NEW Oncotype Dx Roll Call Thread

mbcr: I am doing very well on the tamoxifen. Had hot flashes first couple months, but that was it. As far as the periods, I had a hysterectomy about 8 years ago. So sorry I can't help you with that.

Hi All:  Age 46.  IDC, Stage 1 grade 1.  Micro mets in one of 7 nodes.  ER+ PR+ HER2-.  1.2 cm.  Oncotype score 20, 13% chance of recurrence. BRCA negative, although family history with cancer suggests some kind of mutation.  Lumpectomy and removal of lymph nodes.  T/C x 4.  Radiation and Tamoxifen to follow.  Will do zometa some time after that.  Fight HARD and God bless all of you!  XO, Mary

Hi Mary - Technically, "on paper," I was node negative.  I had microscopic traces in the first node.  The way they decide is by size - under a certain measurement they still consider it negative.  HOWEVER - new data suggsts that recurrence is still higher in women even with microscopic traces like mine.  We may see protocol change in the future to consider all micro mets as node positive.  That being said, go to the genomic health web site - the official site for the oncotype test.  I believe they do testing for some post-menopausal and/or node positive women. 

Sam, even tho I had had chemo six years before, I have been so curious about my oncotype dx score that I recently had it tested with archived tissue. My onc warned me it would be high--but I just wanted to know. I am postmenopausal with extensive node mets (my sb had a large tumor wrapped around it) and a large primary tumor-- 5cm. I am er pr positive, her negative, grade 2,  stage 3a ductal. (Yes, they have recently started doing node-positive cases) and guess what? My score was an 18, and it is worth the expense--it has made me feel so much better. I did everything, mast, dd chemo, 6 years of AI's, radiation. Maybe it wasn't all necessary afterall. I think there is no way we can second guess OncoDx results--this is a unique test that goes beyond the parameters we have always had.

I should be getting my oncotype test results this week.  I'm SO nervous.  I keep telling myself that lots of women survive chemo.  Please, please, please let it be a low number......

Melissa, Yes I do have a pretty great onc. He really believes in teaming up with his patients. When I first broached the subject of getting tested for OnctotypeDx he was taken aback and tried to tell me it was of no use now. I convinced him otherwise. (I was trying to make a decision about quitting AI's as well as always having the nagging feeling I just wanted to know.) I told him I was willing to pay for it, etc. He said, "Well, I can see you are really determined, let's do it." My onc totally skipped the Arrogance 101 course in medical school (Yale) and instead took that great elective, "Building Consensus with Your Patients." I have been very lucky with him--but of course I had to kiss some frogs along the way before I found him. Your idea about the Taylorx study is really intriguing.Do you suppose we have enough political clout to make better use of archived tissue?

Hi,

Just received my score of 9. Age 48~IDC 1.5 cm ~ ER/PR+ ~ Her2Neg ~ LUMP~Meno after LUMP

Alternative Therapy

Carole 

HOORAY CAROLE!  I'm so happy for you!   This is THE BEST NEWS.  XO, Mary

Just a gentle reminder to everyone,

Please sign up for the TAILORX study.  Be sure and ask your doctor.  There is no cost and we can help others in the future.  PM if you need information.

Melissa

MBCR  Like you I was 49 when diagnosed and had regular periods, but the combination of chem + tamox sent me in to menopause.  My onc was hoping it would come back and had my hormone levels tested every 3 months for 9 months.  She wanted me to sign up for  a clinical trial on ovarian suppression but the chemo & tamox took care of all that.  I do have HOT flashes and a few more aches and pains than I used to, but overall I am back to "normal" after comleting chemo last Oct and starting tamox last Nov.  Feel free to PM if you have more questions.

Take care ladies!

Joyce

As others pointed out when I decided not to do chemo, the oncotype score is only one piece of evidence to consider. I agreed with them, because it was not the only evidence my decision was based on, and like any other assessment method it is not  (or should not be) relied on absolutely. In many cases it is the most precise way of assessing how a tumor is likely to behave, but that doesn't make it infallible. The oncotype website emphasizes that it should be considered with other indications when making treatment decisions.

OK Diva - We're right here with you.  And a tip of the hat to you for being in the trial - you are paving the way for our sisters in the future.  God bless you.  XO, Mary 

Thank you Mary, I am thankful for all of the women who have participated in trials in the past, so I feel good about doing my part too.

Wow, Luna5, a score 0!!  My 9 looks high in comparison.  Will you be taking an estrogen blocker?

Just PM'd my details (Onco 17 like the others listed same) Hey Luna that does rock!  So what was the TX decision at 0%?  Wonder if that means you now have LESS chance than a non-BC person to get BC!  Hope so