Oncotype DX Test Score: 20 -- Chemo or No?

VMP440

Understanding that every case is different, here is mine:

Age: 63

Good health with the exception of the obvious...

IDC, Stage 1, Grade 1, Lymph nodes clear, MRI clear, lumpectomy, 1.9cm.

Detected during mammogram in April, lumpectomy three weeks later. Lymp system is clear, nodes and margins clear. Was assuming just radiation and Tamoxifen would be needed, but Oncologist offered up the Onco test in meeting with him. Wasn't really pushing it due to the cost from what I could gather. Score came back as a 20; 13% recurrence chance. 

Breaking it down, that's 1 in 8 chances it could return. 

By doing chemo, he said should cut that risk in half -- so 1 in 13 (7%)

Concerned with the long-term potential side-effects of chemo, and if the treatment is worth the margin gain...which is still an inexact science, and no guarantee it won't come back. Borderline score, but don't want to live in regret should something return. 

Dr. didn't really want to commit to what he would recommend...."it's up to you"....after a barrage of questioning he at least offered up, "well...their report and lab said you don't "need" it..." 

Just confused, overwhelmed...looking for some similar advice or stories, decisions, outcomes...

Moderators

Hello Vmp440

Sorry that your circumstances have brought you here but we would like to welcome you to the breastcancer.org community.

The members are here very supportive and kind.

Sometimes it can be helpful to post in a few places to find the right thread for you.  

Some other forums that you may find helpful are below. 

Chemotherapy: Before, During and After

IDC

60+ thread

Kind thoughts

The Mods. 

AlaskaAngel

VMP440,

It is so hard to "know", both for you and for your care provider. All I can do for you is share that confusion and a somewhat similar diagnosis, as you request.

You and I differ in that you are diagnosed at 63 and I was diagnosed at 52, and while more is known now than was known when I was diagnosed in 2002 and you have more information than I had, the decision really isn't any easier now than it was then.

I'm 63 now. I wish I hadn't done chemo myself, but I can't say for sure that it didn't make a difference. For me, a big part of my confusion was because my providers did a terrible job of communicating, and it doesn't sound like yours are at all like that for you. Mine were very conscientious, hard-working, kind people, but even in hindsight I have to say that they simply were not as impartial and truthful as yours seem to be about what they do know and what they don't.

If talking together a bit helps, I'm glad to do that. It might just help you to ask your providers some other questions to see if you can figure out your own situation better.

AlaskaAngel

MomtoIrishQuads

Vmp - just curious what you decided to do?  I'm right there with you with a score of 21.  My oncologist also told me it's up to me.  

After talking to another oncologist I decided to do the chemo - started last week.  I have to tell you, I had a rough time of it.  I didn't expect to feel so bad and it was a bit scary as I had body twitches and heart palps.  I'm not in great physical shape (50 pounds overweight and haven't exercised in a year) so maybe that had something to do with it. I'm thinking about dropping out of the chemo regime (just in time for my hair to fall out! LOL)

Please don't quote me on this - but my surgeon told me that there is some indication that a score of 25 is the magic cut off - but the research isn't in yet - so this might be spurious rumor.  

Deb

bt-nj

I have the exact same question. 

my diagnosis - ILC stage 1, grade 1, 0/0 nodes, ER/PR+, her2-, genetic test negative, lumpectomy and sentinel node biopsy 6/2/2014, radiation 7/3-7/15/2014 [almost done!!!] . Oncotype score 23. I am 50 years old, single and otherwise in near perfect health [never had any chronic conditions or prescriptions]. This is my last week of radiation and I am still running and biking.

Now I need to decide if I want to do chemo. Got 3 doctors opinions: 

#1 CMF + 10 years HT, 

#2 10 years HT only, 

#3 AC+T + 10 years HT.

I have spoken to local friends who have gone through chemo already, most will say their doctors recommended chemo and they did it, most would decide to do it again.

I have done a ton of research, mostly clinical trial data and American Cancer Society. I can see almost no scientific data which indicates a statistical advantage to chemo plus HT over HT alone for stage 1, grade 1, 0 nodes. There are many obvious side effects to chemo.

I would love to hear from Stage 1, grade 1 women, who were offered chemo and opted out. I have found none in my local bc community. Tell me your opinion, why you decided to opt out? would you decide that way again today? how long ago?

And from those with similar diagnosis, who opted in on chemo - Am I missing something? what am i not considering?

love and prays to all

Jazzygirl

Hello- I was diagnosed in Sept 2012 and had the oncotype score on both my invasive and DCIS tumors.  I had double lumpectomy and internal rads on both breasts. I am 54 and was in relatively good health right before all this happened, except I had a ruptured appendix around the same time as the diagnosis.

The oncotype for my DCIS was very low (12) but the invasive tumor was 23 (or 15% reoccurrence). I was told by my BS and the oncologist that below a score of 18, there is no benefit to having chemo, above a score of 30, there was documented benefit. But everything in the intermediate zone between those numbers was unknown. There were studies being done around that time (not sure if they have been published yet but thought they were due out last year) to show the benefits of doing chemo for those in the intermediate range. I would ask your MO if there is any published data on this available yet? My guess is maybe not if he told you it is up to you?

BT- I am very similar to you except I had the DCIS too. I am about the same age as well. The MO said that if I took the AIs, it would cut my risk in half (around 7.5%). He said if I wanted to treat it aggressively, I could do chemo and that would bring it down to a 1-2% reoccurrence. He said that was up to me. He did recommend that I do the AIs and started me on anastrozole (generic for Arimidex). He said the protocol was 5 years, but there was new data that suggests that up to 10 years on the AIs may be warranted. 

In the end, I rejected to do any chemo but did start the AIs the following month. There are known statistics that some early bc patients will get over treated and we all know the chemo can be very damaging to the body. I did not want that for myself. But this was also a decision I had made years before after having watched a lot of family health issues. I personally am not interested in aggressive treatments. I am more interested in quality of life. I am a single woman with no children and that does factor in our decision making around how much treatment we are willing to do. 

I am almost two years from diagnosis now. I started the anastrozole and although that is also not easy the first six months, I have adapted to that. I was slightly osteopenic at baseline when I started and will get checked for bone density again end of the year. I have been through three six month mammos and BS check ups so far and doing fine. I work, and am physically active as well.

If you do go on Arimidex/anastrozole for the AI treatment, there is a thread here where women talk about and help each other with recommendations around the SEs. 

Questions? 

bt-nj

Thank you Jazzygirl your information and insight are very helpful to me given so many similarities. To provide you a bit of updated info. The most recent clinical trial i found is TailorRX which is studying effectiveness of chemo on ER+ and intermediate Onco scores. It is closed but the data is not yet released. Also I noted on the Oncotype test results that on page 1 the chart from clinical trial B-14 says my 10 year recurrence risk [score 23] is 15% [based on 5 years HT]. Page 2 is based on clinical trial B-20, it says my risk is 11% for the same factors. I called Genome Health [Oncotype DX] and asked what the difference was. They said both clinical trials tested the same thing with about 650 participants, b-14 produced 15% and b-20 produced 11%. Interestingly both MOs suggesting the chemo used the 15% number and did not mention the 11% - when i asked both were not able to identify the difference between the 2 trials.

So i do the math, say my risk is really 11%, and by doing hormonal therapy for 10 years [which i understand is now standard based on significant results] and then this cuts 11% in half, now i am at 6%. So does chemo reduce this further? and if so by 2% or 4%, or not at all?

SO CONFUSED, and frustrated. it seems the more i learn the more clear it is - that the MOs really do not know, they are making their best educated guess and erring on the side of "over treating".

-----------------------

Anyone, if you see errors or omissions in my thinking - PLEASE let me know. this is important and i don't want to be blinded to the ugly truth

Meow13

Hi VMP,

I was 53 in excellent health mine was grade 2, Oncodx was 34 I just could not accept that chemo was right for me.

I wasn't willing to accept the risk of chemo I did hormone therapy anastrozole now on exemestane. I feel a little  crappy from those drugs. I am 3 years out, doctor says I'm still in excellent health, but now I have ringing in one ear and neck pain from the AI drug.

Three years doing fine. The 23% reoccurance risk was calculated with tamoxifen not AIs.

Happy with my decision, you need to ask yourself do you think Chemo is worth it alot of people say yes.

bluepearl

As a general rule, grade 1's don't respond to chemo all that well, so even the 6% difference is pretty odd. I had a grade 1, exactly 1cm, Ki67 was less than 10%....no chemo. Second one was less than 1 cm but a grade 3, still no chemo. Sometimes I go back to stats BEFORE oncotypedx just to see. You might try cancermath.com as well. I kinda wanted chemo with the grade 3...it's a real tough call. So 13% chance of return......87% chance it won't vs. 93% chance it won't.  Chemo isn't something to take too lightly either. It does save lives, no doubt, but cancer can still come back even if you have chemo. Perhaps adding exercise, good diet, melatonin to one's habits would be of equal benefit too. (women with low levels of melatonin have higher chance of getting breast cancer AND recurrences). without poisoning your body unnecessarily. I don't know. You could try it just to see how you do. It could be not too bad, or unbearable.

LtotheK

Just piping in here as someone who saw a number of folks with grade 1 tumors that had high Oncotype scores. Oncotype marks a new moment in understanding this disease--not all tumors within a grade act the same.  The Oncotype parses risk within the grades.  It's my understanding that grade, like stage, will probably morph into a different risk evaluation system with all the new genetic work being done.

My take is age plays a big role. I chose chemo even with a low score of 12 because the studies indicate chemo + hormonal therapy is a higher benefit together for young women.

So many things to consider, and as we all know, hardly a good way to make an informed decision on the particulars.  It's still such bucket aggregates...

Jazzygirl

BT- You know your risk falls between 11-15%. If you do chemo you will still need to do HT regardless. I would ask your MO what doing chemo will do to reduce distant reoccurrence? What is the new number you would be living with? Is it 6% or something else? Then maybe you will have the balancing number and be able to make a better decision. Because there is no real clinical data to support the benefits of chemo since that TaylorX trial is still unpublished, the MO's won't be able to tell you what to do. I was hoping that study had been published by now.

What helped me to make a similar decision going through treatment was around what type of radiation treatment to have and here is how I did it. Internal radiation was recommended for me vs. external, but I had to go to another state to have it. I had a very hard time understanding why I could not do external radiation here instead? 

In order to really get my head around the whole thing, I had to break it up into pieces to understand the pros and cons of both options. The clinical benefits, the costs, and the risks either way I would have to live with. I did my own mini-analysis to figure out the pros and cons, the finances, and risks and that really helped me to get to my decision. This was my body, my financial health, and my longer term prognosis, and my quality of life. My medical team was impatient at points with me, but I told them I was working through my decision and needed more info. I talked to two rad oncologists, figured out what everything would cost, and what I would be living with longer term with either treatment type. I ended up doing the internal rads and won't say it was easy going out of state for treatment, but I have never regretted the choice.

Get all the info you feel you still need to make this decision. Write down all the questions you still need to know. What is the upside and downside of doing the various options the MOs have given you? It will help you to make a better informed decision.

In the end, I still feel good about the choice I made not to have chemo and just do the AIs. I do take very good care of myself these days too. 

Nancy2581

I have IDC with grade 1.  My tumor was 2.8 cm with 1 lymph node involved.  I also had LVI so I am doing chemo.  My onco didn't do the onco test on me and explained why.  It's ok I just want to throw the kitchen sink at this disease.  I don't want to think I didn't do everything advised to kick its nasty butt

MomtoIrishQuads

BT - I didn't read my oncatype report closely enough - but if you look at Page 1 vs. Page 2, it tells you what chemo might add to the mix.  First page shows you a graph with just hormone therapy and page 2 shows you what chemo will add.  I have an oncatype of 21 and the difference between the two for distant recurrance was 4 points (13% vs. 8%).  I started chemo before I realized the smallish (IMO) difference.  Chemo was really hard on me - you won't really know if you will sail through it or not.  I dropped out after one treatment (TC) because  I felt like I was damaging my body (and I have sailed through many medical issues in my life) - and I wouldn't do it again if I had  "do over".  Of course, if the TailorX study shows that it helps, then I'll be happy that I did one treatment.  Chemo isn't something to be taken lightly - it definitely can take a big toll on your body.  IMO, unless your doctor tells you that you will benefit, consider it very carefully.   

rivercaralee

Hi bt-nj,

I have the same oncotype score, 23, and I never noticed the difference between page 1 and 2!!!! My page two is so small that the graph is not as readable, and it does not state the number (percentage) but it can be inferrred and read on the graph only.  I can't believe I did not notice this.  I chose not to do chemo, by oncs said that below 25 they tend to say no chemo, and I very much wanted not to do it.  A bit of a natural girl, I am.  I am 51.  Needless to say your post has been very helpful to me!! Do you know by chance your exact ki-67 score, I would like to get mine, as i see in some literature it is used as a prognostic indicator.

Owlgram

Thank you for the referral to a statistics site. Minor correction - the site to check the statistics on treatments is cancermath.org   

edwards750

It's a tough decision to be sure. I am IDC Stage II, Grade 1. My ONC ordered the Oncotype test for me because I had a micromet in my SN. She said drs have been overprescribing treatment for women for years so the test was a good tool to help her decide my treatment plan. 

My score came back@11. Chance of recurrence 8% with taking Tamoxifen for 5 years. I am 3 1/2 years out. I had 33 RADS treatments. The intermediate scores are the most troublesome. 

I am the poster person for anxiety so if my score had come back in the intermediate area I would have done chemo. Lets get real no one wants to but I knew I would be second guessing myself if I didn't-  but that's me. Just don't be one of those women, and there are several on this forum, who look back and say wish I had..

It's your life and your call. 

Diane 

noonrider

I had IDC and my oncotype was 18. However, I cannot take Tamoxifen or (I forget the name of the other one) because of significant stroke risk. That puts my risk of recurrence approximately 25%. Chemo was a coin toss for me.  I am 47 and have 5 kids with Down syndrome at home. I opted to do chemo (just had last treatment 4 weeks ago) and will be having BMX in September and my ovaries out in October. There were soooooo many things to consider when making my decision about the BMX. Also, my husband's previous wife passed away from BC in 2001, which added to the stress here. 

voraciousreader

1. With a score in the OncotypeDX dreaded intermediate range with a grade 1 tumor, I would request the Mammaprint test as well.  Mammaprint is another genetic test that tells you one way or the other if one would benefit from chemo.

noonrider

My insurance denied genetic testing because I don't have any first degree relatives with BC, and no relatives under age 50 with BC. However my SISTER now has a first degree relative under age 50 with BC (ME!!!!) and she can get tested!!!! Irritates the snot out of me.

voraciousreader

Spring...I wasn't referring to family inheritance genetics.....I was referring to another tumor genetic test.  With respect to your denial did you request a formal appeal?  You can also appeal to your state insurance department.

noonrider

My doctors are actually writing to the insurance company themselves. I was going to use the BRCA testing to help me make my decision about having a BMX, but the appeal process takes months and I don't have months to make the decision. They cited our state law on testing. (It is state insurance)

voraciousreader

i would also talk to your state senator and ask for their help to move the process along.

waitingtoexhale15

I decided on NO chemo after me onco dx test came back 16. I will be taking hormone therapy.

pselma72

Hi. This is my first post so bear with me. I am Black and 54 and was in excellent health. Diagnosed with DCIS May 2015 and had a right breast mastectomy with reconstruction and sentinel node biopsy on August 18.2015. I am now told that 6mm was found in one of the nodes and I am DCIS and invasive ductal. HER2 negative and ER positive. An auxillary node dissection was suggested. Onco is 20. Reading and praying for insight. Thanks.

voraciousreader

pselma....sorry you are joining us. Presently, there is an ongoing study examining whether chemo is appropriate for 1-3 Node positive , early stage ER + HER2 NEGATIVE PATIENTS.The study is called RXPonder

SWOG: SWOG RxPONDER Trial (S1007): Patient Information

Furthermore, next week an important study regarding intermediate OncotypeDX score patients is going to be announced. So, you might benefit from this study's announcement.

In the meantime, may I suggest you get a second opinion and/or, have your case presented to a tumor board. That is a group of oncology specialists who examine cases that aren't cut and dry.

Also, register at the NCCN's website and read the breast cancer treatment guidelines. Read the professional version (red logo). Look carefully at the footnotes AND the discussion section around page 100 that discusses endocrine therapy.

That said, you still have good prognostics. That means you will have lots of good choices....Hang in there....once you have a treatment plan in place, you will feel better!

radgal

Only one company does all the Oncotype DX tests and their name is Genome Health.

Google them. I was looking at their website yesterday as there were quite a few helpful videos.

My Oncotype DX tests are now in the hands of two medical oncologists but I won't see them until Tuesday, Sept. 29th.

The wait is torture!

My prayers are with you and with whatever decision you make.

If you haven't already done so, I would encourage you to post this question in the chemo forum too. Perhaps those gals can share with you what they did.

Hugs!

cleo1973

I am 41 and was just diagnosed with Grade 1 Stage 1 invasive ductal ca. sentinel node negative. I had a lumpectomy for 1cm lesion a few weeks ago and am waiting for the Oncotype Dx results. I am scouring the internet for how necessary it is to have chemo with a score over 30. I thought radiation sounded scary until I found out that chemo was on the table. Any thoughts, information or similar experiences would be appreciated. Also, am being told that chemo would be before Rad in that case. ? Thanks.

Meow13

Grade 1 might not respond as well to chemo. Do you know you pr and er status? I had an oncodx of 34 and didn't do the recommended chemo. So far so good but many do the chemo to "throw everything" at the cancer.

cleo1973

I was PR and ER positive and her negative

Sjacobs146

I don't believe that my doctor would have recommended chemo in your case. My Oncotype is 23, but I had a positive node. My docs told me that if it weren't for the positive node, they would not have recommended chemo. I am also grade 2 and only 48 at diagnosis. There are risks with chemo, one of them is a risk of developing leukemia.

ladykati

Hi Cleo1973, I had the same diagnosis as you and had a lumpectomy 9/17/15. I am now waiting for my oncodx score. Should get it in a week. I don't want chemo. someone just sent me a series of youtube videos called "the truth about cancer" https://go2.thetruthaboutcancer.com

Did you decide on chemo?