Oncotype DX testing

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  • besa
    besa Member Posts: 1,088
    edited January 2012

    bethoul- Good for you for advocating for yourself!  I am probably missing something but I don't understand why the  HMO would disapprove.    Looks like you will decide to omit chemo on the recommendation of a 2nd consult - this will cost the HMO less money.  Hormone therapy and radiation therapy are standard of care.  (If you still feel uncertain you can always get a 3rd opinion - but I would again go to a major cancer center - big research/teaching hospital.)  (My own story is that the first surgeon I saw did not order an MRI and scheduled me for a lumpectomy.  A 2nd opionion ordered the MRI and found that I had multifocal bc - surgery was changed from a lumpectomy to a mastectomy.) 

  • bethhoul
    bethhoul Member Posts: 18
    edited January 2012

    besa, and bevin, thank you for your responses.  Fear is such a big part of this process isn't it?  I'm still scared about my decision, but I am clear that I am making the right decision for me, at this time in my life.  I will do the radiation and 5 years of pill.  I will see what happens then.  Again thanks. 

  • bethhoul
    bethhoul Member Posts: 18
    edited January 2012

    LittleMelons, what was your Oncotype DX score?

  • LittleMelons
    LittleMelons Member Posts: 273
    edited January 2012

    bethhoul - I live in Toronto, Canada and it is not routine here to do the Oncotype test, although I beleive it is done if the Oncologist wants more information to determine appropriate treatment. My Oncologist was adamant that he wouldn't change the treatment, i.e. radiation plus Arimidex for 5 years, regardless of the Oncotype test results, so I didn't push to have it done.  At that time, early on, I just wanted to hit it with everything possible, so wondered if I should be doing chemo and was willing to do it. I did not understand the possible serious and long-term side effects of chemotherapy at that time.  Now after reading on these boards about women who have suffered debilitating, lasting side effects from chemo, I think a cautious approach to it is definitely advisable.  Given your diagnosis and age (I am 63 and identify with your thought processes) I admire your tenacity in seeking out a second opinion and think you are being very wise in your approach.

    I think having chemo makes more sense for younger women who have more years for the bc to recur and often don't have other health problems.

     Do you know your grade and ER+, PR+ percentages?  I am grade 2 and ER+ 100% and PR+ 50%.

  • bgirl
    bgirl Member Posts: 538
    edited January 2012

    Little Melons, I live in Ontario too. Government will pay for test for Node Negative Estrogen Poitive early stage cancer.  No proven studies for node positive early bc.  Adjuvant online - which our cancer centres all use had suggested that I had a 49% chance of recurrence based on my age at dx (46) tumour size, grade.  Tamox would take to 35%. +Chemo to 13%.  So it looked like chemo would be worth it because I was young.  My MO said would do test to be comfortable with decision and because I was eligible for OHIP to pay - had to fill out a request form ($4500 test in Canada as send tissue to California) plus authorization for test.  I think in the long run OHIP is hoping that they can weed out those that don't need to do chemo so they can save money!  Our tax dollars at work. We also spent a long time discussing data & studies this test is based on - so I was comfortable with that as well.

    Onco DX score came back 18 - CI of Recurrence in 10 years of 11% with 5 years of tamoxifen.  I was highly ER+ so tamox should be highly effective.  Only 2% benefit to doing chemo.  Not worth the risk of short and long term SE of chemo.

    So doing my rads (16+boosts instead of 25+boosts as indicated by McMaster study of same long term benefits)  same dose overall, just over a shorter time.  My RO was part of this study - must have gone to school there.  And working through my 5 years of Tamox as I must comply to get benefit of not doing chemo.

    From my personal experience it was worth having all the info I could to make the best decision for me.

    My understanding was that mets automatically make you stage IV, so no chemo not even a discussion (was checked-I was clean).  Also, as they are just doing study on validity of Onco DX results for node positive that it would not overrule adjuvant in deciding chemo.

    Only posting all this info so that people can see it is a very complicated process to make the right treatment decisions for you.  Keep asking until you get all the answers you need to make you comfortable.  Doctors should tell you about all tests, even if they know that they are not relavent based on you dx.  At least you will understand their decision making.

  • bethhoul
    bethhoul Member Posts: 18
    edited January 2012

    bgirl, Thanks for all the information. Now that I'm not doing anymore chemo, it's on to radiation. I'm so appreciative of all the comments.  I re-read them as need be.  They are all so helpful.

  • A_FIGHTER
    A_FIGHTER Member Posts: 109
    edited January 2012

    Hi Everyone,

    I received my Onco score today 14 - Happy, but concerned...

    I have two Oncologists still...Prior to knowing my score One Oncologist has said if low, no chemo - but Tamoxifen and Ovarian Suppression...Other Oncologist is recommending Chemo and Tamoxifen even if low (due to my age 39 and Lymphovascular invasion)...14 is close to 18 as I told my Cancer Surgeon who was clear on saying no Chemo...

    Another thing which concerns me is the wording on the Onco Results..."The findings summarized in the Clinical Experience sections of this report are applicable to the patient populations defined in each section. It is unknown whether the findings apply to patients outside these crtieria."

    Below the above statement I just typed it says..."This study included post-menopausal female patients with Node Positive, Hormone Receptor (HR)-Positive Breast Cancer."

    I am NOT Post-menupausal - So, I called Genomic Health and the response to my question of whehter this test is now Null & Void for me was -  no it's not null and void and the results do apply

    Then WHY is the wording on such on the results...

    I questioned this test at the beginning to as it was originally intended for node-negative...My Cancer surgeon assured me it is now done for both...

    My results have two parts, one result w/ node negative and the other showing node-positvie  

    What to do to have piece of mind???

    On the up side - I was cleared to go back to exercising. So, today, exactly one month after surgery I'm back running! Wahoo!!  Ran 2.05 miles today Laughing

  • bgirl
    bgirl Member Posts: 538
    edited January 2012

    Beth H - Just finished # 5 rads today.  Not so bad.  Good luck with your treatment.

    Bonnie, While I made the decision against chemo with score 18, I did not have lymph/vascular involvement or nodes that were positive.  As study still open on that I would probably have been more tempted to go with chemo because of age.  You have got a tough decision girl - I think you just have to keep asking and researching (proper medical studies - not by genomic) until you feel okay with your decision.  Then don't look back - even if new info comes out later.  Yes the exercise helps, especially with sleep and stress.  Do 30 min on treadmill most days, not running yet as doing rads and told not to push too hard.

  • momof3boys
    momof3boys Member Posts: 896
    edited January 2012

    Hi Bonnie- I hope this helps...my Oncotype score was 16. My MO was on the fence with recommending chemo for me because I didn't fit into any "box". My tumor was on on the larger side (typical for ILC, it forms more of a "line" than a "lump), but I had no nodal involvement and no vascular invasion. Healed from BMX very well and quickly. We decided to go ahead with 4 tx of TC, because of my "young age" (43) and because my MO said the Oncotype score is just one of the tools that should be considered. It was a tough decision, but I'm glad I made it. It definitely helped that my MO is female, young (about 37-38 ish) and is considered brilliant. She went into BC oncology because her Mom had breast cancer 16 years ago.

    I also have 3 young children (7,9,16) and I'm determined to do everything aggressively to be here to see them grow up. If I was 65-75 with my "scorecard' I probably would not hesitate, and would turn down the chemo with an Oncotype score of 16 with no nodal involvement and no vascular invasion.

  • LittleMelons
    LittleMelons Member Posts: 273
    edited January 2012

    bgirl - I knew the Oncotype test was expensive, but didn't know it was $4500.  I was a bit suspicious that the Onc was trying to save the system money by not ordering the Oncotype test for me.  I wonder if the Oncs have a formula e.g. ER+, no nodes, over 60 = no oncotype test.  If I were younger I would definitely have wanted it even if I had to pay for it myself.

     I had 16 whole breast radiation treatments as well, plus 8 boosts. (My tumour was very close to the chest wall.)  I was a bit surprised that there were only 16 after reading here that so many people have over 30, but that seems to be becoming the standard in Ontario now.  I had a pretty easy time with rads, no major skin problems, mainly itchiness.  Hope yours goes smoothly, too, beth and bgirl.  One thing, when I went for the rads treatments, it was the first time I had been in a cancer centre and couldn't believe how busy it was.  We are certainly not alone!

  • bgirl
    bgirl Member Posts: 538
    edited January 2012

    little melons- yeah I was glad OHIP has paid since late 2010, although had to fill out requisition to get them to authorize.  Glad to have as much info as possible.  I think some people in the states get the 16 vs 25 (call it the canadian protocol) but more common in Canada as the study was done at McMaster in Hamilton.  There is a reference to it on this site.  I am at RS Mclaughlin Cancer Centre in Oshawa.  Very busy - hard to believe all the people there (some from 2-3 hours away) all used to go the the centres in TO.  Thank God I don't have to battle that traffic every day.  As fatigue setting in I probably would have stayed with my sister there, instead of the drive.

  • A_FIGHTER
    A_FIGHTER Member Posts: 109
    edited January 2012

    Happy Friday!

    bgirl - Thank you! I am going to keep on reading! I've been reading about Zometa (Zoledronic Acid) - I did see it works for women well into menopause though. It also mentions putting premenopausal women into treatment-induced menopause. It appears with this I would need Tamoxifen, ovarian suppressionn plus the Zometa...Anyone using Zometa?  

    One thing I've noticed, and I guess understandably so, is some friends/family are so ECSTATIC with my news! I say some because I stopped telling my score as to me it's NOT settled and I'm getting tired of explaining why I'm NOT as happy as them. I'm stuck between a rock and a hard place! It's totally bitter-sweet!

    momof3boys -  Thank you for sharing! The one Oncologist who has recommended Chemo with the low score is young too (35) - Brillant as well...The other Oncologist (in her 60's) is the FIRST go to Oncologist around here...Even more Brilliant! From the first one, she does want to go more aggressively - her words - "You don't want to possibly be in your 50's and then wish you would have done the Chemo" But again no guarantees either - I could also do Chemo and still perhaps end up with probelm in my 50's...

    Tomorrow is the BIG Day - Race for the Cure - We have raised $4,128 and we have 49 friends on our Team...Love it!!!  It's going to make for a very diffrent day as this year I'm on the other side as a Survivor!!!

    Enjoy the Weekend Everyone

    Hugs,

    Bonnie 

  • smva
    smva Member Posts: 36
    edited January 2012

    doxie:  Saw MO again and discussed Oncotype DX report.  Oncotype score 27 (high intermediate); estrogen positive, progesterone negative (original pathology was positive) and HER2 neg.  Surgeon agreed with MO and will be starting CMF chemo (hopefully milder) on Tuesday.  Thank you again for your response. 

  • doxie
    doxie Member Posts: 1,455
    edited February 2012

    smva- I'm glad you've settled on what you feel comfortable doing and that I could help a little.  A friend of my sister's had the same oncotype score as you did, and had 4 rounds of TC.  She is 65.  She handled it better than I did.  Good luck with CMF.  I hope all goes well.  

  • Druanne
    Druanne Member Posts: 295
    edited January 2012

    My Oncotype score is 3!!! For some reason I am thinking they somehow made a mistake and that it can't possibly be that low!!!!!!

  • bgirl
    bgirl Member Posts: 538
    edited January 2012

    Druanne - maybe you are highly ER+ as well as being grade 1  couple of things that help predict score.  I was 18 even though they expected higher, but I was grade 2/3.  It was my MO thought it was probably high ER+ score that kept it lower.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited January 2012

    Druanne-Mine was 4. I just wanted it to come back either high or low. I told myself that if it was intermediate I would have done chemo. Grade 1 tumors tend to have lower scores, but there is always a chance that it wouldn't.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited January 2012

    A fighter-The Zometa protocol is having very good results with pre menopausal early stage bc.  My MO stays up on research and put me on a oral biophosonate about six months ago.  Now that the study was presented at the San Antonio Breast Symposium he is putting me on Zometa starting this month.  My onco score was 23 and I did not do chemo.  I am pre menopausal.  I am ER positive but very low positive so I am sure that is why my score was as high as it was.  I was excited at first to not do chemo but I have to admit that I have waivered back and forth on it.  But I made my decision so I can't look back now.  But I know that is why my MO is doing everything he can for me like the Zometa because I choose not to do chemo and he wants to give me as much protection as possible.

  • Druanne
    Druanne Member Posts: 295
    edited January 2012

    bgirl that is quite possible! I will hear the entire results during the next appt with my onc :) Will ask about the ER+ levels having anything to do with it :)

    coraleliz I was thinking the same thing.......high or low.......however.....my onc said she wouldn't recommend chemo for me even with an intermediate score......it is so interesting how everyone's treatment recommendations are so different.......and every doctor has different opinons.......

  • bethhoul
    bethhoul Member Posts: 18
    edited January 2012

    A_FIGHTER, your diagnosis, time of diagnosis and Oncotype DX test result are similar to mine.  The issue is I'm 65.  I would investigate and ask all the questions you need to.  It's extremely frustrating to me that the experts give opposite opinions.  Understand and be kind to yourself.  We all rely on the experts.  I've decided no chemo and am starting radiation.  I will be investigating the 5 year pill as I move on.  Hope this helps. 

  • bgirl
    bgirl Member Posts: 538
    edited January 2012

    Druanne, hope you get enough info to make you comfortable with you decision.

    There are a lot of factors, I think.  My MO said if i was 22 he would still have tried to talk me out of chemo.  At 25-26 he would have gone ahead even if cutoff 31.  Mostly because of my age  If I was in my 60s or 70s he wouldn`t.  Also the big trial on this test comes out in a couple of years, in it they used the cut off of 26 (lower threshold to make sure trial participants were not at undue risk).

  • MimiNC
    MimiNC Member Posts: 5
    edited May 2012

    Surprised by my Oncatype score of 27 after getting good news for everything else--- DX 4/2/12, lumpectomy 4/12/12-- 1.1cm IDC, grade 1, 0/2 nodes, highly ER+, PR-, HER2 neg, clear margins, no mutations BRCA1 & 2, age 61. MO said she'd support either way, but I'm doing 4 rounds of TC (I think it is). I don't want to second guess if it ever does return. What do others think?

  • JustBeatIt_DahDumDum
    JustBeatIt_DahDumDum Member Posts: 60
    edited May 2012

    Just got my oncotype score today of 34 and will have to have 4 rounds of chemo.  I had an LX on 4/25 with clear margins, no complications, no nodal involvement, and was feeling sure that I wasn't going to need chemo.  I am having to digest all of this, and my family members are bummed. 

    My prev DX from my initial biopsy said my PR+, but now the oncotype score says it is PR-.  My Dr. said that we give more weight to the oncotype test, and I'm wondering what, if any effect the PR- plays in all of this.  She said that the main thing is the ER+ (High) in that it will respond to the tamoxofin.  Anyone know about this? 

  • MimiNC
    MimiNC Member Posts: 5
    edited May 2012

    The PR- must be the factor, although I'd been led to believe a high ER+ offset the PR-.  I too was surprised with my onca score of 27--IDC, 1.1cm, Grade 1, ER+ (90%) 10.9 on onca report, PR- (4.4), 0/2 nodes, wide margins. BRCA 1 & 2 no mutations--- MO said she'd support either decision as to chemo or not. With the opportunity for ~5% reduction in odds for reoccurance, Chemo is the choice for me.

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