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 11:54AM

Posted on: Aug 8, 2008 11:54AM

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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Jul 19, 2014 01:09AM QuinnCat wrote:

Nancy- I don't know what CTC is?  Nothing was ever mentioned about my nodes having anything, otherwise I might have researched nodes ad infinitum  😄

I have had one lingering, slightly anguishing worry about my SNB, well two things.  It was done a month before my BMX ( it was Xmas and I wasn't able to get a surgery time til late January so when she had a cancellation I was literally called the day before that opening to drive 366 miles for my SNB the next day.)  Ok, now I remember; she thought my choice of lumpectomy vs bmx was based on whether I would need radiation (the idea of radiation was worse than chemo at the time, for m). Despite being brca2, my surgeon was still pushing for me to do a lumpectomy.  Never got that!  The other node event was the blue dye shot.  I think I might have been the first guinea pig by that intern and it didn't take (it felt like nothing at the time so that didn't surprise me).  When my surgeon later told me this she said not to worry, that she could still determine the sentinel node.  I've always wondered about that!! I only had one of those too.  And what about the month between SNB and BMX...could cancer have found another pathway out during that month?

For some reason these node issues never rose to the top, but it appears they still linger, like your ki67 for you, in my mind!

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Jul 19, 2014 05:37PM Tomboy wrote:

ctc. circulating tumor cells? i was high ki67, luminal b, by the place i first did biopsies. 2nd place, where i was treated, refused to discuss.

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 19, 2014 05:43PM Tomboy wrote:

and, the tumor was small and slow growing. but when it went to my nodes, it went crazy! one was golf ball sized, and all were matted and bursting out of the nodes. i tested equivocal by two tests for her2, but they wanted to give it to me anyway. i still dont know if i am luminal b. my est was way high, pr barely pos. anybody help me out here? funny thing, i never felt those nodes! but now two years later, all these nodes are getting hard and bugging me and itching, from my ribcage to my armpit. imaging says nothing, biopsy says nothing, i am sure they think i am crazy, and i am starting to believe them. thanks

"I will sit right down, waiting for the gift of sound & vision" David Bowie, Rest in pax, my beloved changeling... Dx 6/8/2012, IDC, Right, 1cm, Stage IIIC, Grade 3, 25/30 nodes, ER+/PR+, HER2+
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Jul 21, 2014 07:47PM nancyhb wrote:

Hi ladies, sorry I disappeared - the weekend was *beautiful* and we took our 8-year-old granddaughter to the balloon festival and had a picnic.  Dangit - this is what I endured chemo and rads to be able to do!  :-)  So I enjoyed the heck out of our weekend, and had to think a little before I posted again.

kathec - yet, CTC means circulating tumor cells - except that I meant to type ITC - isolated tumor cells.  THIS is why I shouldn't try to respond to posts on my stupid smart phone - the tiny screen makes me typo all over the place.  SO - I had ISOLATED TUMOR CELLS in four of my lymph nodes.  I apologize for the miscommunication (but kathec, you're so smart you knew what I was talking about even though it makes no sense!!!  Bless you!!)

Quinn - Wow, I can certainly understand why you have unanswered questions that linger.  You have reasonable questions that, probably, don't have answers (and that sucks).  A month between SNB and BMX isn't all that long in Normal Days - but in Cancer Days, that's 30 days of opportunity for cancer-cell escape.  I'm surprised the surgeon didn't do the SNB the day before your BMX, but it sounds like perhaps your surgeon believed you'd ultimately choose a lumpectomy?  

It is so hard not to have all the answers in front of us; I sometimes fear the unknown perhaps even more than a recurrence.  For those of us with high Oncotype scores, is there the feeling that we've already been told to expect recurrence (perhaps I'm the only one who heard that?); for me, I continue to pick apart my history to find some understanding.  I thought I desperately needed to know my Ki67 - now that I have that, it only confirms what I knew before.  I feel a little silly for pushing for the test now, but now I can stop beating that poor, dead and demolished horse.

"Be happy for this moment. This moment is your life." - Omar Khayyam Surgery 12/4/2011 Lumpectomy; Lumpectomy (Left); Lymph node removal Chemotherapy 1/18/2012 AC + T (Taxol) Radiation Therapy 6/11/2012 Whole breast: Breast, Lymph nodes Surgery 2/14/2016 Lumpectomy; Lymph node removal; Lymph node removal (Left) Chemotherapy 2/29/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 7/20/2016 Mastectomy; Mastectomy (Left); Reconstruction (Left): DIEP flap Chemotherapy 6/2/2022 Surgery 6/2/2022
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Dec 7, 2014 02:57PM nottoday wrote:

Squidess,

You may not be around much now - hope you're out having fun and enjoying the holidays - but I am still searching for a paper you mentioned: That study stated specifically that the survival curves for pr+ and pr- cross after somewhere around 6-8 years and that this needs further analysis.

If you are around, could you send the link?

Also, JCO in September published an overview of luminal B, which I don't have a link to but am happy to share if anyone wants it. Unfortunately, there's still little available to be summarized about efficacious treatment approaches beyond what we already know.

Best wishes, all.



Dx 7/23/2014, 2cm, Stage IIA, Grade 2, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 10/21/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/19/2015 Aromasin (exemestane)
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Dec 15, 2014 07:44PM Runnergirl36 wrote:

Hello! I too had a high Oncotype score so i would be curious as to what you have found. My original Path was 41% ER 17% PR and Her2 Negative. The Oncotype changed it from barely ER to PR and HER2 negative.. I did chemo and rads and meet with onco this week to most likely get the Tamoxiin. My Onco says they go by the Path testing and do not hold a lot to the Oncotype testing and they still consider me ER and PR positive.

Dx 3/2014, IDC, 2cm, Stage IIA, Grade 3, 0/1 nodes, ER+/PR+, HER2- Surgery 4/15/2014 Lumpectomy: Left; Lymph node removal: Left, Sentinel Chemotherapy 6/17/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 7/7/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 7/28/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 8/18/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 9/8/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Chemotherapy 9/29/2014 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 10/26/2014 Breast Hormonal Therapy 1/4/2015
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Dec 19, 2014 01:50PM QuinnCat wrote:

Notoday - I am interested in the Luminal B paper you mention!

My original path had me 90%ER 5%PR while the Oncotype report had me positive ER, though middling, not high and the PR was barely in the plus area. Still confused about the change in ER positivity and to this day I do not understand what this "middling" ER means....some of the cells have estrogen receptors and some don't or that all of the cells have ER receptors but weak? Anyone know? (Oncoscore high 30's)

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Dec 19, 2014 02:00PM hopeful82014 wrote:

I, too, would be interested in the paper on Luminal B.

Quinn, that's an interesting question. I don't have any answers but I certainly think your MO should be willing to clarify that for you.

Dx IDC, HER2-
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Dec 19, 2014 02:16PM QuinnCat wrote:

Hopeful - I think I've asked my MO this question with an unsatisfying answer or the other option is I forgot what she said! Sometimes I find better answers here, not that I don't like my MO, I do.

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Dec 19, 2014 02:39PM - edited Dec 19, 2014 02:41PM by hopeful82014

Glad to know you like your MO - that's such an important relationship, isn't it? And I hear you, Quinn, on the issue of asking the MO. Sometimes I feel as though my BS would be justified in presenting me with a bill for med. school tuition :) since she's had to delve into so many rather esoteric topics in such depth with me!

I will say that one thing I like about electronic communications with my team is that I have their answers in black and white to refer back to as needed. I wish more providers offered these systems.

Dx IDC, HER2-

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