Oncotype DX Roll Call!

2xBC

This is my first post. I have been struggling for last 2 months trying to figure out what my treatment plan will be.  This is my second dx with BC after a 10 yr cancer free period.  They are not sure if this is a recurrence or second primary.  Recurrence is thought because of close proximity to first site.  New Primiary is suspected because pathology is so different.

I just got Oncotype results back from surgeon and my score was 65.  I have no percentage score just the number.  How do you calculate the %? It seems like a score of 65 is pretty bad given the posts on this thread.

Any thoughts would be helpful.  I am going to an oncologist at Sloan Kettering for a second opinion as the first the first oncologist said I should see only a BC specialist.

Seabee

Otter--I am now puzzled about that graph. If the Oncotype DX score and the corresponding percentage of risk, in Moody's case 25%, represents risk after five years of Tamox, why do we have a curve labeled "Tam" which shows an average recurrence rate of 18%? Just looking at the graph, which may not have been a good idea, I assumed that the Tam curve must be relative to something else besides Tam + Chemo, especially since the percentages did not correspond.

Looking back at the Oncotype report, I see two similar graphs.  On page 1, the graph shows a figure of 25% recurrence for a score of 36. This graph is labeled "prognosis."  The graph on p. 2 is labeled "chemotherapy benefit," and for Tam shows this reduced to 18%. Both claim to represent "average rates of recurrence after ten years" for women who have been treateed with five years of Tam. Logic tells me that the average rate of recurrence after ten years can't be both 25% and 18% for the same group of patients.

So what *is* going on here?

Moody--since you are node negative, your report will have only 3 pages. 

SecretCancer

2xBC -- We're twins.  I was diagnosed in May 08 with IDC, 7mm (<1cm), ER/PR/HER2 positive, Grade 3, negative nodes, negative margins.  My oncotype score was also 65.  To date, other than hearing about you, I haven't seen anyone scoring in the sixties.  My oncologist, who has been practicing for 27 years, said that he's never seen a score that high (keep in mind though that oncotype testing in only a few years old).  Also, as a rule, HER2+ people don't usually get the oncotype test done, because positive HER2 status alone, merits chemo.

 Now, to understand the 65 score...

With scores from 1 through 30, you're risk of recurrance rises with the score, i.e. a 10 score might show a 7% chance of distant recurrance....a 25 score might show a 15% chance of distant recurrance, etc., etc,.  ALL scores higher than 30 return a recurrance score of 35%.  So...whether your score is 31 or 99....you're recurrance statistic is 35%.  The reason for this is because (now THIS is scary....), there were so few people with scores over 30 that they never had a statisically significant sample size associate with each score over 30 to predict real recurrance percentages.  Because of this, Genome (the makers of the oncotype test), took the AVERAGE recurrance rate of all scores over 30.

 So, in plain english, in people like you and I, with scores in the mid-sixties, our recurrance score  of 35% is probably fairly accurate, since 65 falls midway between 30 and 100 (almost anyway).  According to my oncologist, chemo would reduce that by around 11%, bringing the recurrance rate down to 24%.  Then, adding Herceptin, divide the 24% by 2....bringing the absolute risk to around 12%.

In a nutshell, you're headed for some aggressive chemo.  I, like everyone else here, was hoping to dodge that bullet, but no such luck.  It's over now (the chemo and radiation), and aside from not recognizing myself in the mirror with this atrocious hair-do, I'm really glad I did it.  Best of luck to you and I'm so sorry that you're having to go through this a second time.

Kim

2xBC

Kim,

Thank you so much for responding.  After I had posted I received a call from the first oncologist who gave me results of Oncotype - the surgeon had given them to me two days ago.  BUT he stated that I was now ER and PR negative and that he did not think the Oncotype score was correct.  He stated that I was just within parameter for Her2NU at 11.5%.  So, now I am totall confused.  I have literally gone from no treatment, to hormonal treatment only, to chemo, back to hormonal only etc.  This has been going on for over 2 months!  Have you ever heard of an false score on Oncotype due to tumor size.  The first oncologist called Genome? the makers of test and they told him they could do an accurate reading on a small tumor.  So, he goes ahead and orders test and then says he doesn't agree with results.  I am frustrated and just want to know what the hell my life is going to look like in the next months.  Why is this soooo difficult? 

otter

Seabee, it's the graph on page 1 of the Oncotype report that is used to calculate the 10-year risk of recurrence based on the Oncotype score.  I think we need to forget about the graphs on page 2 as far as calculating recurrence risk.

There is a section halfway down page 1 of the Oncotype report that is labeled "Results".  It shows the Oncotype "Recurrence Score" (which we've been calling the "Oncotype score").

The section beneath the "Results" section is labeled "Clinical Experience: Prognosis for Node Negative, ER-Positive Patients."  The text in that section says, "The Clinical Validation study included female patients with Stage I or II, Node Negative, ER-Positive breast cancer treated with 5 years of tamoxifen....".  That section contains a graph which is  the standard curve used by Genomic Health to convert Oncotype "Recurrence Scores" into the (%) risk of recurrence.  See the label on the vertical axis of the graph?:  "Average Rate of Distant Recurrence at 10 Years after 5 Years of Tamoxifen Treatment."

That means the graph used by Genomic Health to convert someone's Oncotype score into a 10-year risk of distant recurrence is based on results after 5 years of tamoxifen.  The graphs on page 2 of the report (the "Chemotherapy Benefit" graphs) weren't even included in the Oncotype report I received back in March of this year.  I don't know what those graphs are good for, since the study numbers are so small.  I do know that Genomic Health does not calculate or report recurrence risk from the graphs on page 2.

2xBC, Kim is right--there weren't enough women with scores as high as yours to provide valid numbers for the Oncotype standard curve.  The standard curve Genomic Health was using this past year (and the one on their website) cluster and average the recurrence risk for scores above 50, not above 30.  They have enough data to report individual Oncotype results for scores between 30 and 50.  OTOH, as you've heard from your onco, a tumor that is ER- PR- HER2+ probably won't generate an Oncotype score with a reliable recurrence risk, because the assay wasn't tested on ER- tumors.

If your tumor is ER- PR-, and especially if it is HER2- but even if it's weakly HER2+, you will very likely be getting chemo.  Hormonal treatment isn't effective on ER- tumors.

Moody ... sheesh.  I don't know what to say.  AdjuvantOnline is a traditional way to calculate recurrence risk.  I read somewhere that it's used by 75% of oncos.  The results aren't the same as for Oncotype testing, though, because AdjuvantOnline doesn't take HER2 or PR into account and the chemo database is out-of-date.  AdjuvantOnline used to have a section that took Oncotype scores into account, but that's been taken off-line.  There's a newer version (v. 9.0?) that has supposedly been in the works for the past year.  No sign of it, yet.

otter 

2xBC

Otter,

My first pathology came back 5% ER+, PR - HER2NU +.  Now the oncologist is saying after further tests that the ER+ was really a negative, so this whole gig is just so confusing.

Thanks for the info

Seabee

Otter--Yes, I should have read the fine print.  But since a poor excuse is better than none, all I can say is that on my fuzzy copy of the report, not all of the fine print is legible.  I now see that the graph on p. 2 is based on a different patient sample, although they have the same clinical features (node negative, ER+, etc.) as those the first graph represents. That could account for some differences in numbers, but overall the curves look very similar.  My report has a third graph presenting curves for node positives. This graph is based on an even smaller sample of 367 and spans only five years.  However, the percentage of risk remains the same for my recurrence score of 16 on all three graphs.

Unfortunately, my game attempt to make sense out of Moody's numbers has failed. But I notice that Kim has been flashed some numbers that sound somewhat similar--an 11% reduction with chemo, and then the 24% remaining risk cut in half by Herceptin. Where does this stuff come from? An oncologist told me that out of a hundred women with my clinical profile, 56 would survive without further treatment after surgery, 32 would die of cancer, and l2 would die of other causes. Hormonal therapy would reduce the number who died of cancer by 9%--that is, only 23 would die of cancer. Chemo would reduce this mortality by 11%, so that only 21 would die of cancer. And with both hormonal and chemo, only 15 would die of cancer, reducing cancer mortality by 17%. This left we wondering, if chemo saved eleven lives and hormonal 9, why mortality wasn't reduced to12. It also left me wondering how anyone had been able to isolate a group of 100 or more women with exactly my clinical profile and follow them through x number of years in order to record these results. In short, I was skeptical, and decided to work with another oncologist who was less preoccupied with mortality.

P.S. I now know where my onco #1 got those figures. They are rounded off from the figures provided by Adjuvant Online for someone of my age, tumor size, and # of nodes involved. This is preceded by a lot of waffling about the controversies surrounding adjuvant therapy, especially chemo, and a warning that the projections are hypothetical. No kidding!  In the supplemental windows, one finds more disclaimers and hedged bets, as well as as lot of citation of *relative* percent of improvement from first to second to third generation regimens. They often seem to be saying, "Chemo seems to be improving slightly, but we're not sure of that, or of much of anything else." I can hardly wait for the updated genomic model.

marlenet

otter

Thank you for all that info.  You did a great job.  I have a onco score of 25 and decided to have chemo. ( stage 1 early bc/ node- ,er + ,her2-)  After your info i understand it better.  I start the chemo Jan 13 ( t & c ,4 tx, 3 wk rest)  I hope the se are good to me.  NONE!   

moodyk13

lisalachelle, 2xBC, kim1965 & marlenet, first I want to welcome you to the Roll Call, yet, sorry that you are here!  None of us want to be here, but at least we are not alone!  This thread has been so helpful with everyones posts, sharing stats, and other treatment information has been invaluable to me.  I want to thank you guys for joining in.

Second, I must apologize for not getting you guys added sooner!  If I hadnt received a PM from lisa, I might have missed you guys and that is not cool.  I dont know what to say other than I just plain forgot!  I forget lots of things these days due to chemo brain................anyway, I got all of you added to the roll call.

If you dont know your recur % but can get it and either PM me or post it here, I will add that, for the % really helps in understanding all the "pieces of the pie".

otter & seabee I cant thank you two enough for all the research and deciphering you two do for the rest of us.  You guys have been so instrumental in this thread being successful, your knowledge and willingness to help others has absolutely blessed my heart more than you know!  Thank you!!!!!!!

I sincerely pray for everyone here and for those reading, that one day this whole board is vacant because there is no more BC!!!!!

God Bless!

marlenet

Hi moodyk13

my onco score  was 25, recur  16 % without chemo. !  I am only 45 years old so i will have chemo.  That will drop my a lot!!!

moodyk13

Thanks marlenet I added your percentage, thanks for giving it to me!  I understand about the age thing!  I was 41 at diagnosis and turned 42 5 days after my last A/C tx--great BD present!

2xBC

Moody,

Thanks for the post.  I had a score of 65 which Kim stated has a percentage of 35% as anything over 31 gets assigned a percentage RS of 35%.  My case is very confusing with pathology changing.  It looks like now I am ER- PR- and Her2Nu at 11.5% which my first oncologist is saying is a low HER2Nu score.  Is that true?  I cannot find out what my HER2NU value is.  The original path report just states Fish HER2NU = 6.4.  Now the oncologist is saying the Her2Nu value is 11.5%.  I see many who post Her2Nu as positive +++ etc.  Does anyone know how Fish is scored for Her2Nu or has anyone heard of a 11.5% score for Her2NU?  According to oncologist 11.5% is the min. cut off for Her2NU.  So, now I am wondering if I am actually triple negative ER/PR - with low or negative Her2nu.  This stuff is so confusing and I have been jerked around for the last two months without a firm pathology diagnosis or recommeneded treatment plan.  Off to BC specialist oncologist at Sloan Kettering on Monday.  Any input from anyone on this thread would be appreciated.

otter

Seabee, I'm beginning to think Moody never had an Oncotype DX test done.  (Are you reading this, Moody?)

I went back to the original thread she started, and looked at her original post.  This is what it said:

"I keep reading about peoples oncotypeDX score.  My onco didnt give me a score, he gave me a percentage.  After surgery and no other treatment I had  75% survival/25% recurrence.  And after my treatment options I could lower to 92% survival/8% recurrence.

How do I know what my oncotypeDX score is?"

That sounds like "pure" Adjuvant!Online prognostication.  Each treatment option produces a change in the recurrence risk.  The changes are not additive.   There's nothing in there about Oncotype testing.  Moody, have you asked anyone about that, yet?  It's a moot point, at this point, since you've already had chemo; but it would explain the difficulty I've had understanding your percentages.  If you never had an Oncotype test done, I shouldn't have used your 25% recurrence risk to back-calculate an Oncotype score.

Also, Moody, when you subtract the [% recurrence] from 100, the result isn't the "% survival."   It's the "% recurrence-free."  One might assume those women survived, but that's not necessarily true.  They could have had a recurrence later.  Also just because someone has a recurrence, doesn't mean she isn't in the "survivor" group.  Recurrences can be treated, and someone with a recurrence can be in remission ("no evidence of disease") for years afterward.

[I'm in a trouble-making mood today, I guess.]

otter 

moodyk13

2xBC  here is what I know about HER2/neu +, ++, & +++

There are a couple of ways they check for the HER2/neu protein. I will tell you what they used for mine.  1-Ventana Pathway clone 4B5 and FISH. 

They use some kind of chemical on the cancer cells to produce cytoplasmic staining in presence of strong protein overexpression in the cell membrane. Then under a microscope between 300x & 400x look for circumferential staining intensity and pattern.

If there is no membrane staining then Her2 is negative

Faint, partial staining is Her2 1+ which is also negative

Weak, complete staining in >10% is Her2 2+ and is positive

Intense complete staining in >10% is Her 2 3+ and is positve.

I had weak complete staining in 30% of my cancer cells so I am HER2/neu ++

moodyk13

otter I posted this on page 4 but maybe you missed it so I copied and pasted:

"Well see otter all of this seems to be my onco's fault!  He gave me ONE sheet of paper with a graph on it (sure does look EXACTLY like the AdjuvantOnline-graph) BUT he WROTE on the paper "Oncotype DX Assay"  SO, I, not knowing about any of these things 11 months ago, thought that this piece of paper was my Oncotype DX..........

How the heck was I suppose to know, when I never studied up on cancer testing before.....duh....

SOOOOOO I am thinking he , ehm, may have NOT actually sent off for the Oncotype DX?!?!?!?  But I can tell you this, When I go back Tuesday, I will ----ehm, tell him how I want him to give me the Oncotype DX 4 page report that he would have gotten from them..........and see what he says......"

Seabee

Otter--Moody also noticed this resemblance on the "Please Help" thread, on Dec. 28 at 8:35 p.m., p.3 of that thread.  I don't know how to cut and paste someone else's post (if that's possible), so I have to resort to reference.

Either Moody hasn't had the test, or she has one confused oncologist. Or both.

Doctors do bear watching, folks. I once had one get distracted while writing a prescription, and write it for the wrong amount. He was a good doctor, too. And we've all heard stories about operations performed on the wrong side, surgical instruments left inside the patient's body, etc., etc.

Nobody's perfect.

moodyk13

Actually Seabee, I think he "harmlessly" mislead me.  What I mean is, it didnt change my course of treatment, so it didnt "harm" me, but he didnt bank on me finding out he didnt actually send my sample off for the 3000 test.  But guess what?  When I go tuesday, I am taking the piece of paper with me where he wrote "Oncotype DX" on it and tell him I want the other 2 pages and I want to know my "score".........be interesting to see what he says !

kt57

2xBC,

This link has a good explanation of the FISH:

http://www.amp.org/CP/weblinks_files/HER2_Guidelines.pdf

The oncotype dx tests reports it out differently, but has a clear scale that shows you as negative or positive.  

otter

Wow, Kathy, I don't think I've ever seen such a nicely written set of guidelines for HER2 testing and test interpretation.  Thanks!  (And, you're right about the way the HER2 results are presented in the Oncotype DX report.)

Of course, what all this says is there is disagreement among all 3 of the tests, and nobody knows for sure what it all means.  According to the document in the link you gave us, there is no true "gold standard" test for HER2 over-expression.  Some oncos are erring on the side of over-treatment and are giving Herceptin even to women who have "equivocal" HER2 results.

otter 

kt57

otter,

I waited nearly 2 weeks for my FISH rsults, so I had alot of time to study up.  It was finally sent off to the MayoClinic lab, so felt pretty good about the accuracy of results.  When I read the required quality controls in doing a FISH test, it was no wonder my results took so long.

The way I understand it, the three tests for HER2neu, test separate things.  The IHC, the staining test, tells you how much HER2 protein is present in the cancer cells.   The FISH  assesses gene amplification within the HER2 Protein.  From my  Oncotype Dx report, it looks like this HER2 testing is a combination of both IHC(presence/expression) and FISH(gene amplification) and calculated into a scaled score. 

  

  

kira66715

I stumbled onto this thread, and it's the best explanation of the oncogene dx I've seen: I finally got the third page from my surgeon--they kept faxing me the first two pages, which do fax so poorly that you can barely read the recurrence score.

I'm recurrence score=12, 8% risk, I was advised to just take tamoxifen, which I've been on since August.

Due to a lot of factors, I've lost some confidence in my treatment team, and am going for a second opinion at Dana Farber this week--7 months after surgery, but I'm the one who had to tell the oncologist that one of the medications I take interferes with tamoxifen... 

Otter, you never cease to amaze me.

Kira 

moodyk13

kira, welcome to our thread and thanks for sharing your stats with us!  I got you added to the roll call.  Yes, this thread had been very informative, and otter does amaze us!

moodyk13

bump

whippetmom

I feel like I was hit between the running lights today with my second oncology consultation.  She ran the AdjuvantOnline and my recurrance rate came out at 23%.  With hormone therapy, it is reduced to 16% and with combination chemo/hormone therapy, reduced to 12%.  She recommends chemotherapy! I have been sailing along through my bilateral/expanders - looking towards the exchange in March and this is not making me happy.  To get chemo - for only a 4% benefit!  I have severe osteoporosis in my hips [found on bone scan 4 years ago - although I have no symptoms.]  I am on Tamoxifen currently [placed on this prior to surgery by my first onc], but the new onc wants me on Arimidex instead [which can impact my bone loss] and chemo could add further insult in this regard. They are putting in an order for the Oncotype DX.  At this juncture, how many of you would go for chemo for a 4% benefit? Does not my quality of life factor in here?  I would hate to be as crippled by osteoporosis as my mother was - she survived breast cancer without chemo - but was bent over and in pain the last twenty years of her life, due to osteoporosis.  On the graph, I have a greater chance of dying of other causes, than I do dying of breast cancer. 

Thanks for your opinions here!!

Deborah

moodyk13

whippetmom, my adjuvantonline was 25% recur.  Reduced to 15% w/ hormone therapy only, 16% with chemo only, 9% w/ combo of the 2, and 4.5% w/ Herceptin added also.  I chose chemo & Herceptin which will give me 8% recur rate which I can live with.

I personally chose chemo over tamox for many reasons and one was b/c of amount of time of each treament.  Chemo will absolutely eat up you joints.  I have no pain except where I already had joint disease, but comparing my before and after chemo bone scans is scary!

I chose NOT to do tamox b/c of only 4% benefit.  If tamox is working for you, perhaps 4% isnt worth it.  Other women would do it for 2% benefit.

Here is how I looked at it to "justify" not doing tamox for 4% benefit:  4 out of 100 women will relapse for not using tamox.  4 out of 100.  I have a better chance of winning a new car.......

Your doing the right thing!  Take your time, gather your info and remember whatever you choose to do, it is the right decision! 

whippetmom

moody - I am of the mindset that I might very well live a better quality of life with a 12% recurrence risk than I would with an 8% recurrence risk, if it means I have to have chemo to get it.  You made the same choice about that 4% and I appreciate the comment about what your bone scans look like.  I already refuse to ride a bike and I have not gone cross-country skiing since that bone scan which showed severe osteoporosis in both hips.  

Deborah 

moodyk13

whippet, talk with your doc about weight bearing exercise.  Depending on the severity of your osteoporosis, he/she would probably encourage you to ride your bike and go cross-country skiig, plus weight lifting as all these actually strengthen bones.  If they havent already given you exercise guidelines, ask.

I am getting copies of my bones scans and when I do I will be posting them on a website that I have created.  This way you can see the difference!  I am also getting my mammo films and will be adding them to it also. 

All of this is so educational and will help many, many women.

Until I get the pics up, you can still see the website I made.  The web addy is http://www.breastcanswers.com I am adding info to it almost daily. 

swimangel72

Moody I hope you get the official copy of your Oncotype DX. You can find out from your insurance company if your onc actually ordered it - I saw the Explanation of Benefits online with my insurance company (Aetna). I too had to go and ask my onc for my copy.............he kept saying I was a "low" risk and only thanks to breastcancer.org did I have enough information to go back and ask him what my true numbers were and to demand a copy.

It infuriates me now how doctors still act "all-knowing" - even my twenty-year-old daughter's orthopedic doctor said, "her mri shows nothing" - but when I got a copy of the report, it said she has a bulging disk in the cervical area (my daughter had an extremely painful stiff neck - which comes and goes for the past two years - as well as tingling arms and legs), so you can be sure I'll be getting a second radiologist to read the MRI.  I'm sorry to sound so jaded - but after all my trials and tribulations following my bc dx and my surgery - I've become much wiser and no longer trust the "Great and Powerful Oz" - I have seen the "man behind the curtain" and he's only that - a man - who is often so overwhelmed multi-tasking and trying to get big numbers for insurance reimbursements that many details of our care can be accidentally overlooked. Good luck with your quest and thanks Moody for starting this thread!

moodyk13

swimangel,  my onc wasn't even there when I went Tuesday!  I love him, but he is pi$$ing me off.  I have no problem telling him about it either.  He will get an ear full in 2 weeks!

I dont blame you about your daughters MRI.  I HATE when doctors do what her ortho did.  How do they know it is "nothing"?  If they DID know, then he should have put her MRI film up on the light, show you the bulging disc, then explain how it couldn't possibly be the source of her problems.  How hard would that have been to do?????

I make my docs show me every report, picture, film, test results, everything cause I WANT to know!

Unfortunately I believe most of this is because we are women.  Think about it:  Men accept whatever they are told, go on. 

Women don't accept it and lets face it, many of them do over react.  Some women told they have a "bulging" disc would walk around in neck brace strung out on Loratab, take 2 weeks off work, lay in bed with a cold rag on their heads...........you know the type, I bet you know a few women like this. 

People like us say "tell me the deal"........"now fix it, cuz I got things to do!"

The more info I have, the less annoying I am.  My docs have figured that out and give me EVERYTHING!! 

whippetmom

moody - I have been a veddy, veddy bad girl about exercising.  My DH cancelled my gym membership b/c I stopped going two years ago.  He goes six days a week without fail!  I walk the dog daily, and do some floor exercises at home, but nothing like what I should be doing.  After the cancer diagnosis I determined that I would return to the gym.  I was able to do so three weeks ago, but found excuses to do other things.  After today's consultation, I am returning to the gym tomorrow! Of course, my DH was sitting there listening to the oncologist today and he asked her if I should be doing weight bearing exercises [he is like that tattletale pesky brother I am glad I never had!] and, as I was giving him the evil eye, the doctor was agreeing with him - that certain weight bearing exercises would be good for me. 

So I guess it's back to the gym...

Thank you for recommending this.