Oncotype DX Roll Call!

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

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.

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 

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.

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.

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

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. 

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.

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.

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.

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 

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.