Doc won't order Oncotype
Please help me understand. My doctor says my tumor was too small for chemo (0.5 cm) therefore there's no reason to order an oncotype dx.
His exact words were: "There wouldn't be an indication for chemotherapy since your tumor wasn't big enough. Therefore there would be no indication for the test. Even if you had the worst tumor in the world, if it's not big enough, it's not big enough."
This blows me away because he's known the size of the tumor since the day of biopsy. At every appt between dx and surgery we discussed the oncotype. Now, all of a sudden, he won't run the test. OK, it's fine if chemo isn't indicated. I'm very glad about that. But I still want to know my recurrence score. And I want my MO to work from the tumor's clinical signature as well as its biological signature.
He hasn't said, "there's not enough sample for testing." So I don't think that's it.
I just don't understand how the size of a tumor - that is now out of my body - can be the determining factor for running futher diagnostic and predictive tests.
Can anyone explain? TIA
Comments
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You're practically my dx twin except you had the mx and I had an lx. My MO didn't run an Oncotype but was willing to order a MammaPrint to assess my risk. I specifically asked for something to better understand my risk as I'm not very interested in taking tamoxifen.
I've received the high level report and have an appointment on Friday where I want to discuss my results further with him.
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My surgeon also did not order the Oncotype on my pathology because of its small size. When I had my first appointment with my MO, she said I had just been discussed at tumor board the day prior and they didn't recommend chemo and the Oncotype isn't ordered when the tumor is as small as mine was. I traveled out of town to be treated by my surgeon who is very experienced and leads the breast cancer unit at a very reputable facility, so I do trust his competence. Still, it is a bit of a relief to know others also were told the Oncotype wasn't ordered because of the size of the tumor.
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So your tumor was only .5mm, not .5cm? That is very, very tiny and in a node would be considered a micromet because they would have needed to stain it and view it under a microscope. That is the smallest tumor I have heard of. How in the world did they find it because I can't imagine you felt it or that it would have shown up on a mammogram or ultrasound.
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I'm sorry. My mistake. It was 0.5 cm. I'll edit the original post now.
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happyperidot...Not a problem. That is still pretty small but I understand your need to have some further testing done. I would feel the same way and would insist on having it sent away for further information. Best wishes!
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my tumor size was iffy but grade 3 allowed for oncotype Also if it’s in a node it’s supposed to be allowed If there’s another hospital near you, I’d call oncology and ask them if they do oncotype on that size and grade that you have ... I really can’t think some hospital would like to run that expensive test with her insurance, they are a business! I’ve been going to two different hospitals cause of insurance etc, it’s not a big deal too.
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Oh one more comment--I mentioned Oncotype and my MO said that he uses MammaPrint. So that's how I ended up w/ the MammaPrint. However, it's out of network for me and at this point I may be on the hook for the nearly $9k it cost. You may want to double check your insurance first.
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My tumor was 2.0 cm and was first categorized as grade 2. There was no lymph node involvement. My insurance first denied covering the oncotype because my specific condition did not warrant the oncotype since I would definitely not need chemo.
Cost was over $4K
My report came back w/ score of 29 and then insurance agreed to cover it.
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I might place a call to Genomic Health to see if they have any info you could add to your persuasion arsenal. Also I’d find out what the cash price is. For an MRI the insurance price was like $3500, cash price was $800. Something I’d consider paying if I had to. At least you’d have that information to share with your onc. Personally I think now is the time to gather as much info as you can. The oncotype also validates the er/pr from the initial pathology report. That is also worth something. You are always going to wonder. I’d keep pressing. The squeaky wheel gets the grease. He may just be really busy and he doesn’t want to mess with the appeal process. I understand that. Itis time consuming.
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A note on Genomic Health and insurance. As soon as the oncotype was ordered, I received a letter and a form from Genomic health, specific to my health insurance company. They wanted me to give them permission (in advance of any rejection) to appeal a rejection directly with my insurance company. Alrighty I said and sent it along to them just in case payment was rejected by insurance company. It was not. Next thing I know I have a bill from Genomic for my deductible portion, which wasn't much considering this test costs the earth. (But is soooo worth it).
So just know that Genomic is prepared to appeal for you/with you with your insurance company.
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.5cm is not too small of a sample size, they performed mine on the sample taken from core biopsy.
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Mine, too, was done with a sample from the core biopsy - considerably less than .5cm!
Togethertolearn - the hospital is not on the hook for the cost of the test, nor does it profit from it. The test is run by an outside company. (Theoretically, there could be some incentives for MOs to submit samples but that is purely conjecture on my part.)
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Here are the specifics direct from the Oncotype webpage:
No where does it say there is a minimum size of tissue required. If it were me, I'd insist on the test or look into getting a 2nd opinion.
"Eligibility
Patients are eligible for the Breast Recurrence Score test if they are:
- Recently diagnosed with invasive breast cancer
- Medically eligible for chemotherapy
And the cancer is:
- Anatomic stage I, II, or IIIa
- Estrogen-receptor positive (ER+)
- Human epidermal growth factor receptor-negative (HER2-)
NOTE: If your patient has been diagnosed with non-invasive breast cancer, ductal carcinoma in situ (DCIS) she may be eligible for the Oncotype DX Breast DCIS Score test."
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Here's the thing. All Oncotype scores are not equal. A high score on a small tumor does not present the same risk as a high score on a large tumor. Even with the same score, a grade 1 tumor presents a lower risk than a grade 3 tumor. A score for a younger patient presents a higher risk than the same score for an older patient. Genomic Health, the Oncotype people, recognize this, although they don't talk about it much and they give patients generic reports that don't incorporate these factors. What they do have however is a model called the Oncotype RSPC (recurrence score pathology clinical) that is available on-line to MOs. The MO inputs the Oncotype score, the patient's age, the tumor size and the tumor grade, and the model kicks out a new 10-year metastatic recurrence risk, which might be very different than the risk shown on the Oncotype report that the patient received.
What this means is that with a small tumor and a favorable pathology, and a patient at least over 50, an MO will already know that even a high Oncotype score will not present a high enough risk to recommend chemo, and which means there is no reason to order the Oncotype test.
For example, with a node negative ER+/PR+ tumor, a 35 Oncotype score would be high - and for most patients would lead to a clear chemo recommendation. On average (and on the Oncotype report that you'd receive), you'd have something like a 20% risk of mets with hormone therapy alone. But if that 35 score was input into the Oncotype RSPC model, along with your age (55), your tumor size (5mm), your grade (2) and whether you will be taking an AI or Tamoxifen (let's say an AI), the model would recalculate your risk. With the AI alone and no chemo, 10-year metastatic risk might come out to be only 7% or 8%. At that risk level, most MOs would not recommend chemo.
So size counts. And the Oncotype score is only one factor in the MO's assessment as to whether chemo should be recommended. That's why many MOs won't send for an Oncotype score for those who have small tumors and favorable pathologies. What they are in effect saying is that regardless of the Oncotype score, they would not recommend chemo for a tumor/pathology that small and favorable.
Rather than ask for the Oncotype test, maybe see if your MO can play around with the Oncotype RSPC model, inputting various Oncotype scores along with your age and tumor data. See what your risk would be with each score and whether any score would lead you to want to do chemo. I suspect you'd need a scorepossibly as high as 50 before you'd get to a risk level that would warrant chemo. And with your tumor, a 50 score would be extremely unlikely.
Edited to add: Here are the NCCN Guidelines, which do not recommend the Oncotype test for hormone positive tumors that are 5mm in size or smaller:
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I asked my medical onc to do the Oncotype RSPC and he said he doesn't do them for cases like mine
I wish there was a way that I could just run it online.
He did give me a referral to an integrative medicine doctor. -
Thanks for the great info, Beesie.
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Dorothy, that's terrible. My MO showed me how the Oncotype RSPC works. It literally takes 1 minute to input the data and get the revised 10-year metastatic risk. I think it's shameful that this isn't the information that's on the Oncotype report. The Oncotype test is so personalized - 21 of the genes in your tumor - and yet they present patients with very high level generic recurrence results, when it would be so easy to personalize the results. In some cases the difference in results will be small, but in some cases the difference will be significant, either leading someone with a lower Oncotype score to have chemo, because of young age and an aggressive pathology, or leading someone with a high Oncotype score to pass on chemo, because of an older age and favorable pathology.
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Thanks to all of you for your input. Bessie, I've saved your post for reference later.
My request for the ODX was rejected by the BS; and I've given up with him. I'll meet with my MO for the first time on Monday and will try again with her. I'm really interested in the test for all the reasons we've discussed above. Plus, I'm luminal B (PR+ is less than 14%); B's tend to have poorer success with endocrine therapy alone.
I just want to be sure ruling out chemo based on complete science.
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.... not sure why, but my oncologist also didn’t show me or tell me about the Oncotype RSPC... it’s too late now because too much time has passed
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happyperidot, has your tumor been tested to be Luminal B? Low or negative PR does not in and of itself mean that the tumor is Luminal B.
https://wjso.biomedcentral.com/articles/10.1186/s12957-017-1299-9
April, it appears from reading this board that very few Oncologists use the Oncotype RSPC. Only a few women here have ever mentioned it, but those who have without exception have been pleased that this extra level of specificity was provided and many have said that the information helped them make their chemo decision, which in some cases was a different decision than they would have made using the generic information provided on their Oncotype reports. I don't know why all MOs don't use the Oncotype RSPC
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thanks so much beesie for this info! I’m guessing a lot of oncs don’t use this test because perhaps it takes too much time ...
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April, it's a computerized model. The MO has to input 5 datapoints - the Oncotype score, the patient's age, the grade of the cancer, the size of the tumor and either "AI" or "Tamoxifen" to indicate which the patient will be taking. It's take 1 minute.
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well jeez Louise why DON’T they use the test!
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Hi Maryland,
Here is what I experienced with the Oncotype DX test.... requested this test to see if recommended chemo. I asked the nurse navigator what is the number on the result that they recommend chemo.. her response was 25 and up. I prayed for a result of 10... I was blessed with a 12!
That was in 2012. So no chemo for me. August 2018 I was in shock to be diagnosis with Metastatic Breast Cancer. I'm not sure if the test is helpful.....
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Picturelover,
I am sorry that you are now metastatic. As to the value of the Oncotype test, it is helpful in decision making with regard to t, but it is neither a guarantee nor promise of anything. It is still a useful tool. Take care
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PictureLover, even with chemo, you unfortunately might still have been diagnosed with mets.
Based on the research studies and data used in 2012 (different than today, now that the TAILORx study is available) an Oncotype score of 12 likely conferred a risk of mets of approximately 8%. If you'd had chemo, your risk probably would have come down by only 1% or 2% - not much difference in risk. It's for exactly this reason - because the risk reduction benefit from chemo is so small - that chemo is not recommended with lower Oncotype scores. Low scores don't mean that the patient might not develop mets but they mean that chemo doesn't provide enough risk reduction to warrant the side effects and serious health risks from the chemo itself.
With a low Oncotype score, your risk to develop mets certainly was low, but you unfortunately had crappy luck and fell into that low number. I'm so sorry.
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I find the way some folks regard statistics, or prognostic exams/tests interesting. Those who have a low chance of recurrence, side effects or other low risk possibilities seem genuinely shocked when something that had a low probability of happening happens. Upsetting and disappointing as it is, and despite the low odds, it does happen.
When I had my port installed, I knew that there was a tiny possibility of a lung puncture that could result in a pneumothorax. This happens about 1% of the time and patients receive an x-ray after the procedure to make sure this hasn’t happened. Sounds pretty good, right? So how did I end up with a complete pneumothorax, 2 1/2 weeks after my port installation? Well, it appears as if my lung was slightly nicked during the procedure, so it looked fine after the x-ray. But like a slow leak on a tire, it completely collapsed at a certain point. The chances of this happening are infinitesimally small, but it happened to someone, me! It wasn’t anyone’s fault and I still think ports are great. I was just massively unlucky.
What I’m trying to say is that none of our treatments, tests, procedures etc. come with a guarantee. If the chances of something negative happening are small, that’s wonderful but however small, there is still that chance. Nothing is foolproof and there are no guarantees. Unfortunately someone will be that .5 or 1%.
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exbrnxgrl, one thing I learned in stats is that just because something has a zero probability of happening, it doesn't mean it can't happen.
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I agree, I take statistics with a grain of salt. Being diagnosed so young, the odds were already against me once, so when I hear 8% chance of metastatic recurrence within 5 years, I totally expect it to happen. Ugh.
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My oncologist wouldn't give me the oncotype DX because he said the treatment would be the same.....anti-hormonals. You just never know.
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