Curious, if your Oncotype was intermediate..

Options
BioAdoptMom3
BioAdoptMom3 Member Posts: 198
edited June 2014 in Stage I Breast Cancer

If your oncotype came back in the intermediate range did your MO recommend chemo, not recommend chemo or expect you to make the decision?  I have heard from so many on this board, and a few survivors I know personally, that when they had intermediate range scores they were told to decide what they wanted to do.  My MO automatically recommends chemo for an intermediate score from what I understand.  I am just curious if that is common, or is my MO unusual?

Nancy

Comments

  • Rachel1966
    Rachel1966 Member Posts: 100
    edited April 2011

    I had an oncotype of 26 which is right smack in the middle. I was basically told it was my decision to go ahead with chemo or not.  Although my oncologist did say that because I am 44 and have a 2 year old at home, she said if it were her she would do the chemo so that I would never have a regret and be able to say that I did everything I possibly could to survive.  So in the end I went ahead and did chemo. I had 4 TC treatment which ended in December. Even though it was brutal and I'm still going through some effects - for me it was the best decision.  At 26, that left me with 17% of reoccurence.. With chemo it went down to 5% and now with the Tamoxifen, it's down to 2 or 3%. I like those numbers better.

    Good luck in your decision. 

  • Pessa
    Pessa Member Posts: 519
    edited April 2011

    I had an Oncotype score of 24.  My MO gave me the choice of chemo or not, but seemed to be pushing for chemo.  In any case, I did AC x 4.  Not bad.  No ill-effects long-term.  The chemo was to give me a 3% improvement in survival.  (I'm now at 9%).  I also had a bilat mastectomy and am on Arimidex (generic).  I wanted to be as aggressive as possible.  Nothing is worse (in my opinion, for me) than a recurrance and chance of mets.

  • peggy_j
    peggy_j Member Posts: 1,700
    edited May 2011

    My surgeon told me that the Oncotype is most helpful if your score is either really high or low. My MO clarified that the middle scores mean that they don't know how much you'll benefit (they are currently conducting trials to get more data).  She also said that grade 1 patients benefit less from chemo; grade 3 benefit more. i.e. cancer cells that grow quickly (grade 3) will be more likely to be wiped out.

  • acnAK
    acnAK Member Posts: 3
    edited May 2011

    My test score came back in the middle and my onocolgist would not recommend one way or the other whether to have chemo or not.  I have to meet with my doctor tomorrow to give her my decision. I am struggling with this. If the doctors and the study cannot show if there is a benefit to do the chemo then it is very hard to say just go ahead and do it with all of the side effects that it has.  The short term ones like hair loss and fatigue are not the big concerns but what it could do to my heart, kidneys and lungs if the chemo is not necessary.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    My score was a 23 and I am grade 1.  My first MO said no to chemo but no explanation.  I changed MO's and my new one which I love also said no chemo but did explain it very well and said that if my KI67 had been over 10% he would have recommended it.  Mine was under 10%.  But in the end he did say that if I wanted it he would give it to me but really was not recommending it. I was only to get a 2%-3% reduction in recurrance rate and he did not feel that that was worth the SE's I would have had from it.

  • NewatThis
    NewatThis Member Posts: 41
    edited May 2011

    I'm just getting home from the oncologist. My oncotype came back as a 19, the lowest range of intermediate.  He said it would lower my risk by 3-4 percent if I were to have chemo.  I really don't want it. As far as recommendation, he said he could understand and live with my choice; he'd put his recommendation as 60-40...60% in favor of chemo, 40 percent not.  Big factors for him were the size of the mass, and the clean nodes.  So, am I doing the right thing by deciding against chemo? Who knows?

  • acnAK
    acnAK Member Posts: 3
    edited May 2011

    It is good to see others in the intermediate group chosing NOT to do chemo.  I've read so many that do chose chemo that I was beginning to think that I should do the same even though I don't think that it would be the best thing for me. 

    Sherryc: What is K167?

  • raincitygirl
    raincitygirl Member Posts: 3,143
    edited May 2011

    I was intermediate as well with a 14% chance of recurrence.  I initially decided to do chemo and began CMF which wasn't so bad.  I had seen four oncs and got:  do it, absolutely don't do it, 50/50 and 60/40.  I kept reading as I went through CMF and came across the NCCN guidelines which were consistent with what Peggy said above.  Check them out to see what they are saying for you and be sure to check the footnotes carefully.  Mine were on page 16 and stated that I was unlikely to get benefit from chemo and both my med onc and rad onc agreed. I completed five of twelve infusions before stopping without regret.

    The Ki-67 is another measurement, sometimes referred to as the poor man's oncotype.  However, my docs have some faith in it - it refers to mitotic growth rate.  Like Sherry, mine was less than 10% and I made my decision to stop the chemo.

    I still can't believe we are supposed to make these decisons :)  It's not like we went to med school.  Best Wishes! 

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    acnAk-KI67 has to do with cell proliferation.  Don't know that I can really explain it to you but just google it and read on it. But over and under 10% seems to be what the docs look for.

  • acnAK
    acnAK Member Posts: 3
    edited May 2011

    Thanks Sherry I'll do that. I've decided not to do chemo and will start on radiation soon. 

  • NewatThis
    NewatThis Member Posts: 41
    edited May 2011

    just curous....what was your onco score? still deliberating here....

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    NewatThis-mine was 23,stage 1, grade 1

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    This is the Clinical Trial Study NIH is doing:

    http://www.cancer.gov/clinicaltrials/noteworthy-trials/tailorx

     Emphasizing what Peggy posted - Chemotherapy seems to be ost effective for those with a fast growing, Grade 3, bc.  

    So many factors to consider in decision, mine was basic, I wanted to do everything I could do initially to try to prevent a reoccurence, no regrets.

  • Sagita
    Sagita Member Posts: 30
    edited May 2011

    Hello everyone.

    Had lumpectomy surgery with my right breast last May 3. Today is my firts visit with my doctor... the stage of my cancer went up to stage II after  finding out that my tumor size was bigger to what they have seen in my ultrasound & mammogram. My doctor discussed to me that they needed to put me again to do another surgery because there are cancer cells left in my surgical margins. My lymph nodes test is negative. ( the good news i have ) After knowing i will do another surgery & waiting my oncotype result i have decided to make a step to make an aggresive decision. I decided to do the masectomy this time with reconstruction and hoprfully this will be the last surgery for my BC. I never thought how could this affect me emotionally, i have try my best to save my right breast. But if it will give more problem & worry in the future, i have to let it go. The oncologist mentioned to me if my oncotype score fall to intermediate or high, she'll recommend the chemo for me. I'm crossing my fingers!

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    Sagati good luck with your onco score MX.  Hope your recovering will be smooth sailing.

  • ncisabbyrocks
    ncisabbyrocks Member Posts: 2
    edited May 2011

    Intermediate Oncotype still uncertian about chemo treatments- This is going to be a bit lengthy but I feel the need to give as much background as I can. I found a lump in my right breast about a year ago, I didn't think much of it because I have fibroids. I had my yearly mammo scheduled for October so I thought I would wait. In September my husband was diagnosed with Prostrate cancer (also diagnosed with MS) so I put my mammo off so we could work thru his diagnosis. Funny thing, he asked me what I thought and I said "if it were me I would have it removed, if I ever found out the I had BC I would have my boobs removed" well 6 mo. later I would have to make that decision. I went in on 4/1 had the mammo, US and biopsy all within 2 hours. The results came back that I have BC...my FP set me up with BS before I knew the results so after I got the news from her it was off to the BS. The BS did an exam and went over the report with my options. The comment that stuck out the most for me was "looking at ur mammo I would have said see you next yr..but looking at the US tells a different story" ...hhhmmmm? I was set on a double mast (not a fan of my large breasts) but BS, PS and DH all thought that a lumpectomy would do just fine, and if I wanted to I could go in at a later date and have reconstruction. Had MRI - negative for any other areas of concern. So on 4/25 I had a lumpectomy. Final path report IDC and DCIS 1.8cm Stage 1 Grade 2 0/4 nodes ER+/PR+ HER2-

    I met last week with the RADOC and on Tuesday of this week with the MO. My Oncotype is 16 and he left the decision of chemo up to me. I have kept a very positive attitude just as we did with DH and his cancer until now. This has been the hardest and most agonizing decision I have had to make. I do not like being in the intermediate range. Sometimes I think it is a no-brainer why would I want to go thru chemo and side effects for that 2% difference? but then the what if's take over..(I know there is always what ifs? but this one is in my control). I also want to add that I am 48 and my DH is 46 and we have 3 children - 21, 16 and 13. I know it is a personal decision and we are all different but it is still very hard. 

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    Paula I know that it is agonizing.  My onco score was 23 and I did not do chemo and feel OK about it.  Have you gotten a second opion.  My first MO I had told me no chemo but did not explain anything to me.  After a couple of months I was very uncomfortable with him so I found another MO and like him right away.  He explalined everything to me, also told me he did not think that I needed to have it because the SE would be way worse than the little bit of benefit I would get out of it.  But he ended with if chemo is the only way you can sleep at night I will give it you.  I thought about it and decided not to.

  • BarbaraA
    BarbaraA Member Posts: 7,378
    edited May 2011

    Paula, our stats are almost the same with two exceptions: I had a micromet in one node and my Oncotype was 17. I was 58 and you are 10 years younger. I chose no chemo as the chemo had a benefit of maybe 2-3% for me whereas the possibility of permanent se's from chemo hovered at around 5%. It is a very difficult decision. I am happy with my decision now, one year later.

  • raincitygirl
    raincitygirl Member Posts: 3,143
    edited May 2011

    I strongly recommend going to NCCN and read the guidelines for various types of BC - mine was on page 16 and had footnotes.  When I read the footnotes, it said that I was unlikely to get benefit from chemo, or whatever benefit I would get was 2-3%, with a 5% risk of long term damage.

    I didn't find that news until after I started CMF, which wasn't bad.  About halfway through CMF, I found the NCCN guidelines and had a meeting with my rad onc the same day.  He expressed surprise that I was doing chemo.  I then mentioned what  I had found and he looked through my records and said that not only were the NCCN guidelines really not in support of me doing chemo, neither did my Ki-67 score support it.  So I quit chemo.  I have no regrets at all.

    If I could attache the link for you I would, but it won't allow it.  I just registered so I could read it.

  • NewatThis
    NewatThis Member Posts: 41
    edited May 2011

    Paula,

    Every situation is different, I know.  First mammogram said my lump was .7 cm, followup mri said 1.2cm, and the lumpectomy said 2.5 . My oncotype came back at 19.  I am strongly hormone positive, per my oncologist. Anyways, I met with a second oncologist for a second opinion, each of whom spent nearly 2 hours with me. The first onco presented my case to his practice. Their opinion, which I learned yesterday morning: the chemo benefit to be gained would be modest (you've probably seen the numbers). The most benefit is the 5 years of hormone therapy.  The risk I would be taking by skipping chemo and going straight to radiation is reasonable.  So, last night I decided. I scheduled simulation today, and am not doing chemo. For the first time in 6 weeks I don't have diarrhea, and I slept through the night without crying. I'm divorced,  55 years old (diagnosed on my 55th birthday--I want a do-over!), have an 18 year old daughter.  I wish you only the best.  

  • raincitygirl
    raincitygirl Member Posts: 3,143
    edited May 2011

    NewatThis - I am so happy that just making a decision made you feel so much better.  I think you have just been through the worst part.  Let me know if I can be of any help.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    NewaThis-glad you were finally able to get some answers and make a dicision.  That is the worst part.  Once you know your treatment things seem to start falling into place.

  • NewatThis
    NewatThis Member Posts: 41
    edited May 2011

    Sherry, RaincityGirl, The support you offer is incredibly generous.  Thank you.  This is all like learning a new language, and then practicing law in it! I can't believe I have had to make decisions when the info is all new and overwhelming--and personal.  The kindness and information offered by you all has really been so, so helpful. 

  • raincitygirl
    raincitygirl Member Posts: 3,143
    edited May 2011

    NewatThis - Whatever you need in terms of support, you will find here with so many wonderful and caring new breast friends.  You can also private message (PM) any of us if you would like.

  • Sherryc
    Sherryc Member Posts: 5,938
    edited May 2011

    Newatthis you are very welcome.  Others have helped me along the way so now it is my turn.  And on this journey we are always seeking out support from other.  PM anytime.

  • ncisabbyrocks
    ncisabbyrocks Member Posts: 2
    edited May 2011

    Thank you all for the help and support....this is an awesome site. 

    I decided against chemo and went in for my simulation last week and start rads today. I can't say that I'm not nervous, but I believe that is somewhat normal and I will be fine once the first one is over. I haven't heard back from MO on when I start Tamoxofin, would like to get that started so I can put my mind at ease on that as well.

    Have a great day and a nice Memorial Day weekend.

  • Lee7
    Lee7 Member Posts: 657
    edited March 2013

    If it helps any, I am one that thinks a possible 4% benefit of doing chemo for me wasn't worth risking the permanent SE's I was pretty sure I would end up with. (especially more nerve damage and I had some heart concerns)  My oncoscore was 20, so I struggled with my decision but...

    I feel by not doing the chemo I have a much stronger immune system right now, my blood counts are good,  and I know I am in an overall much better health position moving forward. 

    There are some good threads about radiation and how to take care of your skin. Check them out. I found 100%Aloe Vera worked very well for me, and it was inexpensive too!

  • gutsy
    gutsy Member Posts: 391
    edited May 2011

    My oncotype score was 20 and I decided to have chemo. The oncologist told me I could Probably go either way. I just wanted to throw the kitchen sink at it, even if it was maybe not necessary. I don't have any regrets. I think you need to make the decision that you feel comfortable with. I have three young children, and heck I am the only one who does homework with them.

Categories