Oncotype DX Roll Call!

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  • Seabee
    Seabee Member Posts: 557
    edited January 2009

    I'll be doing rads, starting early next month, and whichever A/I is reasonably tolerable. No chemo, since Oncotype DX and other sources indicated 0 additonal benefit.  As for surgery, I had a lumpectomy, a SNB followed immediately by an AND, and a successful reexcision.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    I'm on the list already - but adding to my info:   Lumpectomy, sentinal node biopsy -  hysterectomy/oopherectomy,  rads, arimidex -  in April of 2009 I'm celebrating my 4th year since diagnosis !!

    Doreen 

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009

    Okay ladies, please check you names and make sure I got your info correct, if I missed something, just let me know and I will fix it.  Thanks again for participating. Webwriter said she may do chart/graph when we get enough info.  It is interesting!

    DoreenF- CONGRATS ON 4 YEARS!!!!!!!!!  WOOO HOOO! 

    I am coming up on my 1 yr anniversary since dx-  2/1/09.......

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  • kamico3
    kamico3 Member Posts: 90
    edited January 2009

    Hi, my oncotype has already been posted, it was 19. I had a lumpectomy and I am having 32 rads and arimidex for at least 5 years.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009
    Thanks kamico, I added your info.
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  • 07rescue
    07rescue Member Posts: 168
    edited January 2009

    Hi, my Oncotype was 23, my treatment was BLM with TCH x 6 plus single agent Herceptin for a year, and Faslodex hormonal treatment afterward (if I can afford it).

    Dx 8/21/08, IDC, 9 mm, stage 1, grade 3, 0/3 nodes, ER+,PR-, HER2+++

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009
    Gotcha rescue thanks for heping us out by sharing your info!  Laughing
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  • JustSaying
    JustSaying Member Posts: 73
    edited January 2009

    I just got my Oncotype back, it was 18. So I am at the very lower edge of intermediate risk. Onc said 8.5 to 9% risk with chemo, 12% without chemo.

    I am still trying to decide on bilateral vs. unilateral after an unsuccessful lumpectomy. My surgery is going to be this Thursday so I don't have a lot of time. This article just came out, and since I had ILC and more than one tumor (though I think all in the same quadrant), it is making me lean towards bilateral:

    http://www.boston.com/news/nation/washington/articles/2009/01/26/us_study_offers_help_with_decision_on_mastectomy/ 

    and

    http://www.medicalnewstoday.com/articles/136620.php 

    I mentioned the above study to my onc and she seemed to pooh pooh it.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009

    JustSayin what experiement did she "pooh pooh" ?  One of your articles or the one we are doing here?  If she is "poohing" this one here, we are doing this for our own curiosity and interest.

    I got you added to the roll call.  When you decide on your treatment, please come back and post it so we can add it.  Thanks!

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  • LindaBusEd
    LindaBusEd Member Posts: 121
    edited January 2009

    Moodyk13,

    L/SNB, 6x TAC

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  • Journey
    Journey Member Posts: 905
    edited January 2009

    I just had a major freakout!  A short background: LMP in Aug which pathology indicated one area of 2mm IDC and another of 5.8mm.  BLM in Sept which showed 0.3cm IDC. So the total is 10.8mm or 1.08cm. (I did not do the math until now.) Well when I went to my first Oncologist he just looked at the bilat report because he said something about my tumor(s) being well under the 1cm.  I even have a copy of the Adjuvant where he plugged it is as under 1cm.  Fast forward - I have the Oncotype done and it comes back as 18.  He suggests Tamoxifen and sends me on my way.  I went to 2nd Oncologist (1st one kind of gave me the willys), and he just breezes thru the paperwork from my 1st oncol and agrees with the Tamoxifen.  ANYWAY - I was cleaning up my BC stack of papers this weekend and actually sat down and re-read all my path reports and started doing the math.  I don't think it is going to change my course of no chemo and using Tam. but I have put in a call to my oncologist just to double check.  UGH!!!!  Sorry for the rant!

    Oncotype 18 with 11%.  I went onto cancermath and looks like even if I drop the Tam that I have just a years difference in  mortality rate.  So now I'm thinking why take the darn Tamoxifen. sigh....

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009

    Journey, everything about this disease sucks doesnt it!  No decision is easy to make and we are all so different!!!!!!

    I am probably wrong (and use to it lol) but I  think your total is 8.1mm.  2mm + 5.8mm = 7.8mm + .3mm = 8.1mm which is <1cm. 

    I didnt do tamox cuz it was only going to make a 4% difference.    

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  • Journey
    Journey Member Posts: 905
    edited January 2009

    Lumpectomy was in two positions - one produced 2mm and the other 5.8 mm.  Then from Bilat an additional 0.3cm (which converts to 3mm right?) so that is why I am getting 10.8mm which is just over 1cm at 1.08cm I believe.  I hate math!Frown

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009
    OH DUH!!!  .3CM not .3MM  Hey at least I said I was prob wrong!!  LOLKiss  I use to like math........
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  • Snowbird
    Snowbird Member Posts: 124
    edited January 2009

    Moody13: hope I get this all right for your updated rollcall...  RM, SNB, no recon, T/C*4 (2 done already!), expecting 5 yrs AMDX thereafter. Thanks for doing this!

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  • paweed
    paweed Member Posts: 41
    edited January 2009

    Stumbled upon this.Here's the info I think you need

    oncotype 26,17%,  lumpectomy, taxotere/cytoxan x 4(finished 11/14/08)  rads x16 finished 12/24/08

    began 2yrs tamoxofen jan 09 and then they want me to do 5 yrs arimedix

    Have any of you had the BRCA testing?  no one brought that up to me until just recently my gyn did. she wants me to have it.  what if it comes back positive???  man I thought all I would have to do is pop a pill for the next few years and get the mri's and mammos.

    I am stressing over this.

    Patty

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  • Seabee
    Seabee Member Posts: 557
    edited January 2009

    Just Saying---

    The second article you refer to is much more specific, and if I'm reading it right, there is an 80% chance that your other breast won't even have abnormal cells, so I'm not sure why you're seriously considering a bilat after reading it. Your oncologist seems less than enthusiastic about this option.

    You might find it helpful to look at some of the posts on the surgery thread before you decide to have a bilat.

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  • artsee
    artsee Member Posts: 1,576
    edited January 2009

    Moody..........LMP, Taxatere/Cytoxin, 33 rads, AI

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    moodyk13:  here are my details - lumpectomy.SNB, TCx6, radiation, AI x 5 yr. Thanks for compiling this,  

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009

    Snow, artsee, & kt57 - got you guys updated, but please double check to make sure I got it right.

    paweed- welcome and thanks for sharing your data with us.  I got you added to the rollcall.  Please double check my accuracy. Surprised  I was referred to Emory University for the BRCA testing.  I went for the consultation, but after gathering all the data, there was a 12% chance I had one of the 2 mutations.  I wasn't garraunteed that my insurance would pay for any or all of it, and they said only the lab could call to get pre-cert.  By then I would have spent $$ I didnt have, and might not get back.  So I have chosen not to at this time.  I can always go back later if I change my mind.

    Seabee, I only had cancer in my left breast, but I had a BLM.  My doc said the chances of cancer recurring/developing in my right breast was as high as it was for my left - which of course was 100%......  Some women choose to do a BLM as preventative treatment, others for peace of mind (my case), and yet others to have a better chance of being symmetrical with reconstruction (also my desire).  We all make our own choices based on physician recommendations and research.

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  • JustSaying
    JustSaying Member Posts: 73
    edited January 2009

    seabee - I guess the thought of a 20% chance or whatever it really is for ipsilateral lobular histology seems high to me. I am still extremely torn between minimizing risk of contralateral BC over my lifetime, especially if I may have the potential for 30-40 more years of life if I am lucky, (age 44 now), as I would imagine that the lifetime risk is even higher than what it is over 5 years. Although I may be wrong about that - all the other treatments - the hormonal therapies and now things like hormonal plus Zometa, should lower contralateral risk to some degree.

    I'm trying to really understand the medical communities position on this. They do not want to perform unecessary surgery, ok I get that. However if there is some evidence that under certain conditions there is a higher than "normal" (normal meaning typical BC patient) risk of contralateral BC, and the study says it would not be irrational, in such cases, to have a prophylactic mastectomy, then why wouldn't they be in favor of doing that? Ultimately, my goal is to improve my chances over the remainder of my lifetime.

    In any case this excerpt from the study is thought-provoking:

    "most patients will not experience any survival benefit," the researchers noted, "because the risk of systemic metastases from their index cancer often exceeds the risk of developing a contralateral breast cancer."  

    Which means I should be worrying more about whether or not to do chemo with an Oncotype of 18...

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  • Christianne
    Christianne Member Posts: 76
    edited January 2009

    I don't see my score listed--I wrote awhile back.  My score came back as 20 with 12% risk of distant recurrence.

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  • auriga
    auriga Member Posts: 315
    edited January 2009

    Maybe I should add that I also had a SNB and a RM. Thanks!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2009

    My score is listed = aprilgirl1 oncotype 23 - my additional info is:

    lumpectomy, snb, CMF 6 months, rads and tamox or A/I to follow

    This is a great thread - I found it so helpful!

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  • darsura
    darsura Member Posts: 71
    edited January 2009

     MoodyK13 - Don't know if you are posting this info (and I am already posted), but I had RM w/o R.  Also had SNB.

     Thanks for all your work on this.  Very interesting! 

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  • babyc
    babyc Member Posts: 58
    edited January 2009

    Hi! BLM, SNB, taxotere/cytoxan X 4, to be followed with Arimidex.  One question: according to my Oncotype papers my score was 27 with a 17% average rate of distant recurrence.  I notice some have posted score 27 with 18% and score 26 with 17%.  What accounts for the differences????????  Just curious....

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  • kamico3
    kamico3 Member Posts: 90
    edited January 2009

    I forgot to include SNB in my treatment description!

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  • Seabee
    Seabee Member Posts: 557
    edited January 2009

    Moody--Yes, I understand why in many cases a bilat is either necessary or desirable, as in your case, but it's best to go into it knowing what to expect. It seemed to me that Just Saying was thinking of making a hasty decision because of her scheduled surgery, and when an oncologist or surgeon (or both) oppose a treatment option, I'm inclined to take their opinion even more seriously than when they encourage it. What I'd ask myself is whether there was a compelling reason that the normal breast had to come off NOW. If I had a reason that I considerd compelling, then for me it would be a rational choice.

    Just Saying--Yes, chemo is a dicey issue in your case. What does your oncologist say about that, apart from noting a possible 3-3.5% gain? What regimen does s/he suggest? Once again, it's a case of weighing potential benefits against potential risks.

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  • JustSaying
    JustSaying Member Posts: 73
    edited January 2009

    Seabea - I have only spoken briefly with my onc on the phone regarding the oncotype result of 18, indicating a . I just got a copy of it in the mail. Page 2 shows chemotherapy benefit, and though she told me 2-3% benefit on the phone, she was having trouble reading that chart (it's really tiny, how annoying). I am looking at it now and using a ruler to try to get the real number, and it looks like 8% for my score of 18 assuming Tamoxifen + CMF/MF. That's taking the top number on the confidence interval, which apparently is the one they use because 12% is the top of the CI for the Tamox only scenario. So that is actually an improvement of, what, 40%, going from 12% to 8%? It sounds like it may be worth it.

    They are saying TC for me, if I do it. The oncotype calculations only show CMF/MF, not sure what that is and not sure if TC results would be similar. 

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009

    First, let me say, sorry it has taken me all day to get here.  I dont know if it was a problem with bc.org or my computer, but I haven't been able to get on the forum all day long!  Important thing is I am here now and getting all this updated. 

    christianne,I am so sorry I missed your first post!  Thanks so much for coming back and re-posting.  I am not that observant since chemo.....UGH!  Anyway, I got you added.  What treatment if any did you have?  I would like to post that nect to your name.  Thanks for participating!

    aprilgirl, arsura, babyc, kamico, I updated your info. but please check it to make sure I got it right.  Thanks for letting me add it to the roll call!

    babycthat is an excellent question!  LOL I have no idea....if I were guessing, I would say it would have to to with the genetic make-up of the tumor.  The Oncotype DX tests for something like 23+ genetic factors.  Still doesnt make a whole lot of sense regarding % diff with score, but it is the best I could come up with.....LOL

    seabee, it is difficult isn't it.    I definately understand your concern especially with 2 docs saying same thing!  All of this just sucks.  Anyway, if I am going to be totally honest, I chose the BLM for mostly vanity reasons.  What I mean is, looking in the mirror and seeing one screwed up side and one normal side would have been harder on me mentally.  See I am one of those "obssessive" people who must have things balanced, even, and the same. So having a scar on one side just wouldnt do as both boobs must have scars, and reconstructed nipples.  Even if they matched perfectly, I wouldnt be able to stand it knowing one was "real" and one was not.......LOL It DRIVES me crazy that I am like that.....but I am.   And, I knew there was a better chance of having matching boobs with a BLM.  I have seen some beautiful single mastectomy reconstructs that look almost excatly like the "good" one, but the key here is "almost" and this goes back to my "mental hangup" with identical sides.  And of course my last reason was for health...(I know, I know) I just didnt want to ever have to worry about the "good" side going bad.  My first tumor was flat and it couldnt be felt by me, my gyno or my surgeon.  So I figured if I got one, I wouldnt be able to feel it either.

    We are all diff though---even if I am a bit extreme.....

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