Oncotype DX results are in...
Hi ,
Hope everyone is doing well.. I just got my Oncotype DX results back and of course I fall into the intermediate range One came back 23 and the other came back 27. Hate to be in this grey area.
My tumor is Stage 1 Grade 1 highly differienated... I am not sure if chemo will be recommended based on this information.. I am having my surgery on March 22 and was told that after the pathology reports from the surgery are in that is when I will meet with the medical oncologist and have a lengthy discussion as to whether chemo would be beneficial for me.
I would appreciate any input you can give me... Would you chose chem with the Oncotype DX numbers as I stated above. When I learned of my breast cancer diagnosis I said I could handle anything but I do NOT want Chemo... I need some others to give me some input before I meet with the doctor.. Right now I am leaning towards not doing in since my tumors are grade 1 and I heard that chemo is not that effective for stage one tumors...
Help! My head is about ready to explode!
Comments
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I had a 24, so I feel your pain! You can see my info in the signature line, but the consensus from 4 oncologists was to go ahead with chemo based on my tumor size and age at diagnosis (47). The younger you are at diagnosis the more they lean toward chemo. The pathology will give you more information, especially with a highly differentiated tumor. I will say that chemo was doable and they really try to minimize the side effects, of course your experience will depend on the chemo regimen. You are correct that there may not be much of a reduction in recurrence risk at your stage/grade, but you should really push your doctors on this. My MO really pushed chemo whereas my SO thought there was no evidence it would really reduce recurrence at the expense of side effect. I also cold capped to save my hair if that is a concern for you. It really worked. Good luck
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How old are you? (The younger you are, the more sense chemo might make). Do you have any problems that could be dangerous if you’re immunocompromised by chemo--such as asthma, chronic bronchitis, multiple antibiotic allergies, bone marrow issues? Do you have heart problems which would make certain chemo drugs (anthracyclines like Adriamycin or Ellence) more dangerous for you?
Though your tumor is Grade 1, before surgery “Stage IA” is can be only a guesstimate, since stage is determined by tumor size and node involvement; you can’t be sure of the tumor’s size and whether lymph nodes are involved until the tumor’s been removed and the nodes (at least sentinel) biopsied. Your tumor’s post-op pathology might differ from that of the core biopsy sample. Usually, OncotypeDX is done on surgically-removed tissue, since there’s more of it and a more representative sample can be used. It’s not true that chemo is “not that effective for Stage I tumors,” because plenty of women here are Stage I but their tumors are more aggressive--higher grade, lymphovascular invasion, lymph node involvement, larger but still <2cm, triple-neg or triple-positive, etc.--and their tumors have responded well to chemo. Now, if you’re talking about Grade 1, then chemo might not be as effective since Grade 1 is slower-growing, and chemo works best on faster-dividing cells.
Don’t get ahead of yourself. I wonder why Oncotype DX testing was done on a biopsy sample, especially on a tumor estimated to be too small to warrant neoadjuvant (i.e., pre-op) chemo or endocrine therapy? I know a repeat test is not cheap, but I’d be more inclined to trust the result of an Oncotype DX test done on a surgical-pathology sample rather than a core-biopsy sample. Ask your MO and surgeon.
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Nachout, I am in the same boat with a 1.4 cm Grade 1 tumor and Oncotype 26. Are both of your scores from biopsies? Mine is from the removed tumor. Will they do another Onco test on your tumor, once it has been removed? Did they remove sentinel lymph nodes yet, or will that also happen on March 22? Lymph node status is a factor in deciding on chemo too.
You need to also know your ER percentage and PR percentage from your pathology report, and your Ki67 if available. If you don't have a copy, you might want to pick up a copy from the place that did the pathology report. All of these things affect your Oncotype score. My ER is 80% and PR is 40%. That means 80% of my tumor cells have the ER receptor and 40% have the PR receptor. ER% can greatly affect how well the hormonal therapy will prevent a recurrence. PR% is also being found to be a factor. The Oncotype test also does a genetic measurement of the Ki67 factor, which controls how fast some of the cells are dividing.
A month ago I felt the same as you -- please, anything but chemo! So initially I chose no chemo, because of the Grade 1 rating on my tumor and nothing found in the lymph node. But I changed my mind after mulling it over for a couple of weeks and doing more research. Now the plan is to finish up my radiation, then I will have chemo starting sometime in April. Here is my reasoning: even though the path report shows Grade 1, there is some reason my Onco score came back as high as it did. If Grade 1, ER+ was all the info needed to determine risk of recurrence, there would be no need for Oncotype. But there is more to it than that. Not every single cell in my tumor is necessarily Grade 1, and there is a good chance that up to 12% of my cells are ER- AND PR-. If my ER was 90% or 100% and my PR was above 75%, then I would trust how well the hormonal therapy will work to prevent a recurrence. But I feel there is a chance some of my cancer cells will not be controlled by anti-estrogen therapy, and I want to try to knock those out with chemo. Even though I am 61, I am very robust and will probably do okay with chemo and will be able to return to the activities I love. If I have to deal later on with a metastasis to bone, brain, lung, or wherever, my life will never be the same and my activity level and quality of life will permanently drop. Just looking at some of the posts from Stage IV patients gives you some idea of what those brave women go through. Even though there are no guarantees, I have decided chemo is a risk worth taking.
Nachout, another thing to consider is that they are currently revising the Oncotype scale. Now, low risk will stop at 10. Intermediate will be 11-25, and High will be anything over 25. The new scale (even though not official yet) will put both of us in the High category. You have a few weeks to think this over. Your tumor pathology will be available a few days after your surgery, and if you send for another Onco score that will take another 2 weeks. But be prepared to receive the same score again. I definitely needed a few weeks to make the decision. Sometimes the right decision is not the easy one. But it is really up to you and your MO to make the call.
Good luck, whatever you decide. And this whole nightmare does get a little easier once you decide on your treatment plan.
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Thanks everyone,
I am 58 years old.... My tumors were Estrogen positive 100% and Progesterone Positive 49% and 77% The samples sent were from the biopsy and no mention was made of another test being done with the surgically removed tissues. Sentinel node biopsy will take place during surgery on March 22 . I am trying to remain optimistic about no node involvement because I have been told by several that the mammogram, sonogram and physical exam indicates no involvement at this time.
I will be going for the lode injection the day before and was given a prescription for EMLA cream to apply before hand . Any advice needed for that procedure? Then the day of my surgery will be have a wire localization, what scares me too.
I am waiting for the results of the BRCA test which hopefully will be in by the end of the week...
Needless to say I am a nervous wreck and getting the Oncotype results today just added to my already elevated anxiety level... Xanax will be my are best friend.
Thanks for all of your advice, encouragement and support.... Any other info you can impart will be greatly appreciated.
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I did not have the oncotype test done. My tumor was 6 mm and grade 1 (Nottingham 3/9). ER and PR were both in the 90's. I'm young (46). My team all agreed that they would not recommend chemo, my tumor would not likely respond much to it and the risks would outweigh benefits. I thought about pushing for the test, but decided against it.
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my Oncotype was done on the biopsied tissue, and it came back 23. I was 48 at time of diagnosis, and had one positive node. The combo of my relatively young age, intermediate oncotype, grade and positive node caused my MO to recommend chemo. If any one of those three factors was not in play, I would not have had chemo.
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Sjacobs:
Are you certain they used your biopsy tissue for the test? You first mentioned oncotype about two weeks after your lumpectomy, and that would be within reported turnaround time for the test had surgical samples been used (a week on the fast side to two weeks). Wouldn't the oncotype results have been available well before your 9/23 lumpectomy if the 8/26 biopsy tissue was used?
BarredOwl
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BarredOwl - yes, I'm sure that I had the Oncotype,results before my lumpectomy. I am right now looking at my pathology report with an addendum added on 9/12/14 that includes the Oncotype score. Biopsy was done on 8/21/14. I received the results of the biopsy on 8/26 without the Oncotype. It was only during my post lumpectomy appointments on Oct. 6 that the Oncotype became an issue. According to my MO, it was a very close decision whether I should have chemo or not, the intermediate Oncotype score helped push the decision toward chemo
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As you can see from my signature, I was diagnosed at stage 1, grade 3, PR/ER positive, HER negative with an Oncotype score of 23. I was 45 at the time of diagnosis and everyone says that is young. My MO recommended chemo and I completed 8 infusions and worked through it. There were days here and there that I did take a day off work or so, but it is doable. There are plenty of drugs they can give you to help with nausea, mouth sores and things that chemo may bring.
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I am 41 and had an Oncotype score of 27.
During the lumpectomy, I had clean margins and no cancer in the lymph nodes. My tumor is 95% ER+ and 90%PR+, so Tamoxifen will (hopefully!), benefit me greatly!
That being said, my oncologist was honest with me and told me that he couldn't know for sure if the benefits of chemo outweigh the risks. Given my age, he wanted me to do chemo anyway.
I thought about it for days, weighing all the pros and cons.
In the end, I decided AGAINST chemo. Without knowing for sure that I would receive some benefit to having chemo, I just couldn't put my body through it. The side effects of chemo scared me greatly and some never go away.
If I knew that I had at least a little benefit to having chemo, I would have done it. But, that wasn't the case.
In the end, my MO was very supportive of my decision. I went ahead with radiation and am now on Tamoxifen, which I will continue for 10 years.
Did I make the right choice for me? Yes, of that I have no doubt. I do not regret my decision. Will the cancer come back? Who knows. I know of women who went through with chemo and their cancer came back. I also know of women who didn't do chemo and their cancer came back. To be honest, I think it's all a crap shoot. We do the best with the info we have at the time, make the decisions we feel are right, and move forward.
That's all we can do. -
It is a crap shoot. My Oncotype score was 11. My tumor was deemed non-aggressive. My test results came back before I met with my Oncologist. In fact she recommended the test because I had a micromet in my SN. So glad she did. My BS said it would get me chemo. Oncologist disagreed. I can't say for sure I would have done chemo if I had had a high score. Maybe I would have been too scared not to
Whatever we decide it is our body and our life. Just be sure not to look back and say what if. No guarantees.
Diane
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nachout, you may want to see if the mammaprint test is an option also. I am not sure of the criteria, but it was offered to me when I had a 21 score. I decided not to do it, because I wanted to get started on my TX and not wait any longer for results. For what it's worth, my chemo wasn't really too bad...at least, not as bad as I had invisioned. My grade changed from 3@ BX, to 2 @ surgical; but, it may have been a different pathologists "opinion" that changed it. So, with that, and otherwise, in good health, I decided on chemo. Hard decisions for sure. Best wishes.
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BlueHeron, thank you for posting that I am struggling with that right now wondering to push for the test or not, my MO said she wouldn't recommend the test since mine was so small 8mm and 99% ER and 99% PR. I have trusted her 100% in everything else
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I am waiting on oncotype to come in and will find out my score a day before my revision for positive posterior margin on last lumpectomy 3 1/2 weeks ago. Mix up on path results. Surgeon didn't see positive margin and told radiation oncologist it was negative and he wanted to start radiation, but i got copy of test results and had to be the one to inform oncologist of positive result. He sent me back to surgeon and now i am having revision that could have been done already if doctors would have read results right. I'm guessing that if I have any positive margins again, I will have to have chemo. Wait, wait, wait is all I seem to do. Diagnosed early January and had to wait for biopsy, wait for genetic testing which w as positive for unknown variant of palb2 gene. I am only 41 and cancer was found due to pain in right chest into shoulder which turned out to be partial torn rotator cuff and first mammogram ever showed my cancer. I will now have to wait again up to 4 weeks after surgery to start any treatment. The unknown is hard. I didn't want chemo either, but the longer I think on it, the more I think I will do it if my oncologist recommends it
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Lovinggrouches-
We want to welcome you to our community here at BCO. We're sorry for what brings you here, but we hope that you find the support and encouragement you need as you begin down this road. The waiting is so hard! We hope your results come in soon, and things start moving a bit faster. Please keep us posted!
The Mods
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i would also recommend the Mammoprint analysis AND your case be presented to a tumor board. Furthermore, register on the NCCN website and read the professional version of the breast cancer treatment guidelines. Also make sure to read the footnotes and discussion section of the guidelines!
Good luck! Knowledge is power! You have very good prognostics, so you will have many good choices ahead!
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thanks so much! I will be sure to do that!!
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hi
Had a 26 or 27 on oncotype. Was 48 with 2 young kids. Decided on 4 rounds of A/c. Surgeon and onc agreed. I had no nodes. I decided I would probably always worry so I did chemo. It was hard but I don't regret it. I
This is a personal decision. Gather all your info, recommendations, opinions. Then think about how you feel. You will know what the right decision is when you need to know.
Good luck
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I am glad I did not I do chemo, I trusted my instincts. However, I was under the impression that AIs were safe not so sure now. I did almost 4 years I think I am done. Still have side effects that are QOL issues.
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Very happy to have found this page, as I too am struggling with the chemo decision. My oncotype came back at 27 and I'm 95% ER 0%PR. Clear margin lumpectomy and nothing in the lymph nodes. Stage 2a, grade 1.
At first I was absolutely against putting my body through it and I'm still struggling with the negatives outweighing the positives. Both my oncologist and surgeon recommend. Such a crapshoot- and by far the hardest decision I've had to make.
Moondust, I'm curious where you got the oncotype scale change information.
Thanks ladies- it's great to know there are others out there.
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Moondust - Like ChloeKitty (above) I'm also eager to learn where you got the Oncotype scale change information. According to my MO, only the OncotypeDX "low"scale results were published. Intermediate is still being studied.
Hope to hear more info from you.
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The tumor board that discussed my case were the ones that felt the Onco scale would be changing soon. But the change is not official and nothing has been said by Genomic Health. My tumor board felt that, based on recent studies, the low category would end at 10, the intermediate would be 11-25, and high would be 26 and over.
I wish I could edit my original post to make it clear that the future scale change is based only on opinions I have heard, not any official statement, but there is no longer an edit link!
When oncologists use the Onco score to make a decision in recommending chemo, they don't necessarily all use the same cutoff points. Their decision may depend on other factors, including how well they think the patient will cope with chemo. The benefits have to outweigh the risks. There are some great podcasts here if you want to listen to oncologists discuss different studies and patient cases. Many times they will talk about how they arrived at a certain decision about a treatment plan.I have listened to some of the Breast Cancer Update podcasts and also the Breast Cancer Update for Surgeons.
Chloekitty, it certainly is a tough decision about chemo/no chemo. I think the PR- gives us a higher risk and perhaps the AI therapy does not work as well. But don't let them rush you into a decision. Take time to consider everything. If you decide to have chemo, leave yourself enough time to plan out things. You are very similar to me, except I have 80% ER and 40% PR.
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just had my first visit with medical oncologist yesterday and oncotype scores aren't in yet. More waiting. He also discussed about scores and how the low score results are in and he stated that the intermediate score results should come out some time later this year. He does not plan to do chemo on me unless mine is in high category, of course that could change depending on how my reexcision results come out from the revision I had done today for a positive margin. A friend of mine is having chemo based on positive margins after her second surgery, so more waiting :0) I am er- 95 percent and pr- 75 percent and he said I would have to take tamoxifen for 10 years because I'm so young I was borderline her 2 at 1.5 but they consider that negative
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Chloekitty, we have about the same diagnosis, Tx so far, and timeline; I'm 45 and in Sacramento. Am awaiting Oncotype scores while trying to transfer to a different oncologist. Terrified of chemo -- figure I can get through just about anything but. Will keep fingers crossed for you --
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I got my Oncatype. Back two days ago 25... iDC, stage 1a, 1.1, low grade , 0/2 nodes, clear margins, tubular and cribriform.... I am 63 yrs old. Er+, pr -, HEr2-... Got back a Mammoprint the same day that said low risk... I am going with that. No chemo. 20 rads and then tamoxifen .... Without the Mammoprint they would have been doing chem
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I got a 20 on the oncotype, and OD recommended mammaprint to settle the matter, but kaiser won't pay for it since they paid for the onco. I got a Ki67 of 35, but have been told that is highly variable. Mammaprint is 5k, I'm willing to pay for it if I have to ... I'm foregoing reconstruction and wish Kaiser would use those funds instead on this mammaprint- which I understand is the mother of all testing.
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Lisey -
We're all different but my OncoDX was also 20 (intermediate). I was told OncotypeDX was more definitive than Mammaprint so I guess there are varying opinions.
Have you gotten a second opinion from another MO? Please do not hesitate to do so.
For the record, I didn't have chemo - 2 MO's advised that benefits wouldn't outweigh the risks.. I had ILC (you had IDC) and I was 62 yrs old at diagnosis - guessing you are younger. Those are also factors that go into the chemo/no chemo decision.
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I know Moondust posted back in March, but I think the lower range numbers she referred to can be found in this article from BCO. http://www.breastcancer.org/research-news/oncotype...
I'm going a bit crazy as it taking 4 1/2 weeks to get back my onco numbers. And it is 6 weeks to get my genetics tests back. Waiting is certainly the hardest part of a cancer dx!
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It should not take that long for results for theOncotype score. It took that long for me because the MO or lab didn't follow through. I called Genomics and found out they had not yet been sent.
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My oncotype score came back in 2 weeks. That was in 2011.
Diane
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