Long term "high oncotype test" survivors
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So I am going to jump in this thread, as this has been something I have been trying to put at the back of my mind and just moved forward with the protocol to stay cancer free. My onco score was 63 - so scary and surprising for me - a stage IA IDC, no lymph node involvement, and clear tumor margins. Yet the tumor was a grade 3 and only 23% ER, PR - and Her2-. The onc said at this point I was considered cancer free and chemo, radiation and anti-hormone therapy is being completed for insurance that it does not come back. I am only on my second round of AC and realizing how much my life has been changed forever! It feels like I am treated as a triple negative. I want to be hopeful. If there are words of advice or encouragement - sure would like to hear them.
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Livin- you are early to the game. Some of our stats are the same, though when you say 23% ER, do you know if you were considered positive on the Oncoscore for ER+? I would say you are luminal B, given you are somewhat ER+ and you say you will be given hormone blockers. Yes, it feels like triple negative when the ER gets that low.
I was ER+PR very low, Her2 negative luminal B, oncoscore 39, 1.4cm Stage 1A. I am 5 years from surgery next month. There are more than a few of us in this category and still NED. I am a worrier and I spent a lot of the first 3 years worrying, reading, researching, and worrying more. I think there are many days now that I don't even think of cancer, but I probably still more often think of it than not, maybe more out of habit than fear. It gets better. I have read, after 5 years in this category, our risks of recurrence go down to those having Luminal A. Our risk of recurrence starts out higher than a Luminal A, and maybe the first 3 years is higher than the next 2 years until they become equal. At that point, I feel like I've joined the ranks of the 97% survival group (not sure if that is DFS, or OS, etc.).
IOUgirl pops in now and again. I think her oncoscore was above 50. She is over 10 years out.
I did AC/T. Make sure you do some exercise. It will help you get through chemo with some left over energy. Even if just a mile, or 20-30 minutes. If you are already an exerciser, keep it up.
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edwards750 - what did you friend find out about taking AIs past 5 years?? I assume it was the BCI test?
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Hi Livin,
I agree that getting that high score is a jolt. My surgeon predicted mine would be in the low-intermediate range. I had a type of tumor called "pure mucinous" that is supposed to have a good prognosis. I got the evil twin.
But there is a positive spin, which is that the high Oncotype allows you to be more aggressive about treatment if you wish, and that aggressive treatment can reduce your risk substantially. (And even without aggressive treatment, recurrence risk is certainly not 100% - as Meow can attest.)
And like QuinnCat said, the studies seem to indicate the that higher recurrence risk subsides after 5-7 years, and then the risk can drop a lot.
So work closely with your medical team and be reassured by all the high Oncotypes that have been on this board for years.
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Livin, I second what others are saying. The score is enough to make you feel you should be getting your affairs in order. I agree with what people are saying about high score means chemo would be effective. After 5 years cancer free your chances get better than a strongly hormone positive individual. Chemo knocks the fast growing grade 3 cancers.
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High Livin!
I feel your pain. My oncotype was 57! I was expecting an intermediate score and knew right away that I would do chemo. From he time I was diagnosed until my oncotype results I didn't really cry. I cried on the way home from getting the results because I knew I had to do chemo.
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One of the Genomic factors that made my score high was Ki67. During my biopsy, the lab that got the specimen did Ki67 (most places don't I am discovering). Mine was a whopping 60%. It is one of the 4 major elements going into the Oncoscore, though not revealed on the report. One of the things I remember quite well was one journal article saying best results from chemo came at a Ki67 of 55% trailing off on either side of that number. I held on to that one! Find little tidbits like that to hold on to. They help.
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Logang - welcome to the Luminal B club!
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I really don't know why more information is not given on the oncodx test. I never got a Ki67 result. So the sparse information I had lead me to not do chemo. Now I hear Ki67 is not reliable in predicting cancer behavior. Clearly a lot more needs to be done for BC patients. Starting with more understand of the tumors and causes. Better treatments so we don't have comprise our health to get rid of the cancer. I just hope I will live long enough to see this.
The idea that the patient is at fault, they drink, smoke, don't take of themselves is just flat out wrong.
I have had people say to me what did you do to get this cancer, you are one of the healthiest people I know.
I just say I didn't do anything wrong. All the prevention talk, exercise, maintain your weight, blah blah blah is just that. Blah an excuse to blame the victim or make others feel they won't get it.
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I guess I kind of fit into the Luminal B category with large tumor size and being grade 3, but mine was ER + at 90% and I had no lymph nodes involved.
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31 nodes removed? I wonder why I just had 2 removed. Logang so you are coming up on 1 year that is good.
I hope you never see the cancer again.
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I was supposed to have the SNB, but my nodes looked and felt wrong. My surgeon didn't feel comfortable leaving them in, so he took them all. So far no lymphedema, knock on wood. I do know that my breast MRI showed them as abnormal compared to the non cancer side. I am just glad they were clear!
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Logang - it would really be interesting to see your Oncoreport given your score and 90% ER. I was 95% ER, but only around 8-9 (from memory) for ER on the oncoreport - still positive though. PR 5% and barely positive on the oncoreport (those two agreed, though there is an explanation further up on this thread for why they don't necessarily agree). Was that from grandma? (hormone blockers = bad memory). I was told, ER+ PR- or very low and high Ki67 (argument on that amount but > 13%) is Luminal B. My MO told me I was Luminal B.
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I just dug out my oncotype report. My ER score was 9.2.
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My onco told me that the labs that we have don't classify luminal B but what is scary about my cancer was less than 1% pr. So I think I fit into the luminal B category. But you know 95% er so not the classic er+ and pr-. I think getting on AI so soon was key to success but we will never know. Also her2 was a +2 just barely negative.
God please I hope I never go through this again.
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Logang- so interesting how you garnered 18 more points than me on the oncoscore, but so many of our numbers are the same (that we know of).
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Was age part of their curve fitting equations. For $4000 you think we would get all components to get the score.
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Meow- as far as I know, age doesn't matter. There are something like 22 genetic factors (but my memory for this is 5 years old now) with Ki67, ER, PR, and one more item - darn, can't remember the other item, playing major roles. Higher the ER, PR, the lower the score, all other factors raise the score. Her 2 is not a factor because study not based on Her 2+. Someone smarter than me could discuss.
All proprietary.
You should see the info Myriad withhold on BRCA people. They own the data! It's disgusting.
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Difference between Luminal A and Luminal B Subtypes According to Ki-67, Tumor Size, and Progesterone Receptor Negativity Providing Prognostic Information
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Thanks Loral good link.
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hi,
Oncotype 55, ki67 - 85 Very weakly er +, pr- & her2-
Almost 3 years clear and doing well. Tamoxifen until body shoes true menopause. Wish all you sisters DF status
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Hi,
I am new to this forum but have read a lot of the old postings which were so helpful to me. My wholehearted thanks and appreciation to all the valuable posters
With the Oncotype DX test, I can't help thinking that the current test may not be too relevant for ER+, PR- cases
My understanding assessments are based on old data sets with patients only using Tamoxifen for hormonal treatment. I believe PR- patients do not respond well to Tamoxifen resulting in higher recurrences and hence the automatic high RS scores relative to ER+, PR+ cases
We now have Aromatase Inhibitors (AI) which I believe will be effective for PR- situations and should lead to lower recurrences
If this all is correct then the test provider should clearly point this out to people to alleviate unnecessary anxiety. It would be helpful if the test can be updated/adjusted to account for the availability of AI drugs as viable hormonal treatment for people diagnosed with ER+, PR- receptors
Hopefully someone can comment on the relevance of the test results for ER+, PR - patients
Thankyou
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Hi Susiespecial and Rameson - Welcome to Breastcancer.org and thank you for posting!
Jameson, we're glad to hear you're finding support and information here in this amazing Community. If you both need any help navigating the boards or finding a forum that's right for you, please don't hesitate to reach out to us. We're here for you!
Best wishes,
The Mods
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Rameson, yes with everything you ask. Oncodx is still used and many PR- BCO members have received high scores. I have not seen too much more on the subject on effectiveness of AI drugs for er+ and pr- individuals beyond this
http://www.cancernetwork.com/articles/anastrozole-...
It seems that there is a much smaller percentage of the population that fall into this category. Personally, my statistics er 95% and pr less than 1% with mitotic score of 1 lead me to discount my high risk score of 34. The high er percentage coupled with a slow growing characteristic led me to start with anastrozole as soon as possible. I didn't believe chemotherapy was a good treatment for me. My oncologist however stood by my oncodx score and highly recommended chemo. Tamoxifen is still being used to treat patients especially premenopausal patients. It doesn't seem to be as effective for er+ pr- patients as AI drugs are. But statistics lean to AI drugs having better outcomes and some doctors are chosing to get premenopausal women into menopause so they also can use AI drugs. For er+ pr+ individuals tamoxifen seems to be just as effective as AI drugs and may be more tolerable as far as joint pain side effects.
I am 5.5 years out with no recurrence unfortunately I don't think the statistics are updated with information on patients. Cancer seems to be very individualized but you will find doctors cling to statistics even though the population size might be much smaller.
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Hi all. My MO at a major NYC teaching hospital told me the oncotype info. is really old. She also said she didn't believe my score of 27 was accurate. Go figure!
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My oncologist is a big proponent of the Oncotype test as are many doctors in my neck of the woods. My oncologist said women had been over treated for years and this test affords them more information about your particular tumor. So it resulted in prescribe chemo or not based on the test results.
I had IDC Stage 1b, Grade 1 BC. I had a micromet in the SN. My BS said chemo. Not his call. Oncologist ordered the test. My score was 11. 8% chance of recurrence. Tamoxifen for 5 years. No chemo benefit.
There is also another test given now post 5 years to determine whether a patient needs to continue with Tamoxifen or the like for another 5 years. I have a friend who took this test. Her score was high so another 5 years for her.
I will be 6 years out in August.
Diane
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I'm glad the Onctotype test was around in 2012 when I was diagnosed, otherwise I probably would not have had chemo for my Stage 1A cancer. I imagine the test will be updated in some respects as time goes on and more data is available, including, as some have noted, the use of Aromatase Inhibitors instead of or in addition to Tamoxifen. I'm coming up on the end of 5 years on AI and my oncologist said it's up to me if I want to take the Breast Cancer Index test, but most insurance (including mine) won't pay for it as it's not FDA approved because there isn't sufficient data to back up their claim that continuing anti-hormonal therapy affects risk of recurrence. He said that overall there is some data that demonstrates 10 years of therapy is slightly better than 5, but it's not clear if it's worth the potential for increased toxicity. He said he tells his patients about this and those who have mild side effects usually choose to continue, while those with significant effects usually do not. I also read a summary of the research on the American Cancer Society's site, and it stated that overall deaths from breast cancer do not decrease. I've read other articles about the research that note increased morbidity and mortality from cardiovascular disease during the 10 years on AI's.
I guess there is no one perfect solution for everyone and we are left to sift through the evidence and try to make the best decision for ourselves, given our individual circumstances. It still feels like a gamble to me; Las Vegas without the drinks or dancing girls
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edwards750 What is the test called?...........There is also another test given now post 5 years to determine whether a patient needs to continue with Tamoxifen or the like for another 5 years. I have a friend who took this test. Her score was high so another 5 years for her.
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Hi Loral - the test given after 5 years on AI's is called the Breast Cancer Index (BCI) test. That's the one I referred to in my comment above; my new MO asked if I was interested in taking it but said the HMO wouldn't pay for it. Based on what my previous MO said (and I hold him in higher regard than the current one, based on his reputation) I doubt I will pay out of pocket for the test. I already know I'm at about 18% risk after chemo and 5 years of AI's (although as others point out, the Oncotype test was based on Tamoxifen and not AI's). Hopefully more research data will be forthcoming to clarify the impact of AI's versus Tamoxifen, chemo, and affect of AI's in terms of percent reductions in deaths as well as recurrences.
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