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!!

samiam40

patoo and sandy2009 have been added.  Thanks and welcome!

Anonymous

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!

Anonymous

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.

Anonymous

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.

Alo123

see my signiture below for details. 

Alo123

BLM.SNB , T/C X4

Oncotype26

Northstar

Samiam, thanks for adding me to the rollcall!   

crusader1

pamelamont

Hi, Usually the oncotype test is given just to people who have clear nodes. I see you had three nodes with cancer. Most times with node involvement one does not have an option for chemo. Also 35 is a very high score. I think you should have a long talk with your oncologist. Chemo is usually given to all in your condition.

Remember it may not be pleasant now but we all what we have to do so we may live a longer and productive life. I am now undergoing chemo and had no lymph node involvement , early stage BC , and a smallish tumor. The chemo nowadays is doable. It is not the chemo of five years ago.

Good Luck,

Francine

pamelamont

Thanks Francine.  But I made a mistake when I was doing my profile and I do not have lymph node involvement.  I will be correcting that.  Does that in any way change your response?

Good luck with your chemo and I do very much agree with your statement of doing what we have to.  This is just really hard for me to deal with!

Pam 

sandy2009

Hi Seabee,

Yes, you're absolutely right in regards to the Chemo Dr.s pushing chemo - that's what they've known for years.

I feel I'm in the "grey area" because of the size (and Chemo Dr.s have told me this too).  I'm not convinced tumor size is a factor when the Oncotype testing is involved.   It is the biology and nature of the cancer, mine is a score of 14.  It is agonizing when a Chemo Dr. will tell you about a "cell" or "cells" that may be out there and come back and grow in another area later, if that's the case why even have Oncotype testing?

There was another patient who had a very very tiny tumor, and her oncotype came back a "40"! The office was shocked, so she will be doing chemo.

I want to believe in my low score.   I've had a left masectomy with good margins, and it didn't go into the lymph nodes.   I want to feel good about my decision with Tamoxifen for the next 5 yrs.

Sandy 

samiam40

aubry and alo123, you are added.

Sandy, I think you are right about oncologists having a predisposition toward chemo.  However, the way my oncologist explained it was this: they eventually see all the people who are the statistics, the 1%, the people with the single cell that got through and caused a metastastis despite everyone's best efforts.  And their job is to treat those people and keep them alive.  And they'd rather not see anyone end up in that situation. 

So I think we have to keep that in mind--they are looking at it from the perspective of trying to keep every single person they see alive in the best way they know how.  We have to weigh whether the risks outweigh the benefits given our particular situation.

pamelamont, I do not have a port so I cannot address that particular concern.  Hopefully someone else will.  But it appears that a score of 35 correlates with a 24% risk of recurrence assuming you do the tamoxifen.  I imagine chemo would offer a significant risk reduction.

KEW

Seabee and Sandy--Maybe Sandy thinks she is in the gray area because of the Tailorx Study.  It is important to note that dropping the "gray" area down to 11 for the study was to have more potential participants and for statistical rigor. Both my onco and bs said that, some researchers (not cancer, but medical in general) said it was most likely to benefit the statistics. The more participants the more statistically defensible the study is, as I understand it it was not to question those with scores between 11 and 18, but to ensure enough participants. However I may be totally wrong.  With that said, it is frightening to be in the 11-18 range, it really upset me for a few weeks until I got a grip and talked with many people, and decided to trust the tumor biology.

Karen

jp12609

8%=12 score:RM,SNB,TMXF

sandy2009

Thanks Karen,

I do want to feel good about my score of 14.  The tumor size of 7cm bothers me, but will have faith in the low Oncotype score.   I say "gray" or unknown area because of the Oncology Drs., that's what they say, so it naturally sticks in my head.

Good thoughts and health your way,

Sandy

Seabee

Bonnie--TC is not necessarily a weaker cocktail than TAC.  Most people tolerate it well enough, but the side effects are too much for some. Nevertheless, it does allow one to avoid A, and you can always do 6 cycles of TC instead of the basic 4. Monitoring a course of AC may catch early signs of trouble, but it won't prevent heart damage, which as you know may not surface until later. For me it was an unnecessary risk, and one of the reasons I insisted on doing the Oncotype test.

pamelamont--I had a port put in my arm in anticipation of chemo, because I have very few accessible veins, and they are all small. As it turned out I didn't need chemo, but I still have the port, which is currently being used for blood draws. I will probably have it removed in a month or so.

When the port was first installed it was uncomfortable (but not seriously painful) for about a week or two. Now that it has settled in I don't even know it's there, and when it is accessed it doesn't hurt at all. They still use a special needle called a Huber needle to access it, but it just pops in. It is much more uncomfortable to have them poking around in your veins, IMO.

Chemo can damage your veins, and this tends to be worse if you use smaller veins for infusions. Some people have no problem using their veins, but in your case I think you might find the port a good option. Mine was installed in my arm because the surgeon didn't like the risks involved in installing it near the collarbone.

Seabee

Sandy--With ILC, there's the added question of the effectiveness of chemo on that particular tumor type, which was a major consideration in my decision. And as for that little cell or cells, if they're E/PR receptive, hormonal therapy should get them. Unfortunately, nothing is a sure bet in this game, including chemo.

Of course it is statistically more likely that a large tumor will be more aggressive and a small tumor more easily contained. As your counterexample proves, probablility is not fact. Within each grouop there will be many exceptions and deviations.

skippyrcis

Hi Ladies,  I got my oncotype score this week.  I am 5 wks out from BM with TE.  My score was a 13.  The appointment with my oncologist is this week.  I hope to find out my fate then.  I was able to call my BS and his nurse gave me the results over the phone.  I wish you all lots of luck.

Kristin 

sandy2009

Hi skippyrcis,

Great score! Bet you're happy!

Sandy