Oncotype Dx test...
Comments
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SKHunt--as you are post-menopausal, node-negative with a low oncotype score, I'm really surprised they're not suggesting hormonal therapy for you. I think the second opinion in your case is a good idea.
My score was 18, but I had a large tumor (2.7cm) and was 38 at diagnosis. So I chose chemo, but if I had been in my 60's at diagnosis, I would've gone with hormones only.
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Thanks for your reply. This is all new to me. Is the hormonal theapy the pill that I will take for 5 years. They are suggestioning that after the chemo. I just don't want to subject my body to chemo is not necessary. My tumor was large also. (3.2m) I think that is why they are pushing for chemo but with my nodes being negative and DX score on the low side I am hesistant about the chemo. I need all the support and help I can get at this point in making this decision.
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SKHunt, that is a big tumor, and you're right, that's why they're probably saying chemo. What grade is the tumor (1, 2 or 3)? That plays into it, too. I'd be more inclined to do chemo with a grade 3 tumor than a grade 1.
Yes, tamoxifen (hormonal therapy) is the pill one takes for five years.
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it is stage 2.
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dkhunt,
I'm 44, also er & pr + no nodes, my score was 12 and therefore my onc said no chemo just rads. I feel very comfortable with my decision as I know I will be vigilant about follow ups and so forth. My onc said to me that the side effects and % of recurrence with such a low score that the chemo was not justifiable. Hope this helps you on your journey.
Trish
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skhunt,
My tumor was very small (8mm), however, I had a mast since my whole breast was dcis with the 8mm invasive. They didn't find that until after my mast. Another story. But I agree that the reason for the onc pushing chemo is due to the size of your tumor.
Trish
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Hello Everyone,
This is my first time on the list. Thanks for great information. I was diagnosed with BC in July. ER+, node negative.2.3 cm.Very low(negative) HER2. Lumpectomy in Aug.Had Mammosite targeted internal radiation last week. Had oncotype done (thru insurance - not sure about payment outcome yet). got recurrance score of 15 .Am very glad had it done. Am now collecting info about chemo/hormone therapy since I am in the grey area. Appt. with chemo doc Oct 5. Any other "grey areas" out there?!
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Hi amyrlcsw - I too scored a 15 on the Oncotype DX. I met with my onc last Friday for the first time and walked in to his office fully convinced that I didn't need chemo with that score. He explained the "gray area" to me and he told me that he couldn't tell me what to do. He said that I had to follow my gut. After much consideration and talking with my husband, I have decided to do the chemo. I have two young children and I feel that I have to do everything in my power to make sure that this doesn't ever come back. I know that there are no guartentees, but at least I can say that I did everything that I could. My 4 treatments of Taxotere/Cytoxan start on Monday. 12 weeks of who knows, for a long lifetime to see my girls grow up. Tough decision, but I feel confident that I have made the right one. Best of luck with your decision!
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HI Urbie and amyrlcsw,
I've posted on this several times. I got a 16 on Oncotype, and my onc. couldn't steer me one way or the other. I got a second opinion and he felt I should do it because it was grade 3 and 1.9 cm. I have 2 children and wanted to do everything possible to fight this. I also had a bilat. mast. in July. Fortunately, I won't need rads. I have had 2 of 4 Taxotere/Cytoxan treatments and it's been completely doable. Except for a few days after treatment when I'm really tired, I've been leading a normal life. Good luck!
Eve
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Hi Eve - I am so happy to hear that you are doing well with the TC treatment. I found out today that my insurance won't cover the Emend and I hope they can find something more affordable that will work. Did you use Emend?
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Hi Urbie,
I hate to say it, but I've been one of the lucky ones who hasn't had any nausea with this treatment. My onc. had told me it was much easier to tolerate, and so far it's been true. They do give me anti-nausea meds in the IV, but I haven't had to use anything else (they gave me rx's for compazine and zofran). I do take an Ativan at night to help me sleep and make sure nothing happens with my stomach during the night. I have had heartburn, a horrible taste in my mouth and fatigue. I have also been getting acupuncture. Don't know if it's helping, but it can't hurt and is very relaxing. I just make sure to have down time for a few days after my treatments. My kids are very helpful, and I don't really care what my house is like, if laundry is done etc... during that time. Good luck. I'll be thinking about you on Monday.
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Hi I'm 56 and I just met with a chemo Doc today. He said that I should consider chemo because all it takes is 1 cell to be missed and it could get into other areas in my body. I went in there thinking that I was just going to listen to him. My mind was already made up to just do the hormone blocking treatment. Now I don't know what to do! I sound like a lot of you girls, stage1. grade2 IDC, no nodes that have cancer in them ( took out 40 tested 16) all neg. Full body bone scan...abdominal ultrasound. chest xray, (all clear). Because the initial path report said that lymphatic invasion was present he said that is the worry. But I thought if you had clear margins and everything else was neg. that you are cancer free. I wish that we had an Oncotype test here in Canada. I mentioned it to the Doc and he went on-line in front of me to see what it said, he had never heard of it before. He blew it off as if it was nothing, not important.
Good luck to you all and next year at this time we will have maybe forgotten a little bit of this horror story.
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Hi llivtswm - Why did they take 40 lymph nodes? Do they not do sentinal node biopsys in Canada?
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Hi Urbie...I went originally for a SNB but she couldn't find it after I was injected with the dye in 5 spots on the nipple area, so she gave me a couple of minutes in pre-op to decide if I wanted the axillary disection or wait another month for that surgery. I opted to have it. She took out 40 nodes and they tested 16, all were neg. for cancer.
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I am VERY Pro Oncotype DX Testing
I was one of the earlier takers of the test back in June of 05. I was Stage 1, Grade 2, 1.1 cm tumor, ER+100/Pr-, node negative, no lymphovascular invasion. I was in the grey area for chemo though my onc was pushing for it because of my age, 33. I got the test done and scored 36 which is high, it means a 25% chance of recurrance without chemo.
I trusted the test and did AC&T x4 dose dense then went on to do Tamoxifen and Lupron. November of 2006 I metastize to my bones and validate that test. Everyone including my oncologist was shocked that I recurred. That high score always made me nervous.
Get the test done. My insurance denied it and it went to every level of appeal. They billed me very long after that, at least a year after the test. They offered me a payment plan and I said I couldn't pay. I haven't received a bill since and that was close to a year ago. I think/hope they wrote it off.
Amy -
I agree. The people at oncotype were wonderful. I also had the oncotype test back in 2005 and opted out of chemo because my number was low -13. They will do whatever they have to to get the money from your insurance. I think they did a great job.
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I just received my Oncotype score which was 11. My doctor is part of the group doing the research on using Oncotype with positive or negative lymph nodes. I have IDC tumor 2.2, Grade I, ER(4+)PR(4+), negative lymph nodes, but "few Isolated Tumor Cells". My doctor is very comfortable with my decision to opt out of chemo. I also had my ovaries removed and lumpectomy w/radiation. I will start Arimidex after the rads. Anyone else have a diagnosis similar?
Melissa
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In June I was diagnosed with invasive ductal carcinoma and a component DCIS, negative margins, negative sentinel node, radiation therapy for 6 weeks. The medical oncologist wants me to take tamoxifen. I really do not want to. My OncoDx returned 8. I do not have my uterus, but still have the ovaries. Do you think the tamoxifen is necessary?
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Has anyone enrolled in the Tailorxtrial had this concern: when my oncotype report came back and the doctor gave me a copy, my name and all identifiers were blacked out. It is a big decision to rely on this score to determine your future, and I think I should have a report that I am sure is mine, and that shows they tested the right tumor (original surgery, not re-escision). For some reason I am having a hard time getting that. Am I unreasonable to expect it? Is there something about the trial that requires this? Thanks.
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Hi everyone,
I guess I am a late-comer to this particular thread, but thought I would post anyway since my guess is I won't be the last person going through this. All of the above comments have been extremely helpful for me. I just had my consultation with my oncologist about my Oncotype score yesterday. I scored 11. My oncologist is a principal investigator for the TAILORx study in our area and gave me the option of participating in the trial. I was totally shocked at my emotional reaction yesterday (it was off the scale by the end of the night). I thought I had decided how I wanted to proceed 3 times...and the decision was different every time. All in less than 24 hours!
It was so reassuring to read the above comments and know definitively that not only am I not alone, but that there are many folks out there who have been given a similar choice and chose to go without the chemo. That has been the biggest struggle for me...trying to determine if my fear of the unknown (what if I don't take chemo and it comes back?) outweighs the benefits of not having chemo. Clearly it is a personal decision for everyone. I really think my decision now is to participate in the research or not--and give up the final choice in the matter of whether to do chemo or not.
Anyway...mostly I just wanted to say thanks to those who have gone through this and shared their experience. It has been very helpful.
Jolene
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My name was blacked out but you could still see through the marks that it had my name, DOB and date of surgery correct. I scored a 9 so my oncologist said, "no chemo". He didn't even entertain the idea. My cancer was ILC, 1.1 cm, no nodes, clean margins except for a few scattered cytokeratin positive single cells which made me nervous. The doctor said it was probably a result of the surgery spreading the cells a little but chemo wasn't necessary. I am doing great and taking Tamoxifen since I finished rads. I think I will change to Armidex next year and continue with that for 5 years.
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Mamhop - I scored a 15 on the Oncotype and chose to do the chemo and have finished 3 of the four Taxotere/Cytoxan treatments. In my opinion, it is totally worth it and not that bad. The side effects are annoying but doable and even being bald isn't so bad. Hair grows back, but my kids only have one mom. I couldn't take the risk and not do it. Good luck!
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My best friend was diagnosed with breast cancer about a month and a half ago. She just turned 58 years old. She had a 1.2cm grade 1 tumor that was ER positive, 3 lymph nodes were taken and all were negative, it was a slow growing, "non-aggresive" tumor. Very low risk of bc reoccurence based on the personality profile of her cancer. She has a masectomy a month ago because she also had speckling of DCIS throughout her breast in addition to the tumor. When discussing her treatment therapies, arimidex was a given, but there didn't appear to be a benefit from chemo.
When her doctor brought up the onco test, my friend almost passed it up. She just got her recurrence score back today and she is a 56, which carries a 34% risk of cancer reoccurence in the next 10 years. Please don't assume your treatment without getting the onco gene test. It's well worth the money in comparison to your health/well being and quality of life. The personality of cancer is just that. It's subjective. That is why they've made progressions into gene mapping and science that is more reliable than guessing based on characteristics that may or may not be always be accurate. Just my 0.02 for those of you questioning the impact that this test may have on you and your families.
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i just got my socre back. 12- i am stage 1 bc grade 3, 1,5 cm and age 50..my onc is still saying yes to chemo.. er/pr.positive..help? why?
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I do not know why your onc is still recommending chemo with a score of 12. I'd ask the oncologist that specific question and have him explain why he's recommending chemo. I'd also seek a second opinion from another oncologist.
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This comment is for Wenda who asked if she still had to tamoxifen with a low oncotype dx score. The test is only valid for women who will be doing tamoxifen--that's what all the statistics are based on.
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I wanted to way in on the Onco test also. I had the test done when it was relatively new. June of 2005. I had a 9 mm tumor, node negative, grade 2 and the onc said that all the characteristics of the tumor made it a good prognosis for no chemo. I was 44 years old so they were a little concerned about my age. My wonderful (and up-to-date) onc insisted on Onco test. We were shocked when it came back 33 1/2. I ended up doing dose dense chemo, 4 rounds of AC and 4 rounds of taxotere. My onc said that just 9 months previously they didn't even have the test available and I would have ended up not doing chemo. At that time my onc said that it was the highest score she had seen. Now there have been many more women tested and I'm sure she has seen these high scores since. Also, my insurance paid for half the test and Genomic Health called me to let me know that they were righting off the rest. Bless them.
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I'm in the process of being Onco tested. I had a 1.5cm tumor, Grade 1, ER positive and 1 positive node. My physician is considering less or no chemo if my score comes back low. My online research has led me to information about this new approach even in node positive subjects, but they have all been post menopausal. Does anybody know of this approach in premenopausal women. I'm 44.
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I got a score of 20 ( 12% of recurrence) and my oncologist said no chemo because my tumor was 5mm, 100% Er positive 95% pr, no nodes, stage 1, grade 1. Since I am so hormone positive, we are just doing radiation and taxofin. I am 36.
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Harley...
Yea...glad you'll have this info to help w/ treatment decisions. I got my test results in September...my score was 18, so no chemo for me. Re: how long for results--I was told ten days to two weeks. The results went straight to my onc, and I found out 2 weeks to the day after the test was ordered. Maybe you could ask your onc's office to call you as soon as the results come back rather than waiting for an appt.
Good luck...keep us posted!
Lynn
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