Recurrence with low Oncotype scores

scaredinnj,

My oncologist said that a high Oncotype number does not mean there will be a recurrence nor does a low number mean there will not. From what she said it is used to determine if chemo would or would not  be beneficial. But to answer your question, yes there have been people with low scores who have had a recurrence.

Best wishes to you,

Pat

Not to confuse things, but the Oncotype score is indeed based on a percentage who have a distant recurrence within the 10 year mark.  My 12 means I have an 8% rate of recurrence--that is WITH endocrine therapy.

From this website:

The Oncotype DX test may be able to help you and your doctor determine whether or not the cancer is:

• likely to recur
• likely to benefit from chemotherapy

Regarding scores and recurrences, my mother always said, "Someone has to be in the percentage who gets a return even in the low scores".  She'd love it not to be her baby, but I think what she said was quite poetic, because it is a bane on all survivors that any of us succombs.

while i was "glad" to get a low oncotype score of 6, I was less "glad"when i realized it was only drawing from some 660 women Iin my particular test- although their entire database is 4000)and their results/outcomes. Which is why I refer to it as a diagnostic tool (as the company does) rather than an indicator of recurrence (which the company also does after stating it is diagnostic), since the numbers are based on a rather small pool and suppositions of including chemo or not based on that small database.I think it is like anything else I have found in regards to BC...much indeed is a crap shoot. Some recurrences make no sense while others that seem like it should be expected do not-no matter which treatment is chosen. I believe it is a good tool at this point yet on the other hand have spoken with many women who now are second guessing themselves for either taking chemo or not taking chemo when they fell in the "gray" area. ACK- BC sucks indeed. BUt the women who have battled it do not:)

Hi,

I had a low Oncotypedx score of 9 and I had a recurrence within 4 years.  It is called a local recurrence but since it went to my breast skin, it threw me into stage IIIb.  It is all a crap shoot.

Good luck,

Nancy

Am I right that the recurrence score is without chemo and the objective of chemo is to further reduce the likelihood of recurrence?

HI scared in NJ,

I am sorry you are uncertain about the Onco score and its use in determining tx decisions. Obviously something is bothering you and I know its scary to feel as though you made all the right decisions along the way. Getting over the worry is hard. I am sure your  Onco used the test as another tool,along with all the other pathology results of your tumor when recommending treatment for you.

I have empathy for you and don't consider you the "worried well" as MJ stated. Its hard to make these decisions and feel comfortable untile time has passed. It takes really does take time and given you're only going on yr 2, I suspect as more time goes by you will feel better about your choices and feel comfortable that you made the right tx decisions as you continue to do well.

May I ask if there is something bothering you that is making you question your choices now? Make sure you tell your Onco about any issues and don't forget, you're still being treated.  I see you are hormone positive so the best thing you can do is take your antihormonal and make sure you follow with your onco for your regular appointments.  Being ER+, the anti hormonal is the key to continued wellness.

Stay well and good luck with everything.

Bevin

My Oncotype was 14, and I've had a LOCAL recurrence 16 months after my BMX.  Same area as one of my previous IDC tumors even though I had clear margins and clear lymph nodes.  And get this - I found it about three weeks after my OB/Gyn examined me and ONE DAY after my oncologist examined me.  When I showed it to her the next day, she wasn't too concerned, but she sent me for an ultrsound.  Even the radiologist was unconcerned - he thought it was a little fat necrosis, but just in "an abudance of caution" he agreed to do the biopsy.  SURPRISE - 8 mm IDC.  After having every scan known to womankind, the verdict is that there are no mets and this is truly local, so according to my oncologist it isn't a significant negative prognostic event (surgery is this Wednesday - let's hope they don't change their tune).  But from my perspective, the moral of this entire story is for all of us to remain every-vigilant, and never to worry about raising questions about things if you think they even MIGHT be a problem.  (I almost didn't go in because I went in once before for a lump in my armpit which turned out to be an infected hair follicle - basically, a zit.)

On the other hand, you can't go around re-thinking every treatment decision ever made, wondering if you should've gone another direction.  My oncologist made a big point to tell me not to worry whether or not this would've happened if I'd had chemo - it would've happened anyway because apparently tamoxifen hasn't been suppressing my estrogen enough.  That's right, I'm just too much of a woman for it ).  But that's just not something they could know in advance.  This will all be a giant pain in the ass - my reconstruction is complete, but I have to have my implants removed (at the same time as the lump), then have radiation, then have my ovaries taken out so that i can switch to AI's, then re-do the reconstruction (which hopefully will work out OK post-rads).  But because I was paying attention and advocated for my care, a pain in the ass is all it will be.  It won't kill me.

 Sonnet

mtks....sounds like a muscle/nerve issue. There are nodes there and they usually get swollen if cancer. I had a painful area like that, but I have always had pain after my surgery (7 nodes removed) and it is easy to hurt that area working at something. It went away but comes back if I do anything strenuous. I hate this worry business. ALWAYS follow your gut. It's smarter than your brain sometimes. Most times. Good luck and sending (((hugs))) your way.

thanks bluepearl, I am having muscle nerve issue in my right forearm. Sharp prickly pains at any time, even just sitting. My arm is sore most of the time. I had sharp prickly pains on my left side of my head for 1 1/2 months now I guess it's moving to diff. places. I saw a neuerologist and he said I had carpel tunnel and tennis elbow-go figure. He said I have no reflex in my rt and lft knee and lft ankle.I don't do anything repetitive or have done any streneous work. Why is this happening?????  I do have a cyst in the pinneal region of my brain. It has increased 1 mm in size but the neurologist didnt really address it.?? Maybe it's no risk. I do have headaches that I just deal with and at times get "off balance". If I knew what as wrong I could deal with it, it's the NOT KNOWING THAT DRIVES ME CRAZY!