Oncotype number and decision regarding chemotherapy

YoungTurkNYC

ruthbru,

I agree with everything you just said.  I believe an over-reliance on the Oncotype DX scores has started; such that this score has started overruling all other factors which should go into a "chemo or no chemo" decision.  Perhaps, it is because this is a nice, neat and tidy number.  However, in some instances a low Oncotype scoring tumor has come back "high recurrence" risk on other types of tests such as Mammaprint.  I ask my sisters to please do your research on this.  In addition, the Oncotype DX is comparing only a few datapoints of your cancer with the cancers of others on a statistical basis.  Your individual cancer may have other datapoints which are not measured by the Oncotype DX test, or even if measured, your individual outcome may be very different.  At the end of the day, we each have, individually, either a 0% or 100% chance of recurrence, and we would all be best served in taking the totality of the information into account when making a "chemo or no chemo" decision.  My mom went from Stage Ia to Stage IV (she had no chemo).  She had no nodes involved, and had a full mastectomy on a 0.5 cm tumor (that is only 5mm) which was extremely highly hormone positive and no Her2.  And it still came back.  To this day, she regrets the "no chemo" decision, because now that the cancer has spread throughout her bones 13 years ago, she has been able to treat but not cure the cancer.  It always pops up some place else.  Perhaps that chemo would have wiped out some of the cells which had clearly already gotten out into her body prior to her surgery.  I respect everyone's choices, and this is solely my opinion, but the chemo decision is not one to be taken lightly, or just based on reliance on a single score.

MsPharoah

Ruthbru, you take the words out of my mouth!  If there was a chemo with 100% guarantee to kill our cancer, I'm pretty sure most, if not all people, would gladly have their hair fall out, throw on a wig, hug a toilet bowl and feel like crap for a few months.   A lot of effort (and medical expense)  is being put into stratifying our cancers between chemo and no chemo.  I have never been comforted by the fact that I might have a cancer where chemo is of little or no value.  What, it's still cancer, right?  To be honest, when my score came back in the middle of the middle and my onc said...."Let's do chemo", all I said is "OK, if we are going to do this, let's make sure we don't just piss my cancer off!"

YoungTurkinNY, I am so very sad about your mother; such a  sad reality about breast cancer that some women with stage 1a cancer progress.  Oncotype can calculate your risk for distant recurrence, but it is really either 0% or 100%.  If my onc had said otherwise, I would have gotten a new onc.  I agree with you that a good onc will take all factors into consideration in the chemo decision and Oncotype DX is just one.

And when chemo is right, it is our friend.... one that saps our strength, balds our heads, tires out our bodies...but still a friend.

 Love and huge hugs to those who wait.

MsP

ruthbru

I thought of chemo as my Navy Seals, ruthless in searching out & destroying the terrorist cancer cells. Cells who would kill me, for sure, if they had a chance.

Rosiesride

I never heard of an oncotype score until I joined bco...I was never given a choice...I had 3/11 nodes positive...54 years old..ILC stage 2b and my general surgeon was sure my MO  was going to " throw the book at me" since I was young and healthy...it was the chance to get those nasty cells!!  I never thought of chemo as "poison"!  It was more like liquid gold...valuable medicine to get the cancer cells that may have strayed!  Yes, my MO's treatment was TAC...6 rounds...now radiation with lumpectomy...then tamoxifen...it seems like that's what most ladies get...except taxol may be in place of TAXOTERE and not all 3 at one infusion....I hope it keeps the cancer away...faith and hope and treatment...and lots of prayers!!

Lenn13ka

My MO just said "standard of care" was chemo and then was quiet but , as soon as I declined she said she was totally OK with my decision. They have to cover their "arses" , especially if it IS standard of care. My second opinion, from a different institution, just said " I am giving you permission to skip chemo and I feel very strongly about that statement".  

Neither was too hung up on the lymphovascular invasion or small positive node or the grade 2/3. One was definitely more into the biology (Oncotype) than the other. I still see both and it is great to be able to hear the progressive and conservative approach. I make a decision after hearing both sides. I am fortunate to have these two great  MO's( and great insurance that let's me see both). 

jramick

I was never given an Oncotype score either!!!!! I had 0 positive lymph nodes but grade 3 Triple Negative.  I was NOT given a choice about chemo.  Like Ruth, I thought of chemo as "my NASTY friend but a TOUGH one".  It killed all cancer cells in and around the lump=total chemo response!

mmtagirl

For what it's worth, here's how I made my decision.  I have one positive node, tumor was 1.7cm, er/pr+, HER2-.  Was told standard of care is chemo.  I could enroll in the RxPonder trial and see which arm I landed in if my oncotype score was less than 25.  It was 16.  Went into the trial and landed in the chemo arm.  My MO knew the only reason I went for the trial was to get out of chemo.  He asked if I wanted to stay in the trial and I said yes.  Started TC, landed in the hospital because of reaction to the T. Moved to AC and will soon have to do 12 weeks of taxol.  So for a gal that tried to avoid chemo, too,  I seem to be in it for the long haul.  My MO and i have discussed it on several occasions and I believe that sometimes there is a divine intervention that leads us down an unknown path.  So, I don't look back and question whether I made the right decision, but, try to have faith that there is a reason why i am on this particular journey.  Don't like chemo, but, will get through it.

YoungTurkNYC

Lenn13ka,

MOs have to take the decision of whether or not to give chemo to a patient very seriously.  They take a risk both ways - 1) if they give chemo, and a patient has an allergic reaction or dies, they have taken a risk, and 2) if they do not give chemo, and a patient recurs, they have taken a risk.  Therefore, I believe most MOs want to make the right decision, because, frankly, it can go wrong whichever decision they make.  I had a very high Oncotype score (and I had two tumors with different biology and both high Oncotype scores).  I went to Sloan-Kettering, NYU and Columbia oncologists, and finally settled on my current MO at Columbia as we really do see things eye to eye, and before my Oncotype score came in, she already knew it was going to be a very high recurrence rate tumor.  Both NYU and Sloan oncologists wanted to wait to see the score.  All my MO had to do was to look at my pathology, and she ballparked the Oncotype.  I started the chemo before the score came in (because she wanted to start ASAP), and the scores turned out to be 48 and 27.

Janett2014

Rosiesride and iramick:

They only give the Oncotype test for patients who are ER+ and PR+ which is why you didn't have it. You may have already known that, but I couldn't tell from your posts. I was afraid you maybe thought your MO just wasn't on top of things. Sorry if I overstepped, but I wanted to make sure you knew that there was a reason for not doing the test. 

Lenn13ka

It was pretty much the same for me Young Turk. My Dana Farber MO took one look at the pathology and said  I can see why your Oncotype is low. The difference with me is that I had a very funky pathology (ductal, lobular and micropillary) and had to have three pathology reads to get a clear understanding of what was really going on.  In the end I trusted the read from the DF pathologist over anything else. And , I think my other MO was glad for all the information. With very strong ER/PR positive , making that decision " Will I benefit from Chemo?" Is a a tough one. Hopefully, the RxPonder trial will provide clearer data in the near future, especially for those with positive nodes.

You got your answer with you scores.

edwards750

We all know there is no perfect test. I'm not sure Oncologists rely too much on the scores in determining treatments but it does provide them with additional information about your specific tumor. My Oncologist was ambivalent about my treatment mainly because of the micromet in my SN. I am grateful to her for not rubber stamping chemo but rest assured if she advised I have chemo I def would have had it like it or not. Diane 

Rosiesride

janett2014...no I didn't know that!! Lol..I learn so much from bco!  I have a lot of faith in my MO, so did what was prescribed...with 3 positive nodes, I wanted to do all I can ....chemo sucks..but if it sucks the cancer out of you then Yey chemo!!

Janett2014

Here's the page on this site that has some good Oncotype info.

http://www.breastcancer.org/symptoms/testing/types...

Not sure why it doesn't show the whole address, but here's the rest after the word types

/oncotype_dx#Who

Lorbgoo

I was er+ and pr- and I had the Oncotype DX test. My score was 41 so my mo recommended chemo of course. I did 4 t/c and I am done as of May 19th. 

Janett2014

You're right. It just said ER+, not PR+, my mistake. 

cookiegal

Listen if I develop mets I hope I will not regret my choice.

This is how I broke it down.

No chemo=14% chance of mets (from Oncotype)

Chance of chemo stopping mets 2-4% (from Adjuvent online)

Chance of mets with chemo 10-12%

So if I get mets, there is between a 1-3 to 1-6 chance the chemo would have stopped it.

That means there is as much as a 5 out of 6 chance I would have still gotten the mets with chemo.

That's what I say I will tell myself. 

I know it is easier to say now.

It was not an easy decision. 

Loral

cookiegal...I evaluated the scores the same way as you.......

Grace3Boys

I just view Oncotype as one more tool to help guide treatment. My scores came back at 24 and 26. I meet with MO on the 9th and given it's a high intermediate score, I am leaning toward chemo. If I were 10/15 years older (I'm 51 and my youngest is 10) I'd skip it. I have a lot of favorable prognostics but there are a couple of things that concern my surgeon and MO.  I'm otherwise healthy so I am optimistic that I will be able to tolerate the treatment. I am not going to do radiation. If it were a high score, I'd do both. 

jramick

Janet!  Thank you and no I did not know that!  I too have had total faith in my onc Dr. - she was very thorough and stays on top of research too.  She has since left the practice of my team of cancer doctor's so I have a new oncologist.  I will go to the link you provided here and read up. I'm really glad you shared!

intothewoods

Hi everyone,

I noticed this topic so thought I'd jump in with my two cents. I had an oncotype score that fell in that gray area (I think it was 16 but I can't actually remember) My MO was pushing for chemo but I wasn't sure and decided to sign on for the TailorX Trial. I was randomized into the Tamoxifen only-no chemo arm. I finished 5 years of Tamoxifen in summer of 2012 and was at that point post menopausal. I declined additional hormonal therapy with an AI at that time. fast forward to this past Feb. I was diagnosed with a local recurrence to the chest wall and a bone metastasis. I jumped in to say that I don't regret my decision and I don't blame myself for not having had chemo. We make the best decision we can for ourselves at the time. There are no guarantees.

Hugs and good luck to all,

Lisa

Vikingqueen

Thanks, tuesday she scheduled me for a big 15 minutes what's up with that? I guess they do not tell you your score over the phone. Mind you I live 75 miles from any  onco doc. 

Lorbgoo

wow that's far. My mo told me my score over the phone. I would call back and ask for it if I were you. 

Vikingqueen

thanks im calling right now

Vikingqueen

They said there facility talks about treatment only in person. Rocky Mountian Cancer Center. The only benefit is when I go to city I hit Home Depot and stuff. Thanks Lorgoob I talked to my nurse navigator who said she will be in on meeting with me. Of course my hubby is going but he is the deer in the headlight guy.

Lorbgoo

that is frustrating. I'm sorry they didn't tell you. When is your appointment? So the mo can't call you back and tell you? 

Janett2014

My PS had me come in too for the Oncotype results, and we live two hours away. It was helpful to discuss it with him in person, and he gave me the prescription for Arimidex so we talked about that too. Yes, technically it could have been done over the phone, but I think I got more info by doing it in person. Also, like Vikingqueen said, my DH and I ran some errands that needed to be done. Then we went out for a nice lunch.

Vikingqueen

No they don't allow over the phone conversation on test results. My nurse navigator said "now is the time to treat me so there is never any second questions. What does that mean?? higher Onco score? ( She is being really nice) and I guess my Oncologist is super booked

They say she is at the cutting edge she is a woman 50 years old

cookiegal

Vikingqueen good luck with what likes ahead.

Ask for the full report not just the score. It is really informative what ever your choice is.

Into the woods, thank you for stopping by and your point of view.

That is good to hear that you are still at peace with your decision.

I thought of this for you!

"Mother cannot guide you.
Now you're on your own.
Only me beside you.
Still, you're not alone.
No one is alone. Truly.
No one is alone.
Sometimes people leave you.
Halfway through the wood.
Others may decieve you.
You decide whats good.
You decide alone.
But no one is alone."

Read more: Into The Woods - No One Is Alone Lyrics | MetroLyrics

MsPharoah

Hi, VikingQueen.  My MO's nurse gave me my score over the phone...as soon as I asked for it.   I already had an appt with the MO and we went over the details at that time.  I'm not sure what they think withholding the test results will achieve.  We're not apt to do anything crazy with the information and quite honestly, I liked having time to share the information with my husband and children before meeting with the onc.   By now, one would think that they know that waiting is the hardest thing we do during this process.   Since you will be cared for by this onc for many years, you may want to see if they will provide you with information over the phone in the future.

Good luck for a low recurrence score!

MsP

doxie

My MO called me with the score, but I'd insisted on the "chemo" discussion before.  The Oncotype score was delayed due to a lab error.  I was fairly certain I needed chemo based on my low PR+ and high KI 67.  Basically it was to tell me to keep my port appointment the next day and tell me I'd do fine.