Oncotype number and decision regarding chemotherapy

Vikingqueen

Wow your sounding like me. I am waiting for my oncotype results right now. I also joined Swog hoping for the non chemo arm. I feel I am above normal fitness category for people in my age. My question is when they compare recurrence numbers are they comparing to pools of people who have no other other health issues? When the difference is a 10% comparison or so it does not seem to offset chemo symptoms. My results should be back in 10 days. In the meantime I have my first born grad high school and going to college . My mind is being blown,,! Of course I am meditating,yoga, eating right and exercising but it is still a roller coaster.

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Vikingqueen

Reading the posts. I sound very similar  waiting for test results... 

ktfelder

Hang in there Viking. The waiting is the worst.

cookiegal

cat eyes I believe there was a woman with 4 nodes who had a low oncotype and really had to get some opinions. She was at least considering opting out.

Admittedly most people in your position would do chemo, I probably would.

However the direction of oncology seems to be that biology trumps staging. In the old node pos trial there were women up to 9 nodes. If you did oncotype and it came back very low it would create a very interesting dilemma. 

I am really guessing here, but perhaps at that point you might want to start looking for a clinical trial that had something in addition to just chemo. So I don't think the test would necessarily get you out of chemo, but it might change your plans.  This is not an easy call. Would you want you want to go through chemo knowing your cancer is not very responsive to it? 

What sort of access to trials and second opinions do you have, and how much knowledge do you really want? 

Sometimes this new genetic driven world is complicated.

elimar86861

Remember, it is not just that cancer was found in the nodes, but WHAT KIND of cancer?   Ladies, if you are strongly ER+ and a Grade 1 or 2, implying a slow growing cancer, (and that itself generally elicits a low Oncotype test score,) then chemo might not be all that effective.  Better to get right on to the anti-hormonals, which would be the better systemic protection for that kind of cancer anyway.

ktfelder, Your course of action sounds reasonable, given what is currently known with the Oncotype gene assay.  Hopefully, this type of testing will refine even more in the coming years, to leave less of an intermediate gray area.

cookiegal

it is interesting to me we are hearing from some higher intermediates opting out. 

RainDew

thanks for this thread ladies,

I am also waiting for oncotype to come back (so. much. waiting. At every stage...). Hopefully this is the last thing I wait for (other than finishing reconstruction surgery). 

Obv I'd rather *not* do the chemo, but I am young (39) and if it will help me live a long, healthy life, bring it on...

Rain

MsPharoah

Hi RainDew, waiting is so hard!  If chemo will benefit you...then you will surely see it as a friend.  Good luck with your results and let us know. 

MsP

Janett2014

Just got my Oncotype number: 16, so no chemo.

MsPharoah

Janett2014.  I'm sure you are relieved to finally have your plan in place.  Congratulations on a low score. 

MsP

Janett2014

Thank you MsP. Yes I'm pleased about the score. My exchange surgery will be on July 16.

I almost feel guilty when I come on these boards with good news, but we are all struggling in some way. I guess it's ok to be happy for the good news and to have empathy when the news is not so good. This is such a good place to express it all: the good, the bad, and the ugly.

MsPharoah

Janett2014,  I think breast cancer just plain sucks!  So when anything good happens to anyone, I do the happy dance.  I'm tap dancing for you, girl.  Good health to you for your coming surgery and take care of yourself. 

Love, MsP

Janett2014

Thank you MsP for your thoughts and for the happy dance!

Love, Janett

edwards750

Me 2 cookie gal. My score was 11 so my ONC recommended RADS+tamoxifen. I have IDC Stage 2, Grade 1. I had a non-aggressive tumor. I have to admit if my score had come back n the intermediate numbers I would probably have done the chemo. My ONC rules on the side of caution so she would have recommended chemo anyway. As it is my recurrence rate per the Oncotype test is 8%. Of course no one wants to do chemo. Also if I had different opinions to do or not do chemo I might appeal to the chemo board or the powers that be at the West Clinic where I go, as a tiebreaker. A friend of mine did just that. She did the chemo and had a double MX. To each her own though; just don't second guess yourself. Diane 

bellydancer

In 2010 when I was DX, the middle range (aka the "WTF range") started @ 18.  I had an Oncotype Dx score of 18! 

 I was Stage 2 as well however this was due to tumor size as I had no positive nodes. The Onco DX   was one of many tools I used to make my decision first was the subtype of the tumor I had, then the grade then node status and finally DX and a case conference opinion.

Please PM if you would like to discuss this further.

Take Care,

Debra

ruthbru

Janett2014, glad you got a clear answer on how to proceed. Best of luck!!!!

Janett2014

Thank you ruthbru. Yes it is nice to have something resolved that has been an unknown for several weeks.

Loral

Janett...Great news, I wish you well on your surgery...............

Janett2014

Thank you Loral, and I just took my first Arimidex about an hour ago. Have you had any issues with Tamoxifen?

Sunshineinky

Great news Janet! I was so happy to get my oncotype score back because it meant treatment could move forward!! Waiting is the worst and I agree with MsP BC sucks! 

I started tamoxifen on 5/20.  My only side effect as of today is night sweats!! I'm going to adjust my time I take it to see if that'll go away!

Janett2014

Wow. Side effects on day 9? I thought it would take longer than that for them to kick in!

Loral

Tamoxifen, I take it after dinner because it makes me tired, a few warm flushes and some vaginal discharge, some muscle cramps especially in calves and feet, and leg swelling calves and ankles. SE's not too terribly bad, so I'll continue to take it.

Vikingqueen

Let's say low onco score but capsular extensions in one  node. How close is that to vascular invasion?

Vikingqueen

Hey did you guys just say I don't want chemo to your onco? What if the dx comes back lower and onco says do chemo anyway cuz don't they need to protect their  practice

ruthbru

There might be reasons to do chemo even with a low score. The oncotype is just part of the picture and, BY ITSELF, should not be the SOLE determining factor as to what you should do next.

ktfelder

Viking - my onco said "Congratulations, you don't need chemo."  If you are unsure, you might want to get a second opinion.

Sunshineinky

Janet, I'm quite sensitive to medications so my side effects will be different than yours.  Last night, no night sweats.  I'm extremely premenopausal so regardless of any side effects I will be taking something to stop these raging hormones. 

My gyno recommended a ooperectomy. I'm not ready to go there just yet.  

ruthbru

Any good doctor is going to weigh things out & try to do what is best for each individual patient. Recommending chemo to someone's whose case does not support it is as dangerous as not recommending it to someone whose situation says that they do. By all means get a second opinion if you are in a gray area.

edwards750

Viking Queen - Actually I did say to my BS I didn't want to do chemo. I had just had my lumpectomy and the Path report showed a micromet in my SN. My BS was surprised so you know I was as well and upset. My BS is one of the 2 best in town but is a bit of a charm school dropout. He told me no one would hold a gun to my head. Smooth. Fortunately my ONC who makes the treatment call, not your BS, opted to have me take the Oncotype test. She said women have been over treated for years so the test was going to decide whether I had chemo. It came back@11 so no chemo thankfully. Diane 

ruthbru

No one 'wants' to do chemo; but if you 'need' to, it can save you life. Chemo is not the enemy, cancer is. I am just pointing this out so that if you are someone whose numbers come back high (which, of course, nobody wants) you will maybe be able to think of chemo in a little different way; that, thank goodness, there is treatment available which lower your chances of every having to do this (or worse) again.