oncotyping score -what woud you do?
starsfan
Member Posts: 45
Hi everyone- My oncotyping score was 20 (an intermediate score). Would you have chemo with this score? (14% recurrence without). This would be the only reason to add chemo to the radiation I am currently doing. The Dr. said it is up to me. Thanks for any input.
Linda
Linda
Comments
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Linda,
Go to adjuvantonline.com Register as a medical prof. Go to the section on BC then to the Genomics software. Plug in your specifics and onco score. You will get back a % of benefit by adding chemo to hormone therapy. My wife found this to be a great help in making her decisions. She had an onco score of 25 (16% recur) Benefit of adding chemo was best case 4%. She opted out of chemo. NED just over 1 yr. -
I also used that software to aid in making my chemo decision....My Dr. showed it to me....
I didnt have as tough a decision as you because my score was 12, there wasnt enough benefit for me to add chemo to the lumpectomy, snb, rad treatments but I guess I needed to see it in black and white and adjuvantonline did that for me.
Best wishes
Jule -
My score was also a 20 and my onc left the decision to me. I was given the opportunity to join a trial called the Tailorx. It chose for me. You might want to look into this trial if you are having a hard time deciding.
http://www.cancer.gov/search/ViewClinica...earchid=2342755 -
Thank you all so much for replying- online sites awesome.
I feel better about a decision already.
Linda -
LAdurbi - I've wondered if anyone has done this. Do you worry about any liability of doing this? I am done chemo and rads, but still would like to check out the sight, but then I chicken out about registering. Would you mind sending me a PM on how you did this? I know it won't change my treatments, but curiousity and help in deciding to stay on Tamox or AI's. Thanks in advance. Karen in denver
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Linda, I'm curious what you are deciding. I just found out yesterday I am also a 20.
I have ILC and my tumor was 1.8cm; no lymph nodes, clean margins and a mitotic rate of 0-1.
7 out of 8 positive for ER/PR and her2 negative.
My docs were a bit surprised to see it come out at 20.
Any thoughts are appreciated! -
My Dr. told me yesterday that even though he is leaning toward no chemo, he has never had a patient with that score. He is going to call the Dr. at the oncotyping company who is the expert on it and discuss it with him- probably today - he wants to be certain of our decision. I will let you know what they say.
Linda -
Karen,
Sent you a PM and an email. -
Linda, I await your feedback.
I checked out the adjuvantonline myself and foudn that chemo would give me 2% benefit. Of course, the software doesn't factor in tumor grade/stage, tumor size and not even type of breast cancer or how er/pr+ someone is.
The online software for the genome looks only at distant cancer (mets) where as the other software looks at all recurrence.
I hate this. -
I have never posted on the boards, but for all you gals that are relying on Oncotype DX to make a chemo decision, I feel I need to let you guys know what happened to me. I almost made the mistake of a lifetime. I had a lumpectomy and SLN on 3/19, and we got dirty margins. I had a 2.5cm IDC, stage 2B, grade 3, node neg, and the margins showed DCIS, with a bit of IDC. Only the tumor had shown up on mamm and u/s. We did a re-excision on 3/29... and got dirty margins again, even on sides that had previosuly shown clean. At that point I opted for bilat mast, which was done on 5/3. Sorry for all the history, but I felt it's important to the story.
With the clean node, and bilat mast, I was really not counting on having to do chemo, but I insisted on an Oncotype DX for peace of mind. I was relieved when I got my results, a 12 (recurrance rate of 8%). I called my oncologist, and told him I was opting out of chemo- this was against his wishes, btw. A few days later, I happen to glance at my Results assay again, and this time I notice that the surgery date says 3/29, which means they had sent a sample from the reexcision in to be tested. I immediately got on the phone with Genomic, where they assured me that the date was correct for the sample submitted, I was hoping for a typo. I talked to them, my oncologist, I even called my breast surgeon, and no one seemed to be alarmed about this except for me. I was told that the pathologist examines all the samples, and choses the best example to be submitted, and that since this is all the same cancer, the results should be similar, if not identical, for every sample.
I still couldn't let it go, so I called and found out the name of the pathologist involved, I was very respectful and assured him that I was by no means questioning his expertise, but that I needed to know that he was aware that my tumor, removed on 3/19 was sitting there, that he had examined that and the reexcision, and felt that the reexcision was the better sample to submit. He went to check it out, and called me RIGHT BACK. He said that he was not aware of the tumor from 3/19, that it was a MUCH better sample to submit for testing, that they were packaging it up for Genomic immediately, and to NOT make any decisions until I got the second results.
Low and behold, this time my score came back a 33 (recurrence rate 22%)... and I had my first AC/T tx yesterday. When the doctor from Genomic noticed I had to results assays, he called me. I asked him if it was normal for two samples to get such wildly different results, and he said no one had ever submitted two samples before, that he knew of. Not at all reassuring. Anyway, I just wanted to make people aware of it, if you are going to make chemo decisions based on results, make sure they are the RIGHT results.... Best of luck to everyone.
Cheri -
Holy crap. I think this should be published somewhere!
I wonder how many "checks" they do to verify accuracy in their testing. I mean, take the same tumor on different days with different pathologists/testers and see if it does come back the same!!!
Thank you for sharing your story!
Best of good health to you. -
I agree. Although the Oncotype test claims high reliability, that claim is based on the purported reliability of repeative testing on the SAME tumor sample. So apparently, according to this antedoctal information provided here, there can be a significant difference in test score results between different samples taken from the very same tumor. I think that's a major cause for concern and it just goes to highlight how extremely important it is NOT TO make decisions about chemo based soley on a single factor...every individual bit of information about the tumor (grade, size etc) needs to be incorporated into that decison. The Oncotype test is nothing more than one single additional bit of info and it definately should not stand alone.
Here's an audio link to another piece of antedoctal information from a doctor reagrding an Oncotype score that came back completely inconsistent with the other known prognostic criteria about the patients tumor. Listen to section 2, track 4 -
http://www.breastcancerupdate.com/download-audio/bcu/2006/tt2/default.asp
For those who might not have audio available on their computer, the story is a doctor reporting about a patient with a tubular breast cancer that was 0.6cm. Tubular cancers are low grade, so a low oncotype score would be expected on a tumor that small but instead, the score came back at 35!!
The case-controlled Kaiser study (track 5)is also very interesting. -
I wonder if onco is a blessing or not. I've read so many posts here about women with stage 1 that go on and get mets while some stage III that never do. So maybe the onco is a better predictor of staging? or maybe initially pathology was incorrect and onco isn't any more accurate ?? I do not like the unknown. I know, I'm not the only one.
Sure wish there were a cure for this beast! -
I have stage I, and my oncotype test came back 25. Which means I have a 16% chance of recurrence. They told me if I did chemo it would lessen it by a 1/3. They recommend I do chemo. I would use CMF and said I wouldn't lose my hair. I'm getting more confused when I read these message boards. What have you decided?
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Quote:
I have never posted on the boards, but for all you gals that are relying on Oncotype DX to make a chemo decision, I feel I need to let you guys know what happened to me. I almost made the mistake of a lifetime. I had a lumpectomy and SLN on 3/19, and we got dirty margins. I had a 2.5cm IDC, stage 2B, grade 3, node neg, and the margins showed DCIS, with a bit of IDC. Only the tumor had shown up on mamm and u/s. We did a re-excision on 3/29... and got dirty margins again, even on sides that had previosuly shown clean. At that point I opted for bilat mast, which was done on 5/3. Sorry for all the history, but I felt it's important to the story.
With the clean node, and bilat mast, I was really not counting on having to do chemo, but I insisted on an Oncotype DX for peace of mind. I was relieved when I got my results, a 12 (recurrance rate of 8%). I called my oncologist, and told him I was opting out of chemo- this was against his wishes, btw. A few days later, I happen to glance at my Results assay again, and this time I notice that the surgery date says 3/29, which means they had sent a sample from the reexcision in to be tested. I immediately got on the phone with Genomic, where they assured me that the date was correct for the sample submitted, I was hoping for a typo. I talked to them, my oncologist, I even called my breast surgeon, and no one seemed to be alarmed about this except for me. I was told that the pathologist examines all the samples, and choses the best example to be submitted, and that since this is all the same cancer, the results should be similar, if not identical, for every sample.
I still couldn't let it go, so I called and found out the name of the pathologist involved, I was very respectful and assured him that I was by no means questioning his expertise, but that I needed to know that he was aware that my tumor, removed on 3/19 was sitting there, that he had examined that and the reexcision, and felt that the reexcision was the better sample to submit. He went to check it out, and called me RIGHT BACK. He said that he was not aware of the tumor from 3/19, that it was a MUCH better sample to submit for testing, that they were packaging it up for Genomic immediately, and to NOT make any decisions until I got the second results.
Low and behold, this time my score came back a 33 (recurrence rate 22%)... and I had my first AC/T tx yesterday. When the doctor from Genomic noticed I had to results assays, he called me. I asked him if it was normal for two samples to get such wildly different results, and he said no one had ever submitted two samples before, that he knew of. Not at all reassuring. Anyway, I just wanted to make people aware of it, if you are going to make chemo decisions based on results, make sure they are the RIGHT results.... Best of luck to everyone.
Cheri
I mentioned your post to my new (second opinion) oncologist that I met with this afternoon. He is originally from MD Anderson and very smart, caring and thoughtful.
He said he would be happy to call Genome/onco people and find out what happened. It fascinated him.
He said there have been studies done and quality checks done that prevent situations like this. He even took time to draw me a diagram on how things are done there and how they select which portions of tumors, the quality checks, etc...
If you want someone to follow up, I would be happy to give him any information to see if he would follow through and get back to you.
Best to you! -
My oncologist had not recommended the Oncotype DX test because of the favorable features of my tumor (.8 cm, ER/PR+, tubular, Grade 1). However, I insisted on it, and it came back 12, which was higher than either of us thought it would be. I am a person who does research and I have a background in statistics. I have read a lot about Oncotype vs. the other predictive and prognostic factors (too much probably! I feel like I could give presentations on it!). It's very complicated and I think it won't be sorted out for a number of years. TailorX will certainly be helpful. But I am encouraged to hear that a seasoned oncologist told his patient with tubular that he was mistrustful of the 35 score......
( I didn't do chemo).
I wish it wasn't all so complicated.
Cheryl -
Cheryl, I also had tubular bc. My score came back 11. My tumors were 1.2cm and 1.6 cm, ER+, PR+, Her2-, and I THINK Grade 2. Interesting...............Was your tumor 'TOTALLY tubular'? Best wishes!
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Hi,
Yes, I was "totally tubular." Tubule score 1, I think is totally tubular. How about you? How old are you? Did you have a recurrence or did you have both cancers at the same time? I ahve read that, while tubular has a good prognosis, some studies have shown that one is more likely to have recurrence in same or other breast with tubular. It's hard to tell because it's such a rare kind of cancer. Did you do chemo?
Best to you
Cheryl -
Cheryl, I'll have to look up my pathology report and then edit this. I don't remember it having a score like that but I'll check. This is my second time with bc...first time was 9 years ago. I had colloid bc. I had two lumps one was cancerous and the other was deemed benign. This time (1 year ago) I had 2 areas again (in the same general areas as the first time). Both were tubular bc. I was 51 at my second diagnosis. Chemo wasn't recommended, just AI (Femara). Best wishes!
Path Report says: Nottingham Score 4/9 (Tubules 1, Mitoses 1, Nuclear Grade 2). This link explains the 'grading' better than anything I've seen.
http://www.imaginis.com/breasthealth/histologic_grades.asp -
I had an oncotype score of 47...but during the month the test took to come back, I talked with my onconlogist, who was "on the fence" about chemo, due to the small size of my tumor and my Primary Physcian, who told me she would do chemo, no matter what. Both she and I thought we wanted to do everything now to prevent a recurrance and not regret anything later. Well, when the onco came back so high, it knocked my oncologist off the fence for sure. And in a way, I was glad it came back so high...no decision making! I think that is the worst part.
I wish you all good health and best of luck making these decisions...my personal opinion is to go for it! But, of course, you are the ones living with your decision.
If it helps, I was on Carboplatin, Taxotere and Herceptin every other week for 10 treatments....my side effects were a little queasiness and fatigue. Nausea was easily controlled with meds. I took off work chemo day and the day after(after about 1/2 the treatments...went to work next day at first)...side effects didn't kick in until days 3 & 4...then back to work...Had treatments on Thursday so was only down on the weekend....the treatments were very doable....
Enough of me...hope that helps someone! -
I also had a tubular cancer. I only had to do radiation and tamoxifen. my oncotype score came back "8" Stacey
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Stacey, What were the 'details' of your tumor...size, etc. and how old are you? This is a very interesting thread! Best wishes!
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My situation was similar to talbrig's. I was 1.1cm, stage 1, ER/HER-2+, poor grade. Oncologist said if my oncotype was low, he could "make a case" for no chemo. Mine came back high (can't remember the exact number). We were both surprised, so off to chemo I went. 4 AC/4 Taxol, dose dense.
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I'm a case that validates the Oncotype dx test.
I was on the fence about chemo in May of 05 when I was diagnosed with Stage I, grade 2, 1.1cm ER+100, Her2 negative. They were talking cure. I knew of women that went from stage 1 to 4 and demanded the Oncotype test that was pretty new at the time.
My score was 36 or 25% chance of recurrance w/o chemo. Adding chemo would cut that in half. So I did AC&T dose dense then Tamoxifen and Lupron.
Fast forward a year after I finish chemo and I'm diagnosed with bone mets.
If you ask me that test is definetly on to something. -
Hi AmyL
Oh NO! So, you are saying that even with all you did, you still got mets? That is so scary and SAD! I am so sorry to hear this!
Thanks for sharing this, but I had hoped that being able to tell that you were at high risk would help to stop bc from spreading, if you did all the treatments!
Do you mind if I ask what surgical treatment option did you choose - lumpectomy or a mastectomy? What type bc did you have, I'm sorry, I didn't read the first posts!
God Bless,
HARLEY -
Wallycat, cannot believe your Oncotype story. I scored 44 and wasn't happy about it. My dr., trained at Harvard, didn't freak out because he believes Herceptin negates it... felt they weighed my positive HER2 neu status too heavily. Figuring that early stage patients only recently began getting Herceptin, maybe Genomic Health will lessen the severity/impact of the HER2/neu factor when calculating their scores.
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Hi-
I was diagnosed with tubular as well (though I now question whether it was "totally" tubular, not having seen that part of my pathology report). I did end up having two tubulars, so maybe there is something to the theory that with tubular, you may have more than one primary. Both of mine were stage one, but unfortunately, when my mastectomy was performed (I had a lumpectomy for the first lump the month before), the surgeon didn't mark the second biopsy site, and therefore didn't have tissue to do the final pathology on. They said they found the site, but couldn't find any evidence of remaining tumor.....
Because of this, my oncologist sent my original tumor off for the oncotype test, and it came back a 15 - which surprised both of us. My onc still recommended no chemo (and so did a second onc), based on the pathology and the oncotype, so I gladly followed their recommendation. (though I still sometimes wonder....)
I think what made my oncotype higher than we thought it would be was the fact that the original tumor was only 50% er positive. (my second tumor, based on the biopsy, was 100%)
I'm hoping I made the right decision. I did have my ovaries removed since I couldn't go on tamoxifen (blood clot predisposition), so according to my onc, that and arimidex will help me an addition 1 or 2%.........
Theresa -
Cayenne, I am very interested in finding out whether tubular means I am more at risk for another tumor. Can you check on your pathology report? Tubule score of 1 is tubular, whereas tubule scores of 2 and 3 are not. When they gave you the diagnosis, they would have told you something like, "You have invasive ductal carcinoma and it's the tubular type," and they also probably would have told you that tubular is a good type of cancer to have, relatively. Can you let me know? BTW, how old are you? Thanks and best to you.
Cheryl -
Hi Cheryl-
They definitely told me Tubular, and it was written on my pathology report as IDC, Tubular. (it just didn't give a number with the word) My surgeon, the pathologist who examined my tissue (he went over the slides with me, showing me the "tubules") and my oncologist told me that if I was going to have cancer, this is the one to have. So, I'm pretty sure that it was tubular. (actually, the only time I didn't get the word tubular in my path report, was when I sent it off for a second opinion, and that pathologist just said IDC. I think he must have just given the main details.....at least that's what I tell myself)
As for whether tubular means you're more likely to have more than one, I don't think that's so. I truly believe I got mine from having lots of xrays for scoliosis in the 70's when I was just developing. As far as I know, it didn't mean I was more likely to have two.
Let me know if you have any other questions!
Theresa
ps. I'm 47 now - 46 when diagnosed -
I am also trying to decide on whether or not to do Chemo. My onco score was 22. 6% benefit of Chemo. I'm in Australia and arranged the OncotypeDx myself as my Onc was not that keen on the idea and it isn't available here. I am reassured that the score wasn't higher but I am in turmoil trying to decide. I have no kids or partner so only have myself to think of. Am wondering if it really is worth going through something that may not even help.
Michelle
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