Oncotype DX score of 20 received today

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Cheryl10
Cheryl10 Member Posts: 2

Hi All, I am 43 and was just dx in June.  In July, I had a bilateral masectomy with expanders.  I had one of two sentinel nodes that was microscopically positive, therefore, they took 10 more nodes in a second surgery and they were negative.  My cancer was tubular type which is suppose to be slow growing.  I have an appointment with my oncologist tomorrow and just wanted to see if there was any advice from anyone.

I know that I will be on Tamoxifen for 5 years as I was estrogen positive (per pathology report 88%ER+ / 77% PR+).  My Oncotype DX score of 20 gives me a 13% distant recurrance rate - it is at the low end of the intermediate range.  Thank you and take care.

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Comments

  • simmonba
    simmonba Member Posts: 41
    edited August 2009

    Hi there - you are in the grey zone in terms of treatment and recurrance stats.   Your cancer is highly ER and PR positive, so tamox is a good thing and should be effective.  Ask your onc about the CYP26 test to assess if you are a goo metabolizer of tamox - some doctors support this test, some don't, but most will use it as one of the factors in the development of a treatment plan.

    "the low end of intermediate" is not a compfy place to be - some people would say, jump on all the treaments you can!  and some would say, you already have a recurrance rate similar to the occurance rate for all women.....this is a hard place to be. There are many good threads in this site on making decisons, and a ton of information. If you are like me, statistics mean a lot - but you may be someone who operates on a gut instinct level.  Hang in there, read, research, talk, ask, and don't let your doctors NOT talk to you!    Hugs hugs hugs

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    When your oncologist tells you the percentage of risk reduction that you might get from adding chemo, know that if the number is double digit, it is a relative percentage, not an absolute one.  50% of 13 is 6.5 so if your risk starts out at 13%, a 50% reduction would bring it to an absolute risk of 6.5%.  A 50% risk reduction sounds a whole lot more impressive than a 6.5% risk reduction, but they can just be different ways of expressing the same thing.

    Your tumor is highly ER+ meaning that Tamoxifen should be very effective for you, and low grade which means less likely to be affected by chemo.

    Is this onc someone that you trust with your life?  That is the really important question for you to get answered tomorrow.  Any oncologist can prescribe your treatment for you, but this is someone who will be a major part of your life for years to come, so they need to be someone you trust and have confidence in, and who has a general attitude toward treatment that is similar to yours (do you lean toward natural remedies, or are you a person who wants to throw everything possible at it).  Trust your gut instict, and get a second opinion if you are not 100% confident in the doctor and the treatment plan that you are presented with.

  • Cheryl10
    Cheryl10 Member Posts: 2
    edited August 2009

    Thank you both very, very much for this information!  I know that it will be a lot of information tomorrow....I am so glad that I found this.

  • MAGOB
    MAGOB Member Posts: 299
    edited August 2009

    Cheryl - My oncotype score is 20, too.  Know that your decision is a toughie - there is no right and no wrong.  For me, it took forEVER to find peace with my decision.  My advice to you is to soak up all of the information, then let it percolate for a while.  You WILL find the answer.  And don't let others tell you what you should be doing.  There will be people in your life who will be upset with either decision you make.  This is your life, your fight.  Tell them to respect your decision. 

    I chose to do chemo.  This is not to say it is the right thing for you to do.  My thinking is that I want to fight this disease with all I've got.  Treatment 1 was last Tuesday.  Its crummy, but it is do-able.  Also - there was a lot of news last week about node positive women and recurrence - did you happen to see it?  If not, just holler.  I'll get it to you.

    One more thing - you will feel better once you have made a choice.  Peace is in your future - have faith.  XO, Mary

  • Takaragirl
    Takaragirl Member Posts: 1
    edited August 2009

    Hi All - sorry I am posting a reply when I really have a question as well. But I thought this was relevant since it is under the same topic. I just got my Oncotype Dx score of 29 with a 19% chance recurrance. I'm 35 and have two little kids and really don't want to do the chemo. I had a mastectomy and reconstructive surgery on Aug. 7th with a silicone implant. I feel great and I'm doing everything I was prior to being diagnosed.

    My cancer is Estrogen positive so I know I will be on Tamox for 5 years which I am fine with but I really don't want to do the chemo. I meet with my oncologist on Monday and he will give me all the numbers. If it reduces my chances by a ton I will do the chemo.
    Thanks for all your posts, it was great to read them.
    If you have any advice or insight please reply.

    Thanks,

    Peggy

  • mtnuts
    mtnuts Member Posts: 7
    edited August 2009

    Cheryl,

    I was dx in April, RM with no nodes.   I am a numbers person and wanted to see the benefits of chemo.   I read a lot of research studies and tried to decipher the statistics.   I also consulted three oncologists.    My onco score was 18.  I am 50 and strongly ER and PR +, Her2 -.    I too had the CYP26 test and found that I was a good metabolizer of Tamoxifen.

    All that being said, I agonized over making a decision for almost two months - still w/in the recommended 12 week window.   I finally decided to do the Tamoxifen and have been at peace with my decision.   Some people will offer you their opinion, but it isn't their body.   If you can sleep at night once you make your decision, then it is right for you.   Best wishes.

  • MAGOB
    MAGOB Member Posts: 299
    edited August 2009

    Good advice, Jocelyn.  I'd add that each one of us has other health issues and history that will impact our choices.  Your onc will be able to work through all of this.  Take good notes - it will help.  Also, if you are uncertain, by all means get another opinion. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2009

    Hi Peggy,  I sent you a private message.  You can access it by clicking on the private messages box on the top righthand side of the page.  You can tell you have an unread one if there is pink writing in that box.

  • pabbie
    pabbie Member Posts: 370
    edited August 2009

    Hi-I also had an onco-type score of 20. This led my onc to be supportive with me not doing chemo because I really didn't want to do it. I had chemotherapy in 1999 for colo-rectal cancer. (5 FU + leukovoran) in which it was iv-pushed in my arm. I was 41 at the time so the onc thought I could handle the chemo this way. I had so much long-term fatigue after the chemo & my white blood count never was the same. I was and still am more suseptible to colds.

    But I'm still alive after 10 years. This is the cancer that took Farrah's life. So it was a good decision for me personally to be aggressive in 1999. But if I could be OK w/o chemo this time, I was satisfied with my decision.

    Please do what's good for you. Fortuneatly this story worked out well for me.

  • fluteplayerrox
    fluteplayerrox Member Posts: 19
    edited September 2009

    This is, indeed, very frustrating...yesterday I met with my onc for the first time. I have a oncotype score of 23. He informed my husband and I that I was in the "gray zone", but given my age (43) and multi-focal tumor (2 tumors 1: 1.9 cm/2: 1 cm/same quadrant), he thought I should go ahead with chemo. I am stage I, ER+PR+ HER2-, grade 2. I have lost a night of sleep over this, so I called my surgical onc to get his view. He said the benefits of chemo are marginal in my scenario and thought a 15 percent reoccurrence rate is small - I told him it's only small if you're not in the 15 percent that reoccurrs!  Much to think about... I wish you all the best in coming to the ansewr that is right for you!    

  • Torona
    Torona Member Posts: 52
    edited September 2009

    I just got my Oncotype Dx score today and it's 21.  I know it' s in the gray zone and I meet with my Oncologist tomorrow so I have a lot of decisions to make.  I can see from the previous posts that everyone has made a decision that is very personal and for different reasons.  I'm so confused.  Looking for help in making mine.

  • mawhinney
    mawhinney Member Posts: 1,377
    edited September 2009

    I had an Onco Dx score of 30, which put me in the high group.  The score of 30 was a real surprise as my tumor was 8mm and the docs said my risk was very, very low. My gut reaction was to go for chemo but after charting out my scenerio, it appears that chemo would only reduce my odds by 3 %.  Plus I was taking Arimidex which gave me slightly better results than Tamoxifen. Decided in my case the risks outweighed the benefits.  Onco said he was comfortable with my decision and pointed out that I was Stage 1 and the OncoDx lumps together both stage I & stage II patients when creating their charts.  I still having lingering doubts but hopefully, I made the right decision for me.

  • lemonjello
    lemonjello Member Posts: 75
    edited September 2009

    My onco score was 22.  I know the decision is difficult.  So i made the decision not to do the chemo.  Then i couldn't sleep for 4 nights and reversed the decision.  It wasn't fun, but it was not a nightmare.  Actually i hate rads more.  Trust your gut.  Good luck.

  • Torona
    Torona Member Posts: 52
    edited September 2009

    Funny about your decision because the same thing happend to me.  My Onc score was 21, tumor size 1.5 cm, no nodes but the surgeon said just the size alone would make him recommend chemo, then Onc said this was in the mid range and left the decision to me but his recommendation was also IV chemo. This would reduce my recurrence score from 14% to 9%.  I said I was not going to do chemo but couldn't be comfortable with my decision - having trouble resting/sleeping, so I made up my mind to everything I could to reduce my recurrence, even it was 1%.  I had my 1st T/C today and I did okay.  Just waiting a couple of days for the se's to kick in and then I'll know.  I am very satisfied with my decision and will go for the rads and AI's afterwards,  It was a very tough decision and no one can make it for you.  Once I knew what I wanted to do, the rest fell into place. Good luck- with time and listening to your "gut" you'll know!

  • rosered
    rosered Member Posts: 23
    edited September 2009

    This is my first post on this site - and its more of a question too than an answer.  My Onc score came back low at 9, however I had micromet to one sentinel lymph node so a total of 16 nodes were removed (all clear).  I had a masc., and recommendations are no radiation or chemo, but straight to hormonal therapy (Tamox or I can take part in a clinical trial w/ ovarian suppresion and AI treatment).

    That said, I'm still not entirely comfortable about no chemo.  I don't want it but I'm concerned that I'm not doing everything to prevent recur. even though I'm told my cancer is hormone sens. and chemo would be more harmful than helpful (I have a fam history of leukemia).  

    I'm considering a 2nd opinion for peace of mind.  Just wondeirng if anyone is in the same boat as me? 

     Thanks!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    Hi, I'll chime in here.  My onco score was 28, and I was in the gray zone as well.  With stage 2 IDC, grade 2, no nodes and very clean margins on my lumpectomy, I wasn't sure about doing chemo.  My former onc just about insisted on it, and he combined with my rad onc, sort of pushed me into it, saying it would ease my mind.  I ended up being allergic to the taxotere and had all kinds of severe se's that caused me to quit after two rounds.  My current med onc said the two treatments I received were enough, but she would have gone a different route.  I am now confidently on tamox, as I am highly er/pr as well, and that, with all of the clean tests and scans I had prior to surgery make me feel we did the best protocols and treatments and I probably could have skipped the chemo.  What I know now!!  Or rather, if I'd had this med onc at the start, who knows? 

    Meg is right - everyone needs to approach this decision on their own, and weigh the pros and cons and go with what you feel is right for you.  I wish you the best.

  • rosered
    rosered Member Posts: 23
    edited September 2009

    Iovrymom and chelev, thanks so much for replying.  I can see why these boards are so helpful!  In my heart of hearts, I think that the no chemo option is right for me and I should just go with it. Its hard, but I'm getting there, to make a decision and move on.  Its good to hear from women in similar situations.  Thanks again!

  • thegoodfight
    thegoodfight Member Posts: 560
    edited September 2009

    My oncotype score was 17 and at first the decision was no chemo.  I had a lumpectomy with clear margins and a neg. SNB so things were looking good.  Since my mammos were ALWAYS clear, even when we knew there was  3.5cm tumor there, we decided to do a breast MRI which detected another primary in the same breast, different quandrant.  I then decided to go forward with chemo as an insurance policy.  I did very well for the most part, with minimal side effects.  We did have to switch from taxotere to taxol because of a side effect, but really pretty smooth for the most part.  In retrospect I am still glad I had the chemo, since it helps me cope with the risk of recurrance, knowing I did throw the book at the beast.  That being said, I do worry about possible long term effects and wonder when I will know if I have made it safely through chemo.  The point is, you have to  make your decision for you, but it is never without question.  You just have to make a decision and go forward.....................and keep living life.  Unfortunately, life is just never the same again once you have been diagnosed.

    Caren

  • BoyMom_2009
    BoyMom_2009 Member Posts: 47
    edited September 2009

    Hi Ladies,

    I just found out that my Oncotype is 16.  My Oncologist previously told me that due to my age (40) and tumor size that I should have chemo regardless of my score.  He did agree, however, to order the Oncotype to see what my score would be.  He said that if it was in the low range that he might agree that chemo wasn't necessary.  I really think that he believed that my score would be higher than it turned out to be.  However, it is on the high end of the low range.  I meet with him on Wednesday to go over the results in detail and discuss treatment options.  I think that he's going to push chemo.  It's interesting to read these posts and see the various opinions that are being given. I am getting treatment from a highly reputable teaching hospital.  It appears that they take a conservative approach and tend to overtreat breast cancer.  However, they do tout a higher than average success rate.   I agree that it's hard to make a decision when medical professionals can't even agree.

    Lisa

  • mehunt
    mehunt Member Posts: 7
    edited September 2009

    My oncotypedx came back 19 and my oncologist said no need for chemo. just radiation and tamox. i'm going tomorrow for a 2nd opinion. IDC 1b, grade 3. I'm estro and proestro+ and her2-. Clear nodes. just want validation that i'm on the right track. I do not want to add chemo for no reason. definitedly need strong statistics to support it, it takes alot out of you. You will never regret a 2nd opinion.

  • MBCR
    MBCR Member Posts: 161
    edited September 2009

    my oncotype was 14 & I am 49. When I got my results back my onc said that i did not need chemo.

  • enollen
    enollen Member Posts: 6
    edited September 2009

    Hi! My Oncotype was a 20. My surgeon and onc told me that I might get 1 or 2% benefit in recurrence rate with chemo. My rad. onc said he didn't think my onc would recommend chemo before I saw him. I'm 56 with a tumor of less than a cm and am est and prog + and node negative and Stage 1. I decided to go with the doctors' advice of no chemo and am happy with my decision. Am doing 7 wks of radiation and Arimidex after a breast infection that developed 5 wks after lumpectomy occurred.  Anybody have experience with infections so long after surgery? If it doesn't clear by Tuesday (5 days), I'm to go on IV antibiotics.

    Good luck with your decision!

  • Torona
    Torona Member Posts: 52
    edited September 2009

    Enollen, we have almost identical diagnosis but my Onc and BS recommended chemo because of the size 1.5 cm (invasive) and score of 21 so I had my 1st chemo of Taxotere/Cytoxan on 9/17.  I had a large lumpectomy on 7/21 with a huge postop hematoma that took 3 weeks to go down. Yesterday, I had a very sore, tender breast with a large red, angry area around my nipple and below. I went into the BS office and after the nurse looked at it and discussed with the BS, they decided that I had an infection from the residual hematoma.  (I didn't know there was any still left.) I am on Clindamycin 300 mg 4 times day for 20 days.  Haven't talked to the Onc yet but I need to know how this may affect my next chemo.  What were your symptoms?  How did they diagnose the infection?

  • samiam40
    samiam40 Member Posts: 416
    edited September 2009

    BoyMom, I was wondering how your onco visit went on Wednesday and whether you have decided anything.  We have similar stats:   I was 40 at the time of diagnosis and had a 2.6 cm IDC, grade 1, no node involvement and oncotype of 14.  I was given the choice or chemo or not, and I chose CMF chemo, so I could have the peace of mind I needed to sleep at night.  This choice is not right for everyone, but it worked for me.  I went into it feeling pro-chemo.  Obviously, some people don't, and that's great too.  You have to do what works for you.

  • enollen
    enollen Member Posts: 6
    edited September 2009
    Hi, Torona. You're my first person to correspond with. How excitingSmile!  Anyway, I've got to run to work so I'll write more later. I woke up on a Sat. a.m. with a red, hard, swollen, and very painful breast about 5 wks. after surgery, from which I'd been told "You've healed perfectly."  Everybody says its a staph infection, but nobody has actually cultured it, which concerns me. The area felt hot and very hard at the lumpectomy site, which was above the nipple, around the side and underneath.  Now it's more pink, but I can still feel the hard areas.  And when they examine me, the nipple and aureola turn  white. My surgeon had told me to go to an infectious disease doc this week if the infection hadn't gotten better, but my onc said to give the Cleomycin time to work since I still have my axillary lymph nodes. Hope this helps.
  • enollen
    enollen Member Posts: 6
    edited September 2009

    Hi! just wondered why you hate the rads more?  I've got to start a 7-wk. course very soon. Am not looking forward to it, but I don't need to do chemo so am thankful for that!

  • pj12
    pj12 Member Posts: 25,402
    edited September 2009

    Hi Enollen,

    I, too, developed a post lumpectomy infection about 4 weeks post op.  My surgeon had "released" me and I was in the process of doing my radiation simulation.  I had been telling different medical people that my breast was hot and oddly firm.  No one thought anything was wrong.  Finally the breast skin broke out splotchy red all over.  I happened to be seeing my GP and showed him, he got on the phone to my surgeon and it all got quite serious suddenly. They ran a CBC right way which was normal.  I was on levaquin for a month and could not start radiation til the infection cleared.  It took the entire month to clear up, surprised me how long and slow the recovery was.  But all turned out okay and I was able to start radiation within the 8 week window.   BTW, Levaquin is that drug attorneys advertise about... looking for clients who have had adverse reactions to the medication.  It worked for me happily.

    I did not have a hematoma or anything.  My infection appeared, to me, to originate deep, even close to the chest wall where my tumor was.  My incision was never compromised and my nipple was only involved in that it seemed drawn in, kind of an inny rather than an outy.  As the infection cleared the nipple turned out again, normally.   

    I wish you the best in getting over this soon.

    Pam 

  • Torona
    Torona Member Posts: 52
    edited September 2009

    Thanks for the reassurance that this is what I am dealing with and not another type of breast cancer that popped up.  I am actually better today after 4 doses of antibiotics so that is a relief.  Talked to the nurse at my Onc's office today and there won't be a problem with me continuing my chemo.  I will need to continue the antiobiotics but they don't seem to be causing me too much problem with nausea. Good luck, Enollen, with your journey!  

  • enollen
    enollen Member Posts: 6
    edited September 2009

    Thanks! Today is the first day I think the infection is clearing. Mine too seems to be deep in my breast. I also had flu-like symptoms--fever, aches, but those are pretty much gone. The window you speak of--Is that from the date of surgery?

  • pj12
    pj12 Member Posts: 25,402
    edited September 2009

    My surgeon told me that IF you were not doing chemo it was desirable to start radiation within 6-8 weeks of your surgery... something about rogue cancer cells reuniting.  I may not be saying it right.  But I have seen others say their DR said a longer interval was ok.  And then there are always delays like infections, re-excisions, etc.  Who knows?  I was just anxious to get the process going and he may have been indulging me.  

    Pam 

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