ONCODX Score

DianeL820

ONCODX Score

DianeL820

Hi all....

Unfortuntely, im now one of your sisters......and i really can't believe just how many of us there are out there.....its almost surreal!!  I am not coping well with this, but i push myself everyday to move forward.

Newly diagnosed - - 2 surgeries later - - starting radiation and tamox next week.  Does anyone know much about the onco score?

Anonymous

Hi Diane:  I know quite a bit about the oncotype dx test and score.

Do you have your pathology yet ?  Was your tumor sample sent for oncotype DX testing ?    Do you have specific questions ??  I'd be happy to help you with your questions ....

Doreen  

DianeL820

Hi Doreen....

My path showed stage I; non lymph invastion (according to the Sentinal Node bio); non vascular invasion.  Tumor was .45cm - they assure me its quite small and the Onco DX was 13.  I am doing radiation for 3 weeks at a higher dose and starting Tamoxifin next week.  I read too much on these sites and i've seen others with the same DX, but lots of recurrences....im terrified and i dont sleep well at night.

Anonymous

Hi Diane -  I'm soo sorry to read that you're terrified and not sleeping well at night.  I know it's very scary -   your cancer was found very very early  and your oncotype score is in the low risk of recurrance. was your cancer IDC or ILC ? Do you know what the grade was ?   How old are you?  Generally all of these factors are taken into account. 

I was diagnosed with  stage 1 IDC two and a half years ago  at the age of 44 -    my tumor was .9cm ER+++,  PR +++,  Her2-neu negative and no lymph node involvement -  the grade was 2 or 3 (depending on which pathology report -  biospy or tissue from the lumpectomy).  I had the Oncotype DX test done - it was really new at the time -  my Oncotype score was 19.   My oncologist left the decision on whether to do chemo or not to me -  after lots of hard thinking and analysis I chose to decline chemo -  I did have a hysterectomy and removal of my ovaries (other factors involved) and had radiation and am now taking Arimidex. I'm doing well.  

If you are interested -  you could choose to consider participating in a trial -   TailorX  -Here's some info about the TailorX trial- you'll notice that the TailorX trial is focused on a broader group of scores -  it spans the high end of the low risk area,  the intermediate risk area, and the low end of the high risk area -  the intent being that they are trying to determine what the cutoff score is for where chemo is truely a benefit - and not overtreatment or undertreatment for a specific case. 

the bottom line is that you need to feel comfortable with the treatment you are getting - none of us knows  what our future holds ... we have to make the decisions we feel are the right decisions for ourselves...  as we live with them.

"A large number of these women are receiving toxic chemotherapy unnecessarily, and we need a means of identifying them," said Jo Anne Zujewski, M.D., senior investigator in the Clinical Investigation Branch of NCI's Cancer Therapy Evaluation Program. "TAILORx could help change the way we treat breast cancer and improve the quality of patients' lives, helping to better identify women who are likely to benefit from chemotherapy from those who are not."

Oncotype DXTM measures the levels of expression of 21 genes (whether they are transcribed into messenger RNA) in breast tumors. This assessment can more precisely estimate a person's risk of recurrence than standard characteristics, such as tumor size and grade. Based on the Oncotype DXTM gene expression analysis, a recurrence score from 0 to 100 is generated; the higher the score, the greater a woman's chance of having a recurrence if treated with hormonal therapy alone.

Women will be studied for 10 years, with an additional follow-up of up to 20 years after initial therapies. Based on their recurrence score, women will be assigned to three different treatment groups in the TAILORx study:

* Women with a recurrence score higher than 25 will receive chemotherapy plus hormonal therapy (the standard of care)
* Women with a recurrence score lower than 11 will receive hormonal therapy alone
* Women with a recurrence score of 11 to 25 will be randomly assigned to receive adjuvant hormonal therapy, with or without chemotherapy.

TAILORx is designed primarily to evaluate the effect of chemotherapy on those with a recurrence score of 11 to 25. Women in this last group will comprise 4,390 women, or about 44 percent of the study population. Because the degree of benefit of chemotherapy for women with recurrence scores between 11 and 25 is uncertain, TAILORx seeks to determine if the Oncotype DX test will be helpful in future treatment planning for this group."

here's a link to a web page which has more information about the TailorX trial  http://www.cancer.gov/newscenter/pressreleases/TAILORxRelease 

I hope this is helpful,  

You also might want to talk to your doctors about anti-anxiety medications and/or sleeping pills.    Many of us rely on medications to help us ....

Hugs,

Doreen  

TJinNC

I'm hoping someone has more recent experience.

Diagnosed in Aug 2016. Lumpectomy in Sept 2016. 1.5 cm. PR/ER + HER neg. Clear margins and negative in lymph nodes.

OncoDX score came back as 20.

My oncologist said - below 18 - chemo is not going to help much. Over 29 - he would fight me if I choose not to have chemo...BUT the middle - well - that is where I have to make a decision.

The TAILORx study won't have results for folks that are scoring similar to me until Dec. 2017.

The Oncologist said with this score there was a 13% chance or distant recurrence. I'm 56 and very healthy save this cancer.

What I want to do is this: begin radiation..and endocrine therapy. Reassess when the TAILORx results come out.

Does anyone have anecdotal experience with an OncoDX score of 20? What treatement did you opt for?

BarredOwl

Hi TJinNC:

You didn't mention the histology (e.g., ductal, lobular, other). Was the tumor invasive ductal carcinoma (IDC), invasive lobular carcinoma (ILC), or something else? These entities have some distinctions.

Anyway, a second opinion from another medical oncologist ("MO") at an independent institution may be very helpful to your decision-making process.

You may also wish to inquire whether an additional test might be informative in your particular case with your specific clinical risk profile, or if not, why not. For example, some members with intermediate Recurrence Scores have received a recommendation for further testing by MammaPrint (plus BluePrint) (from Agendia Inc.) or Prosigna (Prosigna Breast Cancer Prognostic Gene Signature Assay, from NanoString Technologies, Seattle, WA).

"What I want to do is this: begin radiation..and endocrine therapy. Reassess when the TAILORx results come out."

Please confirm it with your MO, but unfortunately, I think you may need to make your final decision at this juncture. This is because there appears to be both a preferred sequence and timing for initiation of adjuvant chemotherapy. Regarding the sequence, the National Comprehensive Cancer Network (NCCN) guidelines for breast cancer (Version 2.2016) provide:

"Chemotherapy and endocrine therapy used as adjuvant therapy should be given sequentially with endocrine therapy following chemotherapy."

Regarding timing, even if that estimated December 2017 date is accurate and there is no unexpected publication delay, it is not feasible to initiate a chemotherapy regimen in December 2017 in a person receiving surgery in September 2016 (i.e., about fifteen months after surgery). While studies in this area are not entirely consistent, it seems unlikely that chemotherapy would be prescribed to you so late in time. See for example:

Chavez-MacGregor (2016): http://jamanetwork.com/journals/jamaoncology/article-abstract/2474437

"Over 29 - he would fight me if I choose not to have chemo. . ."

Please note that the standard cut-off between intermediate and high risk is not "29". The standard intermediate range includes a recurrence score of 30 (i.e., standard intermediate range is 18 to 30, with the lowest score in the high risk category being 31). For documentation from the scientific literature regarding the standard ranges (<18, 18–30, ≥31), please see this post:

https://community.breastcancer.org/forum/69/topics/840731?page=1#post_4624429

Regarding your decision, please note that in the intermediate range, it appears to be appropriate to consider other clinical and pathologic features of disease together with the Recurrence Score. Please be certain to discuss this information with your current medical oncologist and in any second opinion to ensure accurate understanding and applicability:

http://intermediate.oncotypedx.com/en-US/Using-The-Intermediate-Recurrence-Score/Integrating-The-Intermediate-Recurrence-Score.aspx

See also this page from the test provider with a graph based on the node-negative ("N0") studies of Paik (2004) and Paik (2006). Please be certain to discuss this information with your current medical oncologist and in any second opinion to obtain their professional assessment about this information and to ensure accurate understanding and applicability:

http://intermediate.oncotypedx.com/en-US/The-Recurrence-Score-Result/How-An-Intermediate-Recurrence-Score.aspx

I am a layperson with no medical training, so please confirm all information above with your medical oncologist(s).

Hopefully, others will come by soon to share their experience.

BarredOwl

Rebeccam

Hello Doreen, I received an Onco test of 19, and my oncologist recommended Chemotherapy but didn't really go into the specifics of other options...I am concerned about the risks of Chemotherapy....very much so...I started at Stage 1 but upon removal that showed clear margins, I ended up at stage 2, grade 3 aggressive...I am 46, a mom...Was contemplating 2nd opinion....as my gut instinct is telling me not to do chemo....feel like the risks of chemo outweigh the percent risk of recurrence....pressure to make decision soon.

Meow13

Rebeccam I felt the same way. I just had a strong reaction to doing chemo. My brain was screaming no don't do it.

I really believe chemo will not kill all the cancer cells. I'd rather rely on my immune system.

tennischick888

Rebeccam...I would definitely get another opinion. I have come to learn that this decision has much to do with what you are comfortable with. I know someone who had a score of 23. One oncologist said to do chemo so she went for a second opinion at Memorial Sloan Kettering. After her consultation with the second oncologist, she was comfortable with not doing chemotherapy. My OB/GYN Had breast cancer and her Score was a 19. She Went to a couple of different places for opinions. She was told she did not need chemotherapy From Sloan-Kettering. But she ended up using a different oncologist Who understood her fear of not getting chemotherapy and said that It was up to her to decide what she can live with. My OB/GYN said that her score was 88% which is a B+ and she could not live with that. She wanted to get an A. She opted for chemo.

tennischick888

Want to add to my earlier post... Both of the people I was referring to were at stage one. Lymph nodes were clear. I was told ahead of time by my breast surgeon that if I was at stage 2, I for sure would need chemotherapy. But I wonder what my medical oncologist would say. My score came back as a 12. My appt with my MO is on 11/7 so I am going to ask her.

keepthefaith

TJ, I have a similar DX; onco-score of 21. You can see my TX below. My MO left the decision up to me. You might see about getting a Mamma-print test done. It gives you a high or low risk...no middle. Best wishes~

rescuebird72

how you you start a post. . New her

rescuebird72

I just received my oncotype score which is 15 and I need to make the decision of chemo or no chemo. I am 3 weeks out from having lumpectomy and reconstruction. I am. Stage 1A. +estrogens and progesterone, negative in lymph, and HER NEG. DX-tumor was 7MM infiltrating ductal carcinoma,also DCIS AND told now found LCIS both breast. 7 cm total removed during lumpectomy. Not sure what direction to go for treatment. I'm am 50yr old

bcincolorado

Hi rescuebird,

My score was 17 and my onco said the risks of chemo outweighed the benefits and would only reduce my recurrence rate by about 2%. I was not 50 when I first diagnosed. It is definitely a decision that you need to make with your onco and a personal one. For me I was willing to forgo the chemo and he willingly agreed but everyone is different and their choices are different. I know all those choices at the beginning are so difficult to make and sometimes it is easier when people just tell you "you should do this" but with breast cancer they really don't and that can be very overwhelming. Just have good conversations with your loved ones and your medical team so you can make the best decisions for you. Best of luck to you for a great outcome! Sounds like you were fortunate enough to catch this early at least.

Brutersmom

My score was 24. Like you I was given a choice of Chemo or no Chemo. I went to a Cancer teaching hospital and saw a specialist there. After meeting with him and discussing it at great length I came to the conclusion not to do chemo. I had a 16% chance of a new occurrence without chemo but it only dropped to 12% with chemo. After hearing the risk of chemo and the % of benefit it was easy to make a decision. I found it interesting that after I made the decision the only Dr. who did not feel I made the right decision was the MO. I recently switched MO's because 6 months after radiation he was still negative about the decision that I made.

maryny16

Hi - new to this forum --

I was diagnosed in Sept. -- 1 CM invasive lobular nuclear grade 2 (onco type 13) and another invasive .5cm nuclear grade 1 (oncotype 15). and DCIS nuclear grade 2/3. 10 year history of LCIS. Double mastectomy. I am on Lupron and just starting taking Arimidex --- am 47 and premenopausal....

I am worried about the studies that show the benefits of chemo on the hi-end of the low Oncotype scores (above 11) and asked my Oncologist to do a Mammaprint to make sure I couldn't' benefit and he said he doesn't believe in the test. Does anyone have any suggestions and how much would it help? Don't want to look back and wish I had done chemo. Also, are there any other genetic tests I should have done to figure out any other targeted therapies (for Luminal A, any other tumor markers, etc).

Right now I am not doing Chemo based on two doctor's recommendations but want to make sure I do everything I can to fight this -- i have two young kids and am a single mom...

Feel behind on the genomics curve.....

Any suggestions would be great. Thank you.

mellee

mdnmmrl, I would absolutely get the Mammaprint! Oncotype and Mammaprint look at different biomarkers, so their findings don't always overlap. But if you get a low-risk result back from Mammaprint, I would be pretty confident in foregoing chemo. If you come back as low-risk on Mammaprint, you can also infer that you are almost certainly Luminal A (this according to the Mammaprint physician I talked to today), which has a good prognosis and is not very responsive to chemo.

As to the your oncologist who doesn't believe in the Mammaprint, you can point him to The MINDACT trial results recently published in The New England Journal of Medicine. It validates the use of Mammaprint to guide early-stage breast cancer treatment decisions. The first two links summarize the results, and the last link is the actual study:

http://www.ascopost.com/issues/november-25-2016/an...

http://www.agendia.com/new-england-journal-of-medi...

http://www.nejm.org/doi/full/10.1056/NEJMoa1602253

My oncologist believes the Mammaprint is superior to the Oncotype DX, and it certainly tests many more biomarkers (70 as opposed to 16).

On a side note, your insurance is unlikely to pay for another genomic test, but the max that a patient will be billed is $500. Also, Agendia (the company that does Mammaprint) will waive fees in cases of financial hardship.

jenny153

Hi. I know how you feel. Between 10 and 25 is a grey area unfortunately. I scored 18 with the oncotype test and after looking at the facts and figures, I reckoned chemo would have given me an extra 2 per cent advantage. The only point I would mention is that there is only a small time frame to undergo chemo after breast cancer surgery so maybe get a second opinion if it will make you feel more at ease.

Anonymous

I was in a grey area too, score of 15. But I was told that up to 18 is low risk, and 18-30 is intermediate, and 31+ is high risk (for post menopause). And if you look at the RxPonder study, they grouped women with scores of 25 or lower to randomize chemo/no chemo. I missed the deadline of registering for RxPonder, so my oncologist and second opinion (UCSD) said that it would be up to me and the benefit of chemo is smaller than the benefit of hormonal therapy. My tumor was 30% DCIS, and I had a low mitotic index, which means the cells were dividing slowly. I had no LVI and the lymph node was contained. Everything put together made me lean towards no chemo. I am very happy with my decision and I believe that quality of life is more important than the percentages they give us. I've seen and read about women who do everything and still recur, and women who do nothing and live long healthy lives. I pray that you'll get all the information you need. Hugs!

maryny16

Thank you Meliee - -very helpful. Good luck with your treatment as well.

Dodgerick

I'm looking for another breast cancer survivor who has had ILC with lymph node involvement, has had the ONCOTYPE DX and scored low enough to skip chemotherapy. I REALLY need some reassurance, PLEASE! It's driving me crazy!!! After being diagnosed on November 29, 2017 with ILC and DCIS in my right breast, I had bilateral mastectomies on January 6, 2018. I decided that with a 40% chance of cancer also showing up in my left breast, my best bet would be to have them both removed...as a side note, the pathology reports shows they found LCIS in my left breast! Glad we opted for BMX! The 2cm tumor was ER+, PR+, and HER-2 negative. My surgeon hadn't anticipated lymph node involvement and so she just removed the sentinel lobe. On my followup appointment on February 7, 2018 my surgeon told me that the pathology report found the sentinel lymph node she had removed was involved by cancer with a 1.9cm extracapsular extension present. In spite of lymph node involvement, my oncologist suggested the ONCOTYPE DX to determine if I would benefit by chemotherapy. About a month later my ONCOTYPE DX came back with a score of 17, and my oncologist determined chemotherapy would not be necessary or add significant benefit in this situation. I was so excited that I wouldn't have chemo! On April 25, 2018 I started 5 weeks of radiation to my chest wall and regional lymph nodes, I completed radiation with minimal side effects on May 31, 2018. I'm looking for encouraging news from other breast cancer survivors of ILC and DCIS with lymph node involvement, that have also skipped chemotherapy....PLEASE?

edwards750

My sister and SIL both had ILC and DCIS respectively. Neither had chemo. Sister had oncotype test that resulted in intermediate score. SIL had lumpectomy and radiation. Sister just had hormone therapy. Both still here.

I had IDC and a micromet in my SN. My Oncotype score came back at 11. My BS was surprised by the Path report too. He didn’t expect lymph node involvement even a micromet. I had 33 radiation treatments. The Oncotype score allowed me to dodge chemo. I’ll be 7 years out in August God willing.

Lymph node involvement is a concern so be careful and take your doctors advice about not overdoing after surgery and treatment. Several ladies in my group at church didn’t heed that advice and ended up with lymphodema. Brutal.

Good luck. You’ll be okay.

Diane

Dodgerick

edwards750 - Diane,Thank you so VERY much for your encouraging words! This sure is a scary journey and i’m glad to be able to hear from someone who’s been there to assure me it’s gonna be okay. I know I’m second guessing myself, but I just get scared maybe I made the wrong choice! I just needed to hear from somebody that actually has been through this and is a survivor! Lymph node involvement (extracapsular extension) was a dealbreaker.