Long term "high oncotype test" survivors
Comments
-
Boys62 - that makes me feel a little more hopeful for myself. But I guess my higher Ki67 can push me out there with chance of recurrence. I try not to think of it, I know I did chemo and am taking the letrozole, but I still worry. Others tell me that the Ki67 could have been alot higher, it was on the low end of high. What are the zoladex shots for? I am taking Letrozole (fermara) and I take Actonel once a month, as the Letrozole put me at the beginning for Osteporosis in my spine and osteopenia everywhere else. Also increased my cholesterol which I am trying to get down without adding another pill. We were even diagnosed around the same time.
0 -
thinking positive- zoladex stops my ovaries from working so I can take an AI (femara) instead of tamoxifen since I'm not naturally in menopause
0 -
oh, okay. I had my ovaries removed even though I am post menopausal. I had a cyst on one that didn't go away so it was time after getting be to get rid of them! How are you doing on the Fermara. Are you on a generic
0 -
Yes, I'm on generic femara and doing well so far. I've only been taking it for 3 months though, I took tamoxifen for 6 months before that. I have hot flashes and minor joint pain, but nothing bad enough to make me even consider not taking it. I know I have to take these pills for a long time so I will just learn to live with any of the side effects
0 -
I agree with you Boys62. I would rather live with the side effects of joint pain then going through what we have in the past. I have been on it for 13 months. Hoping the joint pain doesn't get any worse
0 -
hi all and thanks for this thread! I did not have oncotype testing but my ki67 was 78! that combined with my two positive lymph nodes - I'm pretty sure my oncotype score would be off the chart!!! But means chemo is particularly effective. I elected the heaviest hit and pushed hard hard hard all the way through treatment to get done on time despite a plethora of problems . Thank you for sharing your stories those that are still disease-free.
0 -
what is the everolimus trial? I have similar pathology to you so wondering if I should ask about it???
0 -
hi think pos. They are testing Everolimus, which is currently approved for metastatic patients in early stage HR+/Her2- patients. You must take it in combo with an AI or Tamoxifen and be followed for 10 years. 50% chance of placebo. I am hoping to contribute something to research.
I would ask your MO, they are still enrolling new patients. 0 -
cajunqueen15..was there some criteria you had to meet? I would assume that they are trying to see if both drugs work better than just an ai in preventing stage IV?? Side effects if any ?
0 -
Finished with trx and NED at the end. No previous BC trx. They want to see if Everolimus increases survival rates and/or time to recurrence. According to MO I will know if I'm getting the drug as it will cause mouth sores. You only take it for 1 year but are followed for 10. Monthly blood work. I'm hoping I get the drug and not the placebo.
0 -
I wonder if I would be eligible since I finished chemo 13 months ago. My mo does no scans unless symptoms. Didn't have any scans before either except the MRI when diagnosed. Didn't even really do into details about percentages either. Did your MO give you percentages of reverence down the road. I really thought that being 13 months out I would worry less and less but it seems to be the opposite for me.
0 -
I think no. I'm pretty sure you have to start right away. I pinned my MO down for the numbers. He said 25-30% chance of mets within 10 years. I think it's a little higher because I was diagnosed post partum, which is a negative prognostic indicator. My cancer was freakishly aggressive.
0 -
Interesting read
Gene Test May Spare Some Breast Cancer Patients From Chemo
0 -
Is your oncotype your ki-67
0 -
Hi roserosie:
No, ki-67 testing from your pathology report is done by immunohistochemistry (IHC) for a single protein, and it is not the same thing as the OncotypeDX test for invasive disease. The OnctoypeDX test evaluates gene expression from 16 test genes and 5 controls to inform decision-making about chemotherapy in certain patients.
From another thread it looks like you are triple-negative. If so, you would not be eligible for the Oncotype test, which is only indicated in hormone-receptor positive, HER2-negative patients.
Formal Eligibility: http://breast-cancer.oncotypedx.com/en-US/Professi...
BarredOwl
0 -
Barredowl
Thank You for the information.
0 -
The article is pretty much useless. It reports about a “new test," and then identifies it as Oncotype DX--which has been around since at least 2008. The study, done in Germany, was small--not nearly as extensive as the TailoRx trial, results of part of which were released nearly 6 months ago. The methodology was faulty--even though the TailoRx data reported thus far on women with scores of 10 or below, it went on to say that there weren't enough instances of recurrence in women with scores 11-17 (nor in the official “intermediate" range of 18-30 as defined by GenomicHealth, the test's developer) regardless of chemo vs. no chemo. But the mutterings that “the ranges are about to change" are no doubt fueled by this flawed German study, which gave the 10-and-below group only endocrine therapy, but the 11-and-above cohort (85% of the study's participants!) was assigned randomly to, and I quote, “one of two chemotherapy regimens." In other words, nobody with a score of 11 and above got only endocrine therapy. The lead doctor in the German study described the 10-or-under-score women as “very low risk" (emphasis mine), which is NOT the same as saying that 11-17 is no longer part of the low-risk group but now “intermediate."
This is irresponsible lay medical reporting at its worst. And it's unnecessarily scaring the crap out of those of us scoring 11-17 who depended on our MOs' assurances that we were low-risk for recurrence/chemo effectiveness and that chemo's risks outweighed its benefits. Given the choice between a poorly-written and chronologically inaccurate layperson-oriented medical newspaper article, vs. the standards set by the developer of the test and the advice of an experienced MSK-trained MO at the cancer center of a major teaching hospital system, who are you gonna believe? I will wait for the next leg of TailoRx to be released (and ONLY if it measured the stats of 11-17-scoring women receiving endocrine therapy alone) before I start considering chemo. (BTW, OncotypeDX defined “endocrine therapy" as Tamoxifen; my MO told me that recurrence rates for AI therapy are even lower).
0 -
Oncotype DX only bases there study using Tamoxifen....
0 -
I will preface by saying that everything I say is based on what I was told by my MO, not by anyone at Genomic Health. My MO says that Genomic Health has new tools available to doctors on their website. She used one of the tools to calculate that on average, my 17% recurrence risk with tamoxifen would be reduced to 14% with AI's. There was another Genomic Health tool where she plugged in my tumor size, grade,onco score and my age to come up with yet another recurrence risk figure of 7%. It is based on studies listed on the printed out report. There are also error bars, which state a confidence level. For example, the 17% figure I was given can be anything from 12% to 21% with 95% confidence. So really, my recurrence risk with a score of 26 could be as high as 21%.
0 -
Moondust....wow that's making me a little more nervous. That's percentage for a grade 1 and no node positive. I guess thats why my mo didn't bother to send mine out for oncotype as he said it was probably going to be high. He probably did not want to have to share with me the percentages.
0 -
ThinkingPositive, I should maybe put all the other pathology info in my signature, because it explains why my tumor is a little wonky and got a 26. Even though I am Grade 1 (4 on the Nottingham scale) and my mitotic rate was a 1, several other factors are not so good. My Ki67 (which my MO has little faith in but I can't ignore) was high at 30%. My ER+ is 80% and my PR+ is 40%. The oncotype report classified me as ER+, PR- because PR has to be higher than mine to get into their + range. I think most Grade 1 tumors come back with a much lower score than mine.Possibly your MO knows that a Grade 3 with one pos node will make your score high. If your ER and PR are high percentages then you have an excellent chance of responding well to hormonal therapy. My thoughts only, and I am not an expert.
0 -
Moondust. Thanks. For responding. My er was98% and pr was 68%. Ki67 was 27%. I had Lvi present and extra capsulated extension in the one positive node. I know it could be worse. I am just hoping the chemo did what it was supposed to do and that the AI works as well!! I just find myself more paranoid now the year has passed.
0 -
Hi all, It's 1OUgirl here. I just wanted to check in here again and say that this month makes me an 11 year survivor of breast cancer!!! I started this post many years ago and was scared and unsure of the future because Oncotype DX testing was brand new. My doctor told me that the test was approved only 11 months before I was diagnosed. I did not know anyone that had a score near mine. I had a 52 on my Oncotype test score. My doctor would not release me from her care until I got to the 10 year mark. Well now it has been 11 years and I rarely think of my score or that I once had cancer. It will come to the back of my mind sometimes but not to a point of worry. I am very aware that anyone can have breast cancer recur, not just us ladies with high onco scores so I never fool myself into believing that it can't ever come back but I refuse to let that rule my moods and behavior. I try to live above my circumstances and just LIVE. I just came on here to give encouragement to all the ladies that are still going through the process i.e. chemo, radiation, tamoxifen etc. There truly are long term survivors out there that had really high scores.
1 -
thank you for sharing that!! I am finding it very difficult since its been only13 months since I finished chemo. It's on my mind more now than it was 6 months ago. I guess it will worry me until after I go for me Mammo ultrasound and MRI. I guess it's normal to feel this way? I can't tell you how what you posted gives me hope. I thought about your post all day. I am so happy for you!
0 -
10Ugirl, thank you for checking in. So happy your oncodx number didn't predict your outcome.
Each year that passes reduces our risk.
0 -
1OUgirl - Thank you for starting this thread and for coming back here to update.Congratulations as well. Not just on reaching the 11 year mark, but on 'beating' cancer by successfully moving beyond it. That's a huge challenge. I'm so happy to hear of women who are able to do it. Best wishes to you always!
0 -
1OUgirl - Congratulations and thank you for sharing your story. I am coming up on my five year mark and doing well but have found I am experiencing an unexplained case of the blues (might be better described as unnamed anxiety or simply no motivation to do what I need to do to keep my cancer at bay). You've lifted my spirits today.
0 -
yeeeeeeah,10u! That is fantastic news. Come back and let us know when another 10 has passed!
0 -
canjunqueen1- Just checking in. How are you doing?
0 -
10Ugirl
You are my touchstone in this thread and the reason I keep coming back, so very happy to see your newest post! Thank you for being so diligent about returning 11 years later. Congratulations. I will do the same too. My oncoscore was 39, and while not the highest, within the parameters of who should get the test, their are a handful higher and much higher, here, the head MO at OHSU (an NCI hospital) didn't help when he told me it was the second highest score he had seen as he handed me the papers. I am 4 years and 2 months out from surgery. Finished chemo August 2012 (AC/T DD plus 6 weeks of carboplatin for brca2+). Doing fine thus far. Ki67 was 60% Grade 3, 1.4 cm, no node, no LVI, ER+ PR- (IHC er 90%, pr, 5%). ER came out only barely positive on the oncoscore, go figure. I figure some of the tumor was headed to triple negative and some still ER+. 3.5 years on exemestane.
Ki67 is one element in the oncoscore, but not explicitly stated. It's been 4 years since I got that report, so things could have changed. I got mine from the biopsy report.
0
