NEW Oncotype Dx Roll Call Thread

samiam40

Welcome to the "New Oncotype DX Roll Call"! 

moodyk13 started this thread when she was looking for some help with her oncotype score and discovered that many people want advice or info regarding this test that so many of our oncologists use to help us make treatment decisions. She very generously built it to what it is now and it has proven to be very helpful to newbies to see they are not alone with this.  I know it was very helpful to me, which is why I wanted to continue it when moodyk13 could not.

The following is a list of sisters who were kind enough to share their recurrence % rates and the coinciding oncotype scores.  If you would like to be included in the "roll call" please post or PM me your oncotype score, recurrence % (w/tamox only) and what treatment you have chosen using the codes listed below.  Even if your score is already listed,  your name can still be added.  

*Codes: BLM = Bi-lateral mast; LM = Lft mast; RM = Rt mast; R = recon; LMP = lumpectomy; SNB = Sentinel node biop;  HSTY= Hysterectomy; RAD = Radiation; A/C = Adriamycin/cytoxan; CPN = Carboplatin; T = taxol; TT = Taxotere; T/C= Taxotere/cytoxan; DD = Dose dense; HRPN = Herceptin;TMXF = Tamoxifen; AMDX = Arimidex; A/I = Aromatase Inhibitor; FX = Faslodex; FM = Femara; LPN = Lupron................ 

?% = 1 score (tea42 - LMP, RAD x 36, TMXF, TEXT clinical trial)

5% = 5 score (klp - LMP, SNB, RAD x 33, TMXF ), (MiniMe - LM, SNB, TMXF) 

5% = 6 score (Jasminn - BLM w/R, BL-SNB, TMXF, LPN), (hmm - LMP, SNB, RADs, AMDX)

5% = 7 score (KatMacBart, age 47 - LMP, SNB, RADS, TMXF)

5% =  9 score (IllinoisNancy)

6%= 9 score (fairy49 - BLM, SNB, TMXF)

6% = 8 score (Hood1980 - RM, SNB, T/C x 4, TMXF, Bisphosphonate clinical trial), (JanMarch, age 42, BLM, SNB, TMXF)

6%= 9 score (arsura - SNB, RM w/o R, & AMDX), (darsura, age 51)

7% = 10 score (LoDavis - BLM, AMDX) 

6% = 11 score (hollyann - BLM w/ R, HSTY, FM, TMXF, AMDX), (ann-idiot, age 44 - LMP, SNB, RADSx33, T/C x 4 for multifocal ILC w/1 node pos), (Aug242007 - SNB, BLM w/o R, RAD x 35, AMDX, HSTY), (sunandsandgirl, age 46 - BLM w/SGAP, SNB, TMXF, Clodromate), (northstar - BLM, RADS x33, TMXF)

8% = 12 score (jpann39 - SNB, LMP, RAD x 37), (kira), (Britt - LMP, SNB, RADS x33, TMFX), (jp12609 - RM, SNB, TMXF), (luvmaui - LMP, RAD, AMDX), (sherrilynne - chemo x 4), (jeanne44), (lmays, age 48 - LMP, SNB, LM, TMXF, R), (ajlive - LMP, SNB, RAD x 28, FM)

8% = 13 score (renrel) (PT63 - BLM, BSNB, TMXF), (patoo - LMP, SNB, RADS, AMTX), (skippycris - BLM, ) (jeanbean, age 47)

9% = 13 score (whippetmom - SNB, TMXF) (2NewBoobs - TMXF), (Pam456 - LMP, SNB, MammoSite, FM), (Macchick, age 44, No TMXF, chemo or RADS, so 18%?)

9% = 14 score (lisalachelle), (PattyS - TMXF), (sarabhealed), (samiam40, age 40 - BLM w/R, BSNB, CMFx6 chemo; TMXF, Bisphosenates?), (xpectmiracles - RM, SNB, T/C [TailorX]), (sandy2009 - LM, TMXF)

BLBC = 14 score: Rt side (Southport - BLM, TMXF)

9% = 15 score (scarp), (KEW - BLM, SNB, TMFX, HSTY)

10% = 15 score (NST40, BLM, SNB), (achen2iron, age 44, BLM w/TRAM, SNB, OOPH, HSTY, TMXF)

10% = 16 score (Seabee, age 66 - LMP, SNB, RAD, A/I), (margie1 - RAD x 28, TMXF), (mattscot), & (mandy1313), (MAMHOP - RM w/R, TMXF)

11% = 17 score (every8thwoman - RM & TMXF), (Triciaski - LMP, SNB, RAD, AMDX), (thegoodfight - LMP, SNB, T/C x 2, T x 6, RAD, AI), (seagan, age 42 - LMP, SNB, RAD x 28 + 5 boosts, TMXF, Zometa)

11% = 18 score (jacq), (JustSayin), (shari1232), (mary5454 - LMP, T/C x 2 (reaction), RAD x 20, A/I), (jude14 - LMP, RAD x 33, A/I), (revellsk - LMP, SNB, RAD), (puppers - LMP, SNB, RAD, AMDX), (lynninpa - LMP,SNB, RADs, TMXF, LPN), (merilee)

12% = 19 score (kamico3 - LMP, SNB, RAD x 32, AMDX), (lisasayers), (yellowrose), (DoreenF, age 44 - LMP, SNB, RAD, OOPH, AMDX), (dawnmrn1), (lories - LMP, SNB, RAD x 16), (jpixstix - BLM, R, SNB, and TMXF), (florbo - LM, DIEP, T/C)

BLBC = 19 score: Lft side (Southport - BLM, TMXF)

12% = 20 score (christianne)

13% = 20 score (hopefullady - LMP, RAD, T/C x 4, TMXF), (wallycat), & (Sam91) & (ikat)

13% = 21 score (paras), (julesd - LMP, SNB, RAD, TMXF) (fortunate1, age 61, RM, SNB, HYST [years earlier], FM)

14% = 22 score (swimangel72), (mamie2 - LMP x 2, SNB, RAD, AMDX ), (aubry - LMP,SNB, RADx10 [mammosite], FM), (ivorymom, age 49 - LMP, SNB, RADs or AI), (hemen, age 41 - LMP, SNB, T/Cx4 [TailorRx study], RADS, TMXF) 

15% = 22 score (holtbolt),

15% = 23 score (aprilgirl1, age 44 - LMP, SNB, CMF x 6mos, RAD, A/I); (07rescue - BLM, TCH x 6; HRPN x 18, FX); (gitane - HSTY, SNB, BLM, R, A/Cx6 DD, FM, Zometa), (PatMe), (cl1960, age 47 - BLM w/R, TCx4, AI)

15% = 24 score (cw89134 - LMP, SNB, Mammosite, AMDX) (encoremom, age 52 - BMX, SNB, AMDX)

16% = 25 score (marlenet, age 41 - LMP, SNB, T/C x 4, RAD x 33, TMXF), (u32374 - LMP, TCx4, RADS, AMDX)

17% = 25 score (mellybell - LMP, SNB, T/C x 6, RAD x 35, TMXF)

17% = 26 score (otter), (auriga - SNB, RM, T/C x 4), (Alo123), (Snowbird - RM, SNB, T/C x 4, AMDX), (paweed - LMP, T/C x 4, RAD x 16, TMXF, AMDX), (knowledgeforpower - A/C x 3, RADS x 18), (alo123 - BLM. SNB , T/C x 4), (luckyrabbit99 - chemo)

17% = 27 score (babyc - BLM, SNB, TT/C x 4, AMDX), (Crusader1 - RM, SNB, LMP (failed), TCx4)

18% = 27 score (kirsten33 & 2tzus), (JeanneH -3rd Recur: LMP,RADS,A/C x 4 DD, T, AMDX, BLM), (chelev - LMP, chemo, RADS), (kat43 - LMP, SNB, TCx4)

18% = 28 score (Harley44);  (webwriter - L/SNB & C/T x 6 DD), (minnegirl1 - LMP, A/C x 4, RAD x 33, TMXF)

19% = 29 score (kt57, age 51 - LMP, SNB, T/C x 6, RADs x 30, AMDX), (danigirl - LMP, SNB, A/C x 6, RADS, TMXF), (dkerler - LMP, SNB, T/C x 4, RAD, A/I)

20% =  30 score (apfuentes)

22% = 32 score (marymoir - LMP, SNB, T/C x 4, RAD, TMXF), (sukiann)

22% = 33 score (busqueen), (ChrisBern [male], A/C x 4, T x 4 DD)

24%  = 35 score (artsee - LMP, T/C, RAD x 33, A/I), (janeinca - BLM, SNB, T/C x 2, A/C x 2)

25% = no oncotype (moodyk13, age 41 -  LMP, SNB, BLM w/ R, A/C x 4 DD, HRPN x 18) 

25% = 37 score (Nancyb7912 - LMP, SNB, A/C x 4, HRPN x 28, RAD, AMDX)

27% = 40 score (Lemont, age 48, LMP x 2, SNB, BLM w/o R, BLM Revision, T/C x 4, AMDX)

29% = 42 score (Harveysjule)

30% = 44 score (TPPJ)

30% = 45 score (Beach2Read, LMP, SNB T/C x 4, FM)

32% = 47 score (talbrig13 - LMP, SNB, TT x 10, CPN, HRPN x 18, RAD x 35)

33% = 49 score (flyrzfan) 

34% = 51 score (LindaBusEd - L/SNB, TAC x 6)

35% = 65 score (2xBC & kim1965)

 Thanks!!

moodyk13

Yeah! I found you!!!  I will post the link here on the original forum.  Thanks again sooooo much for taking this over.  I do find it interesting and will be checking in often.

One thing I forgot to change on my rollcall is I never actually got the oncotype dx done!  My doc just wrote that on my paper for what ever reason.........I asked him and he said he didnt send it off because I am HER2/Neu +++ it would have come back really high.  Evidently they do not recommend Onco DX for Her2/Neu. 

So, you can leave my recur % and remove the score, or you can take me off the list.  Either way is absolutely fine with me.

Thanks again!!!!!!!

crusader1

Samiam,

Please do edit my info. As I am having 4 TC's due to the ocnotype score..

Welcome as our new leader.

Congrats...This board is invaluable to newcomers..

Hugs to all..

Francine

samiam40

Thanks moodyk13 and crusader1, done and done!

Mamie2

Thank you Samiam!!!

aprilgirl1

Thank you Samiam and Moody!  This truly is such a informative thread.

Susan

Britt

Hi Samiam!

thank you for taking over this wonderful thread from Moody - I know you will continue to do an excellent job, as Moody did!

Well, my onco's nurse called me this morning and told me my Oncotype test results have arrived - exactly one week after Genome received my sample!  However, they would NOT give me any information over the phone, so I have to wait until tomorrow morning at 8:30 am for my appt to discuss.  The nurse DID sound EXTREMELY cheerful - but heck, they could be looking forward to yet another chemo patient! Oh, the suspense!  But will post it as soon as I find out.

Thanks!

Maria (who just popped a Xanax and is going to watch "Oprah" to get her mind off of this!)

samiam40

Oh Maria.  That's just not fair making you wait another day.  Be sure to let us know as soon as you can.  I'll be thinking about you and praying for a low, low score. 

Britt

Thanks, sam - I wonder if these offices are covert sadists?  I know of several women who received their scores over the phone . . . oh, well.  Thanks for thinking of me and for the prayers!  We shall see - I supposed I can say that I am prepared if it has to be chemo . . .

 Thanks again!

Maria

KEW

KEW   9%  15 score  (BLM, SNB, TMFX, HSTY)

Thanks for taking this over, I think it is important for everyone.

samiam40

KEW and PT63 have been added.  Thanks and welcome!

Britt

Hi Sam - here are my results:

 Britt/Xena the Warrior Princess:  8%  12 score (LMP, SNB, RADS x33m, TMFX)

Thanks! 

Maria

samiam40

Britt - That low score is wonderful news.  You must be very relieved.  Good luck with your rads!

Britt

Thanks, Sam -

I must tell you that I was totally SHOCKED by how low it was - was expecting at least a score of 20 . . . and I am extremely relieved, since I can now devote all of my energies towards re-starting my freelance legal assistant business and possibly finding a f/t job!  That is what I am truly grateful for - and thank you for your good wishes!

patoo

Hi, Oncotype=13 LMP SNB RAD AMTX

samiam40

patoo and sandy2009 have been added.  Thanks and welcome!

aprilgirl1

BUMP for newly diagnosed

julesd

Finally got my results back---13 days after the lab received the sample!  My Oncotype score is  21 with 14% recurrence.  I see others with this score did not list their treatment decisions.  I had a very long discussion with my oncologist today.  While he admitted himself that he was a little wishy washy, he seemed to indicate the benefit from chemo for me was very minimal--2-3% and that the side effects and risks from the chemo may outweigh the benefit.  But he ultimately said it was my decision and he would support me either way. I'm leaning toward no chemo but want to feel confident that I'm doing the right thing.  How do you know???... I think his biggest concern was my age.  I am 45. 

samiam40

Jules,

Well, you can't know for sure, you can only do what you really feel is the right decision for you, and what will allow you to sleep at nights, after evaulating all the available data.  Have you thought about getting a second opinion?  That would give you an added perspective.  What about participating in the TailorX study--it would randomize you into either the group that gets chemo or the one that doesn't (your doctor would choose the chemo regimen). 

Your tumor size is small, which is a good sign.  Your age and (I'm assuming here) premenopausal status would only be a concern because since we are younger, we have more years in which to have a recurrence.

There is no right or wrong answer when our score comes back in the "gray" area.  In those situations, we just have to go with our gut.  Personally, I chose to do chemo with a much lower oncotype score than yours, but my tumor size was bigger, I am younger than you (40) and I was offered CMF which has no long term and minimal short term side effects.  Plus, unlike you, I was leaning towards chemo.  Others find themselves leaning against doing it.

Hopefully others will chime in and lend their perspectives.  It is a difficult decision, that's for sure.  Best of luck whatever you decide.

Northstar

My oncotype was 11, which shocked my med onc, since the tumor was big and she was pretty sure I'd need chemo.   I'd had a BLM, then had 33 rounds of RAD (chest wall, clavicle, axilla)..  Now taking tamoxifen for 2 yrs, then probably aromasin for 3-5 yrs.   

sandy2009

Hi Northstar,

My oncotype was 14, my tumor was 7cm.  I am in the "gray area" with chemo (do I, or don't I).  I have had 2 opinions from Onco dr.s and they are pushing the chemo.   Other professionals (my breast surgeon, my radiologist, 2 great RNs) have swayed me away from chemo., they told me to believe in the Onco score.   It's tool that is used today to determine the biology and nature of the cancer.   It's a great test.

I'm not sure "size" is a big factor with the Oncotype(?), mine is also lobular.

It's a personal choice, I am still thinking about all this, I have time.  I just got done with surgery on Feb. 25th.

I will also be doing the Tamoxifen (5 years or shorter, if shorter than aromasin added).

Sandy

samiam40

northstar, hope you don't mind--I added you to the rollcall.  Thanks for posting!

chelev

I just got the results of my report- 18% - 27 grade.  I have IDC, Estrogen 95%, Progesterone 5%, HER2 negative.  Lumpectomy 2/27/09 and will start 4 rounds of chemo shortly, followed by radiation (5 weeks) and some sort of hormone treatement afterwards.

chelev

I forgot to mention my tumor was fairly large - 3cm, which is what prompted my surgeon, and rad. onc. to submit it for testing.  I had a long conversation with the radiation onc. doctor and he said personally, he would get the radiation, as it was right in the gray area for being intermediate, and that I would have that in the back of my mind about should I have or shouldn't I have done the chemo.  I personally do not want the chemo, I'm scared by it, but if it will help make sure nothing goes to any other part of my body and that I will be cancer free, live longer and happy, then I will buck up and get it done.  My surgery was great - clear margins and no lymph node involvement, plus my breast looks better now than before (and now the other side is droopy!).  I am 46, postmenopausal due to surgery and not ready to give in to this disease.

BonnieKJG

All - Do you know if the criteria for eligibility for the OncotypeDX test have changed?  I previously thought that it was only available for node-negative cancers, but now I see some examples where node-positive cancers have been tested, and I am reading on the OncotypeDX website that in "some cases for node-positive estrogen receptive cancers for post-menopausal women the OncotypeDX Test may be appropriate"...

I'll put a call into my oncologist on Monday, but I thought I would ask here if anyone had some background this topic...

Nothing like last minute questions, I'm scheduled to start Chemotherapy on March 30th! Perhaps it is "cold feet", but I'd really like to have all the information I can before starting six cycles of TAC ....

Thanks!

Bonnie

samiam40

chelev, I've got you added to the rollcall.  I know you didn't want to do the chemo, but you are taking all available precautions to make sure you beat this disease, so hopefully you have peace with that.  The 4 cycles will be over before you know it.  If you want, let me know what chemo you will be doing and I will update your entry.

bonnie, I also read that on the oncotype website, and wondered about what types of node-positive cases oncotype would be appropriate for.  My initial (completely uninformed) impression was micromets.  If you are strongly against having the chemo, it might be something to look into.  However, I believe most doctors would recommend that you do both hormonal treatment and chemo, since you know that your cancer has tried to spread.  Hopefully it never got past the lymph nodes, since that is their job to trap and filter cancer cells and other waste products.  But, as of course you know,  chemo is the insurance policy.

Hopefully someone else will post who knows more about using oncotype with node-positive disease, but whatever you decide, I wish you luck and peace with your decision.

Seabee

Sandy--I'm not sure why you think you're in the grey area with an oncotype score of 14. I suppose tumor size is the issue for the oncologists, but it is well known that lobular tumors tend to be larger because they are hard to detect, not because they are more aggressive. If your tumor was ductal or Grade 3 or HER2+, etc., then chemo would be a reasonable choice.

Medical oncologists in general tend to favor chemo. I also found that my radiation onc and my surgeon were more skeptical and more inclined to accept the results of the Oncotype test.as reliable.   . 

Seabee

Bonnie--Yes, the Oncotype DX test is now available for node-positive patients with 1-3 postive nodes. If you have more than 3 positive nodes, they don't have enough data yet to be confident about estimating risk, but apparently you would qualify. I had it done, and it made deciding on treatment a lot easier.

While you're in the asking mode, you might consider asking your oncologist why s/he thinks you need that A in TAC. It might--or might not--add to the effectiveness of the treatment, but it also has a potentially fatal side effect.

Per spem vivo.
Dx 9/9/2008, ILC, 2cm, Stage IIb, Grade 1, 3/23 nodes, ER+/PR-, HER2-

BonnieKJG

Thank you Samiam and Seabee!

Good advice and I completely agree re: making the decision easier. If the score were low, I'd have more data to weigh type of chemotherapy treatment and if high - I'd feel that more that the need for agressive treatment was validated.

My concern about the A's increased heart toxicity was the reason for my extra research...I understand it is a low incidence and they closely monitor patients during the delivery, but I am not as sure of the long-term impact...if the Oncotype score were low, then perhaps TC would be the better option...

Thanks again for sharing your advice and I will be calling my doctor first thing Monday!

Bonnie

Aubry

My surgeon and I looked at the Onco score (22) and the informational graph that indicated only a 3% better predicted outcome with chemo.  I decided 3% was not enough to risk killing good cells. 

 My oncotype score is 22 and the recurrence is 14%.  LMP,SNB,Rad x 10(mammosite), FM

pamelamont

Need advise please.  I am brand new to this thread and was recently diagnosed.  My OncoDx score was a 35 and at the recommendation of my oncologist she said I would need chemo.  I am absolutely terrified of chemo and needles.  I lived through it when my husband had chemo for cancer several years ago.  I saw the side effects he went through and it was not pleasant.  I was told that I could have a port cath placed under my skin to make it easier and not have to deal with the needles.  After researching the port, it appears that the pain is not worth it. and I will just have to suck it up and deal with the needles.  My questions are this, has anyone had the same score and what would my chances if I was to decide to forego chemo and just have radiation and hormone therapy and just how painful is the port cath?  Thanks to all who can help me with this.