Topic: Long term "high oncotype test" survivors

Forum: High Risk of Recurrence or Second Breast Cancer — Managing high recurrence risk or high risk of developing a second breast cancer.

Posted on: Aug 8, 2008 01:54PM

Posted on: Aug 8, 2008 01:54PM

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.

Dx 4/1/2005, IDC, Left, <1cm, Stage IB, Grade 2, 0/3 nodes, ER+, HER2- Surgery Lumpectomy: Left; Mastectomy: Left, Right; Reconstruction (left): Latissimus dorsi flap; Reconstruction (right): Saline implant
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Mar 18, 2013 08:19PM MailGalUSA wrote:

Hi, My oncotype test score was 28 and i am suppose to start chemo on wednesday. I wish they had more statistics that they could show for the intermediate range. 

I dread the thought of chemo, i had thought i would get by w/o it, but i guess if your stage 3 they reccomend it. I only have to do 4 rounds but still end up with all the side effects. Does anyone else think that chemo is a high price to pay on the "chance" that a cell got away. Ive been reading there are risks to chemo also.

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Mar 18, 2013 08:49PM - edited Mar 18, 2013 08:53PM by QuinnCat

  Because of being Luminal B my MO seems to think my chance of recurrence is really higher than 18%. 

I guess I don't understand your MO's reasoning Nancy as the Oncotype stats take into account Luminal B, in the sense that Luminal B is ER+, PR- and high Ki67.  Ki67 is one of the tests in the Oncotype score and is part of the Proliferation Factor.  And ofcourse, ER and PR are part of the final score, also.

I am missing one important feature of Luminal B though - is it a behavior or a cell morphology?  From my reading, it is determined to be "Luminal B" based on the factors I stated above, but can one be Luminal A and be ER+, PR- and a high Ki67?  If it were more than the stats, i.e. a morphology that couldn't be determined in any other way but the stats, but without certainty, then maybe the Oncotype test doesn't already take it into consideration.

If there's any thing good to say about it, it's not as bad as basal for recurrence.

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Mar 19, 2013 07:16AM - edited Mar 19, 2013 07:18AM by nancyhb

Like you I've been voraciously consuming literature on Luminal B for weeks now, hoping to find some kind of answer in there.  My understanding is that the proliferation rate (Ki67) is what really distinguishes B (Ki67>13.25%) from A (Ki67<13.25%) so it sounds to me like a cell behavior.  One can be Luminal B and PR+ too - being PR- does not figure into the determination of Luminal A or B, but being PR- does increase recurrence rates even within the Luminal B category:

My original pathology report does not include Ki67, and treatment was based solely on the cancer profile.  It is only when the Oncotype test was done (which includes Ki67) that the cancer profile suddenly changed - as did my stats.  So I personally don't necessarily have a lot of faith in *just* the pathology report if it does not include more information (like Ki67, perhaps p53, and other tests too).

And yes, you're right, it's still not as bad for recurrence as basal (TN).  Stupid cancer.

I suspect that my MO's concern about "higher than 18%" alludes to being PR- (see report above), but I don't know.  I could be totally wrong.  The more I try to figure this out, the less I actually know.  :-)

All I *do* know is that this practice had never seen such a high Oncotype score before (which really surprised - and scared - me).  I sometimes feel like a guinea pig to be researced.  :-)  So I put my faith in the treatment I've received, and try to make life changes to help along the way, and try not to freak out every time I get a twinge in my back or hip, and...and...and...and keep my fingers crossed a little, too.

Edited to clean up my pre-coffee typos...

"Be happy for this moment. This moment is your life." - Omar Khayyam Surgery 12/5/2011 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 1/19/2012 AC + T (Taxol) Radiation Therapy 6/12/2012 Whole breast: Breast, Lymph nodes Surgery 2/15/2016 Lumpectomy; Lymph node removal; Lymph node removal (Left) Chemotherapy 3/1/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/21/2016 Mastectomy; Mastectomy (Left); Reconstruction (Left): DIEP flap Chemotherapy 6/2/2022 Surgery 6/2/2022
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Mar 19, 2013 11:45AM - edited Sep 6, 2013 12:40AM by QuinnCat

Oh Nancy - I hit some key and lost my long post in preview mode!!  I will atleast attach the articles I wanted you to see and thank you for posting those that you did.  Interesting that there is a further sub-classification of Luminal B.  I wonder, is it a contiuum as far as PR-, as I am IHC 5% and positive, though low, on the Oncotype dx score.

I've always been concerned with, more so than our actual high Oncotype Scores, with the idea that some ER+ Luminal B's do not respond to endocrine or chemotherapy. Especially the endocrine therapy, because it has the best chance of attacking the cancer.  Chemotherapy, I accept, is sort of a crap shoot, relatively speaking, in any case.

The last time I saw my MO, I asked her a simplistic question and got a simplistic answer.  I wouldn't mind anyone else commenting on this exchange, but being node negative, I asked my MO if there was chance that no cells left the tumor site before surgery.  She said "ofcourse."   I took that as a positive.  Afterall, even with high Oncotype Scores like ours, 80% have no recurrence in 10 years.  If they are resistent to chemo and endocrine therapy, maybe this is a possibility?

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May 8, 2013 11:29PM Twiceisenough wrote:

I had the same score as you. It is frightening to me but the doctor told me it just meant he had to treat me with chemo. This is my second time with bc. Last time eight years ago'with lumpectomyI had double masectomy, drains in for 32 days worse than masectomy. I did act first time and now carboplatin and taxotere. Able to work full time most days but I am exhausted. Anybody else feeling same and days after chemo very weepy, should I add another very. I am not a depressed person so this is hard on me. Have trouble climbing a single flight,of steps. Anyone else want to tell me about their fatigue and sadness.

Also Interested on info on high octotype test and what their dr said thanks all

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Jun 16, 2013 04:55PM wendy12345 wrote:

I am 44 and have a stage 2a, ER+/PR+/her2-, grade 3 i IDC.  Tumor size 2.3cm and one of the two lymph nodes taken out has isolated tumor cells.  My onco score is 31.  I saw two different oncologists and they recommended two different regiments for me.  One recommended me for AC - T (AC for 4 8 weeks 4 cycles and Taxol for 12 weeks 12cycles).  Another one recommned me for a clinical trial (tic tac toe) of T(Taxotere)C (6 does for 18 weeks).  I have to make a decision on what I should do.   Does anyone have to make this type of decision?   I found there was a lot of good posts on this side and would really appreciate your though.  Wendy

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Sep 4, 2013 06:02PM janamarlowe wrote:

I do. I was just diagnosed as well - with a score of 34. I am currently taking radiation and the radiation oncologist says chemo may help - or the cancer may come back anyway - it seems kind of crazy to me.  I think after radiation I am going to try alternative therapies.  Have spent all day looking around.  Most of the chemos used for invasive ductal carcenoma have been around since the 40s, 50s and 60s. Come on now, there has to be a better way!

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Sep 4, 2013 06:49PM loral wrote:

janamarlowe...What was your DX, my score was 34 also.

Oncotype DX 34....When NOTHING is sure, EVERYTHING is possible ,so NEVER, EVER, GIVE UP HOPE!! Dx 9/11/2012, DCIS/IDC, Left, 1cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR-, HER2- Surgery 10/9/2012 Lumpectomy; Lumpectomy (Left); Lymph node removal; Lymph node removal (Left): Sentinel Hormonal Therapy 12/13/2012 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Sep 4, 2013 06:50PM the_roadshow wrote:

Hi ladies, I'm due to start the Gerson Therapy at the beginning of November. My score was 44 and I've had surgery, chemo and radiation. It's a two year therapy. Good luck with whatever you decide to do.

Oncotype DX score 44 Hormonal Therapy 1/23/2013 Dx 1/24/2013, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER+/PR+, HER2- Surgery 1/27/2013 Lumpectomy: Left Surgery 1/27/2013 Lymph node removal: Left, Sentinel Chemotherapy 3/14/2013 CEF
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Sep 5, 2013 09:58PM - edited Sep 5, 2013 11:23PM by squidess


Is there any chance you misunderstood your oncologist? Having a high oncotype score is an indicator that chemo is likely to help. It is not a death sentence. It just means that there is a clear benefit to taking chemo for those of us with a high oncotype dx score while there is no benefit for low oncotype scores. I'm all for the alternatives, but maybe slipping some chemo in there first is something to consider?

Also, for those of you who think that hormonal therapy doesn't work as well for us, keep in mind that the original studies looked at tamoxifen. There are some studies that indicate that aromatase inhibitors work better - especially for those of us who are er+/pr-. Also, those studies were done with older chemo regimens, and the newer regimens also provide for better survival.

I did 4 rounds of TC and still here with no signs of recurrence 6+ years later. I never regretted for a minute doing the chemo and it wasn't really all that bad.


edit: Just had to add that for those of us in the high oncotype dx group, the absolute benefit of chemo for survival over the first 12 years is 28%. That's huge! Said another way, if you take 100 women  with high scores and give them chemo, 12 women will have a metastasis during the first 12 years. Without chemo, that would be 40. 28 lives saved :-)

2007: 2.4 cm ER+/PR- Her2- Oncotype: 35. Flat-chested and more Bada$$ than ever.

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