Oncotype 21 is Chemo beneficial or is DM a better option.

My first diagnose was DCIS which I choose to have a Lumpectomy but after my F/U apt the diagnosis had become invasive which require me to have future surgery for re-excision of further tissue and lymph node removal. This became a more extensive surgery requiring a Particle Mastectomy due to tissue involvement. Finally results show clean margins and neg lymph nodes. My plan of treatment was to do radiation and Tamoxifen therapy for 10 years. I had just received my Oncotype Dx score of 21 which puts me into the intermediate group. I was also told my age of 49 puts me at a higher risk of recurrence. Everything that I have been reading doesn't give a real percentage if Chemo is beneficial. During my first visit with my oncologist he stated that if I fell into the intermediate group it will come down to a personal decision to have the Chemo. I am having a very hard time with this decision, with not enough proof or infomation of the benefits to having chemo I have become very confused and stressed on making the choose. I also would like to know would having a double mastectomy decrease my risks of recurrence over having Chemo? I am not able to meet again with my oncologist or surgeon until after the 8th of Jan due to the holidays which is causing more frustration because I feel I need information sooner than later. My Radiation therapy is to start Jan 2nd and I don't want to put this off if not necessary. I just need closer on making a finally decision so I can begin the right treatment I can feel confident about choosing. Scared and unsure.

Comments

  • curveball
    curveball Member Posts: 3,040
    edited December 2013

    Did you get a graph with your Oncotype results? When I had the test done, I got a graph of recurrence risk with and without chemotherapy. One way to get an idea of your recurrence risk is to use the cancermath online calculator. Input all the diagnostic information you have and it will give you an idea of how likely you are to have a recurrence, with various treatment options. However, that calculator doesn't take your Oncotype score into account. Unfortunately, being in the intermediate range makes for a harder decision. It is truly a gray area where it isn't clear whether the benefit of chemo is greater than the risk.

    You don't need to make up your mind about chemo right now. I don't think chemotherapy would start until your radiation treatments are finished, which means you have some time to think about it. I know it's frustrating not to be able to get more information right away, but I really think your oncologist is the one to discuss these questions with.

  • anmore
    anmore Member Posts: 15
    edited January 2014

    I just had my first appointment with the oncologist today to discuss chemo and Tamoxifen. My Oncotype score is 20, and I am left to make the decision regarding chemo. The doctor said that that translated into a 13% chance I would get cancer somewhere else. If I do chemo, it will decrease that number by 3%. I'm not sure if this information will be of any help nor am I sure what I'm going to do and what 3% means to me. 

  • Warrior_Woman
    Warrior_Woman Member Posts: 1,274
    edited January 2014

    My score was 24 and I've opted for chemo.  A 15% recurrence risk is too high for me to cope with.  I also had a BMX.  A double mastectomy decrease risk of local recurrence and systemic recurrence risk reduction is the purpose of chemo.

  • anmore
    anmore Member Posts: 15
    edited January 2014

    Thank you Warrior Woman.  I appreciate your sharing. If I have the chemo it will bring my risk from 13% to 10% which seems like a lot to me but the people that I've spoken to think 3% isn't worth doing chemo. I'm confused! I'm glad to know that there are other people who think any percentage is worth it!

  • jumpy
    jumpy Member Posts: 43
    edited January 2014

    anmfar--I think the MO means that chemo would reduce your risk by 3-4% from 13% to 9-10%. If you are ER+ the bulk of re benefit is from Tamoxifen, but if your Oncotype Recurrence Score is >18, then their is believed to be SOME benefit to chemo. My RS was also 20 and I did chemo 4xTC. The chemo used in studies to determine these %s as CMF. Today's chemo is believed to be slightly more effective, so it is possible to infer that the benefit of chemo may be as much as an additional 5% reduction in risk. I hope this helps. --Jumpy

  • Nancyjeanne1967
    Nancyjeanne1967 Member Posts: 56
    edited January 2014

    Tdep64-my onco score was 18. I went to 4 different oncologists to find out what they would recommend.  1 said she would never recommend it just for 3% 2 said my decision and the 4th, also a woman, said I have a six year old (I also do) and I couldn't live with myself if I had a recurrence and hadn't done everything I could to prevent it. Although there is no guarantee ( if there was there wouldn't be ppl with cancer ) I chose to do chemo because like the 4th oncologist said, I couldn't live with it if I chose not to and had a recurrence.  I would always think......what if. Three things to think about. 1) one oncologist said out of all ppl in the gray area 60 % choose to get chemo, out of the 60%, 85% are under the age of 50. I'm 46. 2) We are in the gray area and as ALL 4 oncologists said they just don't know if chemo helps us or not. 3) it's your body your choice, unfortunately there is no accurate decision. I spent 4 weeks meeting with dr's trying to get the answer and guess what, it came down to personal choice. 

    Make a choice that's right for you and don't look back!!!! that's the best advise I can give. 

    Jumping into the shower and heading off for my first round of TC. Hugs to all!!

  • paloverde
    paloverde Member Posts: 179
    edited January 2014

    With my lymph node involvement, I couldnt have Oncotype, and my MO has quoted me a 15% distant recurrence risk even with the chemo and hormone therapy.  ("Only" 1% to 3% risk of local recurrence or a new primary, since i had the BMX, but taking the BRCA into account). So I have to live with that.  

    She suggested we focus on the flip side - 85% chance of no recurrence - which is 6 chances out of 7.  As they said in Rain Man (paraphrasing), "take your winnings and go home, 'cause those are the best odds you'll see today.".  :)

    I hope when my daughter is my age (40's), they'll have adjuvant therapies that reduce recurrence risk from 13% to 1%, not 13% to 10% at the price of majorly disrupting your life for months and risking permanent side effects.  With the exception of targeted therapies like Herceptin, sometimes I feel like the chemo aspect of BC treatment is stuck in the Stone Age.  

  • paloverde
    paloverde Member Posts: 179
    edited January 2014

    P.S.  I'm not sure if its the same everywhere, but my understanding is chemo takes place first, before radiation.  They don't want to be pounding away at the local area while ignoring the bad cells that may have escaped and started establishing themselves distantly, elsewhere in the body.  

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited January 2014

    My onco was also 21. I chose chemo. I think the onco test/risk  was taking into account that you will do hormone therapy also. Could be wrong. I am 58 and otherwise healthy.  I think your  menopausal state is also a factor when doing the onco test. I just don't think I could forgive myself if I got a recurrence down the road and didn't take the option of chemo when I had it.  My MO told me 5-6% benefit...maybe that's with TC like was mentioned above and not the CMF. Hopefully, there will be more trials done and it will be an easier decision for others. I am doing 4 TC's and, so far, I have done very well as far as SE's. Good luck on your decision; it's not an easy one. I haven't heard of rads prior to chemo, either.

  • Sistercoyote2
    Sistercoyote2 Member Posts: 38
    edited January 2014

    I am basically in the same position as you.  I have to appointments on Friday to hopefully help me make a decision regarding chemo or no chemo.  My oncotype score is 19 invasive ductal carcinoma with a lumpectomy on December 17.  I want to move forward and put this behind me.  No positive lymph nodes with here removed.  It has been a difficult couple of months.  The best to you.  

  • anmore
    anmore Member Posts: 15
    edited January 2014

    Thank you for all of your responses.  I have an appointment for a second opinion and am planning to make up my mind once and for all next Tuesday.  It is such a hard decision for me, and some days, I just want to pop the Tamoxifen and be done with it, and other days, I want to do the chemo because I want to see this through and know that I did absolutely everything I could.

    Sistercoyote2 - hope your appointment went well today.  I wish you the best.

    Angela

  • LizzieK
    LizzieK Member Posts: 67
    edited January 2014

    My oncologist at Mass General in Boston told me she does the Mammaprint gene test (big in Europe)  for those in the intermediate range.  It provides more information to help make the decision for those in the intermediate zone.  I would ask for that test. 

  • Rockym
    Rockym Member Posts: 1,261
    edited January 2014

    I was 46 when diagnosed with IDCI believe my oncotype was 21.  I tried to come up with any reason I could not to do chemo, but I had micromets in 2 lymph nodes.  I also had young kids and figured I was very strong and healthy so I felt I could handle it.  If I didn't have positive nodes, I would never have done it.  I will say that for me chemo wasn't that bad going through it, but my body is so different now.  It seems like I aged 10 years after chemo.  I won't go though the long list of things that have happened since, but now at 49 my body isn't what it was.  It could have been the instant menopause or perhaps these things were going to happen anyway.  It just seems strange to go from fit and healthy to old lady like in only a few years.  Just my 2 cents.

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