Information on decisions with Oncotype score
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I requested an oncotype test even though the oncologist highly recommended chemotherapy. At the time, the reason she recommended chemo was because of the high grade (3), weak estrogen, and negative progesterone and HER-2. It wasn't that I didn't trust my oncologist, but rather that I needed some time to wrap my head around going through chemo.
I got those results back today. My oncotype score is 50 with a 39% chance of distant recurrence risk at 9 years. It was a good thing I was sitting down.
We discussed why she felt CT was the better choice over AC-T. I'm okay with the decision and scared but ready to proceed with chemotherapy.
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fairydragonfly, I'm sorry you find yourself here. The high grade, lower ER, and neg PR definitely point to a higher oncotype score. I'm sure it was overwhelming to see the score even though chemo was on the table. May I ask why your MO recommended TC over AC-T?
Reading all of the side effects can be so scary but please remember many find this regimen very doable. You will find much support here. You will get through this!
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She felt that the added risks associated with AC-T, especially to my heart, weren't worth it. Plus in the hopefully unlikely event it returns, it leaves that option available. My friend taking notes didn't write down everything, but I remember the oncologist saying that TC had less side effects and is generally handled better. I also suspect it has something to do with my other health issues.
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I understand. Thanks for sharing. I was presented with TC option and never really questioned. I hope you are pleasantly suprised and find that it's not as bad as u think! Take care and hang in there!
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Here's what happened: to all that were on my post.
My oncologist had my sample taken from the hospital lab where it was originally read for MD Anderson's top pathologist to review. What he found was that I had surgery on a Friday afternoon and the tumor specimen sat over the weekend and the next week before it was read. He said he was seeing more misread readings in specimens where the patient had surgery on Fridays and the lab was so busy it takes each specimen as they come in to read but they also get very backed up so it sits
They have found when a tumor has sat for that long of time it puts out negative readings. So my 3 positive biopsies at 70% er positive, 40% pr positive and HER2 negative per the pathologist were actually positive and I should treat this tumor as positive. He said if I was his mother he would tell her to treat this as a positive tumor. He said they never should have sent it out for an onco score.
So when the onco company received my specimen it was 24 days after my surgery and it read triple negative with a 41 onco score.
So back to where I started. Treatment was called by my surgeon, oncologist and radiologist originally to be a partial lumpectomy, partial radiation and anti hormone therapy for 5 years.
Oncologist said well you can either go back to what we originally told you to do or take chemo for 4 months and he was leaning to the chemo, just because this was such a horrible mixup.
I chose the original. No chemo. I did do full breast radiation. My gut told me not to do the chemo on a guess.I hope I did the right thing and never get cancer again. But I can tell you that was hell to go through.
Hope your all well.
Zeke
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ZEKE, all I can say is Wow!
I've seen so many people post about how they have biopsy or surgery pathology that is ER+/PR+ but then they get a high Oncotype score and it turns out that the Oncotype measurement puts them at low or negative ER and PR.
Is the reason the age of the sample? That's mindblowing and if this truly is a factor, it puts into question a lot of Oncotype results. Wow!
Given that your high Oncotype score was driven by the low ER and PR, I think you should be comfortable with your decision to pass on chemo, knowing from your biopsies that you are ER+/PR+. I too hope that you never have to deal with cancer again.
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Hi Bessie,
Thank you. Yes the reason is the way they treated the sample along with how long it took for them to review it. The sample at that point was old. When it sits that long before reviews it gives out negative readings per the head pathologist at MD Anderson0 -
Wow, Zeke, that’s unsettling to read. Really unsettling. On pathology, my tumor was ER+ 64%, PR- HER2-. My breast surgeon was certain I wouldn’t need chemo. When I met with the oncologist, he said he thought my oncotype would be midrange. But discovered that although an oncotype had been requested, it hadn’t been sent out. So he ordered a sample sent. So there was maybe a couple of weeks after my surgery before my sample was sent for oncotype. Sounds like that long delay may have been a factor? My score came back 38 and triple negative and I had chemo. (I’d already had a BMX and no rads.)
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at 70 , you can imagine my surprise when my yearly mammogram in august was positive for cancer ,
I had a lumpectomy, 3 nodes removed, negative , and proton radiation for 2 weeks. a full PET scan in January showed no sign of cancer anywhere else
I had tumor 1, 1.4 cm stage 1, grade 3, ER+ PR+ HER-
I had tumor 2, .6cm stage 1, grade 2, PR+ HER-
my oncotype score is 42 KI 67 95% high .
it took me a while to decide , the statistics were scary, but I declined chemo and hormone therapy because at my age , quality of life is more important. I decided that I did not want to have a restricted life now, as I am very active, the side effects pretrified me.
If I had been much younger when diagnosed, I would have done it differently.
Every cancer is so personal that nobody can be an example to follow, only to read about,
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Zeke, that's crazy and now has me worried. My MO just sent my tumor for an Oncotype a week or so ago. It will be 50 days or so after surgery. She didn't seem bothered by that a bit (at first my BS said she wasn't ordering one because she didn't feel the need).
I'm waiting another week or so before Tamoxifen although she feels she won't recommend chemo regardless. My path after surgery was the same as original biopsy. Strange she wasn't concerned
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My first go-around my biopsy showed ER+ 100%, PR+ 50% and Her2-. My specimen was sent the next day for the Oncotype test, and I received the results within 10 days, so I don’t believe there was any delay. However - my receptors changed significantly to ER+ 50%, PR-, and my score was 42. I have to wonder if part of the reason for the discrepancy is the way tumors are tested in pathology (small sample size) vs. at Genomic Health (grinding up the tumor to get a more homogenous sample)
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Hi NancyHB,
I wish I knew. I am going by what the head pathologist at MD Anderson told me. He was certain about this.
zeke0 -
I think this should be a huge concern for all involved and that the surgeons, pathologists and oncologists need to put their heads together on this
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I feel this could be a situation that needs to be looked at seriously
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This is disturbing to hear. All Medicare patients have to wait for two full weeks after surgery to even send the sample to Oncotype, then it's a three week wait for the results. Are the samples too old to give an accurate assessment? Medical person tend not to question this test so it's hard to get an answer.
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it's very disturbing and It was horrible for me to go through. I pray this sheds some light on more investigation.
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I had my surgery on a Friday, pathology report came back ER and PR 95% strong positive. Four weeks later the specimen was sent to have the Oncotype test, it came back ER+ and PR - ! My MO/RO always believed the original pathology report.
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Hi,
Thanks for your reply. At least I know now that I am not the only one this has happened to
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what type of treatment if any did you do
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We’ve been out of the country, but we got back tonight and I checked my records - my sample was sent off for oncotype a full month after my BMX. So disturbing.
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it is very disturbing. And I am glad I posted this because I am hearing from people where the same thing happened to them too
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...don’t they refrigerate the samples? ...how do they do the BCI test after five years?
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Hi,
My sample was so small they used it all especially after I had the recheck it again.
I never heard of a BCI test. After 5 years?
whst is it0 -
here is some information on the BCI:
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My mom just had the BCI test this fall. I had never heard of it. They took her off Tamoxifen (she was on that even though she was lost menopausal for weak bones) because she got a low score (low likelihood of extended benefit with therapy. They said she was done. It was the risk of distant recurrence with extended endocrine treatment I believe. They tested her tumor (I assume it was frozen) right after she hit 5 years. She showed it to me and she had like a 3% risk from years 5-10 and 6% overall from 0-10 years.
Hope this helps.
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Like the others who have responded to your post, I am very disturbed by what they report, and your situation. I am 70 (nearly 71) and was diagnosed with invasive ductal carcinoma in February. The tumor was small, appeared on no images (annual screening mammogram, diagnostic mammogram, sonogram, and eventually (after diagnosis) MRI) - the radiologist had recommended a biopsy of an area of calcifications in my right breast he couldn't define as benign, and during the magnification of that area of the breast during the biopsy, the small tumor was found. Pathology of the tumor: ER+ 99%, PR+ 60%, HER2 -, grade 1 (score 4). Since the tumor board decided the reason the tumor hadn't shown up on any imaging, including the contrast dye MRI, was probably linked to the calcifications masking it, and since I had other areas of calcifications in that breast, I had a mastectomy in March. My surgeon ordered the specimen to be sent to Genomics and two days later, the hospital pathology lab sent it. Two weeks later, Genomics had not logged it into their system (finally did after the hospital pathology lab told them precisely when it had been received). It was over a month before I received my results from Genomic - ER+ (but barely), PR and HER2 negative). The swing between the PR numbers was more than 100% and the drop in ER positivity was 90%. My ONCA score was 32. My MO questioned the discrepant scores and had the hospital pathologists rerun the tests (from core biopsy and surgery) against each other and against the original testing, and after intra and inter departmental reviews, confirmed their original findings. The MO went back to Genomics who stood by their testing and refused to retest. They attributed all differences in scores to the testing differences. I also didn't know that tumors of Medicare patients (I am obviously one) are automatically aged two weeks! Thank you so much for sharing your experience.
I hope you, and all who have responded to your post, are staying safe and keeping and doing well!
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WOW! I didn't know that Medicare patients had a two-week wait rule already built in. That's disturbing on its own, nevermind that the wait could potentially alter results. Do you know what the two-week wait is imposed?
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Zeke - thank you forkeeping us informed on your situation. I had a similar result with both MO and BS saying that there was no need for the Oncotype, tumor .6mm, Er/pr +, grade 1. They were sure that it would be a low score. But it came back triple negative with a score of 30. Like you I was very confused and upset that everything went from you all good to now you need chemo. However, they also said they were baffled by the results and that they go by pathology for the Er/pr readings and not the triple negative from the oncotype. It didn't sit right with me. I also decided to do radiation while I decided what to do. I decided against chemo because it seemed obvious to me that the oncotype was inaccurate. I attributed to the small size sample of my tumor or they didn't get enough sample to get a good reading. But with what they told you at MDA could also had been the same with my sample because it was at least a month before it was sent for oncotype testing. And my surgery was last year on FridayJuly 5th. All of my team agreed with my thoughts and my decision. I still worry a bit but the whole Covid thing but a new perspective on life.
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Topogio, if you want to feel reassured about your decision, ask your MO to run the Oncotype RSPC (Recurrence Score Pathology Clinical) model. This is a computer model that Genomic Health make available to oncologists. It takes literally no more than 2 minutes to input the data and get the results.
While the standard Oncotype report presents you with a recurrence risk based on the average risk of all patients in their research study, the RSPC model refines this risk figure by adjusting it for the specifics of your diagnosis - your age, your tumor size, the grade of your tumor, and whether you will be taking an AI or Tamoxifen. At 62, you are a bit older than the average patient in their study - this will reduce your risk. Your tumor size, at 6mm, is substantially smaller than the average tumor size in their study - this will reduce your risk. Your tumor is grade 1, whereas most tumors in their study were grade 2 - this will reduce your risk.
I don't have the Oncotype report, but from the 2018 TAILORx study, I believe that a 30 Oncotype score confers an 8% 9-year metastatic recurrence risk - assuming the patient has both chemo and takes hormone therapy. This would equate to about an 11% risk if the patient only takes hormone therapy, without chemo. But with your age and pathology, the RSPC model would likely lower this 11% risk to 6% or 7%, again without chemo. The further risk reduction benefit of chemo would be small, at most 2%.
It makes sense that a 30 Oncotype score for someone who is 50 with a 2cm grade 3 tumor would not be the same as a 30 Oncotype score for someone who is 62 with a 6mm grade 1 tumor. Unfortunately the report you get with your score provides the same recurrence risk for both cases. The RSPC model makes the adjustments to better personalize the score.
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I am sorry you had to go through that it sounds exactly like what I went through. My tumor was .07 Very small also.
I tried all 3 hormone treatments and could not tolerate them the joint pain was severe. It was crippling me I could barely walk so now they are going to start me on Tamoxifen. The oncologist told me it does not give you that severe joint pain.
I start on Monday. I hope I scan tolerate it
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