Oncotype score-How can I be sure?

My score was 12..I chose no chemo and moved on to having a complete hysterectomy and taking hormonals.

I did kind of a pros/cons type list using my family history of cancers in general and the side effects (yes, some are VERY permanent) to make my decision. Since the chemo would have only added 1-2% benefit I chose to hold that in reserve in case I might need it at a later date...Heaven for bid!!!!!!!!!!!!!!!!

I think we each have to make decisions that we are comfortable with then find peace with ourselves in our heart with those decisions...

Im a bit over 2 yrs out now and just passed my last 6 month follow up dancing with NED(no evidence of disease).

I do have thoughts sometimes about maybe I should have done this or I should have done that but all in all, Im comfortable with my choices and decisions.

Best of luck and wishes

Jule

I know how you are feeling.  My onco score was an 18 and after talking with the doctor I elected not to do the chemo.  He told me the side effects outweighed the advantage for me.  Of course I was 58 and age plays a difference also over someone much younger.  I did not want any chemo as I knew to much about side effects and I was happy to walk away with the rads and hormonal pills.  I try not to look back and keep on going.  I willl go for my 18 month mammo and ultra sound the 23rd of this month.......

Hi lisalachelle,

I also had an Oncotype of 14, but I did do chemo.  But, my tumor was 2.3 cm with other areas of DCIS.  Also, I had vascular involvement and necrosis, which means the tumor is growing fast enough that the blood supply dies because it can't keep up.

But, if I was in your shoes and had no other complications, I would have skipped chemo with a 14 score.  Good luck in your decision!!

Hi, Lisa ~  Congratulations on that nice, low oncotype score!  I agree with MAMHOP that if you have any lingering doubts, get a second opinion.  I would also add, depending on where you're being treated, if you haven't already, you might consider going to or sending your records to a comprehensive breast center at a major university hospital.  The reason I say that is, they see far more bc than most local oncologists or hospitals, so would be more likely to see any areas of concern about your situation or be able to fully assure you more than other docs who don't deal with as much bc and as many onco scores in a year.   Good luck ~  Deanna

Lisa - my tumor situation sounds almost identical to yours and my oncotype was 19. My oncologist said that most people in my situation would not opt for chemo and that he was comfortable with no chemo but it was up to me. I went for a second opinion at Dana Farber In Boston and they very definitively recommended against chemo, saying that in my situation the risks of chemo were about as great as any benefit I'd get out of it. 

Hi Lisa -  I was diagnosed with stage 1 IDC in April of 2005 at the age of 44. My tumor was very strong estrogen and progesterone driven.  I had the oncotype test done and my score was a 19. I utlimately (after lots of thinking and reading - and there wasn't near the information that is availble today -  this was before the TailorX trial was started) decided to decline chemo (with my oncologists' blessing), had a lumpectomy, full breast radition, a  hysterectomy and have been taking Armidex since Sept 2005 and doing well.

It's a really hard decision to make. We have to weigh many factors and be comfortable with the decision we make -  there are absolutely risks with the decision to do chemo and risks with the decision to not do chemo.  We have to make a decision and then not second guess it.  That's whats' so hard ...  we don't know the outcome and don't know what will happen down the road. Where's that crystal ball when we need it ?? 

Hugs and hope you can make your decision and move forward - and then not look back!

Doreen  

I decided not to do chemo with a score of 15 after discussing it with my onco, surgeon, family doc, and plastic surgeon--who has had cancer himself. All of these doctors that I trust very much said no chemo, and cited potential risks over benefits in my situation. I did have one onco say I should do chemo, but it didn't feel right for me.  I'm on Tamoxifen and I have decided to have my ovaries removed in April.

Regarding the Tailorx Study the cut off numbers are arbitrary and do not mean the Oncotype numbers are incorrect.  It is most likely regarding statistics, by dropping their number down to 11 they will have a greater number of women in the "gray" area, resulting in the potential of a robust and defensible statistical out come. I've discussed Tailorx extensively with my onco and have a stats background, and I work for medical school and  research institution--although I am not a researcher, so I think it has to do more with research design than a flaw with the Oncotype numbers.  Even with knowing that I was frightened when I first saw the Tailorx cutoffs. It is a very vulnerable time for us.  I've learned that our treatment  is a very private decision and the best we can hope for is love and support from people in our lives as we make our decisions.

I had an Oncotype score of 15 and after much consideration decided to do 4 rounds of Taxotere and Cytoxan followed by the Tamoxifen.  I had one node that came back with a microscopic malignancy.  After talking with my oncologist who initially said that his gut was just to do Tamoxifen I just didn't feel good about it.  In my mind if my nodes were all negative I would have been OK.  I elected not to do additional lymph node surgery b/c it wouldn't change the chemo regime.  This is my second cancer.  I was diagnosed with Hodgkin's Lymphoma at 19 and at the time only needed 10 weeks of radiation after two major surgeries.  I just felt that I should do a little more than a pill and I didn't want to wonder if I did enough.  In my mind my 40 year old self could handle all this better than my 63 year old self which was the age my mom was diagnosed with IDC.  Along with my right mastectomy I elected to have a prophylactic left one just to be done with it.  I didn't choose reconstruction b/c I've had some many other surgeries and have a heart problem (heart failure not from chemo from pregnancy).  So while chemo was a concern due to my heart both my cardiologist and oncologist felt I'd fine with Taxotere.   I like EMILY2008 will take my 4% improvement for my daughter and DH.  I'm SO DONE with cancer and wanted to wipe out anything that "may" be thinking about misbehaving.   In the end,  you have to do what you feel is right for you.  Oh, and I prayed A LOT.

BTW, so far after round one of chemo, it's not THAT bad.  I'm having some blood count issues (see my post Neuprogen) but after about 7 days of iffy feeling, no throwing up, I'm ok.   Good Luck!

lisalachelle - My decision to have a hysterectomy was due to fibroids - I'd had uterine fibroids for several years that caused extremely heavy bleeding - I was taking the birth control pill to control the bleeding  - my tumor was ER +++, PR +++ as was being fueled by the birth control pill ... so I had to stop taking that (obviously) -  my gyn had been talking to me about a hysterectomy every year I went in for  my checkups ...  so... my bc diganosis made that decision pretty easy.  I was premenopausal at the time...  there's always more factors that affect our decisions. 

I can't wait for the TailorX study results to start coming in .. and wished I'd been able to participate in that study ...   I was too far out from surgery when the study was first announced.  

Doreen 

I think we tend to focus on the percentage gained by chemo (1-2%) and fail to see the flip side.  There is a 98-99% chance that it will NOT recur.  Doesn't that sound more encouraging?? To me, that is the better way to look at it.  Chemo is not without its risks.

 My score was 20 and my oncologist did not recommend chemo.  

This is amazing.  I was just in bed tossing and turning wishing I could find someone who opted out of chemo ( which is where I am leaning at the moment). I decided to come down and check this forum and here you all are having the very discussion I was looking for.

I have had 2 surgeries.  On the redo we got clean margins but less than ml which is  below the comfort level of the team. Much to my shock they were recommending a  mastectomy and chemo.

I have clean nodes and so far no evidence of spreading.  I have an MRI on Monday, and sent in the test today to see what my onco type is. I am in the 1c stage of ILC. Does this recommendation seem hasty?  I would like to go in for a better margin, and also wait to see what my score is. All these people are very poised, caring,  and I am sure have my best interest at heart but I am starting to question.

I do have the type that can use Tamoxifen

Hello everyone, thought I'd weigh in too.  My oncotype score was 17.  I opted out of the Tailor X study because I wanted to make my own decision.  I fell into the gray area where they randomize you into chemo/ no chemo.  When I asked my onco if he would recommend this for his own wife (assuming she had the same score), he said no.  However, he was very keen to enroll me!!  I think when all the results are in they are going to find that oncotype number is one small piece of the puzzle.  Tumor size, hormone sensitivity, histology (how cells look under the pathologists microscope), BRCA genes, and family history are all going to weigh in too.  I decided on no chemo in large part because of my breast cancer cell type (tubular) and family history (grandmother and mother had bc)-neither did chemo, both survived AND oncotype score.  Hope this helps.  By the way, I still question if I made the right decision.  But like everyone else here, you make the decision thats best for you and go forward.  Best of luck to you.