Oncotype score of 29

DorothyB

Not sure where to post this - here or the forum for doing holistic during treatment or the alternative treatment forum.

I am 60% done with radiation, but about the time I was starting radiation I got my oncotype results. Everyone thought I would NOT need chemo except my first medical oncologist who ordered the report. Insurance refused to pay for it at first because I was in such a low risk category, then changed their mind (maybe after seeing the score).

I have until July 26 to decide if I will do chemo. I keep thinking no, but not positive.

I will at least try to do the tamoxifen because the benefits to that are quite large. Benefits to chemo for me see quite small.

Anyone else here w/ oncotype scores between 26 and 30 who have opted out of chemo?

Moderators

Hi Dorothy, and welcome to Breastcancer.org,

We're sorry to hear of your diagnosis, and for the struggles with making your treatment decisions, but we're really glad you've found us. You're sure to find others here who will offer advice and their experiences to help you make the right decision for you.

Deciding on chemo is a personalized decision, but one that should not be taken lightly for sure, as it is used to significantly decrease your risk of recurrence. Have you considered what it is about chemo that is making you weary of it? Are you nervous of the side effects? Keep in mind there are many different types of chemotherapy which can be tailored to your specific situation, many of which have minimal and very manageable side effects.

This page from the main Breastcancer.org site on Who Gets Chemotherapy? may be helpful also!

Many here have also chosen not to do chemo, so you may hear from those members as well.

We hope this helps make the best decision for you! We look forward to seeing you around the boards, and will be here to support you no matter what!

--The Mods

Beesie

Dorothy, how old are you and how large is the invasive component of the tumor? (The size of the DCIS doesn't matter when assessing the risk of mets).

For early stage node-negative cancer, in addition to the Oncotype score, patient age, tumor size and tumor grade are 3 factors that also influence risk. What this means is that the risk level (risk of a metastatic recurrence) associated with an Oncotype score of 29 will be very different for a patient who is 39 and has a 1.8 cm grade 2 tumor, vs. a patient who is 69 and has a 0.8 cm grade 2 tumor. The first patient will have a significantly higher risk, and will gain much more benefit from chemo than the second patient.

There is a computer model provided by Genomic Health (the Oncotype people) to Medical Oncologists that allows the MO to input the paitent's age, tumor size and tumor grade, to determine a more personalized 10 year recurrence risk. It's called the Oncotype RSPC (Recurrence Score Pathology-Clinical). If your MO has not used this model for you, it might be helpful with your decision.

DorothyB

Bessie, I am 61.

My pathology report from the tumor after lumpectomy was prepared first by Kelsey Seybold (or the people they hired) and came back as grade 2 with no lymphovascular invasion. When I switched to MD Anderson (mostly because they did the breath holding with radiation), the 77 slides were re-read and MD Anderson said it was grade 3 and that I did have lymphovascular invasion.

Tumor size was for both combined, so not sure how large the IDC was. They were in the same tumor. 2.0 cm x 1.2 cm x 1.3 cm lymph node was clear. Margins were read as 5 mm everywhere by Kelsey, but MD And found 2 mm on the DICS portion.

I sent a message to my MO just before posting here asking about the Oncotype RSPC, but no response yet.

In response to Mods question - my concern about chemo is mainly the long term impact on my body compared to the benefit. Chemo brain, anything that messes with my body enough to change my hair characteristics, cause me to possibly lose nails, etc can't be good for me Also the possibility of more serious side effects. Like everyone, the discomfort factor plays into it, but not that much. If it would help me more than 10%, I would probably do it. However with a score below 30%, I've seen indications that the benefit is only 7% or so - and maybe half that since I am over 50. There is also the probability that if I did have a recurrence, there might be better options for treatment available by then.

I have the same concerns with tamoxifen (this one because I have osteoporosis) - but in the case of the hormone blocker, the benefit is very great and outweighs the probable side effects and potential risks. I may not be able to handle staying on the tamoxifen, but I need to at least try really hard to do that due to the huge benefit.

Overall I really enjoy my life, but I would prefer quality over quantity if I had to pick.

Beesie

Dorothy, you reference your pathology report from the biopsy. What about your pathology report from your lumpectomy surgery? Is that not what you are referring to with regard to the size and grade of the tumor?

As for the IDC vs the DCIS, your pathology report must somewhere note the size of the invasive component and the size of the DCIS. Many tumors are comprised of both, and I've never heard of a situation where a pathology report does not list the size these two components separately. Its too important to not be there.

Below is a chart from last year's TAILORx study, which is what the Oncotype scores today use to determine risk. This is the 'over age 50' chart. The solid red line represents the average 9-year metastatic risk level for those who took endocrine therapy only. The solid blue line represents the average 9-year metastatic risk level for those who had both chemo plus endocrine therapy. The dotted lines, both red and blue, represent the range around the average.

You'll notice that the red lines don't continue beyond an Oncotype score of 25. This is because an arbitrary decision was made at the start of the TAILORx study that all participants with a 26 score or higher would be given chemo along with endocrine therapy. So unfortunately this extensive study was never designed to determine the risk level for those who take endocrine therapy only with Oncotype scores above a 25. This is in part why chemo is by default recommended for all scores of 26 and higher. (Note that the 'Endocrine Therapy only' recurrence risk provided on reports for Oncotype reports for scores of 26 and higher are based on an older, smaller study that overall had much less favorable survival results.)

If TAILORx had continued with the 'endocrine therapy only' arm of the study for scores from 26 to 30, where would that solid red line be? This is important because the difference between the solid red line and the solid blue line is the risk reduction benefit you get from chemo. Looking at the curve of the red line and extrapolating it out, you can estimate that an Oncotype score of 29 would probably reflect an 11% - 12% risk of mets for the 'endocrine therapy only' arm. The blue line, representing your risk level if you have chemo in addition to endocrine therapy, shows a risk of about 8% at an Oncotype 29. This would suggest a risk reduction benefit from chemo of 3% - 4%.

The question then is whether the Oncotype RSPC lowers your risk versus the averages shown in this chart. Your age, being 61, is certainly in your favor. The next big question is the tumor size. You need to know the invasive component for this. If the invasive component is most of the tumor - let's say 1.8 cm of the 2 cm - then the Oncotype RSPC might not bring your score down at all. But if your invasive component is only 1/2 of the total tumor, then combined with your age, an Oncotype 29 score might present you with a 9% or 10% risk of mets, and in this case the benefit of chemo would be less too.

All things to talk to your MO about. The questions are: Based on your age, pathology and Oncotype score of 29, what is your risk of mets with chemo + endocrine therapy vs. with endocrine therapy alone? Is the risk level with endocrine therapy alone too high for your comfort level? Is the risk reduction benefit that you get from chemo large enough that you feel that chemo is a good choice for you? That's what you need to know to make your decision.

AliceBastable

Dorothy, AIs are rough on the bones as far as osteoporosis and require Prolia or some other bone builder. Tamoxifen does NOT negatively affect bone strength/density; in fact, my breast surgeon says it helps repair bone loss.

DorothyB

Bessie, thanks for the long response. Yes, I meant the lumpectomy tumor, not biopsy and have edited my post to reflect that.

I re-read the 2nd report and it only has the one size. I don't have the first report, but am sure that it had the same size on both because I remember questioning it after the appointment and getting back the response that the size was for both tumors together. I will try to get the first report on Monday.

I've tried to find good data to figure out the statistical benefit of chemo for me. On the OncotypeIQ.com website, I found two "sort of unrelated" pieces of information.

First was two sample Oncotype reports - one Node Negative and one Micromets & Node Positive. The second had an RS of 10 and Distant Recurrence Rate of 12%. The first (Node Negative) has RS of 20 and Distant Recurrence Risk of 6% which seems to indicate that Node Negative has less chance of recurrence (which makes sense). I'm not sure how much having lymphovascular invastion affects this.

Second was this chart which has the page heading HR+, HER2-, Node-Positive, Early-Stage, Invasive Breast Cancer which is me except that I am Node Negative. (can't figure out how to post - screen print didn't work, trying to put in picture didn't work)

I used a ruler and estimate that for score 29, my Distant Recurrence Risk w/ only hormone therapy is 15.5% and adding chemo would bring it down to 12.5% for a 3% benefit. However, the confidence interval is pretty large.

The other thing I did was based on the 2nd page of the oncotype report where it gave the benefit of chemo for score 26 at 6% and the information that the average between 26 and 100 was 25. Going "straight line", that would give me about 7.5% benefit of doing chemo.

BLMike

DorothyB -- I'm so sorry you've got to go through this, and with the normal caveat about everyone being different and everyone's cancer being different, I'll offer my wife's experience because her Oncotype score was 27 when her IDC was diagnosed in 2016. At the time, her MO strongly recommended chemo and hormone treatment. This combo would supposedly reduce the risk of recurrence from about 16%-18% to about 10%-12%. My wife had reservations about the side effects of both the chemo and the hormone and opted out of each: it just seemed to her that a 6% to 8% improvement wasn't worth the potential complications involved with chemo or hormones (and the associated quality of life issues).

Well, here we are 3 years later and my wife now has MBC in both lungs. It was found early (and by accident), and she's now on hormone treatment (Femara and Ibrance). Obviously just because this was the result for my wife doesn't mean it'll similarly happen to anyone else, and we're trying to look forward not backward. Everyone has to do what they think is best for them (as my wife did), but I thought I'd share my wife's experience since your and her Oncotype scores were both in the intermediate range.

Good luck with your decision. I know it's not easy

smilethrupain

hi - mine was 29, 1.3 cm lump but multifocal. Did mastectomy and chemo .

Pessa

My score was 28. I was 58 yr old at the time of diagnosis/treatment. The lump was 0.9 cm. I had a bilateral mastectomy, chemo and am completing year 9 of anastrazole. I plan on stopping this summer due to having developed osteopenia. I have had no residual ill effects from the chemo, which I completed about 9 years ago and the course of chemo was quite doable. I continue to work full time. I did lose my hair and wore a wig for a year, but hair has grown back. I have no recurrence of the breast CA.

DorothyB

Thanks for everyone's responses so far.

BLMike - I'm sorry about your wife's recurrence.