Topic: Oncotype DX score of 20 received today

When your oncologist tells you the percentage of risk reduction that you might get from adding chemo, know that if the number is double digit, it is a relative percentage, not an absolute one.  50% of 13 is 6.5 so if your risk starts out at 13%, a 50% reduction would bring it to an absolute risk of 6.5%.  A 50% risk reduction sounds a whole lot more impressive than a 6.5% risk reduction, but they can just be different ways of expressing the same thing.

Your tumor is highly ER+ meaning that Tamoxifen should be very effective for you, and low grade which means less likely to be affected by chemo.

Is this onc someone that you trust with your life?  That is the really important question for you to get answered tomorrow.  Any oncologist can prescribe your treatment for you, but this is someone who will be a major part of your life for years to come, so they need to be someone you trust and have confidence in, and who has a general attitude toward treatment that is similar to yours (do you lean toward natural remedies, or are you a person who wants to throw everything possible at it).  Trust your gut instict, and get a second opinion if you are not 100% confident in the doctor and the treatment plan that you are presented with.

Cheryl - My oncotype score is 20, too.  Know that your decision is a toughie - there is no right and no wrong.  For me, it took forEVER to find peace with my decision.  My advice to you is to soak up all of the information, then let it percolate for a while.  You WILL find the answer.  And don't let others tell you what you should be doing.  There will be people in your life who will be upset with either decision you make.  This is your life, your fight.  Tell them to respect your decision. 

I chose to do chemo.  This is not to say it is the right thing for you to do.  My thinking is that I want to fight this disease with all I've got.  Treatment 1 was last Tuesday.  Its crummy, but it is do-able.  Also - there was a lot of news last week about node positive women and recurrence - did you happen to see it?  If not, just holler.  I'll get it to you.

One more thing - you will feel better once you have made a choice.  Peace is in your future - have faith.  XO, Mary

Cheryl,

I was dx in April, RM with no nodes.   I am a numbers person and wanted to see the benefits of chemo.   I read a lot of research studies and tried to decipher the statistics.   I also consulted three oncologists.    My onco score was 18.  I am 50 and strongly ER and PR +, Her2 -.    I too had the CYP26 test and found that I was a good metabolizer of Tamoxifen.

All that being said, I agonized over making a decision for almost two months - still w/in the recommended 12 week window.   I finally decided to do the Tamoxifen and have been at peace with my decision.   Some people will offer you their opinion, but it isn't their body.   If you can sleep at night once you make your decision, then it is right for you.   Best wishes.

Hi Peggy,  I sent you a private message.  You can access it by clicking on the private messages box on the top righthand side of the page.  You can tell you have an unread one if there is pink writing in that box.

This is, indeed, very frustrating...yesterday I met with my onc for the first time. I have a oncotype score of 23. He informed my husband and I that I was in the "gray zone", but given my age (43) and multi-focal tumor (2 tumors 1: 1.9 cm/2: 1 cm/same quadrant), he thought I should go ahead with chemo. I am stage I, ER+PR+ HER2-, grade 2. I have lost a night of sleep over this, so I called my surgical onc to get his view. He said the benefits of chemo are marginal in my scenario and thought a 15 percent reoccurrence rate is small - I told him it's only small if you're not in the 15 percent that reoccurrs!  Much to think about... I wish you all the best in coming to the ansewr that is right for you!    

I had an Onco Dx score of 30, which put me in the high group.  The score of 30 was a real surprise as my tumor was 8mm and the docs said my risk was very, very low. My gut reaction was to go for chemo but after charting out my scenerio, it appears that chemo would only reduce my odds by 3 %.  Plus I was taking Arimidex which gave me slightly better results than Tamoxifen. Decided in my case the risks outweighed the benefits.  Onco said he was comfortable with my decision and pointed out that I was Stage 1 and the OncoDx lumps together both stage I & stage II patients when creating their charts.  I still having lingering doubts but hopefully, I made the right decision for me.

Funny about your decision because the same thing happend to me.  My Onc score was 21, tumor size 1.5 cm, no nodes but the surgeon said just the size alone would make him recommend chemo, then Onc said this was in the mid range and left the decision to me but his recommendation was also IV chemo. This would reduce my recurrence score from 14% to 9%.  I said I was not going to do chemo but couldn't be comfortable with my decision - having trouble resting/sleeping, so I made up my mind to everything I could to reduce my recurrence, even it was 1%.  I had my 1st T/C today and I did okay.  Just waiting a couple of days for the se's to kick in and then I'll know.  I am very satisfied with my decision and will go for the rads and AI's afterwards,  It was a very tough decision and no one can make it for you.  Once I knew what I wanted to do, the rest fell into place. Good luck- with time and listening to your "gut" you'll know!

Rosered, keep in mind that chemo is a powerful, systemic toxic therapy.  The side effects can be significant and severe.  You need to weigh those negatives against the perceived benefits.  I had an Oncotype score of 22.  I was dead set against chemo, just didn't want to risk the physical and cognitive side effects.  I have family members who are active in cancer research.  One of them routinely refers to chemo as poison.  Rather than regretting not "throwing everything at the cancer", I knew I would truly regret for the rest of my life undergoing chemo if I had lasting impairments that affected my quality of life.

Everyone approaches this decision differently.  You have to do what's right for you.

Iovrymom and chelev, thanks so much for replying.  I can see why these boards are so helpful!  In my heart of hearts, I think that the no chemo option is right for me and I should just go with it. Its hard, but I'm getting there, to make a decision and move on.  Its good to hear from women in similar situations.  Thanks again!

Hi Cheryl -- Just thought I would add my two cents.....My Oncotype was a 16 -- and I was pure tubular as well with a question of possible isolated tumor cells.   I got three different opinions and did not do chemo.   While others with similar scores have offered advice, no one else is pure tubular -- is yours pure tubular?   It is rare, grade 1 and yes, supposed to be slow growing and for that reason, chemo is less effective.    If I had had a higher grade cancer, I might have considered chemo, but in my case, all three oncs said no and I had the top doctor at a major teaching hospital for one of my opinions -- the chief of oncology.

I will admit that I was expecting a lower Oncotype since I had tubular, but I am comfortable with my decision -- I am currently taking tamoxifen.

Good luck -- making these decisions is always tough -- I found getting more than one opinion helpful in my decision making.

My oncotypedx came back 19 and my oncologist said no need for chemo. just radiation and tamox. i'm going tomorrow for a 2nd opinion. IDC 1b, grade 3. I'm estro and proestro+ and her2-. Clear nodes. just want validation that i'm on the right track. I do not want to add chemo for no reason. definitedly need strong statistics to support it, it takes alot out of you. You will never regret a 2nd opinion.

Hi! My Oncotype was a 20. My surgeon and onc told me that I might get 1 or 2% benefit in recurrence rate with chemo. My rad. onc said he didn't think my onc would recommend chemo before I saw him. I'm 56 with a tumor of less than a cm and am est and prog + and node negative and Stage 1. I decided to go with the doctors' advice of no chemo and am happy with my decision. Am doing 7 wks of radiation and Arimidex after a breast infection that developed 5 wks after lumpectomy occurred.  Anybody have experience with infections so long after surgery? If it doesn't clear by Tuesday (5 days), I'm to go on IV antibiotics.

Good luck with your decision!

BoyMom, I was wondering how your onco visit went on Wednesday and whether you have decided anything.  We have similar stats:   I was 40 at the time of diagnosis and had a 2.6 cm IDC, grade 1, no node involvement and oncotype of 14.  I was given the choice or chemo or not, and I chose CMF chemo, so I could have the peace of mind I needed to sleep at night.  This choice is not right for everyone, but it worked for me.  I went into it feeling pro-chemo.  Obviously, some people don't, and that's great too.  You have to do what works for you.

Hi! just wondered why you hate the rads more?  I've got to start a 7-wk. course very soon. Am not looking forward to it, but I don't need to do chemo so am thankful for that!

Thanks for the reassurance that this is what I am dealing with and not another type of breast cancer that popped up.  I am actually better today after 4 doses of antibiotics so that is a relief.  Talked to the nurse at my Onc's office today and there won't be a problem with me continuing my chemo.  I will need to continue the antiobiotics but they don't seem to be causing me too much problem with nausea. Good luck, Enollen, with your journey!