All Topics → Forum: High Risk of Recurrence or Second Breast Cancer → Topic: Long term "high oncotype test" survivors
Posted on: Aug 8, 2008 12:54 PM
1OUgirl wrote:
Is there any long term survivors who have had a high oncotype score. I know that this test is relatively new but I also know that it has been on the market at least 4 years. So I know that "long term" regarding this test isn't very long term. I had it done 3 years and 4 months ago. My oncotype score was 52. My onc told me that the test had been on the market only about 8 months. I'm just curious about others who have had an extremely high score and are still clear (so to speak). I am doing great with no signs of any kind. Is there alot of others out there? By the way, I love this site.
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Jul 25, 2012 05:50 PM Kam170 wrote:
IOU-if I remember correctly, you were her2 negative. Is that correct? (you are my inspiration, btw, as I'm score 39 er+, no nodes) As Cookie said, the studies on recurrence only involved her2 negative. I could be wrong, but that is my understanding. Anyway, comparing scores between her2+ and her2- is like comparing apples and oranges as herceptin totally changes the game.
Jul 25, 2012 10:59 PM cookiegal wrote:
I remember my her2 results came later than the rest of my path, so perhaps the sample is getting sent out before the Her2 results are back.
Jul 26, 2012 01:09 PM 1OUgirl wrote:
Kam, Yes I was her2negative and I too believe the studies were only on her2negative patients. Even after my chemo, my doc said chances of recurring were 20% in 10 years. But she also said that it is extremely rare for a cancer to recur in distant areas after 10 years. She says she has only one patient that had a distant recurrence after 10 years and he was NOT a breast cancer patient. I still know that I will never be out of the clear, but I live each day like I never had cancer and I truly love growing older. I was only 43 when i got breast cancer and I'm thankful to the Lord for every day He gives me.
Jul 28, 2012 02:40 PM vickilind61 wrote:
1ougirl,
thanks for the encouragement. At this point, the onco score is just one more thing in my bag that has me angry/frustrated/worried. However, my surgeries went well and I am past the halfway point in chemo. So, we will see.
Jul 31, 2012 11:23 PM AnneMarie_1970 wrote:
For those who are Her2+, bear in mind that the oncotype DX is designed for early stage ER+ BC, not HER2+. The Her2 skews the results. That said, if you're ER + and Her2+ your score will be lower than if you're hormone neg and Her2+. The results are really only valid if you're Her2 neg. I'm glad I had the Oncotype DX, though, since according to it I'm not ER+. My biobsy path had indicated otherwise. The score is a determinent of whether chemo will be beneficial. Beyond that, it's just number, not a prediction. :)
Jul 31, 2012 11:28 PM AnneMarie_1970 wrote:
@Raider: Wow. I thought I had the highest Onco DX score. Mine was 65. But I'm hormone neg, Her2+. Makes sense a triple neg would receive a higher score.
Oct 28, 2012 09:47 AM IllinoisNative wrote:
I have you all beat. My score was 70. I'm low ER and PR positive which I guess is almost triple negative, but my doctor said that my ER and PR status was high enough that I'm not considered triple negative and they aren't treating me that way. He also said chemo reduced my score so it's almost like I'm someone with a low Onco Dx score now. My last chemo was April 29, 2011 and everything has come back clean...MRI, mammogram, etc. Of course, he also said most recurrences of cancer happens in the second year. lol
Oct 28, 2012 06:17 PM, edited Oct 28, 2012 06:18 PM by Rose12
Hello Ladies,
My score was 61. I was very upset to hear this, but I eneded up with T/C X 4, radiation 33 rounds, and now I am on Femara. It has dropped my risk way down. Hope it all worked. Only time will tell. 
Sorry I am not long term yet, but wanted to share with my high score. Thanks.
Oct 28, 2012 07:00 PM Kam170 wrote:
IllinoisNative - 70. That's a legit high score in the range of ER+ and/or PR+ scores. I see you are BRCA2+ like myself. Two MO's told me my score was the second highest score they've seen...(one saw a 42). Again, only referring to hormone positive Her2 negative. I'm curious, what did Oncotype Dx report back on your ER and PR scores?? Also, did you have a Ki67 from an initial biopsy? Rose - 61...same questions.
Oct 29, 2012 06:12 AM Rose12 wrote:
Kam, My Oncotype DX report showed the same scores as my first initial pathology report. Very strong E postivie, no P at all, and Her- it was right on the money. My Ki67 was 50% from the hospital. I don't think Oncotype checked the Ki67. My gene's were high. I wonder if I would classified as Tripel Negative? Does anyone know?
Oct 29, 2012 09:53 AM Kam170 wrote:
Rose - You wouldn't be classified TN with strong ER. You are probably Luminal B (ER+ or PR +, Her2- and Ki67 > 13-20% << this is a vague classification). When you say strong ER, what was the score on Oncotype? I got RS of 39 with 9.0 ER (middling positive) and barely positive PR. Your overal RS goes down the higher ER or PR is. My Ki67 was higher than yours, 60%, so it seems odd your overal score (RS) is so much higher than mine, though that Proliferation Factor of Onco DX is not broken down for us to see.
Oct 29, 2012 06:59 PM Rose12 wrote:
Kam,
This is the results from Oncotype.RS score-61. Distant recurrence rate=34%. Then it says it all drops once chemo is given.
E=10.2 postive(My first pathology report showed 97% from biopsy)
PR-less than 3.2 negative
HR 9.4 negative
Oct 29, 2012 08:29 PM Kam170 wrote:
RS 39 Distant recurrence rate = 27%
E = 9.0 (my first pathology showed 90%) positive
PR = 5.7 (my first pathology showed 5%) positive, but barely
HR = 7.9 (negative)
************
Rose - just for fun (humor me) (7.9 - 5.7 - 9.0) = -6.8 (me)
Somehow it seems like having a stronger ER or stronger PR, than a mediocre and small one, would be a better thing (intensity). Certainly 97% of cells staining ER+ is good.
(9.4 - 3.2 - 10.2) = -4.0 (you)
The more negative the better on ER,PR,Her2.....my Ki67 was 60%, yours 50%....
Just playing with ideas...obviously there are other black boxes that enter the final equation, but using my research, the biggest factor is Proliferation Rate which is often well proxied by Ki67.
Nov 19, 2012 12:28 PM tracy77 wrote:
I love this site too!! I was an 11 year survivor until April 2012; lump on mastecomy breast, had lumpectomy and did onco type test. Number high 34 and I am going through chemo now as a preventative messure....having alot of tingling/numbness in feet and hands not sure if I will do more chemo good luck!!!!
Dec 11, 2012 02:57 PM CherylinOhio wrote:
@Illinois Native You said "he also said most recurrences of cancer happens in the second year" Do you know if he meant the 2nd year from dx or the 2nd year from active treatment end?
Dec 12, 2012 01:54 PM, edited Dec 12, 2012 01:56 PM by Kam170
Asked my MO when the clock starts ticking...she said "When the cancer is gone." Upon further questioning, she said, "After your BMX." I had chemo after that, so that wasn't part of the "treatment equation."
Interesting thing I read the other day...if your cancer does not respond to chemo or hormonal therapy (and apparently some don't, and I assume both have to be true), if you had done nothing, versus surgery, chemo, hormonals, you would live the same amount of time. That makes sense...the bigger shock is that some cancers don't respond to anything, which I probably knew about chemo, but only recently learned that even some ER+ cancers do not respond to anti-hormone medication.
Dec 12, 2012 02:05 PM CherylinOhio wrote:
Jeez, I hope mine has responded to all of the treatments. I think my onc says time starts after active treatment ends. November 2012 begins my 2nd year out from active treatment. I believe this is also the most likely time for a reoccurence. YIKES!! I hope this year goes by fast!! I am really feeling hopeless today. Broke down and had onc presrcibe some xanax (spelling?) but he does not like that one so he scribes ativan. Guess it will be Ativan Xmas.
Dec 12, 2012 05:30 PM Kam170 wrote:
Cheryl - sounds like your MO says end of chemo and mine says after the BMX. As much thought as my MO appeared to put into it, I'd probably go with your MO. Other than that, when you say "2nd year," is that the start or end of the second year. For example, if your chemo ended October 1, 2011, is the second year, as far as when recurrence is more likely, from Oct 1,2012 to Oct 1, 2013, or does the second year recurrence start after you've completed the second year, October 1, 2013?
Dec 13, 2012 07:48 AM CherylinOhio wrote:
Kam, I have seen it explained as the years after active treatment ends. So Nov 2011 until Nov 2012 is my first year, Nov 2012 to Nov 2013 is my 2nd. I have heard that the most likely time is the 2nd year, whether that is 2nd year after active treatment of from dx, I would assume that is from active treatment ending. The better part of 2011 I was doing chemo and rads. I just hope this 2nd year goes fast, I am not one to wish time away but I would like to make it thru this 2nd year unscathed.
Dec 13, 2012 08:03 AM, edited Dec 13, 2012 08:06 AM by voraciousreader
jco.ascopubs.org/content/25/15...
Back in 2007, distinguished Sloan Kettering physician Dr. Cliff Hudis outlined the problem in clinical trials of calculating endpoints with regard to treatments.....
________________________________________________________________________________________
Proposal for Standardized Definitions for Efficacy End
Points in Adjuvant Breast Cancer Trials: The STEEP System
Clifford A. Hudis, William E. Barlow, Joseph P. Costantino, Robert J. Gray, Kathleen I. Pritchard,
Judith-Anne W. Chapman, Joseph A. Sparano, Sally Hunsberger, Rebecca A. Enos, Richard D. Gelber,
and Jo Anne Zujewski
A B S T R A C T
Purpose
Standardized definitions of breast cancer clinical trial end points must be adopted to permit the
consistent interpretation and analysis of breast cancer clinical trials and to facilitate cross-trial
comparisons and meta-analyses. Standardizing terms will allow for uniformity in data collection
across studies, which will optimize clinical trial utility and efficiency. A given end point term (eg,
overall survival) used in a breast cancer trial should always encompass the same set of events (eg,
death attributable to breast cancer, death attributable to cause other than breast cancer, death
from unknown cause), and, in turn, each event within that end point should be commonly defined
across end points and studies.
Methods
A panel of experts in breast cancer clinical trials representing medical oncology, biostatistics, and
correlative science convened to formulate standard definitions and address the confusion that
nonstandard definitions of widely used end point terms for a breast cancer clinical trial can
generate. We propose standard definitions for efficacy end points and events in early-stage
adjuvant breast cancer clinical trials. In some cases, it is expected that the standard end points
may not address a specific trial question, so that modified or customized end points would need
to be prospectively defined and consistently used.
Conclusion
The use of the proposed common end point definitions will facilitate interpretation of trial
outcomes. This approach may be adopted to develop standard outcome definitions for use in trials
involving other cancer sites.
J Clin Oncol 25:2127-2132. © 2007 by American Society of Clinical Oncology
_________________________________________________________________________________________
When I read clinical trials, I am looking for disease free survival from the time of the COMPLETION of active treatment.
Dec 13, 2012 03:52 PM Kam170 wrote:
Oh Cheryline, I know. My gf was grade 3, stage 3, though triple positive, and she is alive and well over 10 years later. I worry about my Stage 1, so I get it.
VoraciousReader - I'm not so voracious, so will look at your link when I get a nice block of time. Thank you.
Dec 14, 2012 08:32 PM SharonS wrote:
Hello All - First sorry everyone is here. Today was my oldest son's 30th birthday and started out great remembering that great event. Then all the tragedy in Conn, and also the police officers shot down in Memphis, where my youngest lives. Then a call from my breast health navigator with oncotype results. This is my second cancer. First in 2008, lumpectomy, chemo taxotere/cytoxan, radiation, tamoxifen for 4 years. Then this fall found a discharge on my bra, other side. Originally thought to be benign papilloma, but also found IDC. Decided on BMX and tissue expanders a little over 3 weeks ago.
Now tumor is a lot like my last one ER/PR+ HER2-, 4 lymph nodes all negative....so they were just thinking aromatase inhibitor....now today oncotype is 31.....will know more Monday....but looks like chemo - AGAIN.
I am very healthy, in fact I teach it....
Right now kind of dazed......thanks for a place to vent...
Jan 21, 2013 10:20 AM squidess wrote:
It's been about a year, and I thought I'd post an update. This post, even though old, has stuck in my mind. It's rare anything stays in my mind for a year! But I hate to think that my gorgeous sis's with a high oncotype score have no hope.
So here's the update... much to the consternation of my cranky boss, I'm still around and kicking another year later! Closing in on the 6 year mark and healthy as a horse. (A plump horse, that is.)
I got another 5 years of either AI or tamoxifen (my choice) given my high risk. Thought I was done, but oh well, what the heck. If I've gone this far, I can do another 5 years of side effects.
I learned to ride a motorcycle this year. That is an absolute hoot! Nothing like flying down the road with the wind in my helmet (I didn't go through chemo to smash my noggin all over the pavement) and waving to the other guys on bikes. Ahhh the brotherhood of the bad-a$$!
I LOVE being this age (50ish)! I realize that just the sight of me scares the young guys at work. One little stare over my glasses and they melt into the floor and slink out of my office. That is power!! Why are we so scary at this age?
If you got a high oncotype score, for sure you are being treated aggressively. And the good news is that these aggressive cancers tend to respond better to treatment. There's TONS of hope that you have had a complete response to the treatment regimen.
My dear sisters, if you are reading this, you are alive and life is enjoyable. We're not here on this earth to worry about the end. We have all been given a second chance to find our path in life. Focus on that, and not your disease. Go find your own motorcycle and enjoy life!
~Squidess (smoooooooch! love you all! you are beautiful, you really really are!!!)
Jan 22, 2013 11:09 AM Kam170 wrote:
Squidess - thank you so much. Your "stats" are close to mine (I'm almost PR-), so this means a lot. 
Jan 25, 2013 11:25 AM ablydec wrote:
Ditto that. I peeked onto this thread because my Oncotype came back 53, and I got a little spooked. (Especially since my mother was diagnosed at the age I am now, 48, and died of it 5 years later). But I started my chemo, I'm doing fine, and as you - and my MO said - these are the types that respond very well to aggressive treatment.
Squidess, I love your attitude, and that line, "Go find your own motorcycle and enjoy life!" is a real keeper. I will do that! :)
Mar 6, 2013 12:25 PM the_roadshow wrote:
Hi all,
My Oncotype DX came back with a score of 44 and I'm so glad I found this forum thread. My oestrogen receptive score was 8/8 so I was wondering if there would be any benefit to ovarian ablation/removal/suppression meds. Has anyone else been advised to have this or had it done? My onc hasn't mentioned it but it makes sense to me. If I have chemo, radiotherapy and tamoxifen, sure the tamoxifen will hopefully prevent it coming back in the breast but what about my oestrogen levels and other receptors around the body. I also got my report back in the post today (surgeon was reluctant to release it, I've been chasing him for 2 weeks) to discover on page 9 that they've left DCIS cells in the margins. Should I be worried about this - my OS never mentioned it? Thanks ladies.
Mar 6, 2013 02:15 PM 1OUgirl wrote:
Hello, I'm the lady that started this blog and I just wanted to post that I have gotten many private messages in my private email but since I didn't know I had a place on this form for private messages and my notification of this was turned off, I have never gotten back with anyone that has private messaged me. So sorry. I have rectified that situation by turning my notification on. I came back to this blog and have just seen "the roadshow" posting and I wanted to reply to that. As of April 1, 2013 I will be an 8 year survivor of breast cancer with an oncotype DX score of 52. Praise the Lord. But when I had my tumor removed, doc did an MRI on my breast and noticed the margins were not clear. My doctor said that there is no question but to go back in and get EVERYTHING that remotely looked like cancer. I had another operation to remove any remaining cancer cells and the report came back that it was DCIS. The doctor said that they would NEVER leave any DCIS in my breast if they could help it. It is to be removed and treated just like the cancerous tumor. So I would unequivocally talk with my doctor about DCIS cells still left in my breast.
Mar 6, 2013 02:47 PM the_roadshow wrote:
Hi 1OUgirl, congratulations on being an 8 year survivor! Thanks so much for writing back. I will definitely need to speak with the surgeon again. My breasts are small and they ran out of breast tissue but maybe that means that I'd be better off with a mastectomy. I really don't like the idea that they've left some DCIS in there.
Mar 13, 2013 03:32 PM, edited Mar 13, 2013 03:33 PM by 1OUgirl
One thing I would like to stress about the ladies that score high on the onco text. My onc said that it is a great advancement to have this test because many ladies such as I with stage 1, no lymph nodes involved and the tumor being only 9 mm is that most doctors would have told me that to go home and live my life because I am one of the lucky one's who will probably never deal with this cancer again. But the doctors always knew that there was a certain section of these very women with all those great stats that were coming back to the doctor with stage 4 cancer a few years later so the doctors needed a test to weed out those very ladies that truly did need much more agressive treatment. My breast cancer was diagnosed only 9 months after this test came on the market. I remember feeling that lump probably about a year earlier but tried to find it again and couldn't so I went on with my life. If I had found it back then and they removed it without the onco test score, I would never had the aggressive treatment that I received and my onc says she isn't sure I would be here today. So I thank God for that test, even though I didn't like it's results on me.
Mar 13, 2013 07:03 PM, edited Mar 13, 2013 07:04 PM by Kam170
1OUgirl - thank you for coming back and please continue to come back! You were one of the first ER+ Stage 1's I found here with a high oncotype score (ofcourse and her2neu negative) and this many years out from treatment. I'm sure many in your same situation have moved on, but I appreciate your posts so much. Your outcome gives me hope and I'm sure, many others.