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Topic: Oncotype Dx and RSCP score 19% to 6%

Forum: Chemotherapy - Before, During, and After —

Regimens, side effects, and support from others going through chemo.

Posted on: Aug 30, 2019 12:14PM

Topogjo wrote:

There are several topics on this page regarding OncoType Scores but I wanted to move this up to get more information and thoughts from other women in a similar situation. Recently I was informed by my MO that I should receive 4 rounds of TC chemo after an unexpected OncoDx came back at 30. When I asked why this number was so high when all of the doctors on my case were certain that this test would be low, the response was “there is no way to answer that question”. With the score of 30 my risk of recurrence was 19% with hormone only and greater than 15% with chemo. Thanks to several women on this site I request the RSPC score. My MO was more than willing to use this tool and immediately incorporated my pathology (age 62, tumor size .6mm, tumor grade 1) which lower my score to 6% with hormone therapy alone. The MO response to this new score was “that changes everything”. It should also be noted that the OncoDx changed my er/pr status to triple negative my pathology had Er at 25%weak and Pr at 40%strong. The MO said that they do not go by the OncoDx for the er/pr status because that is based on a computer model and the pathology is based on actual specialist looking at the cells under a microscope which is more accurate. My MO has left the chemo decision up to me and willl support me either way. My genetic MO strongly encouraged no chemo because the % of benefit is so small. I have the CDH1 gene mutation. This whole process has me questioning the purpose and accuracy of the OncoDx as an effective decision making tool. I am very interested in what others think. Thank you in advance for your responses

Age: 62 Dx 5/15/2019, IDC, Left, <1cm, Stage IA, Grade 1, ER+/PR+, HER2- (FISH) Surgery 7/5/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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Aug 30, 2019 01:03PM - edited Aug 30, 2019 01:05PM by Meow13

My oncodx score was 34, I had 2 tumors one ilc and one idc, grade 2 amd 1, er 95% pr 0%. I was 53 years old and chose not to do chemo my risk was 23% 10 year distant recurrence and that might go down to 12% with chemo then 5 years on tamoxifen. Well I didn't do either chemo or tamoxifen I did 4 years on AI drugs.

I suspect I may have the CDH1 but I don't know, I received very little from my oncodx test. I am 8 years NED. At this point my oncologist believes my risk to be less than 10%.

I think in my case AI drugs may have been more effective I have seen 2 follow on studies from 2004 to 2016 that suggest er+ pr- hazard ratio is nearly cut in half. In this study however most people tended to also have low percentages of er receptors. Mine was 95%.

The problem in the statistical model for me is that relatively fewer people have er+ pr-, there have been theories floating around that it is more aggressive and that pr+ helps stops the growth and mutation of er positive tumors. Other studies that suggest lack of pr receptors indicated that the cancer stopped feeding on estrogen.

There is also indication that er+ pr- behaves more like triple negative, on a positive note recurrences tend to be early with fewer late recurrences.

I wouldn't put too much on oncodx, I would suggest looking at all information gathered.

I would like to see larger database collection including follow up treatment. Our cancers are so different. Throwing the kitchen sink may falsely reassure people "they did everything they could". Just saw a study the other day looking at limiting chemo treatment as to not trigger activation of drug resistant cells.

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Aug 30, 2019 02:35PM DorothyB wrote:

Each one of us, even if our situations look very similar, have unique things that may make us choose or not choose particular treatment. So, my experience, while similar to yours, isn't exactly the same and your choice may not be the same as my choice - and that doesn't make either of us right or wrong. That said, here is my experience:

Diagnosed in April 2019 age 61 IDC in left breast - surgeon told me I would only need lumpectomy and radiation. From the biopsy, I was told grade 2, ER + (in the mid 90s) and PR + (I think in the 60s?). HER2 was not definitive, so FISH was done and came back negative. I was never tested for a gene mutation.

Lumpectomy in June. I opted to visit two different radiation oncologists and two different medical oncologists to pick ones that I was comfortable with. My surgeon would not refer me to red onc or med onc until after post-surgery follow-up visit.

At the follow-up, I was told the size and that I had clear margins of 5 mm. They found both IDC and DCIS. I wasn't given individual sizes of the two types of tumors. The sentinel node was removed and tested - no cancer found there. Grade 2 No Lymphovascular Invasion and classification pT1c(sn)pN0

I visited the first rad onc. She told me that she also believed that I would not need chemo, but she couldn't start radiation until she had ok from med onc. She did not do breath holding or anything else to protect heart from radiation.

Then I visited the first med onc. She said she wanted to run oncotype just in case and it would take two weeks. I got a bit freaked about that because she thought I might need chemo.

While still waiting for results, I had my second rad onc appt. This was at MD Anderson (major cancer center). They re-read the slides from the lumpectomy and found one place next to DCIS that only had 2 mm clear margin, found lymphovascular invasion not found by the first pathologist and changed my grade from 2 to 3. Of course, all of this was quite concerning to me. This rad onc also believed I would not need chemo and was so sure that she said she would run it by their med onc and get his approval to start radiation. I got marked up and did simulation later that week.

The following Monday, I had appt with the second med on in the morning followed by first radiation in the afternoon. At the appt, the med onc was reading the original pathology report and I told him about the re-read and changed results. He almost cancelled radiation, but then said I could go ahead with it and could do chemo after radiation if needed.

Later that week I got a phone call from the first med onc who said my oncotype result was "quite high" and that I needed chemo. Once I got the report, I found that my score was 29 (so very close to your 30). I started digging into the report and what it meant, etc. Since I am also over 60, I normally would have been given one of the aromatose inhibitors but since I have osteoporosis, the med oncs both agreed to start with tamoxifen. My rise of distant recurrence at 9 years with hormone therapy is 18%.

One of the things I found is that the Absolute Chemotherapy Benefit for those over 50 years old is based on a study that lumped all of the patients with scores between 26 and 100 into one pool. While RS scores under 25 were grouped and the benefit measured by group (with increasing benefit as the score increased), this was not done with the scores of 26 and over. Reading page 2 of the results, it actually says "The magnitude of the absolute benefit of chemotherapy was ~ 6% at RS 26, and increased as the RS results increased from 26-100, with an average absolute benefit of ~24% and a conservative group estimate of >15% based on the width of the confidence intervals." So, basically the >15% isn't "real" if my score is 29. A score of 26 had a benefit of about 6%.

I did a lot of praying, reading, etc, etc. I did find this: you can scroll down and click on Node Negative Predictive Clinical Trial Results to got more info also. I also found this: if you click that you are a health care professional, then select node-negative to download the information, you will find a graph that shows the possible range of benefit from chemo based on your RS score.

I opted to NOT do chemo. My 2nd med onc wanted me to do chemo, but said he could understand why I might opt out of chemo based on my score of 29. He was not willing to do the RSPC for me.

Diag. 4/19/2019 ER+ PR+ HER2 neg Lumpectomy 5/29/2019 IDC w/ DICS 2.0 cm Grade 3
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Aug 30, 2019 05:46PM Beesie wrote:

Topogjo, I think the Oncotype RSPC is a game changer, and as I've said before in my posts, it's astonishing to me that every MO doesn't use it in any case where there is something 'outside the average' about the patient or the diagnosis. That would include age (being 10+ years below or above 50), tumor size (very small tumors or very large tumors) or grade (particularly grade 1). Not too many people posting here have received Oncotype RSPC results but in every case I can recall, the results have had an impact on their chemo design. Decisions have either shifted from a "yes" to chemo to a "no" (for those who are older and have small and/or low grade tumors) or from a "no" to chemo to a "yes" (for those who are younger, and have large and/or high grade tumors). In other cases, patients right on the line and uncertain about what to do have been provided with clarity and could much more easily and confidently make their chemo decision.

The problem with Oncotype DX scores and the associated metastatic recurrence risk is that the original studies on which these results were based were not large studies, so if you have a tumor that is significantly different than the 'average', the results that you receive might really not be that applicable to your case. The TAILORx study released last year did have a much larger patient base, but the study provides no information for those with scores of 26 or higher, since a decision was made that everyone in the study with a score above 25 would be given chemo. As a result, those who have scores of 26 or higher still receive 'endocrine therapy only' recurrence information based on the smaller older studies. Also concerning is the fact that to everyone's surprise, TAILORx found that recurrence rates with endocrine therapy alone for scores up to 25 were much lower than expected and therefore the chemo benefit was much less than what had been found in the previous studies. In fact for those over age 50, according to TAILORx there is zero benefit for scores of 25 and below. Yet those (seemingly outdated) previous studies are still being used today to tell patients with scores of 26 and above that they will benefit from chemo.

With all that, I do think there is value to the Oncotype score, but I worry about how much weight is put on it when making treatment decisions. It should be one factor among many that are considered when deciding on chemo. And again, I think the Oncotype RSPC should be used much more often, rather than the generic information provided on the Oncotype report, which doesn't factor in patient age, tumor size or tumor grade.

As for what drives up the score, from looking at the Oncotype formula and reading this board, it's pretty clear that low PR on it's own usually drives scores into the 20s. Add low ER and/or high ki-67, and you start to get scores in the high 20s to low 40s.

Topogjo, one other thing that I don't understand about the Oncotype test is how often we see lower ER and PR than what was reported in the pathology report. Since lower ER and PR drive up the Oncotype score, this discrepancy is concerning. In your case, this difference is critical, because it indicates the effectiveness of endocrine therapy, which would be your only treatment if you pass on chemo. Would it be possible to have your tissue re-analyzed, maybe by a different pathology lab, to confirm the 25% ER / 40% PR? At that level, you would benefit from endocrine therapy, which would provide an alternative to chemo. But if you truly are triple negative, as per the Oncotype findings, that would mean that chemo is your only treatment option. Of course with a very small low grade tumor and only a 6% pre-chemo risk, chemo would still only provide a 2% risk reduction, so you still might decide against chemo, even if you are ER-/PR-.

Not sure if I've just added to the confusion... but questioning the purpose and accuracy of the Oncotype test, particularly for those who have diagnoses that are considerably different than the 'average', is a hot button topic for me.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Sep 17, 2019 05:31PM Topogjo wrote:

Thank you all for your very informative insights. I really appreciate hearing from those in a similar situation. I decided against chemo because I believe the OncoDx performed on my tumor was inaccurate. The fact that it had the tumor go from er/pr+ to triple negative made me realize that the reason for the higher Onco score was the computer model used the triple negative as part of their calculations. The MO and Nurse Oncologists were very adamant that the triple negative was not to be considered through OncoDX because actual human pathologists looked at the tumor through a microscope and examined the tumor cells and counted the percentage er/pr cells which is way more accurate that a computer model. Because of the early dectected, low grade, and small size of the tumor plus 6 doctors told me that I would not need chemo or the OncoDx testing for that matter, it seemed that doing chemo really was over treating my cancer. The only factor indicating chemo was the score which did not include personal data or actual tumor details. My MO said that she believed my chance of distance recurrance was more like 10% or less without the Oncodx score. I really question the accurancy of the Onco score especially when you see women with higher grade large tumors and node involvement getting low scores. It just doesn't make sense to me. Also, I thought it was interesting that the MO had no way to determine why my score was higher than expected based on the results. Now that the decision is made I am still nervious about recurrence but I still think I made the right choice. I hope as time goes by this concern will not be so heavy on my mind.

Age: 62 Dx 5/15/2019, IDC, Left, <1cm, Stage IA, Grade 1, ER+/PR+, HER2- (FISH) Surgery 7/5/2019 Lumpectomy: Left; Lymph node removal: Sentinel
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Sep 17, 2019 10:20PM OnTarget wrote:

I am one of the people who is in a different boat. My Oncotype score was 16, which when factored into the large group said my risk of distant recurrence was 4%.

Happy dance!

Then newest TAILORx results came out and I was more like 12%. MO ran my RSPC (thanks Beesie) and that said 13%!

Happy dance over!

I had been happy with 4%, so I chose chemo to try to reduce down to that level (combined with OS + AI based on the TEXT/SOFT trial).

I'm high clinical risk, 42yrs old, pleomorphic features, and my KI67 was 40%. I also have ILC which is sneaky and hard to detect as it metastasizes.

I'm glad that I dug into the study results and pushed for more thought and analysis in order to have the chance to do chemo promptly.

Diagnosed at 42, Oncotype score 16, ITC in one node- considered node negative. Lost right implant to infection March 2020. Waiting to start reconstruction all over again. Dx 4/8/2019, ILC, Left, 3cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2- Dx 4/23/2019, ILC, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- Surgery 5/15/2019 Lymph node removal: Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy 6/13/2019 Zoladex (goserelin) Chemotherapy 8/5/2019 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 11/6/2019 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant
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Oct 13, 2019 08:46PM kaaadams wrote:

Dear Beesie,

You told me about the RSPC and I asked my MO about it and she did! Iit changed my RS from 17% to 15%. Not a big change, but moved my recurrence risk in the right direction - down!!! I don't know why they don't use this for everyone; esp women 50 and over. Seeing there are 4 categories of risk for women under 50 y.o. but only one for us older women iseems to smack of ageism to me.

My MO said she advises not to base medical decisions on this 15 number, but it seems more accurate to me because it factors in exact age, tumor grade, etc. which is more info. I'm really undecided on chemo now..... My ER+ 90% means I definitely need AI therapy and I can deal with that. Just not sure assuming 30-40% risk of CIPN from Taxotere is worth a reduction of 5-7% recurrence risk.....

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Oct 14, 2019 12:24AM - edited Oct 14, 2019 12:25AM by Beesie

kaaadams, I'm not surprised that your RSPC recurrence risk is close to your base Oncotype recurrence risk. I believe your age, tumor size and grade are pretty close to the average of all patients included in the Oncotype studies; the RSPC model really moves the dial when someone has a couple of big variations versus the average, for example being quite a bit older or younger, or having a much smaller or larger tumor. Good though that your risk did move a little bit in the right direction.

I agree with you that from a risk projection standpoint, the RSPC result should be more accurate. I read somewhere recently that while the addition of clinical and pathological factors doesn't help predict the benefit of chemo, this information does improve prognostic accuracy.

As for whether or not chemo is worth taking, keep in mind that with the Oncotype results, you are looking specifically at metastatic risk, i.e. a distant recurrence that is expected to eventually be terminal. So it's not just a 5-7% reduction in recurrence risk but also a 5-7% reduction in mortality due to this breast cancer diagnosis. This is different from a local recurrence in the breast area which might be easily treatable.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
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Oct 14, 2019 06:28AM kaaadams wrote:

Thanks Beesie, for your comments here. It's good to hear from you re: prognostic vs. predictive difference. Yes, recurrence would likely be mets to bone, liver or lung which would mean Stage 4 or terminal diagnosis my MO said. That helps put things in perspective. We have 2 adult children, 27 and 29 and our youngest is a senior in HS now. I'd love to see a grandchild before I die! Our older two have mental health disabilities also. I'd hate for my husband to be alone with that. He had a heart attack at 52 and got one stent with no permanent damage thank God. He has changed his lifestyle since, vegetarian and exercise an hour daily and is doing well. He supports me in either decision, chemo or only AI, but recently said he thinks I should do chemo. That sways me a bit for sure.

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