Oncotype DX Roll Call!

LoDavis

I was diagnosed with invasive lobular carcinoma on December 15, 2008 in my right breast.  There were two tumors, one 2.6 cm and the other .4 cm. I had BLM on Jan 21, 2009.  They removed 4 lymph nodes (negative for cancer). Tests showed PR+/ER+, HER2 neg.  I was recommended for the Oncotype-DX.  Just got the results - score 10 with 7% recurrence.  Since the tumor is so large (2.6cm), do you think I will need chemo in addition to the arimedex?  I meet with the oncologist next Wednesday, March 5, 2009.

DX 12/15/08, BLM, 2.6cm, .4cm,Stage IIa, 0/4 nodes, ER+/PR+ HER2 neg

LoDavis

Isamiam40

I agree with you.  My score was 10.  After surgery, the surgeon was sure that I would have chemo, due to the size of one of my tumors.  Now the oncotype test indicates that I may not need.  It seems like the older doctors would advise chemo, but my younger oncologist is saying no.  I'm a little confused.

samiam40

I hear ya Lo.  I'm very confused and will be interested to hear what your doc says next Wednesday.  I have heard from some people on this board that they believe Oncotype is tested more in IDC than ILC and that the results may not be as applicable to ILC.  Might be something to ask your doctor?  Either way, be sure to check in and post after your appointment to let us know what you learn.  I am going today and am so anxious to hear what she recommends.

moodyk13

LoDavis I got you added to the roll call.  Thanks for joining in!

You have an excellent question, I wish I had an excellent answer.  When I look at your score and % I would say "No way, no chemo" , but when I look at your tumor size I would say "Heck yeah chemo!"

I know the Oncotype analyzes about 20+ genetic components.  If you have that list of what they say your tumor consisted of, you could post here for help or google them to see each ones characteristics.  This is what I would do if I were in your shoes. 

Totally off the subject:

Last year, I gave testimony at my church. If you would be interested in listening to it go here:  http://www.survivorbiblestudy.com/My_Testimony.html

Everlastpink

Hi there, I hope your little girl is still doing ok.

You can add me to the list. My oncotype score was 18 (11% recurrence rate).  I had a hard time deciding what to do. I had a lumpectomy, SNB, and mammosite radiation.  My doctors all seemed to agree that I could avoid chemo, which is what I have decided, though it still feels a bit like gambling, in a way.  I am just now starting arimidex.

Thank you for compiling this list.

Katherine 

Seabee

For that matter, all studies of BC that are not specifically limited to ILC (and there are very few such studies), or do not give separate data for IDC and ILC, may have results more applicable to IDC tham ILC. But the fact that Oncotype scores for ILC tend to be low is consistent with the fact that classic ILC is generally less aggressive than IDC. It's apt to be bigger than IDC when diagnosed because it doesn't form a discrete mass and is harder to detect, not because it is more aggressive.

A number of studies have found that ILC is more resistant to chemotherapy than IDC, which is another point to consider. A low oncotype score suggests that the tumor will respond to hormonal therapy and that chemo offers little or no addtional benefit, which seems to be true of many ILC tumors. Not all ILC or IDC tumors are alike, of course, which is one reason why we need a way to assess them individually.

As for differences of opinion related to age, oncologists are probably like anyone else--reluctant to let go of what they once bellieved. This seems to be easier when ideas are less deeply rooted.

moodyk13

revellsk I added you to the rool call, thanks for joining in!

LoDavis

moodyk13

What a beautiful testimony!!!  Thank you for sharing with me.  My church has also been wonderful!  And I know I have been on prayer lists all over the country.......and I do believe in prayer.  I really feel so blessed in many ways....the fact that they found ILC with my yearly mammogram.....the doc had to take only 4 nodes and they were clear......my prognosis is good.

  I think that the doctor will recommend no chemo and just meds for five years.  My oldest daughter (age 28) is doing her residency in radiology at U of TN.  She has discussed my case with 4 encology doctors and 3 of them seem to leaning toward chemo, but I;m not sure how familiar they are with the oncotype test. My question is do I listen to my doctor OR do I listen to my daughter (her thinking is that this is a new test (and not completely proven) and for some reason she wants her "momma" to have chemo.  I'm just not sure she is not letting her emotions get in the way of what is best.  And to top it all off, I HATE TO MAKE DECISIONS!

moodyk13

LoDavis, thank you for taking the time to listen to my testimony!  I hope they aske me to do it again this year as I have a whole new testimony, but I dont know if they'll let me talk.....

I am so sorry that your case is not "cut and dry".  There are two ladies you should talk to that are both ILC survivors, they are both stage 3, but they know all there is to know about ILC and could certainly give you some things to think about.

You cant find them here anymore (long story deserving  a PM which I will send you) but you can find them here: http://www.breastcanswers.com/index.html there is a message forum there too and I will PM you their names cuz I dont want to get banned from this site like so many women have recently........

Seabee

LoDavis--Your tumor is grade 1, with 0 nodes, with good ER and HER characterisics. The only thing that pushes it up to stage 2 is size, and since it is ILC, this is not exactly the same as if it were IDC. Your Oncotype score is consistent with these characteristics. You will probably have your doctor's blessing. If you and your daughter consider the risks as well as the possible benefits of chemo under these circumstances, maybe the decision won't be so difficult.But whatever you decide, you should do well. It really does get easier once the decision is made.

samiam40

I have decided to do the chemo, will be starting CMF x 6 beginning Monday.  I know that is an unusual decision given my low oncotype score (14), but I'm just not convinced that oncotopye has all the answers.  If they did, why would they be doing the Tailorx clinical trial for scores in my range.  There must be some doubt about the efficacy of chemo for that range of scores or they wouldn't be doing the study.

Plus, for those who are interested in my decision-making process, we also considered the size of my tumor (2.6), my age at diagnosis (40), the fact that adjuvent online shows a clear statistical benefit of doing both chemo and hormonal treatment, and my onco's recommendation of CMF, which she claims has virtually no long term side effects and very tolerable short term side effects. 

I am in no way saying this decision is right for anyone else.  But for me, it feels like the right thing to do.

Edited to add: for purposes of the roll call statistics, I also had SNB and will be doing tamox when the chemo is over, as well as participating in the bisphosphenates study.

Mamie2

Hi ladies. My Oncotype, ordered on 1/26 finally arrived. I got an email from my medical oncologist this morning saying it is "intermediate," a 22. I can't sleep, I can hardly remember to breathe. I need to call and make an appointment to see her next week. I don't know much of anything about chemo drugs or regimes. I just read some posts in the CMF thread, and the Taxtere threads, and they're scary. All I remember my MO saying was, radiation and arimidex and we'll do the Onc test to weigh the benefit risk ratio of chemo. Well, hello!! If the answer is I don't need chemo, don't you think she would have just said that!!??? I haven't been able to sleep for the last couple weeks. Not even my valerian or chamomile is working. Dad gave me a huge vodka grape juice earlier to try to knock me out. But here's the thing. These I'm afraid -are the last waking hours of my normal life!!! Between surgery and the unknown.... (LMP 2.3cm, RXCision and SNB) T2 N0 M0 St2a. Anyone else here have clean margins but the tumor had lympho vascular invasion? 

Anonymous

Just a gentle reminder to everyone.  Please, please, please join the TailorX study.  All of us can one day help someone else who is being diagnosed.  Please contact your doctor about the clinical trial.  Send a PM if you have any questions.

xpectmiracles

Hi all. I thought I would join the roll call. My score was 14. I am participating in TailorX.

(RM, SNB, T/C)

xpectmiracles

Hi. I thought I would join the roll call. My score was 14. I am participating in TailorX.

(RM, SNB, T/C)

Thought I replied to this thread too MAMHOP,  but I don't see it.

Here goes again, keep your fingers crossed!----submit

xpectmiracles

oops now I see both!

moodyk13

MAMHOP, xpectmiracles, and mamie2, thanks so much for joining the roll call.  I got you added, please check to make sure I got your information correct.

MAMHOP, you may have very well posted before, as I am not nearly as observant as I use to be, and probably skimmed right over you. Chemo has frie my once "nothing gets by me" brain.  LOL  I am just glad you came back and re-posted so I could make sure you are counted! 

2Hands4me

What is the TailorX study? Can someone please explain? I'm still new to all of this! Should get my final path questions answered on Monday!

Anonymous

It is a clinical trial using Oncotype scores especially in the mid-range of scores.  It will be used to help women decide about chemo.  Ask your doctor.  There is no cost and many more volunteers are needed. 

Anonymous

if you google TailorX you will get some info about the trial -  basically they are studying the top end of the low risk oncotype DX scores, the intermediate risk scores and the low end of the high risk scores.    If your oncotype DX score is in the range that is being studied -  you would be randomized for chemo  -  or not -  if you have chemo it is up to you and your oncologist to determine what chemo cocktail. The study will follow the participants for up to 20 years.  

I think it's a great trial - I tried to enroll in it after the fact - but it was too far out from my surgery. Several other women in my oncologists practice have enrolled in the trial. 

Doreen 

Seabee

samiam40--Feeling right about your decision is what is most important, and given your low Onco score it is probably wise to avoid Adriamycin. No, the Onco score is not absolute--that's why they have the margins for error on the graphs, and a disclaimer stating that a low score is no guarantee of non-recurrence.

If you are assigned zoledronate in the biophosphenates trial, you especially need to avoid oral surgery. I assume they will warn you about that.

The TailorX trial is an attempt to further refine the prognostic value of the Onco test, especially for intermediate scores and scores bordering on intermediate--"bordering on" being very broadly defined. It is limited to node-negative patients, so the results won't be helpful to many of us.

Triciaski

OncoDx 17, recurrence risk 11%

Lumpectomy, SNB, Mammosite radiation, no chemo, Arimidex.

At my first onco visit after surgery, my oncologist was ready to start me on AC chemo, but when my OncoDx came back in the low risk range, he completely backed off and told me that chemo was not recommended for scores in that range. 

Tricia

JeanneH

Samiam40 - Thanks,  I need lots of luck!  I haven't been tested for BRCA yet.  My OB/GYN Dr. mentioned it last year (I also have a couple of cysts they are tracking on my ovaries) and I've been thinking about it.  Apparently many insurance companies will pay for the screening but not the actual test - so the $ are an issue.  The bigger issue was whether my children wanted to know or not - especially my daughter.  I'm thinking seriously now of getting the test anyway.

Abbey11

Add me to the roll call.  I was diagnosed with bilateral bc in September, had BM in October, Oncotype scores were 14 (5mm tumor right side) and 19 (1cm tumor left side.)  I chose not to do chemo after speaking with three docs.  I started tamoxifen in January.  So far very few side effects. 

Seabee

Tricia--What is Stage 1c?  I think you are the first poster I've seen with a Grade 3 tumor and a low risk Onco score. It was probably the Grade 3 that made your onc think an aggressive approach to treatment was necessary at first.

Mamie 2--Is your tumor IDC or ILC?  If my Onco score had been 22, I would probably have done chemo. My path report didn't show  lyphovascular invasion, but it did show sentinel node involvement, both of which are supposed to indicate increased risk of spread. You can ask your onc about this, but I'd tend to worry more about lymphovascular invasion than about sentinel nodes, which are *supposed* to trap abnormal cells.

moodyk13

Okay Triciaski and Southport  I got you guys added and welcome!

Southport, look at how I added you in the 2 places.  If that is good, then ok, if you had rather me add you differently feel free to let me know how you would prefer and I will be happy to oblige 

sunandsandgirl

Hello Ladies.

I was diagnosed on December 30, 2008 with Invasive Ductal Cell Tubular Carcinoma and DCIS.  I had a bilateral mastectomy on January 27, 2009 followed by a SGAP reconstruction.  I went to the oncologist last week, and this week I am having a bone scan, pelvic ultrasound, and transvaginal ultrasound this week.

My oncotype score is 11.  The oncologist is considering Tamoxifen and invited me to participate in a study for osteopenia where I will be randomly assigned to 1 off 3 osteoporosis drugs.  

I just stumbled onto this sight and found it to be very helpful.

Sunandsandgirl 

moodyk13

Hello sunandsandgirl I am very sorry to welcome you to the roll call as we all know it means another diagnosis........

BUT, I am glad you found it and I am very happy you wanted to join us, so I got you added.  This is a great group of women with tons of information, so if you have any questions, someone here probably has either an answer or personal experience. 

Mamie2

Hi Moody and ladies. I got in from a lengthy discussion today with my med onc and have a decision to make. Since I don't normally live in the country I have more at stake than just what treatment i will decide on. I'd have to move back to the states in order to do any trials. I elected not to do TailorX because they don't let you choose whether or not you do the chemo or not. (which is way silly, because they don't have enough participants) (I think she said they wanted 12,000. My score was 22 which means I have a 12% Recurrence rate with Rads & Arimidex, and 7% if I did chemo first (Taxotere and Cytoxin). I am leaning towards not taking the 5% benefit because out of those 5 women out of 100 how do we really know if they were boosted by the chemo or the radiation? Or that they just didn't respond to the Tamoxifin? I'd like to be a part of the osteoporsis study, but I'd have to move to Pa. Aaaarrrgh!! I have alot on my mind.  Doc says I am far enough out of surgery that I need to make up my mind. Damn those path departments who took their time sending my tumor tissue!!

Also, if neuropathy is a possible longterm side effect that would be hard to live with for the rest of my life....however long that might be. Losing my hair -ok, being vulnerable and having fatigue, ok. What to do. My doc says that the lympho vascular invasive features were already calculated into these equations and that should not be a decisive factor. Seabee I had IDC. Right now. They say I am cancer free. That is how we hope to stay, right? I do not want to do chemo and that is my leaning, and my parents' leaning too. I need to sleep on it. 

NOTE: The Oncotype test results are based on a study which used CMF and Tamoxifin- so if your drugs change to say Arimidex and CT - those should boost your points a bit. So my doctor says my taking Arimidex would likely give me 2 extra percentage points. So my score of 14 ends up really being about 12.

janeinca

My stats for moodyk13, Scores 35 and 24%. 4th cancer. 2nd breast cancer. BLM with SNB 11/08. Have had two cycles of T/C. Switching to A/C for last two cycles because of neuropathy.