Oncotype or mamoprint or either?
The quick version is: had triple negative in 2017--not enjoyable chemo (but worked), lumpectomy, then radiation. Things were great for 2 1/2 years until a month ago. I was diagnosed with a new primary on the other side:
- ER+ PR+ HER2-
- Was suspected as only .8 cm prior to surgery; 1.1 cm after surgery
- Grade 1 prior; grade 2 after
- Lymph nodes clean (woohoo!)
- Margins clean (another woohoo!)
- Oncotype test to see if chemo may be recommended
- Mammaprint test to see same (but I am in the under 8% recurrence rate that the mamoprint test did not test for)
- Do neither and move on to radiation
The oncotype and mammaprint tests were not mentioned prior to today since the tumor was suspected to be less than 1 cm and only grade 1. Since it was supposedly 1.1 cm and grade 2 (although the oncologist does not know why the pathology lab changed that) after pathology, these two tests are now being discussed. Yet, my risk of recurrence is less than 8%. He's torn as to which and if I should do either at all. Just because we CAN test for something does not always mean we should.
So, I have three decisions, perhaps:
- Should I send the pathology off for testing?
- Which test?
- Would I do chemo if it's high or if it's in the gray area? I know it wouldn't be like the AC/Taxol, but how much should you put a body through for, perhaps, a slightly higher percent of not having a recurrance.
Comments
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honestly, I'd test. I don't have any numbers to back me up but I think having had it twice just increases risk & remember the chemo is to try to prevent metastatic spread, not just a localized recurrence. I hate this decision making part of things - so hard. My case too often fell into categories where my whole team was shrugging and saying they had insufficient data to make a strong recommendation for or against things & I ended just having to make a decision based on what I could live with down the road.
Also, with a recurrence - again, me only, I have no data to back this - I'd want CT of chest, abdomen, brain and nuclear bone scan before deciding on treatment.
best wishes
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I only know about Oncotype but I would definitely get it done. It’s your second DX in less than 3 years. You’ll have a clearer direction after you get your scores back.
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"Yet, my risk of recurrence is less than 8%."
This risk assessment - and I am assuming that it is an estimate of your metastatic risk, not your local recurrence risk - would be based on the pathological features of your cancer, also factoring in your age. What Oncotype or Mammaprint testing would do is analyze the genetic make-up of the tumor itself, to determine the aggressiveness of the cancer and therefore whether your metastatic risk might be higher than the pathology would indicate.
The Oncotype or Mammaprint test might confirm that your risk is low - maybe even less than the 8% - which would be a welcome reassurance that chemo is not beneficial. Or the test might find that the cancer is aggressive and that chemo would provide a risk reduction benefit - and this result could make your decision more complicated depending on the amount of benefit from chemo. At what level of benefit (i.e. amount of metastatic risk reduction) would you do chemo? 2%? 4? Higher? The question therefore is what you would do with the results if chemo is recommended. If you feel that you do not want to put your body through chemo again unless your risk is much higher than 8% and the benefit from chemo is significant, it may not be worth doing the test. But if you would consider doing chemo if the test suggests that it would be at all beneficial based on the biology of the cancer, then do the test. With your pathology - ER+/PR+/HER2- grade 2, small tumor - while you might get a score that comes with a recommendation for chemo, and while it's possible that your risk might be very high and the benefit from chemo very large, it's more likely that if chemo is recommended, your score would indicate a moderate benefit. Take a look at this chart from the TAILORx study that maps recurrence rates against Oncotype scores:
To moth's comment, it would appear that this second diagnosis is a new cancer in the opposite breast, so it is not a recurrence and is not related to your first diagnosis (other than the fact that all of us are higher risk to develop a new primary after we've been diagnosed the first time). As such, this diagnosis will be treated just as any other Stage I cancer - which usually means no CT scans or bome scans.
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Beesie, this was really helpful. Thank you. I'm just starting on this current thinking journey so what you've offered is already a help. Thanks for input from all.
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I got both done! I was an intermediate with Oncotype, so the Mammaprint was the 2nd opinion and it said I was low-risk.. Therefore no chemo! I would highly recommend the mammaprint to all intermediate Oncotypes. The tests are super important.
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JLBinPDX, I wrote my reply quite late at night, and looking at it now, I have a couple of questions for you.
Do you know your ER% and PR%? Those are big factors in the Oncotype score. If you are highly ER+ and PR+, then you probably would not have a high Oncotype score - it's possible of course, but it would be unlikely. On the other hand, if your ER or PR are middle to low, the Oncotype methodology often assesses them to be even lower, and this would drive up the Oncotype score, which means that chemo is more likely to be recommended.
It's a lot more complicated than this, but in simple terms, if the biology of your cancer indicates that it is not overly aggressive and that it will be very responsive to hormone therapy (i.e. it's highly ER and PR positive), then the Oncotype score will be lower and only hormone therapy will be recommended. But if the biology of your cancer indicates that it is aggressive and/or that it may be less receptive to hormone therapy, then the Oncotype score will be higher because chemo will be a more important treatment in reducing recurrence risk. The Oncotype test looks at 21 different genes within the tumor, so obviously it's not just the ER and PR, but the formula does put a lot of weight on ER and PR. For this reason, those who have low ER and/or low PR are unlikely to have low Oncotype scores - intermediate is about as good as it gets.* On the other hand, those who have high ER and high PR start off very favorably in the Oncotype equation, but there can be other factors within the equation that drive the score up.
Another signficant factor is Ki-67. Do you know yours? It's not always provided in pathology reports because it's considered unreliable - my facility does not provide it - but some people do have it noted in their pathology reports and the Oncotype formula factors it in - a high Ki-67 usually translates to a higher Oncotype score, particularly in combination with a lower ER or PR.
Lastly, if you don't mind replying, what is your age? Age isn't included in the Oncotype score, but there is a program provided by Genomic Health (the Oncotype people) that does factor age, tumor size and tumor grade into the equation once the Oncotype score is known. These factors can end up increasing or decreasing the recurrence risk associated with the score, based on these clinical-pathological factors. Age can be significant, in that younger women are more likely to have a recurrence whereas recurrence risk is lower as we get older. Age wouldn't make much of a difference if someone has a particularly large or aggressive cancer, but in your case, with a 1.1cm (smaller than average) grade 2** cancer, being younger than average or older than average likely would drive an increase or decrease in the recurrence risk associated with any Oncotype score.
All of that is about the Oncotype test. I don't know much about the Mammaprint test, although one benefit (maybe) is that there is no intermediate category - the results just tell you if you are low risk or high risk. If you want a simpler decision (chemo yes or no), the Mammoprint will provide this.
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* For example, in the TAILORx study, of the 951 participants who were PR-, only 3% had low Oncotype scores (10 or under), while 54.5% had intermediate scores (11 - 25) and 42.5% had high scores (26 and higher). By comparison, of the 8,564 patients who were PR+, 18% had low scores, 71% had intermediate scores, and only 11% had high scores.
** In the TAILORx study, 17.8% of those with grade 2 tumors had low Oncotype scores, while 71% had intermediate scores while only 11.2% had high scores.
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My MO ordered the MammaPrint test for me at my request, not to determine whether I needed chemo (I don't) but to more precisely determine my risk of recurrence. He knew I was leaning very strongly toward NOT taking tamoxifen and I needed this data point for my decision-making process.
I bring all that up to say MammaPrint offers a little more granularity than Beesie mentions, although it's not super granular. It uses a -1 - 0 - +1 scale with +1 being ultra low risk, and -1 being high risk. My score was higher than I hoped (+0.03), so I did try the tamoxifen.
Here's a screenshot of what that result looks like:
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Bessie--My 1.3 cm tumor was 95%Er/95%Pr and my Onco score was 48! But, also a grade 3, so perhaps that was why my score was so high.
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A couple things: I'll turn 60 next week (fuck!), post menopause. I've never had any health issue; barely colds and once, the flu. No history in family of any cancer as far as we know. Gene testing negative. Great health insurance (unlike my 2017 challenge).
So much to say about all of this. I appreciate your replies Beesie, Lisey, and edj3. I'm getting my numbers from the pathology report (that my OC mentioned yesterday) later today. They all point to little or no need to do either test. He's said that he'd be very surprised it either test pointed to the need--or even slight need--for chemo. But, he's also been surprised a time or two so he's not dismissing it entirely. All of my numbers point to not even needing to test.
But I hadn't considered (nor did he mention) the Oncotype or Mammaprint playing a role in determining the role of a medication. I had triple negative so I've been on no meds since treatment ended in Oct 2017. I, too, am very, very reluctant to take any meds after this; I've never been on medication and will not accept something that lessens my quality of life. I do know, however, that there are about three options and he's knows my position and will change it up if needed.
I hadn't considered doing one test and then, possibly, the other. ED3, why the mammoprint instead of the oncotest? My OC mentioned that the oncotest study took all participants regardless of percentage chance or recurrance whereas the European mammoprint didn't take participants under 8% chance of recurrence. He said I--based on numbers--wouldn't have even been eligible for the mammoprint study.
Enough for now, but thanks ya'll. More to come as I make this decision.
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JLBinPD, my MO doesn't use the Oncotype test, only MammaPrint. That's the only reason.
And take heart, I turned 60 one month ago and I'm still here training for a marathon!
Much like you, I value my quality of life. I started the tamoxifen in September and within 10 days, my heart rate went insanely high within 30 seconds of starting a run (like 176, 189 high). I'd had three new things in my life: radiation, which I couldn't undo (nor would I, honestly); Prolia, which I also couldn't undo as it's a six month shot (nor would I, my pelvis broke from running in 2018, not from a fall so I need this drug and I need it to work); and tamoxifen.
Tamoxifen has a long half life and takes four to six weeks to leave the body. For me, it took the full six weeks but my heart settled back down and I doubt I try tamoxifen again.
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JL, I'm 63. Welcome to the club! edj3, you too!
The point that edj3 made about using the test to determine how much benefit you'll get from endocrine therapy is interesting. The Oncotype test assumes that the patient will be taking either AIs or Tamoxifen, so the recurrence risk figure that you will receive associated with your Oncotype score already has that baked in. But it's easy to do the math to figure out what the risk would be without endocrine therapy. Looking at the chart I posted above, it looks like a 20 score confers approximately a 5% metastatic recurrence risk over the next 9 years, assuming endocrine therapy only. Various studies have established that endocrine therapy reduces metastatic recurrence risk by about one third (a little less for Tamoxifen, a little more for the AIs). This means that if someone with a 20 Oncotype score opted out of both chemo (not recommended anyway for a 20 score for patients over age 50) and endocrine therapy, the recurrence risk would be 7.5% (1/3 reduction of 7.5 = 5). So someone with a 20 score can try endocrine therapy but if the side effects are bad, can decide if taking 9-year metastatic risk down from 7.5% to 5% is worth the side effects.
edj3, thanks for the additional info about the MammaPrint results. That's interesting.
UpstateNYer, yup, grade is probably the big factor driving your high score. Within the TAILORx study, only 17% of the almost 10k participants had a grade 3 tumor, however 40% of those with grade 3 tumors ended up with high scores. It's interesting that grade itself is not included in the Oncotype assessment, but in it's place is a "Proliferation" category that includes Ki-67 and four other genes that we never otherwise hear about on our pathology reports. I'm curious though. Were your high ER and PR percentages from your pathology report or from the Oncotype report? I'm wondering if the Oncotype analysis found your ER and PR percents to be the same as the pathology reading, or lower.
This is the Oncotype formula:
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My inclination would be to get the tests too. My personality is too prefer more information over less (sometimes too much...). But I think that having done chemo before, you may be in actually a better position to use the information from the results in an informed way.
For myself, I think this is how my calculation would go:
a) probably there's get a low result, as predicted. Yes, that makes the test technically useless, but then there's a bit of peace of mind
b) maybe there's a high result. That would mean that chemo had a high chance of being life saving, and for me it would probably make it an simple decision.
c) maybe there's an intermediate result. In that case, I would be no worse off than without the test - not knowing whether chemo would help or hurt.
For me, two out of three possible outcomes would leave me significantly better off, and the third would leave me no worse off.
But I think this comes down to personality too. Like, if you felt like not having the oncotype results, you would be able to go forward feeling confident that you are low risk, then getting an intermediate result could leave you worse off for state of mind.
If you knew 100% for sure though that you would not go through chemo again, no matter how high a score might be, then I think it makes sense to skip the test.
I also think that the score can be useful for making decisions about hormonal meds. For some women, they are like sugar pills. For me, they weren't. Having a number I could attach to the risk of going off them completely definitely helped motivate me try to stay on tamoxifen, and, when it didn't work out, to keep trying for another hormonal option that might. It's not even that my number was that high, it just made things feel a bit more concrete.
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Thanks, y'all. I'm going with the Oncotype test--for no particular reason over the Mammaprint. The bigger decision was to have the test or not. Even though my oncologist is fairly assured that the test will point to no benefit with chemo, the idea that it could help make a decision about meds swayed me even more so. That was a piece that my onc did not mention. All of your reponses have been very helpful to me. Thanks.
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Oncoty[e scores do not always correlate with pathology so I am surprised your oncologist is guessing at results. I had grade 3, high ki57% and LVI but my Oncotype score was 8 with 6% risk if I was on meds, 12% risk if I didn't take them (aromatase inhibitors actually may even lower risk more since Oncotype assumes tamoxifen).
The Oncotype is the only test that gives you an idea of the benefit of chemo.
Have all the tests you need- or want!
At the 5 year mark I am having the Breast Cancer Index and the Prosigna Assay.
The BCI tells whether I benefit from continued meds.
Above all, don't prejudge the experience you will have on meds. Some people do fine, and for many of of us with some side effects, they are manageable.
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I'm not sure what you mean, Windingshores, about my oncologist guessing at an oncotype score. If everything about pathology points to no need for chemo, wouldn't the make him suspect that the Oncotype score would be low and likely not need chemo?
You say the Oncotype test is the only that defines if chemo would help. I thought the mammoprint test was similar and did that as well.
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Bessie,
Both pathology and Onco reports had same ER/PR results. But, something to note with me, for some reason my specimen did not get sent out to be tested for an Onco score for at least 4 weeks post first lumpectomy. I read on another forum that if the specimen does not get sent out right away, it can result in a higher onco score. This was per someone's MO. I guess that I will always wonder about that. Did you ever hear of such a thing?? None of my doctors had an answer for me as to why they waited so long to send it out. While in pre-op, waiting for my 3rd surgery to achieve clear margins, SO came to my room to tell me of that report of my high onco score, immediately phoned my MO, and both agreed that I needed to start chemo asap. So, 3rd surgery was postponed until after chemo was completed. 2019 is a year I want to forget!
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fwiw, I'm biased in favour of oncotype as it literally changed my diagnosis and treatment plan. Originally they thought I was weakly ER+/PR- but Oncotype rated me as triple neg. When they redid the path on tumor samples (rather than the biopsy samples), there was so little very faint ER staining that the pathologist agreed it was essentially neg & the tumor board decided to treat me much more aggressively.
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I was also Grade 2 with a tumor less than 1 cm. I did have one positive lump node but since my cancer was micropapillary that involvement was not diagnostic. I was estrogen and progestin positive and Her2-. My oncologist ordered the mammoprint. It showed that my cancer was basal (as opposed to luminal) which is normally not the case unless you are triple negative. This basal feature is not shown on pathology reports. My oncologist ordered AC/T dose dense chemo because of the mammoprint report. If you do have basal like cancer the hormone blockers like tamoxifen and Letrozole are not effective even though your cancer is hormone positive. I know this is confusing. My point is that if I had not had the Mammoprint I would not have had chemo which is apparently the only treatment for basal like cancer.
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Beesie - I was highly estrogen and progestin positive but Mammoprint showed me as high risk. It also showed that I was basal as opposed to luminal. Pathology reports do not show if the tumor is basal. At least one study indicates that if you are basal even if you are hormone positive the hormone inhibitors do not work and therefore chemo is the only treatment that has a chance to work. My prognosis is just the same as if I were triple negative -- that is my prognosis is not as good as it would otherwise be for IDC with hormone positive aspects. I am so glad I had the test because otherwise I would not have had chemo and would have had worthless AI treatment with all the bad side effects. Polly
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I think I need to clarify my earlier posts.
I said "If you are highly ER+ and PR+, then you probably would not have a high Oncotype score - it's possible of course, but it would be unlikely. On the other hand, if your ER or PR are middle to low, the Oncotype methodology often assesses them to be even lower, and this would drive up the Oncotype score, which means that chemo is more likely to be recommended."
Notice the words "probably", "unlikely", "often", "more likely" "it's possible". There is nothing definitive about what I said. I was talking about what most often happens, but obviously not what always happens. Nothing is black and white in breast cancer and very little is 100% certain. There will always be people who land on the short side of the odds. Even if there is only a 0.1% chance of something happening, someone is going to be that person who is the 1 in 1,000 exception.
Overall in the TAILORx study, of 9,719 participants, 14.3% had a high Oncotype score. A higher proportion of the high score patients had either low or negative PR, low ER or both low ER & PR. A higher proportion of the high score patients had a grade 3 tumor. But of course some high ER, high PR, grade 1 - 2 patients received high scores. But not most.
So yes, there are some women who are highly ER+ and PR+ and not grade 3 who nevertheless receive a high Oncotype score or are found through MammaPrint to have an aggressive cancer. That doesn't invalidate the information provided.
A couple of interesting studies, comparing cancer pathology and Oncotype results:
Breast cancer histopathology is predictive of low-risk Oncotype Dx recurrence score. https://www.ncbi.nlm.nih.gov/pubmed/30230117
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Relationship of histologic grade and histologic subtype with oncotype Dx recurrence score; retrospective review of 863 breast cancer oncotype Dx results. https://www.ncbi.nlm.nih.gov/pubmed/29230662
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Just a very happy, positive update: my Oncotype testing came back and did not recommend chemo--YAY, yippee, hooray!!! I've already been through chemo in 2017 with triple negative and AC/Taxol was not a lot of fun (tolerable and I worked very part time through the whole thing). I was NOT ready for a chemo round for this milder ER+ PR+ HER- bout. On Thursday I got the great news that the Oncotype testing showed that I would not benefit from chemo. I don't have the test results in front of me, just an MO email. So, I started radiation on Thursday. I'm no my way!
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JLBinPDX, So happy for you in getting this goods news. You have already paid your dues with regard to chemo txts for heaven's sake. How many radiation txts will you need? Hoping that goes well for you. Will you take an AI after rads completed? I am doing very well on anastrozole(arimidex). Exercise daily sure helps as well. Best of luck to you. Pat😳
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Yay! Good news!
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Bessie,
I remember you from my previous visit to this board in 2007 , I just got diagnosed with a new primary in the other breast. A lot has changed since then , so many new tests and studies.
I saw you asking one of the posters whether their PR/ER scores were the same on the pathology report as Oncotype. How can I compare them , they seem to user different scales.
So in my case pathology of my biopsy shows > 95% positive, Oncotype test has RR 18 and the following data
The OncotypeDX quantitative Estrogen Receptor score is: 11.6 (with
positive > 6.5).
The OncotypeDX quantitative Progesterone Receptor score is: 4.6
(with positive > 5.5).
The OncotypeDX quantitative Her2 score is: 10.1 (with positive >11.5
and negative < 10.7).I googled around but was not able to correlate ER > 95 and Estrogen Receptor score 11.5 with positive > 6.5).
I haven't had my lumpectomy yet and am considering getting mamprint after it.
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Hi ijl. I don't have an answer for you but wanted to acknowledge what you're going through. I, too, had a second primary in the other breast. I am sorry. I'm sure it was a shock to you as it was to me. Somewhere--not sure if it was here or not--I said that it being a shock means that I was just living my life day to day and not worrying too much about a recurrance. I certainly never even thought about a new primary.
But, some good aspects. I've felt SO much more prepared and able to handle it all this time. My daughter's personal life--and that means mine as well to some extent--is no longer a shit show so my personal life could handle it better this time. I'm learning a lot more this time as I can mentally handle it. We should be VERY well prepared to be mentors if the opportunity should arise. And, this time I didn't have to have chemo so that was a blessing unto itself.
My Oncotype number--25--was higher than my MO or I would have liked, but his explanation of what that really meant was helpful. In comparison to the mammoprint, my stats would not have even put me in the eligible range for the study. The Oncotype research took everyone. When I looked at the percentage calculated rate of reduction if I'd have chemo, it was so small it was almost negligible. My MO did a great job of explaining it all to me so if you don't feel you've gotten that, be sure to ask. Best to you!
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Still waiting for my oncotype score, but ijl's post brought up a question I had about my path report. In my 2 primary tumors, the receptor status was listed as:
DCIS (.8cm) ER+ 91-100% moderate/ PR+ 91-100% strong
ICD (3.0cm) ER+ 91-100% strong/ PR+ 91-100% strong
I see others saying 95%. Any idea what my range and strong vs. moderate means?
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HI JLBinPDX,
We have a lot in common , I will be turning 60 this year as well.
My first occurrence was 12 years ago, I had DCIS but after a mastectomy they found triple negative.
You are right I am more prepared now. I have my BS and PS all lined up.
I don't have an oncologist and need to find one. I guess I can wait till after my lumpectomy for that.
I am interested in mammaprint as I am consider a remote possibility of not having to take tamoxifen if it is low enough. It might be a fantasy but one can dream
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only girl - here is a link from BCO that explains hormone receptor percentages - essentially it is a slide of 100 cells, and your percentage number correlates to the number of cells out of 100 that showed a receptor. It appears that your lab generalizes to a range, or the cells were on multiple slides and they showed at least 91 cells, but possibly some showed more. It could also just be how they report. The word strong indicates that the staining intensity of the slide prep was strong.
https://www.breastcancer.org/symptoms/diagnosis/hormone_status/read_results
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Thank you SpecialK
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I received my score this morning: 4!! Hooray. I do not have the report in front of me yet but am anxious to read its details.
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