Oncotype scores
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I am also postmenopausal and on Tamoxifen due to osteopenia and borderline osteoporosis in a couple of spots. I am having a Dexascan in a few months to see if the Tamoxifen has helped my bones. Then we'll decide what to do about switching to AI's at some point. I kind of hate to rock the boat since I am doing well on Tamoxifen with very little in the way of side effects.
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Since you are both er and pr positive maybe Tamoxifen is as good as AI drugs.
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Mine was 35
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Hi DonnaleeNC: I was diagnosed at age 69 in October 2017. I was given the choice to either have radiation and a lumpectomy or no radiation and a mastectomy. I choose the double mastectomy and no radiation. My doctors office automatically did the onco type score. My score came back 16 which meant no chemo but yes to aromatase inhibitors for 5 years. I started on Anastrozole for 6 months, could not tolerate the side effects, mainly muscle and joint pain, switched to Letrozole for a few months, then tried Exemestane. All 3 of the aromatase inhibitors made me feel like I was 90 years old. So after a 5 week vacation from all of the AI's, I just started Tamoxifin this last Monday. So far so good. I was told that they do the oncotype score to see whether you are would benefit from chemo. Something about the benefit of chemo vs the risk. I would definitely want to know my onco type score because if it comes back high you might very well want to take the chemo. You need to have all the facts before making a decision. Good luck
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donnalee,
I was just reading your post, and something struck me that hasn't been mentioned by anyone else. You said:
"I was told I had a 30% chance of recurrence if I don't go through radiation and tamoxifen. Would an oncotype determination help me make a more informed decision as to what therapies I should proceed with?"
My question is whether the 30% is referring to a local recurrence (i.e. in the breast area) or a combination of both a local and/or distant recurrence (distant recurrences being metastatic). This is something you need to ask your Medical Oncologist.
After a breast cancer diagnosis and breast cancer surgery, we all face 3 risks.
- The first is the risk of a local recurrence. This can happen if a few rogue cells remain in the breast after surgery and have the opportunity to develop again into breast cancer. This risk increases if the tumor is large (from your signature line, yours doesn't appear to be), if the cancer is aggressive (your cancer, being grade 1, ER+/PR+/HER2- and node negative, does not appear to be aggressive), and if the surgical margins are close. A 30% recurrence risk, as you were quoted, seems very high unless your surgical margins were small. Do you have the information about the size of the surgical margins? From a treatment standpoint, Radiation and Tamoxifen/AIs are used to kill off any rogue cells left in the breast, thereby reducing the risk of a local recurrence.
- The second is the risk of a metastatic recurrence. This can happen if a few rogue cells escaped from the breast and moved into the body either through the blood stream or through the lymphatic system, prior to the removal of the cancer from the breast. In most cases when this happens, it happens well before the cancer was even discovered. This risk increases if the tumor is a) genetically aggressive (as measured by the Oncotype or Mammaprint tests), b) pathologically aggressive (your cancer, being small, grade 1, ER+/PR+/HER2- and node negative, is pathologically very favorable / non-aggressive), and c) the patient is younger (at 67, your risk will be considerably lower than someone in their 30s or 40s). From a treatment standpoint, Chemo and Tamoxifen/AIs are used to track down and kill off these rogue cells that might be in the body, thereby reducing the risk of a distant / metastatic recurrence.
- The third is the risk of a new primary breast cancer. This is a new breast cancer that develops at any point over the rest of the patient's life, and that is not a recurrence of the first diagnosis, i.e. it is not the same cells reactivating, but new cancer cells that develop in either breast. As women, we all can develop breast cancer again - we are not immune because we've been diagnosed before. In fact our risk is higher because we've been diagnosed before - our bodies have already shown that cancer cells can develop and thrive. This risk increases significantly for those who are young (therefore at 67, your risk will be lower), who have a genetic mutation that increases risk, and who have a first diagnosis with particular pathologies (ER+/PR+/HER2- is the most favorable and presents the lowest risk to develop a new primary). From a treatment standpoint, Tamoxifen/AIs and surgery (a BMX) are used to reduce the risk of the development of a new primary breast cancer.
I'm just guessing, but since Radiation was mentioned, I suspect that the 30% that was mentioned to you refers to local recurrence. The Oncotype test does not provide any information about this.
What the Oncotype test does is add to the body of information about your possible risk of a metastatic recurrence. But as I've indicated previously in this thread, the Oncotype test should not be used alone, without consideration to the other factors that affect metastatic recurrence risk. And if those other factors are overwhelming, the Oncotype test is in effect invalidated. This is precisely what the Oncotype RSPC computer model shows.
- A very young patient who gets a low Oncotype score, but who has a diagnosis that is pathologically aggressive (a large tumor, grade 3, perhaps micromets in the nodes) will likely end up with a revised recurrence risk indicating the need for and benefit from chemo, when the additional clinical/pathological data is input into the Oncotype RSPC model.
- An older patient who gets a high Oncotype score, but who has a diagnosis that is pathologically non-aggressive (a small tumor, grade 1, node negative), will likely end up with a revised recurrence risk indicating no need for or benefit from chemo, when the additional clinical/pathological data is input into the Oncotype RSPC model.
- These are not just theoretical examples, but reflect situations I've seen on this site, where the Oncotype RSPC model was used by an MO, and the Oncotype score has been overridden by clinical/pathololgy factors, leading to chemo or no chemo decisions, contrary to the genetic Oncotype recommendation.
Donnalee, I don't know your tumor size, although from your signature line it appears to be relatively small, but you are 67 and you have a grade 1 ER+/PR+/HER2- node negative tumor. My guess is that this may be the reason why an Oncotype is not being ordered for you, because the results, even if high, might be overridden by your very favorable pathology and your age. In other words, even with a high score, your clinical/pathology factors will likely result in a low recurrence risk, which wouldn't warrant the risks and side effects of chemo. Many facilities will not order the Oncotype test if the results will not change the treatment plan. So if your MO has determined based on your clinical/pathology factors that he would not recommend chemo even with a high Oncotype score, then there is no reason to order the test. That said, I completely understand your desire to find out your score, and hopefully you can convince your MO to order it.
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i had a 32. Had chemo
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Thanks for your reply, Lets Go Golf. I can't take AI's due to osteoporosis. They want me to take tamoxifen instead. Really, I think it is only Pharma that wants menopausal women to take AI's - menopausal women are the ones at risk for osteoporosis, so Pharma can sell us the AI's - which are more expensive than tamoxifen - AND sell us Fosamax at the same time.
My medical oncologist thinks it will not inform them to do an Oncotype unless I go through with tamoxifen - and then it only informs them as to whether to do chemo. That's their position. Funny, I really thought, since it does speak to recurrence risk, it would inform all my decisions.
At this point, because I really no longer trust my providers, I am delaying all treatment for a year. I will go back in 6 months for a mammogram.
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Beesie, thanks for your very informative post. I'm going to save it for my next appointment, because it brings up many excellent points.
My tumor was small, I'm considered low risk. The 30% figure, the NP says, is a risk of the cancer appearing anywhere in my body (both local and metastatic) over the rest of my life. It therefore seems like a very "soft" figure.
My providers have worn me down to a nub. I think I'm just going to take a break for a bit.
But if I get an Oncotype done, I will gladly share my score!
Best wishes to everyone!
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DonnaleeNC... It is my understanding that Tamoxafin is not a preferred drug for older folks is because it increases our chance of either having a stroke or having cervical cancer. Apparently, Arimidex does neither of these things but it definitely does a number on our bones and so most of us will need to take another drug to stabilize or reverse that. These bone drugs also decrease our chance of getting bone mets which is a plus. Looks like you had grade 1, stage 1, node negative disease which should give you a fantastic prognosis. Best wishes!
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letsgogolf, but AIs present a greater risk of cardiovascular events, plus of course bone damage. So between Tamoxifen and the AIs, for post-menopausal women, it comes down to "pick your poison". Then it comes down to luck. Hopefully, whichever drug, you don't experience any of these serious side effects.
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I had an Oncotype score of 47. I have low weak staining ER+, PR-, and HER-. My Ki67 was 93%. Grade 3 - stage 1 IDC. Node and margin negative. I start my first of four rounds of TC chemo tomorrow. I am almost 67.
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My Oncotype score was 9 in 2006.
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IllinoisNancy, was your 2006 diagnosis PR-? That would be the lowest I've ever seen for a PR- cancer.
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my Oncotype score was 31. ER+PR-her2- grade 2. I did chemo. Now on AI(letrozole
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Mine was 9. No KI67 listed anywhere on any reports.
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Oncotype 49. ER weakly positive (35%- negative on oncotype), PR negative, HER negative, Ki-67 around 60%. Did TC x 4 and have completed 3 years (out of 5) of letrozole. I won’t do 10 years.
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I’m like you, Limnogal. Oncodx of 49 with big letters saying ER Negative even tho the pathology report said weak staining and 15-25pct ER positive. All reports said PR - and HER2 -
Clinical staging was 1a. 16mm tumor, grade 2, Ki67 10pct. Originally the thought was no chemo. But the oncotype dx score changed that. Tried TC but couldn’t tolerate Taxotere so then did AC. Originally started Arimidex but bone density came back low so now on tamoxifen.
I had had DCIS 5 years previously with lumpectomy and rads, so no choice - mastectomy this time around. No reconstruction for me.
The SE from tamoxifen are at only “annoying” levels so I am persisting for now . it’s not clear that it will have any beneficial effect with very little ER sensitivity and also PR-
Anyone in this situation just quit the hormonal treatments??
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Donnalee -- You can take tamoxifen or an aromatase inhibitor. Personally I would rather take the Aromatase inhibitor because I don't like the thought of some of the Tamoxifen SE's -- also the AI's work better. I do have osteopenia and was offered Tamoxifen, but refused it. However, even more important is the radiation. Do you have a physical reason for not doing radiation or is it a choice. I am 70 (older than you (-: and had radiation. There was nothing to it. You get kind of tired the second week, but I had no other problems. It's so very important after a lumpectomy -- kills all those little baby cancers left behind.
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Donnalee - your med onc is slightly right
The oncotype test gives chance of recurrence assuming you do hormone therapy for 5 years. It doesn't give chance of recurrence if you opt out of hormone therapy.0 -
Hello, I had a score of 21. on Arimidex now for 3 years. node negative.
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