Oncotype DX test results - how reliable??

JanMarch

I'm premenopausal (age 42) and I got the Oncotype DX test because my nodes were negative and my tumor was less than 2 cm (my tumor was 1.7 cm, grade 1, ER/PR +, Her2-).  My score came back low (8) and I had 2 oncologists tell me that they wouldn't recommend chemo based on the Oncotype score.  My questions is this - is this score reliable for premenopausal women?  The test is based on studies of postmenopausal women and given that it's a relatively new test I'm a little concerned about the reliabiltiy of it with respect to whether or not chemo is recommended.  Just about everything I have read (including this website) said that premenopausal women who are node negative and have tumors over 1 cm should probably get chemo.  Thoughts?

prayrv

Pam,

The oncotype dx test is for pre-menopausal women.  They have discovered that it is beneficial for post meno as well.  Here's the link from Genomic Health on that issue.  http://www.genomichealth.com/OncotypeDX/Index.aspx?SId=33

There are soooo many different variables with breast cancer that each case should be handled individually.  I had an 8mm tumor and a score of 12.  Yes I ran as fast as I could from chemo.  As far as reliability it has been included in the National Comprehensive Cancer Network (NCCN) 2008 Breast Cancer Treatment Guidelines.  So I would assume that it's fairly reliable. 

Good luck on your decision - what does your onc say?

 Hugs,

Trish

Anonymous

I too had a score of 12 and turned my back on chemo!!!!! I think the test is fairly reliable...I think it is a very useful tool in making choices about doing/not doing chemo.

Best wishes

Jule

JanMarch

Trish - that makes me feel better knowing that it's included in the NCCN treatment guidelines.  My onc says that tamoxifen is the weapon of choice for me, given that the tumor is very strongly positive ER/PR.  I got another opinion and that onc said the same thing.  I certainly don't want to do chemo if I don't have to, but I guess there's just a fear that's perhaps a bit irrational that makes me want to be sure that I'm not missing anything.  I just want to be know that I've covered all of my bases as best as I can.  But I guess I need to accept the fact that there are no guarantees where cancer is concerned!

Jule - Thanks for your post.  It's interesting to see what scores people got on the test and their decision about chemo.

samiam40

Please check out the New Oncotype DX Roll Call thread in the Chemotherapy topic and you will see lots of women who have posted their oncotype scores and the treatment decisions they have made.  Good luck!

Sukiann

I just asked my oncologist this question yesterday, then I read your post today!  Great minds think alike (or is it obsessive minds think alike?   ) anyway, he told me that they developed this test using tissue samples of patients from years ago. Because the samples were from many years ago they know the outcome - meaning they know who had a recurrance and who did not.  The problem is the grey area and that is where the Tailordx trial comes into play.  The extremes are the most accurate.  This mean that the low scores and high scores are very accurate.  After following the patients who's tissue samples showed a low score they had a very low recurrance rate and those that scored high did have a high recurrance rate (I'm not sure how chemo plays into this - I'll have to ask him to explain it to me again). I hope I am explaining this right and you can follow what I'm saying.  If you score in the grey area, they don't know if the chemo helps or not.  They will not know this until the trial is done and the results are available in about 20 years from now!!

JanMarch

Sukiann - That gives me alot of comfort since my score was so low.  I have alot of confidence in my oncologist and since I had two very well respected oncologists tell me no chemo I am comfortable skipping it.  I found out my score 2 weeks ago and celebrated my reprieve from chemo, but then yesterday some doubts started creeping in.  I think that is the nature of having a cancer diagnosis....the unknown can bring on fear and doubt from time to time.  I'm hoping as more time goes by, the fear will lessen and I can get back to a somewhat normal life.

meb

Pam,

I just went for my first radiation consult and my onc said that in the past everyone got chemo and only 3% of the women needed it. The oncotype dx test determines those that will benefit from chemo. My score was high 36 but with chemo & rads it puts me at the same survival rate as those that didn't need the chemo. I say if you don't need it, you don't want it. Good luck with your decision.

gnut

I'm so confused now.  I have recently diagnosed with bc and now finished lump surgery.  I have Oncotype result 8 and I went to three oncologists and got three totally different treatment plans.  I have IDC 2cm, stage II, grade 2, ER+  PR+  HER2-,  2/4 nodes with .4mm positive.  One onc said I only need rads and tam, one said I need chemo, rads, and medicine, the other said I better get mast, chemo, rads, and tamaxifen because I'm 44 years old.   

hlya

gnut:  I guess the arguement comes from your positive nodes,  this is a grey area that they are still not sure whether the test works for nodes positive people. 

hlya

meb : you are Grade 2, 1 cm tumor, no nodes,  but your score is 36....hmmmmmm

kira1234

hlya, My score is 24 with a .6cm grade 1, no node . The scores are all over the place from what I see.

gnut, I agree with hlya it's more than likely the positive nodes. I was also told to do chemo, but had to stop after the first chemo because of SE's.

karen

hlya

Karen:   I am shocked!  May I know your ER % PR % (the actual percentage?)

btw I didn't see you in ILC forum.   Is your ILC  Pleomorphic?

kira1234

hlya, My ER is 98% and my PR is 34% on the tumor and 78% with the core biopsy, so I'm figuring it's really the 34%. I don't think I've been on the ILC forum, but guess I really should post there. Not sure what you mean by Pleomorphic. My path report shows Notingham score:

 Tubular formation:3

Nuclear pleomorphism:1

Miotic Count:1

Total score/grade 5/low

hlya

Karen: wow your PR status  from surgery is very different from biopsy, some clinic didn't do the ER/PR test if it was did in the biopsy. 

Pleomorphic is a sub-type of ILC which some people said is more aggressive than traditional ILC,  an ILC lady here caught her BC at very early stage but she was struggling with chemo because of her Pleomorphic type.

Thank you!

kira1234

hlya, no the same clinic did not do the surgery biopsy. And to make things even more comfusing my oncotype test came back PR negative. Go figure 3 different results for the PR. All my Dr's have said oncotest most likely wrong for PR.

As far as i know i don't have Pleomorphic ILC. I do know I had a lump found on my yearly mammagram. In fact my breast surgeon questioned whether it was ILC from the core sample because they were not sure on the path report but thought it was. He had it retested by his clinic which was the same one that gave me my results from the lumpectomy.

My chemo problems are from something called radiation recall.

Karen

molly1126

I just got my oncotype score which is 20. ER+PR+HER2-, Grade 2, 1 lymph node removed, clear also margins were clear. My onco said chemo. Can't decide what to do.

ninap7

i am awaiting my oncotype dx score - i am premenopausel and was wondering if the test would be accurate (do you only have to be post menopausel)?  i too hd one node positive -

BarbaraA

Nina, doesn't matter if you are pre or post. Oncs are usually more aggressive about recommending chemo regardless of the Oncotype score if you are young.

susie1999

Hey gnut, you sound like me.  Except I'm 48years old. er/pr positive and her2neg.  Just heard about this oncs score thing yesterday. The oncologist actuallly said he and his colleagues at the same hospital all have differeing views.  His point was for me to have surgery first (my tumor is 2.4 cm the auxilla biopsy showed involvement, don't know how much). During the surgery they will determine how many nodes. But because of the high percentage of er/pr positive score my body may not respond to the traditional chemo, but should do well with the hornone therapy.  So he did not rule out chemo completely, just thinks it may be a milder dose because of nodes...it almost felt like if there was no node involved  i wouldn't need the chemo.  The infor isn't believed the same by all the oncologists...until it is I want to do everything possible to be cancer free.  I just fear the radiation, thin skin under my arms. Than what happens to me?  I'm with you and glad I found you on this post. Keep me informed ...thinkn of ya...susie

audra67

Molly-

I had bilateral mastectomy first of all so as no (low) reoccurrence chances of getting it in other side..I have same type, size etc. as you and oncotype score of 21.that is the low intermediate area (grey area) and they are not sure how well chemo works with this, every graph, chart, thing I looked up did have a little tiny dip upward, so I think it does do something! .I saw 2 different oncologists and have family member that is plastic surgeon. One oncologist said they are not sure how much chemo may help decrease chance of reoccurrence but might by 3%, next one said it would decrease it by 1/2....and my family member said he would do ANYTHING needed to get any extra chance of killing those cells that might be mutating and not cancerous yet...I am scared to death, but I am going to do it!

FairyDogMother

I'm 36 year old with Stage IIA, 2.5 cm, ER+PR+/HER-, node negative with a high score in the low recurrence range for the Oncotype Dx, but there is some research that premenopausal women didn't far well with the bell shape curve. I had one oncologist wouldn't give me chemotherapy if I ask for it due to medical insurance if I got sick I could sue the hospital. I really didn't want to do chemo. My oncologist surgeon suggested we run a mammaprint (71 genes) tested. The mammaprint came back with the need for me to do chemotherapy. When I got that result I cried, because chemotherapy was the ONE thing that scared me with cancer. I now start Nov 20th.

emq2

How was your first treatment?

FairyDogMother

today is day 3 post chemo and my throat feels like I have strep. The Onc gave me steroids, amoxicillin, and a mouthwash I can't get until Monday. I got myself up and walked 1.5 miles because I'm not going to let the SE win. The neulasta shot makes my calves hurt and I'm taking Claritin for it. I guess SE hit later for some people.

emq2

You go girl!!!! I love your attitude. I just came home from my 1st appointment with my Oncologist. My head is swimming. I have 1 week to make a decision as to which why and which cocktail I will receive. She gave me 3 choices. I was told I have a 16% reoccurrence rate and with chemo it drops it down to 10%.

Which regime are you on if you don't mind my asking???

FairyDogMother

I’m on 4 treatments of T: Taxotere® (docetaxel). C: Cytoxan® ( cyclophosphamide). My reoccurrence should be down to 10% or less. I don’t keep up with numbers, because my chance of getting cancer was less than 2% at my age. I plan on getting myself up tomorrow and driving to 7 hours for a scent detection trial with my Labrador. I have a driver and I figured I can stay home in pain or I can move forward. I might be stubborn for doing such a feat. I can rest in the car and sleep in the hotel. As I told my hubby tonight, this is what cancer feels like well I’m not going to let it win. I’m drinking about 130-150 oz of water a day since chemo. I drink about 92 oz of water a day anyway. Yes, I have down days but those are just obstacles in this journey.

Emq2: You can do it. Keep a journey. Ask for help when needed, and go kick some cancer booty.

emq2

LOL, I plan too. I love our strength, overall attitude and determination. My Oncologist gave me the choice between AC; TC: or CMT Treatment. Lots to think about. I meet with her again the Tuesday following Thanksgiving. I believe it is 12/03/13.

FairyDogMother

I didn't have a choice. They won't give me AC because of my age afraid of heart issues in the future.

emq2

That's good for you actually since I understand the side effects with TC or CMT are less. Stay strong!