Oncotype Score of 21 - Not Sure About Chemo?

mje123
mje123 Member Posts: 77
edited June 2014 in Stage I Breast Cancer

I am 39 years old  with no familial history of breast ca.  2 months ago was diagnosed with stage 1 invasive ductal carcinoma isolated to L breast after mammography, core biopsy, US - isolated 1.2cm lesion (path report was read as grade 2 by one pathologist and grade 3 by another pathologist).  

I am now one month post bilateral mastectomy.   The path report of the tumor was defined as grade 2/3, size 1.7cm, ER+, PR+, Her-; oncotype score is 21 - on the low end of intermediate range.  I met with a medical oncologist yesterday who initially was recommending both chemo and tamoxifen then did not seem sure based on oncotype score of 21.   Trying to decide whether of not I need chemo as the oncologist is leaving it up to me.  It seems that the uncertainty of grade 2 or grade 3 was causing the oncolgist to recommend chemo but now not sure after oncotype score of 21. 

Any thoughts/feedback/experiences would really help.  Thanks

Comments

  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    mje123,

    I am supprised at your age the onc is not making a recommendation. You can see my stats, and my onc gave me the choice but did say if I was 50 or younger she would recommend chemo. I am 57. I decided to do the chemo.

    It was a very hard decision to make, but I felt if it came back I would always second guess myself.

  • mje123
    mje123 Member Posts: 77
    edited October 2010

    kira1234,

    The onc initially recommended chemo based on my age and grade 3 as read by one pathologist although it was read as grade 2 by another. After the oncotype score of 21 she has left the decision basically up to me citing numbers of only approx additional 3% benefit of decreased recurrence of adding the chemo along with the tamoxifen. 

    Thanks so much for your feedback

  • somanywomen
    somanywomen Member Posts: 872
    edited October 2010
    My score was exactly as yours, it is a very tough decision that we are forced to make....I found some very interesting information on a website...www.oncotypedx.com...........At top click on "Managed Care Organizations", and then from drop, click on "Unmet need in early breast cancer"...May confuse you even more but it does have some eye-opening statistics on Chemotherapy-related adverse events.....To me no matter what we choose, we will have a recurrence or not..... Whatever you decide, the very best to you.
  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    http://annonc.oxfordjournals.org/content/20/8/1319.full

    This is an article I found after I started chemo. I had to stop because of SE, and this gave me some peace in a decision I had to make, rather than wanting to make.i was also told 3% with a 24 score.

  • mje123
    mje123 Member Posts: 77
    edited October 2010

    somanywomen... thank you for that info and for your insights here.  

    kira123a....that is a very interesting article.  thank you very much.  There certainly does not seem to be consensus on chemo in this gray area.  

    I am interested in how much weight is currently being given to the oncotype score.  Since it is a genomic test it seems like it should and is carrying significant weight in decision making.

  • mje123
    mje123 Member Posts: 77
    edited October 2010

    sunflowers,

    Thank you so much for that information and your input.  I am probably at one of the top medical centers in the northeast if not the US.  Interestingly enough I myself am also a physician although not a med oncologist.    Even as a physician I am finding it difficult to get to the correct answer in my case - I guess I am finding out that there may not be one right or wrong answer here. 

  • Sherrie1964
    Sherrie1964 Member Posts: 72
    edited August 2013

    mje123 -

    As everyone says, it's a very personal decision.  I think my score was either a 21 or 22 and my onc said anything over 18 would mean chemo.

    From my perspective, 3% doesn't seem that high unless you're on the wrong side of the statistic.  So to me, that was a big enough difference.  Somebody has to be in that 3% and I wanted to do everything I could to try and not be.  It's true, you can have chemo and still have a recurrence; but I knew I couldn't live with the "what if" if it happened to me. 

    I hope this helps.

    Sherrie

  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    mje,

    I just realized today is your first day. You will be limited to 5 posts in a 24 hour period. You can PM anyone you want after your 5 posts. You go to member list, pull up the name and then click on send PM.

  • whitbyjet
    whitbyjet Member Posts: 23
    edited October 2010

    Hi-

    It is such a personal decision. I was 41 when diagonosed-stage 2A, no node involvement ER+her2-.  I couldn't decide if I should do chemo, either. My onc originally suggested I do it because of my age. When I was hesitant, we did the oncotype score and it came back in the grey area too-25. I was given a possible 3%, but also a possible negative outcome of 5%, as well. They just do not know what is right for those of us in the grey area. At the end of the day it's your deciscion to make. With my oncologist's OK/agreement I decided not to do chemo. I did 33 rounds of rads after surgery (clear margins) and Tamoxifen. Dec will be my 2 year 'anniversary' since diagnosis. Once I made the decision, I havent regretted it, because what's the point? If it does come back, at least I can still go the chemo route then, but I'm hoping it doesn't, as we all do! Good luck to you. I know everyone is different and it's a very personal, and sometimes agonizing decision to make.

    Deborah

  • mje123
    mje123 Member Posts: 77
    edited October 2010

    Thank you all for great feedback and insightful information.  It certainly helps to hear of others thoughts/experiences.   I am learning that it is a very personal decision without a clear cut answer. 

  • kira1234
    kira1234 Member Posts: 3,091
    edited October 2010

    Deborah,

    In your case your oncologist talked about the negative 5%. I just wish my Dr. had discussed that side with me. I think we all should be given all the info, good and bad before we are asked to make such a life changing decision. I know in my case I was given a sheet which listed the usual side effects, which I was more than happy to deal with.

    Karen

  • momand2kids
    momand2kids Member Posts: 1,508
    edited October 2010

    mje

    I think your grade should be taken into consideration and it looks like there is some disagreement about grade.... you may want to really find that out-it could help you in your decision.

    I was in the gray area--- I had so many good indicators but a 27 score...In the end, I worked to drive down my risk of recurrence-and for me, the chemo gave me peace of mind.  I had a lumpectomy, 4 rounds of chemo and radiation---my onc at DFCI agreed with my decision---while it was not easy, I have not regretted it--- I am almost 2 years out....some people suggested that I hold off and see if it came back--- that was not an approach I could tolerate, but I imagine it could work for some people.  This is personal, and at the end of it all, you have to be content with what you have decided.  No one else has to live with the potential side effects of the the  chemo, no one else has to live with the uncertainty.... there are pluses and minuses to each decision, but it is YOUR decision.

    I can tell you that chemo was unpleasant, but I did not suffer too many side effects and do not feel as though I have any residual effects.  If you decide to do it, there are many here who can walk you through it.  If you decide not to, there are many here who can help with that as well.....

    all the best

  • alottolivefor
    alottolivefor Member Posts: 2
    edited October 2010

    I just found out my score is 27 so I have been reading message boards to try to determine what my oncologist is going to recommend. I see her tomorrow but from what I have read it appears chemo will be part of the plan. I just turned 40 so I prefer to do everything I can to make sure I don't go through this again. I will post tomorrow after I find out!

  • mje123
    mje123 Member Posts: 77
    edited October 2010

    Good luck with your appointment tomorrow.  Will be interested in hearing what recommendations you are given by your oncologist

  • alottolivefor
    alottolivefor Member Posts: 2
    edited October 2010

    I met with my onc today and even though I had a score of 27 she doesn't feel chemo would give me any real added benefit above the Tamoxifen that I will be taking since my tumor was only 1/2 cm. I see this as great news and am glad to move on with the rest of my reconstruction! Hope this helps anyone else looking for some input. I am being treated at one of the best centers in the country (Duke) so I am relying on their expertise.

  • Susie123
    Susie123 Member Posts: 804
    edited October 2010

    I think to an extent we all have to pick a good onco that we're comfortable with and then just go with their gut feelings. They do this everyday and have the training and experience that we don't have. Then we ask, if it were your mother, wife, daughter, what would you do...I think their answer to that question is the best shot we have.

  • mje123
    mje123 Member Posts: 77
    edited August 2013

    alottolivefor,

    Thanks for providing the information.   I guess that it is an individualized decision and is also very subjective, varying from region to region based on different oncologists with no clear cut answer.   I am also a physician and have had a difficult time finding definitive information despite being an MD myself and having access to some of the best facilities in the US in Boston, MA.  I have similiar stats to yours -age 39, stage 1, node negative, ER+, PR+, HER2 -read as grade 2 by one pathologist and grade 2/3 by another; I have an oncotype score of 21.   Two separate oncologists in Boston are recommending chemo (AC x4).  Both centers are among the best in the country.

     Good luck to you

  • CinD
    CinD Member Posts: 163
    edited October 2010

    I am surprised they are recommending AC x 4 chemo, since Adriamycin may cause heart muscle damage in a small percentage of people. My oncologist recommended TC x 4.  So far, TC has not shown problems with heart damage.

    Something interesting about the OncotypeDX test is that it is based on the benefit received from CMF chemo. It seems as if this combination isn't prescribed as often anymore and, from what I read, is a slightly weaker form of chemo.

    I hope the right decision becomes clear to you soon.

  • mje123
    mje123 Member Posts: 77
    edited August 2013

    CinD,

    Did you get specifics on why you were recommended TC instead of AC?  I met with 2 med oncs in Boston at major centers who both agreed on AC instead of TC.  Apparently TC is much more difficult from a SE standpoint although you are correct that it does not have the cardiac effects (although this risk is significantly small in comparison).  

  • CinD
    CinD Member Posts: 163
    edited October 2010

    I was recommended the TC only because of the potential, though small, of heart damage. I have no history of heart disease, no factors that would make a doctor say, "we need to avoid anything specifically that might cause heart damage for this patient." I had two oncologists make this recommendation, one who is a personal friend who specializes in breast oncology, but unfortunately lives 1,000 miles away. 

    I was lucky and found the side effects with TC fairly easy to tolerate. It stopped my periods, which now at age 50 may or may not return. There was no nausea or vomiting, only some intestinal discomfort at the time of my last treatment. Mostly, I had the general tiredness and weakness, metal mouth, and major hot flashes due to the chemopause. There is also hair loss.  Now at six months since my last chemo, I feel great! Again, I may just be lucky.

    I know that a few people have a serious allergic-type reaction to Taxotere, and the nurses are always careful to begin running it in slowly. The steroids given the day before, of, and after may help keep that away. They watch you closely when administering Taxotere.

    There are so many ways to treat breast cancer, and these decisions are so difficult. Sometimes I wish there was only one tried-and-true treatment so we would know we were doing the right thing.

  • Aza
    Aza Member Posts: 76
    edited October 2010

    mje123

    Have you met in person with the pathologist who wrote your report?  I wish I had done that  in the first place, as i think I would have gained much more clarity as to exactly what I'm dealing with.

    Also, since your oncologist now seems indecisive as to whether you should have chemo, have you considered consulting with another oncologist?  When faced with such uncertainty, you need someone  to direct and take charge, and it should not be left up to you alone to make the decisions.

    Like yours, my Oncotype score is 21. In my case, my oncologist told me she was comfortable with my not having chemo if I chose not to.  So I chose not to. I will have radiation and take Arimidex instead.  HOWEVER, I am considerably older than you, and I'm sure your young age will be an important factor in whatever treatment decisions are made.

    Best of luck to you, and take care . . .

     

            
  • mje123
    mje123 Member Posts: 77
    edited August 2013

    Aza,

     Thanks for the input.  No I have not met personally with the pathologist but I think that would be a good idea.    I think chemo is being recommended based on my age (39) and tumor grade (grade 2, possibly grade3) although it is categorized as stage 1 and there is no node involvement.  I had a bilateral mastectomy for a 1.2 cm lesion without nodal involvement.  The only question there seems to be is the grade.  The oncotype score is on the low side of intermediate approaching the cut off of 18 for low recurrence risk.  I am not sure how much the oncologists weigh oncotype vs. grade of the tumor.  As I said previously I am an MD myself and I know from experience in my field that a pathology report and reading is a very subjective thing. 

    Best to you....

  • Claire_in_Seattle
    Claire_in_Seattle Member Posts: 4,570
    edited October 2010

    I was in a different position than you are, as clearly needed heavy artillary.  I did SIX DD AC, followed by SIX DD Taxol and got through just fine.  I am part of the SWOG 0221 study, so why the extra chemo.

    The fact that two oncologists recommend AC tells me that they are very concerned about possible cells migrating elsewhere in your system.  At the very least, your cancer cells were "questionable", and certainly not Grade 1.

    Something else to think about is your general health.  I was extremely healthy otherwise going in, and a year later, still am extremely healthy.  So I was able to take the hammering.  I had enough energy to cycle throughout my treatment and did a major cycling event within six weeks of finishing radiation (Seattle-to-Portland....200 miles over two days). 

    I suspect though, that you won't need radiation.  I had a lumpectomy with node involvement, so I definitely needed it.

  • mje123
    mje123 Member Posts: 77
    edited October 2010

    Claire_in_Seattle,

    Yes I agree that it seems to hang on the grade of 2/3.   All other markers in my case seem to be favorable.  What is uncertain is to how much emphasis should then be placed on oncotype of 21 which is closer to 18 than 30.   The question I posed to the oncologists is what do they do with grade 2 or grade 3 that comes back with low end oncotype score.  There is not consensus there.  As an MD I do know the inherent subjectivity in pathology reports.  Mine was read as grade 2 by one pathologist at a major center and grade 3 at another center.    I guess that there is and will not be consensus on if chemotherapy is truly needed in my specific case and whether or not it is really adding any defined clinical benefit. 

    No I will not need radiation.  Nodes were negative.  I chose to have bilateral mastectomy with recons instead of lumpectomy even though my tumor size was small.  I wanted to reduce my local recurrence risk and risk of contralateral new lesion to as close to zero as possible.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited October 2010

    mje123-  Read this study regarding the OncotypeDX score and specifically, look at Table 5.  It examines the discordant "numbers" between the various grades and the Recurrence Scores.

    http://www.nature.com/modpathol/journal/v21/n10/full/modpathol200854a.html

    My impression is that women in the "gray" area have the hardest time making a decision. Making the decision even harder I  think there is a true dilemma when a woman has a discordant score, that is, a grade 3 tumor with a fairly low Intermediate OncotypeDX score.

    I think the takeaway message is that, as good as the test is, a good medical oncologist should be able to put ALL of the prognostics together and help you come up with a treatment plan.  Furthermore, at the end of the day, there are some women who will want to take more risks to get a 1% benefit of chemo, while others might want more benefit before agreeing to chemo.

    I ended up getting THREE opinions.  I saw two oncologists who were highly recommended and I also was lucky enough to have the opinion of a niece who is an oncologist as well.  I was very lucky that all three agreed with the plan.  Would someone else in my shoes, with my scores and prognostics done the same?  I have NO idea.  If you have any doubts about your treatment plan, then by all means, get a second or even a third opinion, make your decision and move on.  I'm a few months away from my active treatment and now beginning to be "comfortable" with my decision.  Only time will tell if I made the right decision.

    Good luck to you and all of my breast cancer sisters!

  • mje123
    mje123 Member Posts: 77
    edited October 2010

    voraciousreader,

     Thank you for your thoughts.  I had read that study previously and found it very interesting.  I am in the process of obtaining a third opinion from an onc regarding my case.  I am slowly learning that chemo may only provide a 1-2% potential benefit and this is also questionable.   I am finding that not all medical oncologists weigh the oncotype score the same which makes it extremely difficult to process all of the data and information.  There is no consensus on treatment for low intermediate oncotype score such as mine and grade 2/3.

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