Oncotype DX test score at 18 - chemo or not?
I'm debating whether to proceed with chemotherapy that my oncologist is recommending. I'm age 40, had a double mastectomy and reconstructive surgery, and just got the results of the Oncotype DX - score is 18. I know that my score is at the bottom of "intermediate" risk, but factoring other tests and procedures gives me reason to beleive/hope that I may have low risk of recurrence.
My other tests: Blood tests were fine, bone scan & full body scan, xrays, ultrasound - all fine. Lymphnodes clean. Tumor was 1.6 cm, margins were clean. The cancer did not spread. Cancer Type: IDC, stage 1 grade 2. Genetic gene testing (BRCA1 and BRCA2) came back "No mutation detected".
Given the positive results of all the tests & procedures besides the Oncotype DX, what would you do - or what did you do?
Thanks in advance.
Comments
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Hi Julie,
I didn't have a choice to make. My onc said no chemo (stage 1, grade 1, oncotype 8, 1.2 cm IDC)...chemo wouldn't be much help. So on to Arimidex for me. I did have BMX (by choice, not MD recommendation), so no radiation either. I am 58 years old.
Given your age, and "bottom of the intermediate" oncotype, I would do chemo just to make sure nothing remains. I, like you, had very positive prognostics but I had decided if my oncotype was above 15, I was going for chemo. That was my personal cut-off point, and my onc seemed to agree. I hate the thought of chemo for you, but having to look back and say I should have done it would be worse.
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Hi Julie,
I had bilateral BC and they oncotyped both tumors. One was a score of 14 and the other 19. I spoke to 4 oncologists, none of whom could tell me for sure that chemo would be effective for me. So, I didn't do it. I guess it was a good decision; I am 2 1/2 years from my diagnosis and seem to be OK. I do worry, however, that I could be at a higher risk of recurrence because I didn't have chemo. It seems as if every other BC patient I know did have it. I am taking tamoxifen and tolerate it well, so I'll be able to stay on it for all five years. It's a really tough decision - good luck to you.
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I was diagnosed at age 54 after my annual mammogram. The radiologist was suspicious of what she saw so she ordered the biopsy and it came back as breast cancer. A bilateral MRI was done and one side had a large area (4x6 cm) of lobular carcinoma in situ. I had a mastectomy on March 19 and they found .7mm of invasive lobular carcinoma in the middle of the 4x6 cm mass. No node involvement and my Oncotype score was 18. My oncologist did not recommend chemo. She felt it would do more harm than good in my case. Lobular carcinoma is known to respond better to hormonal therapy than chemotherapy. I wonder every day if I should have insisted on chemo but I trust my team of doctors. My hospital is a comprehensive cancer care center and there are only 42 of them in the country. My first mammo on the other side is Jan. 27th. I am wreck thinking, worrying about it. I read lobular breast cancer is known to creep to other breast but my doctor does not feel that is true. She did not recommend removing the healthy breast. I guess if I have to do it again, I would be okay because I know the drill. I have an amazing plastic surgeon and just finished breast reconstruction (tissue expander) My new nipple looks great. Last step is the tatoo of the areola in February and I am done.
But I worry every day that this beast will come back.
I hate living like this.
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You can see my stats below. I am having BLMX and reconstruction with TE/implants. I already had a lumpectomy and got the oncotype on Friday of 17. That is technically in the low risk, but it's the highest number in the low risk group. It is freaking me out a bit - I was hoping for a much lower score. I am 45 with a 4 year old son so that is why I have opted to go BLMX. I have no family history of BC at all. I had told myself if I was in the intermediate group and given a choice I would do the chemo (ICK!!!!). I have not been able to speak to my med onc yet about test results. The nurse called and said you are in the low range so the dr won't be recommending chemo. I said she needed to have the doctor call me because she told me in the intermediate range it was my choice and I am only 1 point below the intermediate range. I am waiting for her to call me back on Monday to discuss. Right now, if they will give chemo to me, I will probably do it. I figure it's my shot to kill anything lerking anywhere. I have not had any scans at all offered to me yet....I need to ask about that too. Let me know the outcome or private message me if you want to compare notes.
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I am 58 and my test result was 17. Due to my age and the potential side effects from chemo, I decided the risks of chemo outweighed the benefits.
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As I understand it from the docs, there may be single cancer cell in the lymph or blood systems that can't be detected by current methods - although there is that new test being tried at MD Anderson and 2 or 3 other places. I want my daughter to go after her cancer aggressively and take every step to prevent reccurance. She has no choice about chemo due to one node positive. My fear is that too many woemn are being under treated only to come back to 2 to 5 yrs with another tumor.
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Mother, I had a micromet in one node and my onc said it most likely went there after the biopsy. I am comfortable with my decision. If I were 20 years younger, I would most likely have done chemo.
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Julie
big hugs--this is so hard..it often feels to me that more people come back in the intermediate range than any other--and that they keep shifting what the actual ranges are. My score was a bit higher than yours- and I had young children, so I just decided to do it---I knew that I would not be able to sleep at night if I didn't, but that is just me. I also had no nodes, clear margins, etc. I can tell you that I have not lost one moment's sleep since then...... but again, my score was in the low 20's- although at that time, anything over 30 was considered high-so in the 20's was still intermediate and grey......
Talk to your onc about what kind of chemo they might recommend---I did 4 rounds of AC over 8 weeks--it felt like it was over before it began..... best of luck----
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gee, you could be me...I had the almost exact same diagnosis. Only thing is most likely your age. You are young for this (my journey began at 46, I am now 55) and I had this twice. First time, only DCIS, had rads and lumpectomy, tamoxifen for 5 years.
Was your cancer aggressive/HER2Neu+/ER+? If any of those are there, it shifts the balance somewhat. I was unable to do rads, due to prior rads on same breast, so I had no choice re: chemo.
Since I have had this twice, I'd opt for chemo. IF you can, ask for CMF and see if onc agrees. It is a more tolerable and do able regime (only 1x/every 3 weeks), no or minimal hair loss and you won't feel very sick. Many women have worked thru it.
I could not do rads, so I am assuming that you had that. I wish that first time I'd thrown everything in the book at it! PM me if I can help you further and good luck.
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Thanks for all of the replies. I am still struggling with my decision which I need to make within the next few days.
My oncologist is highly recommending that I go ahead with chemo, which isn't surprising to me considering the risk of lawsuit if it were to come back and knowing they didn't do everything possible. Also, chemo treatments are expensive - so that probably weighs on the recommendation.
I am leaning towards not doing chemo because the 5% greater recurrence rate by not having chemo (11% tam only vs. 6% tam+chemo) doesn't seem like a significant difference to me. I am also afraid chemo could "stir something up", and am not comfortable with the powerful chemo drugs in my body. If any of my other tests had turned up that the cancer had spread beyond the tumor, or my OncoType DX test was a bit higher, my decision to proceed with chemo would be much more clear. I consider myself very lucky at this point.
Is there anything else I should consider before declining chemo, or would you do the same?
Thank you in advance.
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Thanks for all of the replies. I am still struggling with my decision which I need to make within the next few days.
My oncologist is highly recommending that I go ahead with chemo, which isn't surprising to me considering the risk of lawsuit if it were to come back and knowing they didn't do everything possible. Also, chemo treatments are expensive - so that probably weighs on the recommendation.
I am leaning towards not doing chemo because the 5% greater recurrence rate by not having chemo (11% tam only vs. 6% tam+chemo) doesn't seem like a significant difference to me. I am also afraid chemo could "stir something up", and am not comfortable with the powerful chemo drugs in my body. If any of my other tests had turned up that the cancer had spread beyond the tumor, or my OncoType DX test was a bit higher, my decision to proceed with chemo would be much more clear. I consider myself very lucky at this point.
Is there anything else I should consider before declining chemo, or would you do the same?
Thank you in advance.
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Oncotype DX Influences Breast Cancer Treatment Decisions
The Oncotype DX® breast cancer test may change treatment decisions for more than a third of women with early, estrogen receptor-positive breast cancer. These results were presented at the 2010 San Antonio Breast Cancer Symposium.
The Oncotype DX breast cancer test measures the expression of 21 genes in a sample of tumor tissue. The test generates a Recurrence Score® that provides information about the likelihood of cancer recurrence and the likelihood of chemotherapy benefit in women with early-stage, estrogen receptor-positive breast cancer.
Previous studies have indicated that use of the Oncotype DX breast cancer test can influence breast cancer treatment decisions. Test results may, for example, change the treatment recommendation from chemotherapy plus hormonal therapy to hormonal therapy alone (or vice versa).
To provide additional information about the impact of Oncotype DX on breast cancer treatment decisions, researchers combined information from seven studies that enrolled a total of 912 patients.[1]
- Physicians who used Oncotype DX changed their treatment decisions for over one-third of patients.
- Overall, there was a 28% reduction in use of chemotherapy as a result of the test.
- 4% of women had chemotherapy added to hormonal therapy as a result of the test. These women were initially considered low risk but were reclassified as high risk based on their Recurrence Score.
These results provide additional evidence that Oncotype DX can play an important role in treatment decisions for early breast cancer.
In another study presented at the San Antonio Breast Cancer Symposium, researchers evaluated a combination of the Oncotype DX Recurrence Score and factors such as tumor size and tumor grade.[2] The combined score did not predict chemotherapy benefit as well as the Recurrence Score alone.
References:
[1] Hornberger J, Chien R. Meta-analysis of the decision impact of the 21-gene breast cancer Recurrence Score in clinical practice. Presented at the 33rd annual San Antonio Breast Cancer Symposium, December 8-12, 2010. Abstract P2-09-06.[2] Tang G, Costantino JP, Crager M, Shak S, Wolmark N. Comparing the prediction of chemotherapy benefit in patients with node-negative, ER-positive breast cancer using the Recurrence Score and a new measure that integrates clinical and pathologic factors with the Recurrence Score. Presented at the 33rd annual San Antonio Breast Cancer Symposium, December 8-12, 2010. Abstract S4-9.
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The reason why I am posting this important study is to reinforce how the Oncotype DX test is affecting treatment decisions. As stated earlier in this thread, the underlying reason for the test is to add one more piece of information to the decision process to help determine who would benefit from chemo, since it was previously known that a majority of early stagers were being overtreated with chemo.
Southport - When you mention it seems like every other woman was receiving it...makes you nervous to hear...remember that the landscape is changing dramatically in the last year or two with the advent of the Oncotype DX test. Hopefully, once the results of the TailorX study are known, even more women will be spared chemotherapy.
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Hi Julie -
I was diagnosed back in 2005 with a stage 2 (2.1cm), grade 1, er/pr+, her2+ tumor. I was 44. My oncotype was 17. The test was very new back in 05 and my onc strongly suggested chemo due to age and tumor size. My surgeon was more cutting edge and she encouraged me to have the Oncotype testing done, over my Onc's mild objections. (because he was sure I would be high risk and testing was a waste of money). He did, however, better educate himself about the test while waiting for results, and once that 17 came back, he changed his tune to "no chemo" because the risks of developing complications, including leukiemia down the road, more than outweighed any slight benefit I might get from chemo.
I think it's important, whatever your decision, that you make it and don't look back. I knew that if my cancer ever came back (so far so good) that I wouldn't beat myself up over not doing chemo. I look at it as a weapon I still have in my arsenal, if the need ever arises.
Best wishes to you!
Stay strong,
Phyllis
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My surgery was in 2008.I was 65. Everything placed me in the low risk category. Then my Onco Dx Score turned up as 31! That put me smack on the border between Intemideiate & High Risk. At first my gut reaction was to do chemo. My husband the engineer got involved and charted out my chances if I took chemo followed by Arimidex for 5 years vs not doing the chemo & only taking Arimidex. Turned out having chemo would only improve my survival by 3%! We dicided the risks of chemo were not worth such a small improvement with chemo. My oncologist said he was comfortable with my decision.
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HI there, just a thought, you may also want to have a few Oncologists weigh in and give you a recommendation. I saw 3 for opinions as I was young. 45. Most Oncologists given what you shared on your path would be comfortable with you not opting for chemo. I too struggeld with the decision and decided against. As your Oncologists what the "true" % benefit is for you which I believe they can give and deduct the % of side effects.
Good luck on your decision
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Thanks for everyone's input. I've decided to not go ahead with chemotherapy mainly due to the small statistical benefit.
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My DX score was 29, the high end of the gray area. My med onc suggested chemo but ran Adjuvant survival graph, decided little benefit compared to risk and recommended Arimidex. I've been researching everything since diagnosis. I did not intend to have chemo and after researching the side effects of Arimidex I've decided to not go that route either. The possible benefit of 2 - 3% increase in survival simply do not outweigh the side effects as far as I'm concerned. I compared the Onco report with Adjuvant and created my own graph using Lifemath.net which matched the Adjuvant chart pretty much. The Oncotype DX score is comprised from a very small group which included Stage 2 and Tamox treatment which is for premenopausal women; not postmen like me. Do your research; check the math and do what's right for you; doctors don't know everything and remember there are no guarantees.
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Hi everyone,
Julie it was a very hard decision, best wishes to you!
I would like to ask from you about oncotype, too. Please help me, if it's not the right place. I live in central europe (as you see my english;) ), we don't have any oncotype yet. I wonder what would be the decision, if we had this test. If it help the treatment decision, I would go and by it myself, if it's possible.
I'm 35. IDC, 1 cm, ER/PR +, HER2 + (but no amplification - onc said it means it is not positive-not treated as pos, but I don't understandit exatcly). I had lumpectomy on 27/1/11 - clean margins. Micrometastasis was found in the sentinel lymphnode (intraoperative was it ok). Now I'm waiting for axillary block dissection, then I'll have chemo, rad and hormontherapy. If I lived not here what would happen to me?
Oncotype is made only with totally negative lymphnode, or with micrometastasis as well?
A friend of mine, who deals with chemo drugs said, that maybe it would be useful to do the test in my case as well. I try to think about only the mortality (cancer and chemo SE), and if the chemo gives me 1% more chance to live longer without cancer, I think I must choose chemo.
thanks your help in advance.
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My Oncotype story is a little different....I had problems finding an oncologist on my Medicare plan that I had confidence in, and had already decided against chemo due to my age and physical conditions. I finally found an Onc that I trust and the first thing he did was order the Oncotype test.
What was discovered is that there was a huge discrepancy between the Oncotype test and the early pathology reports I received post biopsy but pre surgery. The major discrepancy was that the HER2+ FISH diagnosis in the pre surgery report was found by the Oncotype test to be just barely within the "equivocal" range and within the range of error. The ER number was also much higher on the Oncotype.
I had a lumpectomy and APBI (partial breast irradiation) and will be treated with Tamoxifen due to possible cardiac SEs with the AIs. Previous oncology suggestions for treatment were TCH based on the early report.
My Oncotype score is 26, mid-range intermediate risk. If I were younger and had young children I would choose the chemo path. As it is, I chose quality of life. After the scare of the early report, a 17% recurrence rate which is not much different than the rate with chemo is, at my age "doable".
My oncologist said that he thinks the Oncotype test is more accurate due to it being done at the molecular level and recommends it for all his ER+ patients. I am highly disappointed with the pathology report by the local lab. Many ladies say their FISH test was not done locally, but mine was.
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They are now doing the Oncotype test with one positive node. I had a micromet in my sentinel node that was not found during surgery.
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worldwatcher - thank you for your rapid answer!
Does oncotype result has any affect on the type of chemo drug? I mean if the oncotest score is high I'll get harder drugs?
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Goodmood
I haven't had chemo, but from what I have gathered the suggested type of drug might be a combination of what is "standard of care" and your oncologist's opinion of what your particular tumor may respond to along with your personal physical condition. There are various results from the test that go into the final scoring from what I see. There is quite a bit of info at the following link:
"Oncotype DX represents the breakthrough of genomic medicine in the 21st century. The single biggest impact of Oncotype DX is that it allows me to tailor therapy to the individual patient. It enables me to understand the specific biology of her cancer and make treatment recommendations that are specific and unique to her." http://www.breastcancer.org/symptoms/testing/types/oncotype_dx.jsp -
Worldwatcher - thank you again, it was a big help for me!
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Hi there.I have an Onco score of 21 (recurrence rate of 15%), which is low intermediate, but the chemo onc is recommending chemo due to the fact that the pathology showed lymphvascular invasion and I am still at an age where it would (possibly) be a good idea (50). She has also told me that chemo could improve my recurrence probability by 3-5%. Pretty negligible in my eyes, especially since chemo only works on cells that are actively dividing at the time of infusion. I am Stage 1, Grade 1, so it is not an aggressive cancer and maybe they are not actively doing anything. The problem is that it has also been three months since my lumpectomy and time is fleeting - who knows if any of these cells in the lymph vessels have travelled elsewhere. My onc is recommending TCx4 - I really don't want to have chemo - feel risks out weigh benefits for me, but am frightened if I don't. You know the saying - damned if I do and damned if I don't. Sooo confused
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ch08567, Recently I was in about the same situation you're in now -- the difference being that my pathology was a bit scarier than yours (IDC, 3 cm. Stage IIb, Grade 2, 2/18 nodes, ER+/PR+ HER2-. plus [rare foci of] dermal lymphatic invasion). My Oncotype score was also 21, so I was sure I was headed for chemo. But my second-opinion oncologist surprised me by saying she would be comfortable with it if I decided against it. Alternatively she recommended mastectomy followed by radiation, and since I am postmenopausal, 5 years of Arimidex. I asked her, if it were her, would SHE have chemo, and she said "No." She also commented that even if I did have the chemo, there would still no guarantees. So I ended up deciding against it and am happy with my decision. That is not to say that YOU should not have chemo, but only that it's important for you to have complete confidence in your decision once you reach it.
BTW, my oncologist is at a teaching hospital and doesn't sell chemotherapy for her living.
As for bad cells traveling in lymph vessels, I guess that's what lymph nodes are for -- to catch the bad cells and stop or delay them from going distant sites. I wonder if your Onc will recommend that you have your remaining axillary nodes irradiated as a precaution.
I'm so sorry that you are having to deal with this. The indecisions and uncertainties are the worst! God bless, and good luck.
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Aza, thank you so much for replying to me. I would not wish this upon anyone, but such is life. I am determined to win, chemo or no chemo!!
I am beginning to feel more comfortable with the decision not to and hope I will be as comfortable with my decision as you are. The women on this site hve been so helpful.
I did ask about axilliary nodes being irradiated, but was told no. I am worried about heart damage when the rads are done. I had a friend who just passed away from heart failure this weekend (she was 49). She had BC 8 years ago, and was treated with chemo and rads. Wondering if this weakened her heart...
How long ago did you have your radiation? Wondering if I should have had a mastectomy, but I guess with BC you are always left wondering about what you could have done differently, and whether it will return.
Good luck with everything, Aza. I am thankful you wrote with your experience. Hugs
Christine
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Rads are much more advanced than those from years ago. I had IMRT which is more direct focused since my BC was in my left breast. There are many types of Rads. My Dad died of Heart disease when he was 44 so I did not want to do anything that would be harmful or make me more susceptible to heart disease. Oncotype 16 No chemo.
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I was 48 yrs old at DX, still 48 yrs old. Onco score 15. My ER & PR are both at 97%. I asked my onc to give me chemo and he assured me that the damage is far too great for very little benefit. I did NOT have chemo.
Julie775, our tumor size and grade are similar, talk to your onc about other factors,look at the ER & PR %, perhaps get a second opinion.
Good luck, I understand it is a tough decision above all the decisions since the DX. Please update us on your decision. Will be thinking of you.
{{{{{HUGS}}}}}}
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cho8567, Is your problem on the left, so that's why you're worried about damage to your heart? (mine ws on the right, so it wasn't an issue.) If that's the case, look for a state-of-the art radiation center that does very precisely targeted treatments with minimal scatter. I had 28 treatments plus 5 "boosts," ending on Dec. 17 2010. Feel free to PM me if you would like to. It wasn't a bad experience at all.
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