oncotype test results

peg2

Hi, I am new here, have stage 1 breast cancer, had lumpectomoy and all clear. Nothing in lymph nodes,thankfully. I had the oncotype test however, and results show I scored a 20, low to intermediate range for reoccurence. Since research is still being done, doc doesn't know if chemo will help at that stage, so doctors are recommending chemo because if it comes back, it is much more aggressive. Just wondering what others with a score in the 20's, or 18 or 19 were advised to do. I feel I have no choice as it's an unknown right now; I certainly don't want it to come back stronger than ever. Any experieces would be helpful, thanks. Peg

odie16

Hi Peg.

Sorry you have to join us but hope you find the comfort and knowledge here like I did. I was stage 1 with clear nodes and had an oncotype score of 13. My onc did not recommend chemo as the benefits would not outweigh the risks, besides we can save the big guns for if it recurs. Seems to me that we each have to do what we feel is best for ourselves as there is no right or wrong answers. Go with what your gut tells you so you can sleep at night....

Hugs!!!

Moderators

Dear peg2, 

While you are waiting for more members to reply, you may want to check out some information on the Oncotype DX test on the main breastcancer.org site. 

We hope this helps! 

sweetpea23

I agree w/ odie16. You need to be able to live w/ your decision. My oncotype is 18 and we decided to forgo chemo. I got a second and third opinion but ultimately you know what is best for yourself right now. I also had a lumpectomy w/ clear nodes and have started radiation. Take care!

mdg

I was a 17 on oncotype. I got two opinions - one said no chemo and the other recommended it.  I had LVI in my pathology and was a grade 2.  I was 45 at dx and have a young son. I had to make a decision I could live with so I did the chemo.  TCx4.  I used cold caps and kept my hair.  A year later - I have moved on with my life with my hair.  I am glad I did the chemo.  I know I would have always wondered if I should have done it...I am a worry gal by nature.  You do have to make a decision you can live with.  It is a personal choice...no right answer...only the right answer for YOU.  Good luck!

gutsy

I had an oncotype test score of 21 and I decided to go for chemo. I had a Sentinel Node biopsy which was clear, only 1 sn was taken. I wanted to do what I thought would give me more piece of mind. I don't regret my decision eventhough I have some lasting side-effects (nothing too bothersome). My children were 9, 7 and 2 at the time.

kamico3

I had basically the same stats as you, though my tumor was grade 2, and an oncotype score of 19. My oncologist said it was up to me whether to have chemo or not, that I probably didn't need it but that I could have it if I wanted to. Got a second opinion at Dana Farber in Boston and they definitively advised against it, saying that the chance that it would help me was equal to or less than the chance that the chemo would hurt me. So I didn't do it. These decisions are so hard to make!

auntienance

My oncotype score was 26.  My MO recommended chemo, but told me it was up to me.  I opted for it and did TCX4.  I didn't want any regrets down the road.  It was an agonizing decision but one that I was satisfied with.

Belinda977

I had an oncotype score of 19.  My MO would not give me chemo.  He, too, explained the risk outweighed the benefit.  It's a worry but I am starting to feel OK with my decision to not seek chemo from another doc.  For me, my tumor was 99% ER/PR receptive and the MO feels the tamoxifen is the most important thing in my treatment plan.

cacrew

I opted for the mammaprint tests vs the oncotype dx test.......this one checks 70 DNA genes vs. oncotype's 19 DNA genes.  I had never heard of this test until my MO offered and explained the difference between the 2 tests.  Unlike oncotype dx.......this test has no "gray" or intermediate range........you either test high or low.  For me...this is the direction I need to go...I'm a black or white person...in the end it has to be a decision you can live with and not continually wonder what if.........

misshopeful

hi peg... hope you are doing well.This is kinda late but your oncotype score is 20 and exactly the same as mine. i had Bilat mastectomy last feb 7... clear lymph nodes, clear margins, had two tumors on right breast 1.4 & 1.3 cm.. im confused whether to do chemo or not. Im 37 and has 2 kids 13 and 12 y.o.... what treatment did you chose and how did you come up with your decision?

Northern100

Hi

Just to give you my story. I was diagnosed through routine mammogram I had 5mm very small tumour grade 2/3.my oncotype was 20. I did 4 dense dose ac and 12 weekly taxol. I was 40 at the time. The oncologist did not give me a choice he said get the chemo mainly because of my age. His words were he wanted to get this the first time and take agreesive approach. He has told me because of all treatment and small tumour he confident it will not come back. I have four children so wanted to do all I can . I finished the chemo in November 2012 and I now fine . Good luck with your decision this disease is so confusing .

misshopeful

Northern100... Thanks for the response. I decided to do chemo TC X4 ... Will start in wed. 3/27... I hope i made the right decision. 3 factors i considered are the tumor grade (grade2), my age and i had 2 tumors. Hope you are doing well. God bless

Rebex

Hi all,

5 weeks post op from bilateral mastectomy after being diagnosed with stage 1, grade 2, node negative BC. My margins are clear thankfully and I am BRCA 2 positive. I am waiting for the results of my Oncotype and its driving me crazy! I have this nervous feeling in my stomach that hasn't gone away since I found out I have BC. My oncologist feels strongly about chemo but wants to see what my Oncotype result is. Am I crazy to request chemo regardless of my result?? I struggle everyday with all the 'what if's'. And seeing as I am BRCA 2 positive I have a higher chance of recurrence anyways. I fear the oncologist will only recommend Tamoxifen. When I told the social worker at the cancer clinic my fear and that I feel chemo will put my mind at ease her response was "chemo isn't all that fun you know"....like I don't already know that!!! But I'm this far into this BC journey and I don't really want to revisit it in the years to come.

misshopeful

Rebex... Hope you are recovering well from surgery. I know choosing the type of treatment is nerve wrecking and draining. I suggest just wait for the oncotype dx result. It will help you decide.I hope you will get the lowest score. All the best to you

AllieM

Rebex,  I struggled with the "to chemo" or "not to chemo" question so long it was almost too late to do anything! I don't remember ever having a more difficult decision. I would suggest getting a second opinion at least - after you get your oncotype report if you still feel conflicted. Some people get a third. Not that I didn't trust my MO, I just thought that someone else may have a different way of explaining things, or a different outlook that would help me decide.

A couple of points to remember when you do get it - the oncotype isn't just grading the BC by how bad it is, it is giving you the likelihood of whether chemo will work or not. There are some types of tumor that have characteristics that generally don't react positively to chemo. This is where you have to measure the potential positive effect against the negative effects. Also, one thing that confused the heck out of me was that the MO's would give me lots of numbers and probabilities, and you have to separate the "survival" numbers and the "recurrence" numbers. Just because the survival number is high, doesn't necessarily mean that you won't have to deal with it again, it just means that you will live longer. That may not confuse anyone but me, but I am mathmatically challenged.

jsrose14

I am in a very similar boat rebex. I had my surgery in march and I have been trying to decide what to do about chemo. My mo said she did not feel the risks outweigh the benefits but the if I wanted it she would give it to me. I got a second opinion which I found to be not helpful at all. I am going for my third opinion this week and just found out that when the redid my pathology ( most places will request your slides and redo their own path report when you are getting a second opinion) they found lvi. If you are unsure I would definitely suggest getting a second opinion and asking them to review your slides. I am brca2 as well and had an oophorectomy also with my surgery. My oncotype was low risk at 16 but my grade was 3. I am struggling as well but my mo that I started with is really understanding and easy to talk to. She is open to discussion and understand the struggle I am going thru. She said that I did need to make my decision by this Monday so I will see what happens on my final consult this Thursday. Unfortunately there are no easy answers. I am only 40 and have a 4 and a 12 year old so like everyone else I want to be there for them as long as can! Hope you find some answers!



Jsrose

ChickaD

Hi ladies. .when do you get the oncotype test?



Dana

jsrose14

After you pathology comes back from your surgery. If its indicated. As far as I understand if you are stage 1 or 2 and node negative they will order it for sure. I see you are her2+. Not sure how that affects the oncotype test. Definitely talk to your breast surgeon. She was the person who ordered mine and pretty quickly after the final path report.



Good luck.



Jsrose

edwards750

peg - I had the test done and so glad I did. A friend who is a radiologist told me it was a good barometer of your particular tumor and it provided additional ammo for the ONC to decide on treatment. My score was 11 so my ONC said RADS not chemo. I am Stage II, Grade 1. I did have a micromet in my SN but according to my ONC and my BS and Genomic Labs who conducts the test a micromet is considered node-negative. The test is pricey but BCBS paid for mine. It was 5k in 2011 but my friend said the cost is coming down. The dilemma for ONCs are the intermediate scores...in the mid to late teens. A lot of factors go into deciding like the size of the tumor, your age and how aggressive the cancer is. I would def recommend having the test done if you can. It told me my cancer was not aggressive, smaller than first thought and I have an 8% chance of recurrence. No guarantees but at least it is encouraging. Good luck...diane

netty46

Again I say I don't believe in this oncotype test. It never existed yrs back and thank god. Alot of women on this board have recurred for listeningbto these stupid results. My question here is does oncotype guarantee no stray cells?



Chemo is thevonly thing that kills whatever stray cells are lingering.

lekker

If chemo always worked and killed all stray cells, while doing no harm, we would all get it "just in case." The fact is, chemo doesn't truly cure breast cancer (meaning - do a given chemo protocol and it will guarantee 100% of patients will never see the disease again) - if it did, no one who had chemo would ever have a recurrence. Many women who receive chemo never recur and many women who don't receive chemo never recur - and some recur no matter what treatment choices they made. How do you know which camp you're in? You don't. I don't. The oncologists don't and oncotype doesn't. It's all just calculating your risk - risk of recurrence weighed against the risks of doing chemo. I had a hard time skipping chemo but after three different oncologists said the risks outweighed the potential benefits, I had to come to terms with it. Was it the right decision? Only time will tell. I made the best decision I could with the information I had at the time with a low oncotype, grade 1, negative nodes and no LVI.



With my score of 13, I was given a 9% chance of distant metastasis within 10 years without chemo (but with 5years of tamoxifen). That means that 9 out of every 100 women with a similar tumor to mine are stage 4 within ten years and 91 aren't. Oncotype doesn't guarantee there are no stray cells - in fact it says that 9% of women not only had stray cells, but stray cells that figured out how to take hold in another part of the body within 10 years (and remember, the risk of recurrence of ER+ low grade tumors doesn't go away at the magic 10 year mark). So why not do chemo? I don't want to be one of those 9 women! If chemo guaranteed me that it would kill every stray cell, I would've done it. Unfortunately they know that chemo doesn't always work - some tumors are chemo resistant, some would respond to one specific protocol but the MO gave you something else, there's speculation that cancer cells learn to "hide" from chemo by mimicking nearby healthy cells, etc. The number of women with my tumor profile who recur even after doing CMF and tamoxifen is still over 5%. Chemo itself is not without risk so you have to figure out where your risk tolerance is and make your own decision using all of the information you have at the time.

edwards750

Good post lekker. We all know there are no guarantees and no one, least of all me, is saying the Oncotype test is gospel because it isnt. BC is a crap shoot no matter which way you go. You go with the best information available and the advise of people who are more knowledgeable than we are. The ultimate decision is ours of course but I dont regret for a second having the test done. Of course I would have gone with chemo if I had had a intermediate or high score or if I had a large tumor or an aggressive cancer. Drs dont know why some women get bc and others with similar stats dont so how is it that the treatment plans or tests would be fool proof?

netty - you of course have a right to your opinion. You sound very angry about this test. I respectively disagree it is a stupid test with stupid results. So again to you there is no 100% test or treatment. My decision was also based on information gathered from the Path report, etc., even before my ONC ordered the test. I would be willing to bet the women who decided to have the test done made their decision based on other factors too. BC is a disease that doesnt discriminate apparently. We all have the fear factor it will come back. I know I am paranoid sometimes about every ache and pain. I am better than I used to be but how can you totally not worry. I have worked on it not controlling my life however. Chemo does have risks and it doesnt kill stray cells either. Rads have SEs too not the least of which is scarring the lungs and heart issues if your cancer is in the left breast. You just have to sort through which is the proverbial lesser of the two evils and go forward. Its an individual choice. Diane

AllieM

I agree that it is an individual choice no matter how many tests you have and what they say.  I'm pretty sure that if I was ten years older I would have said no to chemo. Yes, there are lots of people on here who have had chemo and it came back anyway, and there are lots who have been clear for more than 10 years. Some people have long lasting negative effects from treatment and some come out of it just fine.  There are so many variables and everyone has different priorities in their lives. I know that I had pretty much no risk factors for getting BC in the first place. I am thin, in good shape, had three children that I breast fed, eat pretty healthy, don't drink except every once in a while, no family history. Who knows why it does what it does. All we can do is weigh the information and take our best shot.

runnermom1956

I have been waiting for my Oncotype Dx results since March 27th. I got them today. I scored a 26. I am off to see my MO tomorrow, I feel I will opt for chemo if offered. I don't feel like gambling and having to worry every night if I made the right choice for me. I wish it was more clear cut..but I came inot that gray area..figuires. Now I was anout 2 weeks away from getting these TE exchanged and I suppose I will have to wait..for one or the other? In your opinion, what is better? to get the TE exchanged then get chemo or visa versa? UHG too many things to thing about.

thanks for listening

runnermom

AllieM

Runnermom, my score was 27, so we are very close. It will be interesting to hear what your MO said. I ended up opting for chemo, but it was a very hard decision. Best of luck to you and lots of hugs.

Allie

Rebex

Thanks for all this great info ladies!

I can't stop reading everyone's experiences and decisions they have made.

I was under the impression my Oncotype result would be back by today and had scheduled myself an appointment for a second opinion for tomorrow. The result isn't back and now feel like I jumped the gun and wasting people's time. Ugggg...now what?! My husband says we should still go and speak with the Oncologist. She is a 'high risk breast oncologist' so maybe she can provide me with more information, who knows.



I am not enjoying this waiting game!!

Cuetang

Rebex-- can you call genomics and see when they will have the results? I had called and they gave me the exact date they would release the results to the doctor.

Rebex

Thanks Cuetang! That's a great idea. I am going to try that now

tmb173

I scored 25 with a 16% reccurrance.  Am trying to decide on chemo.  

I feel like there are factors on both sides.  The "good" is no lymphnode invlovment, clean margins, relativeley small tumor 2.1 cm, and ER and PR receptive, HER negative.  The "bad" tumor was invasive, poorly differentiated, and I am only 34.

Of course- the score is also in the grey area.  I want to see the % chemo would lower my number- anyone have a similar story?

misshopeful

Tmb173.... Im 37 y.o., oncotype dx 20... Hormone receptive, her 2 neg. ... Clear lymph nodes and margins. It was a very hard decision for me but i opted for chemo. When i told my MO about my decision he said hed rather have me do it than not bec of my age. I think there factors you need to consider when making uour decision, tumor size, tumor grade and your age. I hope this helps. Good luck to you