype DX score, on the other hand, is based on an individual tissue sample, so the question then becomes one of how reliable their assessment and method of classification are, rahter than whether their findings apply to an individual case.
I don't put much weight on either Adjuvant or LifeMath. To me they are comparable to trying to disarm a nuclear weapon with a blunt instrument.
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Dear Seabee!
I have to say I am reding your posts almost every day since I find them very interesting.But I would like to add some information on these oncotype scores and chemo benefit .I would like you tol know that that regimen TC which showed better disease free and overall survival comparing AC regimen (i do not know the exact name of ste study), there were used not dose dense concetrations of Adriamicin and Taxotere, so when I spoke to our best oncologist DR.Čufer Tanja she said to me we just can not conclude that TC regimen is really better than AC,She also said anthracylines in high dose are really great chemo, but of course here is anoteher question-for which exact tumours of the breast?=I have done really a lot of research since my mother diagnosis and have to say I have a feeling that late relapses in some cancers(actually those cancers are classical lobulars in the majority, ductal grade I cancers,ER,PRpositive,HER-2 negative, node negative or node positive-it really does not matter) are due to not receiving the anthracyclines in the period after the operation-because if we have a look at the mechanism of the cancer-even if it is very small(the size does not matter at all!!!!), some cancer cells are in the cardiovavascular system-so , in the blood, and in ER,PR positive cancers these cells are dormant-.they are sleeping so many years, and then let us say after 15, 20 years they can become clinically evident metastases.BUT as far as the oncotype is avaiable we now understand the biology of these cancers much more better, I believe that even if you have many many cancer cells in the blood, they are there but they will never become clinically evident as metastases if THEY DO NOT HAVE THAT POTENCIAL.METASTATIc process is not so easy as it is maybe believed to be-.it is a very complicated procces.so, if I had had low recurrence score based on the oncotype)because so far it is thebest tool to have insight in the bioloigy of your particular cancer), i would not do the chemotherapy, no matter how many nodes I would have had affected.Because those cells that have spread in the bloodstream have the exactly the same metastatic potencial as the primary tumour.AND I would also add: I have seen many good pathological diagnoses-for example grade I, ER,PR higly positive, HER-2 negative, small tumour which oncotype eas extremely high, on the other hand high grade tumouur that came back as low oncotype scores-.That is because oncotype also looks at your immune (your individual immune genes), and you can never know which genes are more expressed if you do not have this test done.So, please, when considering your best treatment plan, try to focus on this information as well.
My mum also had scores 16, she had 2 nodes positive, the largest one has 2 mm micrometastasis inside and no capsular involvement, so it is a big question, what was the benefit of the chemo, but according to some old articles about lobular carcinoma maybe this chemo saved her life - i hope you understand what I mean.
P.S.:In the future my work is to be why lobular carcinoma does not have much better prognosis than average ductal(or maybe it has-I believe it has!!), according to its quite good biological criteria-but here we have to look at every particular case.-so do not look only at the type of the cancer but the whole pathologic exam-i THINK THERE IT HAS TO BE something that is some receptor or something else, that is not known yet nowadays, because classical lobular grade I-II, higly ER,PR positive, HER-2 negative, it should have gone better than sometimes it goes, ...
I wish you luck and healthiness.
MATIC FROM SLOVENIA
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