Oncotype score 30, weighing options and confused

etnasgrl · January 2016

My Oncotype score came back at 27 and I opted out of chemo.
My medical oncologist told me that he really doesn't know if the benefits of chemo outweigh the risks for me, since I'm in the intermediate area. Given my age, he would suggest it....but left the decision up to me.

I talked with my husband and some very close friends about it in great length. I did as much research as I could. I weighed all the pros and cons. Finally, I decided to not do chemo.

Why? Chemo scares me to the core. The side effects and risks are very real and they make so nervous. I am open to doing chemo, but ONLY if I know there will be a benefit to subjecting my body to it. My medical oncologist told me it's a gamble either way. Knowing that, I can't do it.
I will do radiation and then meet back up with my medical oncologist to begin Tamoxifen.

I will do whatever I can to reduce my risk of recurrence, so long as I know what I'm doing is actually helpful. Eating better, moving much more, reducing stress as much as possible, taking Tamoxifen....all are proven to be good things that I can do to improve my health.
I'm comfortable with my decision, I have a peace about it and I know it's the right one for me.

I wish you all the best with your decision. It's not easy!

doxie · January 2016

sos1125,

My tumor was 30 on the Oncotype and 95% ER+ and 5% PR+. A little larger than yours. My Ki67, taken from with an excision biopsy, so not impacted by an earlier biopsy, was 40 - rather high. It was grade 2 also. The ER and PR number on the original pathology report and the Oncotype cannot be compared in the way we might like. I was surprised the my ER was a low positive on the Oncotype and PR a rather high negative score. But because of the 30, low PR+% and high Ki67, I thought the Oncotype results reaffirmed the original pathology findings. And that is what I think is important. Tumor samples are heterogenous and there will be differences between the two.

I did chemo because I understood the benefit to be 7%. My MO did not push chemo one way or the other until the Oncotype score came in., but he rushed me into chemo once it did. Another story there.

Hope this helps.

614 · January 2016

Good luck again with such a difficult decision. I wish you the best. I'm glad that the slides were found.

windingshores · January 2016

Glad the slides were found and hope they are being overnighted. You can offer to pay extra. Within Boston they use couriers, so I did not have to deal as much with mailing.

DF uses the B & W pathology. Mine got lost by being returned there as well. When you get second opinions (or third, fourth!) the receiving facility returns them to the original facility before they go on to the next opinion. I did succeed, at the end, in getting my third opinion hospital to send directly to the 4th, given the fact that my window was closing for chemo.

Eventually, since all the facilities did their own pathology, there was an awful lot to coordinate And I made a chart of results and suggestions!!

I guess if you do decide on chemo you can always decide not to if the side effects are bad for you. And again, antihormonals aren't that bad for many. Those who do have problems are more likely to post on here.

Good luck!!

sos1125 · January 2016

Thanks to all for the input. Etnasgrl, chemo also scares me to the core, but will wait and talk to a couple more oncologists.

Exhausted from the terror, thanks again to all.

momand2kids · January 2016

Hi

you have gotten great advice here--- I am responding because I was treated at Farber and there were some differences in my pathology v oncotype. Onc said pathology reports trumps all-- so while the oncotype had me at a very slight PR-, my pathology was PR+. My oncotype was 26 or 27. I had decided that if it was over 18 (which was then considered the high end of low) I would do chemo. My onc agreed--- both she and the surgeon felt that 4 rounds of A/C would be just enough--- and it was not horrible-- but I was also in pretty good health and able to withstand it--- there really have been no lasting issues except for my sometimes fuzzy memory- but that can also be attributed to being 7 years older now..... Hair grew back, thicker than before, and it was pretty thick before, bone density, which was pretty high, is higher.... heart function is fine (A/C can sometimes cause heart issues), overall health is good-but again, no pre-existing conditions or concerns.

In the end, I made the decision that would allow me to sleep at night--- my kids were 7 and 12 at the time and I knew I wanted to be around for as long as possible. I think the suggestion for a lighter, non-taxane chemo is a good one. Those taxanes can be tough on the body. You will come to the right decision for you in time- good to figure it all out now. I don't regret my decision, but I know there are others with my score who skipped chemo. Everyone's tolerance for risk is different.

Best of luck

windingshores · January 2016

That's funny, my oncologist at DF said Oncotype trumped pathology and so did the tumor board.

And 18 was my mental cut off for chemo too.

etnasgrl · January 2016

Both my surgical oncologist and medical oncologist told me that the pathology report trumps the Oncotype.

Sure wish these doctors could agree....it makes things confusing!

BarredOwl · January 2016

Please correct me if I am wrong, but I think momand2kids and etnasgrl's oncologists were expressing their views on differences between the oncotype individual ER Score or PR Score on the one hand, and the results from pathology about ER and PR status on the other. These may not be the same, and are determined using different methods.

As discussed in more detail above and stated very succinctly by Doxie: "The ER and PR number on the original pathology report and the Oncotype cannot be compared in the way we might like."

They were not saying that pathology trumps the multi-gene Recurrence Score.

BarredOwl

etnasgrl · January 2016

That's correct!

windingshores · January 2016

Thanks Barred Owl. That was making me nervous

Jojo0529 · January 2016

I think the er/pr is lower on everyone's onco report. It appears to be reported differently than the original path reports. I was moderately positive for er/or on oncotype. Path report was 70%er and 80%pr.

Jojo0529 · January 2016

The chemo was definitely not as bad as you imagine. I did 4 rounds of T/C. A little tired... For a few days after. Hair loss, but on a positive note, my legs have never been smoother😜. my onco was 17, I may have done chemo for nothing, but you never know. I also had neulasta shots after each chemo session to boost my immune system. you will make the best choice, but chemo was not even close to how bad I thought it would be. The flu is worse. Stomach virus is worse. Strep throat is worse. Just trying to give you a perspective

Sjacobs146 · January 2016

my Oncotype score was only 23, but my age (48) and the positive node pushed me over to chemo. If it weren't for the positive node, my MO would not have recommended chemo for me. I did chemo-lite, Taxotere and Cytoxan. She did not recommend Adriamycin due to risk of leukemia.

Frankly, if I were 58 and node negative, I'd have skipped chemo.

sos1125 · January 2016

My D-F oncologist said there's a range of opinions on the value of chemo for patients in a "gray area" within the medical oncology group there. She said some in the group would definitely advise me to get the chemo. She didn't seem to be explicitly steering me one way or the other, but I had the sense she doesn't think the 2-3% benefit she calculated was worth the risk. I asked her which ER score she used in the online calculator the Oncotype DX website has, and she told me it was from the pathology report. I have since read that many oncologists feel the pathology results are more accurate for ER and PR status--thanks, BarredOwl, for weighing in and adding some clarity there. I also asked why D-F didn't test my tumor for Ki67 level and she said it's because that test could vary from hour to hour--something like the pathologist could do the test, go to lunch, come back and do it again, and the result would be completely different... So if that's why I scored so high on the Oncotype DX test, not sure I want to use my score of 30 as the major decision-making factor. She said she often doesn't order Oncotype DX "for tumors like mine" (I had requested the test) and refused to order the MammaPrint as she said D-F does not feel it's reliable or particularly helpful to patients. I have to say I was kind of ambivalent about requesting that, anyway, after looking at the info. on the MammaPrint website. Seemed crazy that you would be either "low" or "high" risk, somehow it makes sense that there would be a gray area in between those categories, hard as it is to be in the gray area. Would have fought for it if I was sure it would help, but decided in the end to just let that go.

Thanks to all who added more information about their decision-making and how the chemo went. The only health issues I currently have are osteopenia and mild hypothyroidism, and I don't fear the short-term stuff so much, it's what chemo could do in the long term to my brain and organs and nervous system. Hoping the couple of appointments I have this week will cement my decision and let me have peace with it. My situation didn't make it to the D-F tumor board as I believe they don't perceive my case as "challenging" enough, but my case will go to the tumor board at University of Michigan CCC this week, hopefully that will help me with the decision.

Sjacobs146, the chemo you got is what my oncologist at D-F recommended (if I decide on chemo). I'm glad to hear that is "chemo lite," will be interesting to hear what the other oncs I see next week will say. Feeling kind of nauseated just thinking about those appointments, but I am definitely going to make a decision rather than just letting my time to decide run out and being defaulted into a decision.

Thanks again, I really appreciate this board. All my docs knock "the online boards," but I have received a lot of very helpful information and support here, and it's good to bounce stuff off people who have been there and can really understand what you're going through.

windingshores · January 2016

I think this is tough because it seems to me the MD's figure on risk differs from Genomic Health's. The fact that she used the pathology ER/PR on Oncotype's online test for MD's would explain the difference.

But I am surprised because the MD's I ran into in DF followed the Oncotype seemingly without question, even when pathology results conflicted. And so did the tumor board.

In fact, that's the main reason I pursued so many opinions. I wanted to hear the opinion of someone who had a more old-fashioned approach based more on pathology results than Oncotype.

Anyway, the score of 30 is barely intermediate, and that makes it hard. It is right on the edge of high risk.

So you are left choosing to believe the Oncotype score of 30 or your DF MD's risk number based on using the Oncotype site but using ER/PR from pathology.

I am really hoping one of your opinions involves an MD who looks at the big picture and is articulate about these choices. Good luck!

cubbieblue · January 2016

Chemo Lite? I love that! My understanding is that the "easiest" is CMF, and Adriamycin is definitely the toughest. TC is a strong cocktail that would fall somewhere in the middle I guess. It's no picnic but very doable. Not nearly as bad as I expected.

MARIONSGIRL · January 2016

I completed chemo and Neulasta almost 3 weeks ago. The Neulasta was horrible for me. My WBC was very low after each shot. I felt like I had the worst flu each time. My oncotype score was 25 and my medical oncologist recommended the chemo and I trust him completely. Dana Farber is the best in my opinion and I am lucky to have them treating me. I start radiation in a few weeks. Then hormone therapy. I'm 64 and look forward to my hair growing back!

BarredOwl · January 2016

Hi sos:

I am glad they found your slides!

Be sure to add questions about the on-line calculator tools for your next consultations. You may want to ask: Do they use these particular on-line tools? If so, what are the inputs? If not, why not?

You mention: "I also asked why D-F didn't test my tumor for Ki67 level and she said it's because that test could vary from hour to hour--something like the pathologist could do the test, go to lunch, come back and do it again, and the result would be completely different... So if that's why I scored so high on the Oncotype DX test, not sure I want to use my score of 30 as the major decision-making factor."

Please also ask about this in your next consultation.

The levels of the test molecule ("analyte") are not going up and down, because the tissue is "fixed" with formalin. She seems to be suggesting that there are methodological problems with reproducibility of the test used by pathologists. I do not think that type of problem with the test used by pathologists undermines the validity of the Ki-67 component of the Oncotype text. The molecule analyzed is different ("analyte" is protein vs mRNA) and the methods are different (pathologist assessment of staining of fixed tissue vs quantitative RT-PCR to measure mRNA levels from fixed tissue).

The authors of this paper (cited solely for the method information) report on work to develop a more objective test and discuss some of the methodological limitations of the pathology tests such as "interobserver variability", which can result in different test results when different pathologists examine the same sample, or even when the same pathologist repeats the test after lunch:

http://www.nature.com/labinvest/journal/v94/n1/ful...

"Ki-67, a marker of cell proliferation, is expressed in all phases of the cell cycle, except G0. This protein is localized to the nucleus and its expression is often quantified in terms of percentage of positive nuclei. This is usually a semiquantitative estimate determined by pathologists who count as many as 1000 nuclei to determine this proportion. The threshold for differentiating high and low Ki-67 reported by the literature varies widely from 1% to 28.6%. Another potential source of variability in this measurement is the field of view (FOV) selected by the pathologist for determining Ki-67. It is controversial whether the pathologist should choose hotspot areas or simply count all areas and average."

. . . [Our new] method is most importantly objective, and therefore avoids some of the pitfalls of subjective analysis of percent positive nuclei, including interobserver variability and determination of a cut point between high and low expression. This method also enables efficient analysis of the entire biopsy, removing the subjectivity of hotspot selection. Averaging all FOVs also trended toward a marginally more sensitive and specific assay than considering only the maximum FOV."

In my layperson's opinion, these types of issues with the distinct pathology test do not undermine the accuracy or reproducibility of the Ki-67 component of the Oncotype test (which uses a totally different validated quantitative method to determine Ki-67 mRNA levels), or the established predictive and prognostic value of the Oncotype Recurrence Score.

The above is for information only. Please confirm this matter with your MOs.

BarredOwl

614 · January 2016

Dear Barred Owl:

You offer a wealth of knowledge with your research. Thanks for all of the information.

Sjacobs146 · January 2016

cubbieblue when my MO said "chemo lite" first thing out of my mouth was: "then I won't lose my hair?" Unfortunately, it's not that lite, lol. Honestly, if my doc said you don't need chemo, or the decision was really close, I would have skipped it. The positive node scared the bejeezus out of me. If it got that far, it could have gone farther. I should also mention that at the time of my diagnosis, a dear friend was battling MBC (sadly, she died a few months ago at age 52). I could see with my very eyes what might happen to me.

cubbieblue · January 2016

Sjacobs, so sorry to hear about your friend. I see you and I have similar diagnoses. My positive node status was almost harder to swallow than the cancer diagnosis itself. Surprisingly my MO wasn't ready to recommend chemo until the Mammoprint showed him that there has been a benefit to women like me. I was ready to do everything I could to slay this beast, so bring on the chemo drugs!

614 · January 2016

Sorry about your friend who passed away from MBC.

sos1125 · January 2016

Sjacobs, I'm so sorry about your friend. I also lost a friend to MBC back in 2010. She was NED for 15 years, then cancer was found in her bones and she fought hard for five years, but ultimately lost the battle. I do think of her as I sit here pondering the options. My D-F medical oncologist said, "well, if you choose to forego chemo and ultimately get MBC, you could figure you would have risk with our without chemo, so it could have come back anyway." But that is definitely a hard way to go. My sincere sympathies on your loss.

BarredOwl, thanks so much for the insight into differences in the way Ki67 testing is performed and how these might affect reliability of the results. I really need to clarify with the oncologists how reliable the Oncotype DX Ki67 testing is compared with the figure that's often indicated on the pathology report. I've read most oncologists feel the ER and PR figures on pathology are more accurate, that doesn't mean the same would hold true for all markers. I will definitely be asking for more information about the calculator my current onc uses and which test results are appropriate to use in that. I really appreciate the help, thanks again.

cookiegal · February 2017

hiya.

This is what helped me. Looking at the graphs that came with the report. Seeing the margins of error and the "triangle of benefit" (my term) helped me through an agonizing decision.

High intermediate is tough, but the fact of the matter is that the benefit to all intermediate is sort of a coin flip at this point.

Are you someone who normally does well in medical situation or are you a "side effect magnet" like me.

I will say this, the trend is moving away from chemo for intermediates. I was a 22, back in 09 and I was an outlier. Now I see women with more nodes and higher scores opting out.

GinaDexter1982 · February 2017

My mom is in the same boat you are. She is stage 1A, tumor was 0.8 cm, grade 3, Oncotype was 36, 25% recurrence rate over 10 years with the Tam pill, 10% with chemo and the pill. She's getting a mastectomy in the next two weeks but we will be seeing a second opinion this Tuesday and a specialist in PA late next week. She's leaning towards surgery and the hormone pill. She's 60 years old and she doesn't want the chemo to rip her body up. We have some thinking to do. I wish you the best and you need to do what YOU are comfortable with.

GinaDexter1982 · February 2017

Hi! I just wanted to run this by you and see what you think. My mom is 60. Her Onc Dx score came back at a 36 but her actual ten year recurrance rate came back at 25% without chemo but with hormone therapy and surgery. She has DCIS on top of IDC and her doctor is recommending chemo but he did tell her she has the chance to say no and just do hormone therapy and surgery. The tumor itself was 0.8 cm and on the first patho report it said grade 3 while the second patho report said grade 2. She is highly considering skipping chemo because of all the side affects. She plans to do a second opinion on Tuesday and maybe change doctors because she isn't fond of the one she has now. What are your thoughts?

Loral · February 2017

Gina-It was my choice and I choose to skip radiation and chemo. I had Dcis and Invasive also. No node involvement that made my decision a little easier...Give her time to think. It will be 5 years in September for me since diagnosis and I'm fine no sign of cancer.

Meow13 · February 2017

Gina, my oncodx score was 34, dx at 53 years old. I had mx and AI therapy. I refused chemo and I am 5 years NED.

windingshores · February 2017

Just want to add to this thread (and may be repeating myself) that the customer service folks at Genomic Health are very helpful.

KI67 is not the only measure of proliferation rate used in the Oncotype. There are 5 proliferation genes used.

http://www.nature.com/bjc/journal/v105/n9/full/bjc2011402a.html

Oncotype score 30, weighing options and confused

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