Oncotype dx results and decision
I hope I have found the right forum to mention this on - if not, I apologize. I just returned from the oncologist who gave me the results of the oncotype test which is 29 - the high side of intermediate risk. The doctor seemed to think that chemo would be a good option and explained everything about the treatment thoroughly. However, she also said that being that 29 is on the "cusp", that chemo isn't imperative (if it were, she said, she would say that in no uncertain terms) so I can decide on radiation followed by hormone drugs. I know the decision is mine and there are, of course, on guarantees, but I was just wondering if anyone else has been in this predicament? I guess I am just concerned given the doctor's apparent feeling that chemo would be a good choice. The oncologist has also asked that I do another genetic test (my daughter was diagnosed 4 years ago and there is more cancer in the family), not in order to help with this decision but I guess to find out if I have perhaps given the "gene" to my grandchildren. 
Thanks for being here on this list - I even thought about this list as I was talking to doctor knowing that I could find support here. I really appreciate it.
Comments
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I would go for a second opinion. Based on your profile you had quite a few things in the right breast and it was grade 3.
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You may find some valuable information on the Oncotype website. For example: 70% of wormen with a score of 29 choose chemo (I'm sure on the advice of their doctor.) And this: (taken from website)
However, over the range of intermediate Recurrence Score results, those patients at the higher end of the intermediate range are more likely to derive a benefit.
I had a score of 19 and chose chemo. I was in the gray area as you are. There is not enough information for those of us with an intermediate score which is why it doesn't say you can safely avoid chemo or chemo is likely to benefit.
Have you considered mammoprint?
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I'm another one who chose chemo. My Oncotype score was 23. My MO felt that given my PR- status, which can cause a more aggressive cancer, I would benefit from having chemo. It was a pretty easy decision, actually. I had already done my research and felt like chemo was going to be part of the plan. Had my Oncotype been 29 it would have been a no-brainer.
As for the genetic testing, I wouold go for it. Even if it turns out to be BRCA negative, there are other gene mutations that can cause breast cancer. I turned up negative for the BRCA genes, but positive for PALB2 and Chek2. The PALB2 gene assists the BRCA2 gene; given my horrible family history of breast cancer, my genetics counselor put my risk of BC at 45% or more, squarely in the BRCA2 risk range. My 22 year old daughter also has the same mutations. Her risk is actually higher than mine, 58%. Yikes!
As for your grandchildren, they can only get a gene mutation if their mother or father has the gene mutation. If you have a gene mutation, your children each have a 50% chance of getting it from you. If they are positive, their children also have a 50% chance of getting it from them. If your children are negative for the gene mutation, then their children, your grandchildren, would have a 0 chance of getting the gene mutation because it has to come from their parents, not you. The gene mutation does not skip a generation.
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Thank you so much to those that have replied with such good information and advice. I find this a really, really hard decision. I will take all of what you have suggested and add it to more information and arrive at a decision. Sometimes I feel like my cancer is so "minor" compared to so many others, I hardly think it's worth worrying about. But doctor appointments like yesterday's remind me that I do "have cancer" and need to pay attention to it. I guess it's just hard to wrap my head around this. Thanks again.
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My Oncotype dx score was 30. I chose to do chemo after lots of prayer. The first oncologist was insisting on chemo. The doctor I went to for my second opinion said it was up to me, that I needed to really think about it and I would know the right answer for me. Chemo wasn't fun, but not nearly as bad as I feared it would be.
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talishte, a hard decision, for sure. My onco was 21. My MO was leaving it up to me, but when she mentioned that Tamoxifen does not always metabolize, and may not be effective, that got me off of the fence....and I knew that if I had a recurrence, I would be kicking myself for not going at it with everything I had. Pls don't think it is minor, or compare yourself to others. It is not minor and everyone is different and responds differently to treatments. Do what's best for you. Good luck with your decision!
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I was in kind of a limbo like you. I had 1 positive node, but Oncotype 15. I felt comfortable skipping chemo because the biology of my tumor was slow growing. With your high intermediate score, and grade 3, I would probably lean towards chemo. Has anyone suggested a Mammaprint test? It can help if you have an intermediate score, and it will give you a low or high risk category. But I don't know if it can be used because they might only accept a fresh sample from the surgery. Look into it or ask your doctor if they think it would help.
Also, it's never too late to get a second opinion. Even if it's just to confirm what the first doctor said. I know what you mean about wrapping your head around the diagnosis. Sometimes I can't believe I ever had breast cancer. It all goes by so fast. Please keep us posted on your decision and I wish you good luck going forward.
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Talishte, Hi and I am so sorry that you are faced with these difficult decisions. Ultimately, the decision about all treatments are yours to make, but I really think that our doctors should set forth a clear recommendation based on their experience and training. My oncologist acknowledged that my oncotype score was in the intermediate range, that there isn't a cure for cancer, and no guarantees that surgery, chemo, radiation and/or anti-hormone therapy would prevent a recurrence......but she was unequivocal about recommending chemo for me. As she put it, we know that your cancer isn't a "sissy" (low oncotype), and this could be your shot at a cure. With that advice and the counsel of my husband and grown children, we decided on chemo. If my oncologist had asked me to flip a coin, I would have found a new oncologist. Whatever you do, don't look back on your decisions.
MsP
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My oncotype was 25 .. I didn't hesitate to get chemo - and radiation and hormone therapy.. I would never forgive myself if I didn't get chemo and the cancer came back...
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Talishte, I emphasize with you completely. I was in a similar situation. It's very difficult to decide what to do. You may want to ask your doctor to have a MammaPrint test done (make sure they check to see if your insurance covers it). Here is some info: http://www.breastcancer.org/symptoms/testing/types/tumor-genomic-tests/mammaprint
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HI There,
I just faced a similar decision last week.. My oncotype score was 24 so right in the intermediate, gray area..... My Mo told me that basically having chemo would change the recurrence from 12% to 9%... After careful consideration and discussion with my husband and children I decided to forgo chemo and just do the AI and radiation... My tumor was ER+100%, PR+ 65%. HER2- ... It was Stage 1 Grade 1.. I had no lymph node involvement and surgeon got clean margins . My MO said that the AI and radiation is a reasonable decision.. Instead of focusing on the 12 % chance of recurrence I am thinking positively and saying that there is an 88% chance that it won't come back.
I felt that a 3% difference was not enough to go through chemo... I start the Arimidex tomorrow and will start radiation in a few more weeks...
Good luck!
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My Oncotype score was 30. It took 5 weeks to get the score due to hospital bungling. When my MO got the score he rushed me into chemo. I had decided to do chemo if my score indicated it necessary. I hadn't decided what the treshold was, but my MO didn't suggest not doing it. And 30 was high enough for me.
I did chemo in part because I wanted some safety net if I couldn't do AIs or Tamoxifen. I react weirdly to drugs.
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I've recently received on Oncotype score of 21. I'm gathering opinions from a few oncologists this week and will, hopefully, make my decision at my own MO appointment this Thursday. A pretty good case is going to have to be made for me to go ahead with chemo. It will come down to whether or not the long-term risks are worth the benefit. I have found it interesting reading about the decisions other people make and why.
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Oncotype score 16 here. My MO said even before the test came back she was “90% sure” she wouldn’t recommend chemo due to size, node-neg. status, grade 2 and ER/PR+/HER2- (more strongly PR+ than ER+). The score reinforced her decision, especially in light of my comorbidities (horrible family cardiovascular history, asthma, and allergies to three classes of antibiotics). I also did get genetically tested, as I am Ashkenazi Jewish--despite no family history of any cancers other than basal skin in my maternal grandmother, melanoma (with liver mets) in my paternal half-aunt and esophageal in a paternal aunt. The two with skin cancers were sun worshippers, the one with esophageal a heavy drinker & smoker. My mom did have a 6cm lung nodule at 84 she refused to have biopsied--but she smoked heavily for 50 yrs and succumbed to “cor pulmonale,” or CHF caused by COPD).
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My score was 34, they recommended chemo but I didn't do it.
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Hi Talishite! So sorry for the difficult decision you are facing. I would also recommend having a MammaPrint run. It can be run on the tissue from your sample (they use paraffin embedded now, rarely fresh tissue) and it will give you a definitive HIGH or LOW risk. If your insurance will not cover the cost, call their customer service team who can help you figure out costs. Despite the fact that you have a high intermediate ODX, it is not conclusive. I had a low intermediate, and did chemo based on my MammaPrint HIGH, and have a friend who was an ODX 27 and MammaPrint LOW. Additionally, a study called TailorX sponsored by the Natl Cancer Inst has changed the intermediate threshold to 11-25 to minimize undertreatment of those enrolled in the trial. These criteria would put your 29 in the high range vs high intermediate. It can get confusing, and you want to go into any treatment with the certainty that you're making the best decision for YOU!
Grazy, ask about the MammaPrint test. As I mentioned above, my 21 ODX was HIGH risk of recurrence, despite the similar clinpath factors...ER/PR+ HER2- no nodes, Stage 1A, 1.4cm size. Depending on where you live, some of the doctors will not embrace the MammaPrint, as it is included in but not front page of the guidelines they use for decision making. But as I have also noted, there is a lot more that goes into some of the recommendations. MammaPrint looks at 70 genes which were identified as key by the tumors themselves instead of selected by scientists. This test changed my thinking! Good luck with your decision!
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Oh, the dreaded intermediate level. I was there with a 27 score. My MO recommended chemo and I was all set and then decided to get a second opinion at the National Cancer Institute's designated research center in our state (was about two and a half hours away). I saw the head of the breast cancer program who knew my MO well. She did not recommend chemo due to other factors (tumor size, family history of heart disease, etc.). Still was a hard decision but had good solid information for both recommendations. I went for no chemo and am almost five years NED. The important thing, I think, is having enough information that you are solid in your decision making and don't look back. You'll know you made the best decision with the information that you had at the time.
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Lots of good info here. I won't add my opinion because it's such a personal decision with so many factors. I'll just offer up a big virtual hug and wish you peace in this process.
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Re the statement above:
"Additionally, a study called TailorX run by ODX has reclassified the intermediate range to 11-25 which would put your 29 in the high range. It can get confusing, and you want to go into any treatment with the certainty that you're making the best decision for you!"
Both MammaPrint (MINDACT Trial) and OncotypeDX (TAILORx, RxPONDER Trials) are the subject of on-going clinical validation trials.
Neither the OncotypeDX test nor the MammaPrint test (nor both) can provide "certainty", but can provide information that may be useful in decision-making.
It is my understanding that the MammaPrint FFPE test output does not provide individualized risks. Instead it provides information about the average risk associated with the "high risk" cohort or the average risk associated with the "low risk" cohort. The actual recurrence risk of a specific individual may not be the same as the average risk of their cohort.
I note that the TAILORx trial is not "run by ODX" (Genomic Health, the commercial provider of the OnctoypeDX test). The TAILORx trial is sponsored by the National Cancer Institute (NCI). The trial was initially coordinated by the ECOG and is now coordinated by the ECOG–ACRIN Cancer Research Group:
Trial Sponsor = NCI: https://clinicaltrials.gov/ct2/show/NCT00310180
Trial Coordinator: http://ecog-acrin.org
For the purposes of the TAILORx trial, because patients deemed intermediate risk would be assigned at random to receive either endocrine therapy alone or chemotherapy plus endocrine therapy, the definitions of low, intermediate, and high risk were slightly revised as compared with the standard ranges in use in clinical practice [citations omitted]:
http://www.nejm.org/doi/full/10.1056/NEJMoa1510764...
"To minimize the potential for undertreatment of the participants enrolled in our trial, the recurrence-score ranges used in our study differed from those that were originally defined as low (≤10 in our study vs. <18 in the original definition), intermediate (11 to 25 vs. 18 to 30), and high (≥26 vs. ≥31). The recurrence-score strata derived for the trial were based on prior studies that indicated that the risk of recurrence of breast cancer at a distant site at 10 years after diagnosis and a 5-year course of tamoxifen could be as high as 10% among patients with a score of 11 (point estimate, 7%; 95% confidence interval [CI], 5 to 10) and up to 20% among those with a score of 25 (point estimate, 16%; 95% CI, 13 to 20), indicating a risk that was substantial enough for a recommendation of adjuvant chemotherapy in patients with a score of 11 or higher."
As of this date, we are awaiting TAILORx trial results for the intermediate and high risk groups, so the standard ranges are still in effect (<18; 18 to 30; ≥31). Patients with a Recurrence Score of 26 to 30 should not hesitate to discuss the rationale for the TAILORx trial design with their Medical Oncologists to understand whether and how it should be viewed in the context of their individual situation.
Regarding MammaPrint, we are also awaiting the results of the MINDACT trial.
When in doubt, a second opinion may be very helpful.
BarredOwl
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So what should those of us in the 11-17 cohort do if the data indicate we’re at intermediate rather than low risk? Why is chemo considered ineffective if not done w/in 12 weeks after surgery? And why does TailoRx assess those treated with tamoxifen but NOT AIs, which are more effective in postmenopausal patients?
I refuse to panic at this point. If I do get mets w/in 10 yrs despite rads & AI therapy, I suspect it would have happened anyway, not because I skipped chemo. And at 65 currently, we’re talking about a stage of life during which age-related non-cancer causes of death are possible.
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ChiSandy, I would also be interested in knowing about the timing of chemo, especially if a tumor is slow growing (my surgeon said it's impossible to know how long my tumor was growing but she guessed years). Why wouldn't chemo work months after surgery?
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Hi ChiSandy:
I hope you understand that I did not in any way intend to imply that anyone who has already made their decision should panic. To the contrary, (yet again and because of inaccurate statements by another poster), I expressly stated above that the standard ranges have not changed, because the TAILORx trial is on-going: "so the standard ranges are still in effect (<18; 18 to 30; ≥31)." The best anyone can do is to make an informed decision based on the evidence available at the time, in consultation with their medical oncologist.
Regarding your questions, the only one I know the answer to is that the TAILORx trial is not limited to tamoxifen. From the protocol, it appears that in all arms receiving endocrine therapy, patients will receive "hormonal therapy of the treating physician's choice". The recent 2015 publication shows that a variety of approaches to endocrine therapy were used in the low risk cohort:
"In the low-risk cohort of 1626 patients, endocrine therapy included an aromatase inhibitor in 963 patients (59%), tamoxifen in 560 (34%), sequential tamoxifen followed by aromatase-inhibitor therapy in 13 (1%), ovarian-function suppression in 44 (3%), or other or unknown therapy in 46 (3%)."
BarredOwl
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Thanks for the clarification, BarredOwl. I guess I was getting the TailoRx criteria mixed up with Genomic Health's stats that measured chemo alone, chemo + tamoxifen, and tamoxifen alone--not AIs--in computing the predictive values of OncotypeDX scores. AIs have been around a long time--for instance, Femara has been the “third generation” AI for over 10 years, so I’m wondering why Genomic Health didn’t factor them in. (Other online tools have).
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Hi ChiSandy:
I think the focus on tamoxifen of the existing on-line tools may reflect the fact that the initial validation trials were not fully prospective, but were retrospective-prospective in nature. In order to have long-term recurrence information to correlate with Oncotype Recurrence Scores, it was necessary to use archived tissue samples from relatively old trials. So they ran the new test on older archived tissue samples, where patient outcomes were available from long-term follow-up.
The selection of trials for this purpose was subject to availability of archived tissue samples and adequate patient consents, so they probably didn't have a big selection of trials to choose from, and may have chosen those with maximum follow-up time. In addition, tamoxifen can be used in post- or pre-menopausal patients, which may have been a consideration. Thus, the trials used to initially validate the Oncotype test were National Surgical Adjuvant Breast and Bowel Project (NSABP) trials B-14 and B-20, regarding tamoxifen and chemotherapy. If the calculators from Genomic Health are based on the results of these initial validation studies (which have the longer-term data), then it would reflect the endocrine therapy used in those studies (i.e., tamoxifen).
They have since looked at AIs as well. See e.g.:
"Prediction of Risk of Distant Recurrence Using the 21-Gene Recurrence Score in Node-Negative and Node-Positive Postmenopausal Patients With Breast Cancer Treated With Anastrozole or Tamoxifen: A TransATAC Study"
http://jco.ascopubs.org/content/28/11/1829.long
BarredOwl
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I think it should also be noted that the recurrence rate in the TailorRx study for those with RS of 1-10 was lower than they had anticipated-less than 1% had a recurrence. While that doesn't necessarily mean those in what they are using as the intermediate category for this study will also have lower than expected rates of recurrence, it certainly does raise that possibility. Personally, I think if any official changes in stratification come from this study, it will be to include more numbers in the low range, not fewer. Given the very low rate in the 1-10 group, I find it highly unlikely that those in say the 11-20 group will have a higher than expected recurrence rate.
The German study looked at women with RS =/< 11 who had otherwise unfavorable characteristics, such as positive nodes, higher grade. That study showed these women with low oncotype scores, but unfavorable tumor traits, who were treated with anti-hormonal therapy had a recurrence rate of less than 5%. Good news for people like me whose doctors decided the low oncotype score trumped a positive node and so were not offered chemo. I assume my doctors had some good evidence for their recommendation of no chemo for me over a year ago, but this study does help to confirm the wisdom of their recommendation. .
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My oncologists (first opinion and second opinion at Dana-Farber in Boston) gave me the 12 week guideline for when chemo has to start after surgery.
I remember it all too well as I was really pushing the "deadline" due to my difficultly in deciding whether or not to do chemo. Once I decided, I dropped everything and took the next appointment available to put me as close to the surgery date as possible since both of them had stressed that I needed to start as soon as possible.
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BarredOwl - may I just say thank you, once again for clarifying the confusion about the on-going TailorX study. So much hand wringing is being done without having fully taken into account the logic behind why TailorX chose the lowest segment of the 'low' OncotypeDX scores as the study's low range.
Determination of study methodology and range has more to do with available retrospective data, available samples, patient consent and trial participant safety than it does anything else.
As has been said frequently, please consult your MO (or several MO's) for informed advice on your chemo/no chemo decision. Your MO knows you and your situation and asking questions can settle many fears. (Don't forget to ask questions about the ongoing TailorX study and how it applies to you.)
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As I mentioned above, we were awaiting results of the MINDACT trial regarding MammaPrint. The primary analysis has been recently presented and the findings have been well-received, which is good news:
(1) "Agendia Nets Highest Level Evidence for MammaPrint Use to Predict Breast Cancer Chemotherapy Benefit"
PRINT this one upon first access, because a registration block pops up the next time you view it!
(2) "MammaPrint Shows Which Breast Cancer Patients Can Skip Chemo"
http://www.medscape.com/viewarticle/862194
If you reach the MedScape registration page, but do not wish to register, you can google the title of the article to access the full text without registration.
(3) "MammaPrint Genetic Test Can Reduce Use of Post-surgery Chemotherapy Among Early-stage Breast Cancer Patients"
http://www.aacr.org/Newsroom/Pages/News-Release-Detail.aspx?ItemID=867#.Vxj1l2NllAY
(4) AACR 2016 Meeting Abstract - "Primary analysis of the EORTC 10041/ BIG 3-04 MINDACT study: a prospective, randomized study evaluating the clinical utility of the 70-gene signature (MammaPrint) combined with common clinical-pathological criteria for selection of patients for adjuvant chemotherapy in breast cancer with 0 to 3 positive nodes"
http://www.abstractsonline.com/Plan/SSResults.aspx
Click on the presentation title at left to access the text of the abstract.
Due to the summary nature of these articles and non-specialist authors, be sure to discuss the results and their possible implications with your medical oncologist.
BarredOwl
[EDIT: April 21, 2016: Added items (3) and (4)]
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Hello....Did your MO use the https://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/Resources/ODX-Tools-RSPC.aspx Ocnotype calculator to adjust your risk of recurrance? Did it factor into your decision to have chemo or not? Thank you.
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Dorothy26 - Yes and Yes! After discussing chemo/no chemo with my MO based on my OncotypeDX , MO used the RSPC (Recurrence Score-Pathology-Clinical) Calculator and it showed a lower recurrence risk compared to OncoDX. Just for the record, though, MO had already advised me against chemo before she even ran the RSPC. RSPC confirmed her advice AND my decision not to do chemo.
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