Chemo or No Chemo 9% recurrance

blessed
blessed Member Posts: 83
Chemo or No Chemo 9% recurrance
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  • blessed
    blessed Member Posts: 83
    edited October 2007

    I know this is my decision, but has anyone out there any advice or have you had this decision to shed any light on the subject.  I am positive, positive, negative, stage one, oncotype DX test in the low numbers.  My family says no chemo and of course I am praying for the correct answer.  Does anyone have any feedback. I have had a double mastectomy in the last month, no radiation.

  • yellowrose
    yellowrose Member Posts: 886
    edited September 2010

    I have a 12% recurrence score over 10 years and am at the low end of the intermediate risk.  My husband and I discussed chemo at length and in detail with the oncologist.  I finally chose to not do chemo.  I really am comfortable with my decision and my husband and oncologist are supportive.  I had a unilateral mastectomy because I didn't want to do rads. 

    The important thing is that you make the decision that you are comfortable with.  I considered my family's concerns but in the end, I had to be able to live with my body so I made the final decision.  God Bless.

  • blessed
    blessed Member Posts: 83
    edited October 2007

    Thank you so much for your input.  I am leaning towards no chemo.  I am blessed just to have that choice I know.  May God Bless everyone on this website.  Love and Laughter Always, Blessed

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2007

    Hi blessed -  I was 44 when I was diagnosed with Stage 1 IDC in April of 2005. ER+++, PR+++,  Her2/neu - negative,  sentinal node biopsy negative.  My Oncotype DX score was a 19.  I choose to have a lumpectomy, rads, skipped chemo (with my oncologists support) and had a hysterectomy w/ ovary removal (many other factors involved in that decision).  I'm taking Arimidex and doing well.

    It was a very hard and personal decision to make.  You will make the right decision for you ...     

    Doreen  

  • blessed
    blessed Member Posts: 83
    edited October 2007

    Thank you Doreen.  I appreciate your comforting words and will take them to heart when I make my final decision.  May God Bless you.  Blessed

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2007

    blessed - what is your oncotype score ??  Have you considered enrolling in the TailorX trial ???    they are looking at the mid group of scores (actually the scores they are looking at include the high end of the low risk area and the low end of the high risk area in addition to the intermediate risk area on the chart that shows your oncotype results) -  they are randomizing participants in the study to do chemo - or not - and following the participants for up to 20 years.

    Hugs,

    Doreen  

  • blessed
    blessed Member Posts: 83
    edited October 2007

    Hey Doreen, yes that is actually one of my options. 

  • blessed
    blessed Member Posts: 83
    edited October 2007

    my oncotype was 15

  • shrlybux
    shrlybux Member Posts: 1
    edited October 2007

    Could you give some numbers for high end of low risk and low end of high risk?  Thanks.  My score was 7% risk of recurrence in 10 years.  No chemo was needed.

  • Lynne
    Lynne Member Posts: 641
    edited October 2007

    My score was 12. 8% chance of recurrence. I chose not to do chemo. It would have brought it down to 5%. I was leaning toward chemo before I had this test. I did have radiation and a complete hysterectomy (get rid of those estrogen ovaries, I was 43 and premenopausal at the time). I am also on Femara (after a year on Arimidex, I may switch back).

    Good luck

    Lynne

  • davisfamily70
    davisfamily70 Member Posts: 146
    edited October 2007

    Good luck on your decision, I had a similar diagnosis, and I chose chemo.  My head was swimming with all the percentages and in the long run I have never been very lucky.  It wasn't so bad but now I am hearing that  the effectiveness of Taxol is being questioned - that really hurts

  • pod1257
    pod1257 Member Posts: 262
    edited October 2007

    My oncotype was 10 with a 7% risk of recurrance in next 10yrs.

    I opted for no chemo as only a 1% benefit per my onc. I had bilateral mast and am taking zolodex shots and tamox.

    Good luck with your decision.

    Julie

  • CarolC
    CarolC Member Posts: 179
    edited November 2007

    Are any of you ER- PR- neg and choosing not to take chemo?  I am going to have the oncotype done but but pretty much opposed to chemo no matter what it says...

  • ravdeb
    ravdeb Member Posts: 3,116
    edited November 2007

    Carol..the oncotype test, I believe, is for hormone positive receptors. Generally speaking, for triple negatives, (I was triple neg IDC) the only treatment other than rads is chemo. And it appears that chemo works best on triple negs. You should speak to your doctor about this...

  • CarolC
    CarolC Member Posts: 179
    edited November 2007

    Hi Ravdeb,

    Actually, it turned out after the final path report that I actually had ER/PR 2% pos.  So I am not *totally* negative. I have been writing to Constantine of Cutting Edge and sharing much of what he opines with my oncologist and they both think it's worthwhile due to the 2% to request the test.

    You are correct in that it may not be approved for that reason, but we're giving it a go.

  • Jenishouse
    Jenishouse Member Posts: 8
    edited November 2007

    HI



    My oncotype was 11 with an 8% chance of recurrance with hormonal therapy alone. My doc said chemo would lower it 1% more, so we decided to do radiation and arimedex. I have seven weeks of radiation and start next tuesday. Hopefully, this was the right decision!

  • SOLwoman
    SOLwoman Member Posts: 1
    edited November 2007

    I am 57, healthy and active and like everyone else, I want to live a long healthy happy life.  I am normally decisive to a fault--now with the chemo decision looming large I find myself unable to make a decision & stick with it.  My Oncotype score was 19 - my IDC tumor was a little over 1.5cm --I am node negative.  I don't WANT to do chemo, but I feel like I will hate myself if I don't do it and I have cancer again in a few years.  I know there are no guaruntees even with chemo -- any suggestions for how to get 'unstuck' would be appreciated.  I've had a biopsy, lumpectomy and another surgery to get clean margins....so it is time to make a decision about the chemo...I have a 2nd opinion appointment on the 3rd but I know the oncologist can't make the decision for me.....

    Thanks

    DX: 10/02/07 IDC Estrogen 73% favorable Progestrone 76% favorable

    HER-2/neu 1.7 borderline

  • sueps
    sueps Member Posts: 2,266
    edited November 2007

    Hello Solwoman xx

    I know exactly how you are feeling with decisions about chemo. Nobody can make the choice for you...it is so difficult.

     None of my nodes were negative but my tumour was triple negative so I don't have many choices as to what treatment I have.

    All I do know is that in months to come I would have been worrying if I hadn't done chemo. I am only one treatment in and still don't want to do it....but given the choice I would rather give it my best....in exchange for a few bad months ....(whatever the outcome might be)

    I know how you feel....  You are right to get a second opinion...everything helps xxx

    My doctors all recommended chemo .... because of my age more than anything .....

    Much Love xxx

  • CarolC
    CarolC Member Posts: 179
    edited November 2007

    I'm still really torn over whether to do the chemo or not. But fortunately, because I have even trace amounts of ER/PR, (2%) the Oncotype dx assay test was approved for me. One of their people called me to discuss insurance, etc. and at the end said "well I wish you a low score...under 18 would be great!  So now I'll wait to see what score I get before making a final decision.

    I had pretty much made my mind up to forego chemo so this will be interesting.

  • 26young
    26young Member Posts: 27
    edited November 2007

    My oncotype score was 12, I was stage 1, estrogen pos. no lymph nodes. Had unilateral mastectomy with tissue expander at time of surgery, just doing tamoxifen. I was part of the tailorx trial. I was randomized to do only tamoxifen. My husband and surgeon, as well as myself am comfortable with not doing chemo. Good luck to you and god bless you. Keep strong and remember you have alot of web friends supporting you. Keep in touch. Phyllis

  • Simone
    Simone Member Posts: 16
    edited November 2007

    You now it really depends on you.  Can you live with the decision of having no chemiotherapy.  Nobody knows really the difference between having it or not  for an early stage breast cancer. They are still doing research on that.  Even the prognostic can be different depending who you are asking or on what site your looking to.  Which meas that you have to make the decision you will be able to live with.  I did go trough this when I had my cancer.  I choose not to do chemio.  But it was my own choice.

    You know prognostic doesnt mean much  when you know that in getting older you have l0% risks to have a breast cancer.  So tell me what  does it really mean when they say that you prognostic is  l0% of recurrency.....

  • Malady
    Malady Member Posts: 32
    edited December 2007

    How do you get a score?

  • Malady
    Malady Member Posts: 32
    edited November 2007

    I am stage 1, Grade 2, HER2 negative.   1.4 cm   I am trying to decide on chemo or not and am leaning toward not having chemo

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    Malady -  Is your pathology Estrogen positive ? and node negative ?   Have any of your doctors mentioned the Oncotype DX test ?? If not -  I'd ask your doctors about this test and tell them that you'd like to have this test done.  It's an expensive test -  many insurance companies are covering it -  and the company that does the testing -  Genomic Health -  helps with appeals to your insurance company decides that the test is not covered by your plan. 

    Keep us posted.  There's also a trial - the TailorX trial - that you can consider enrolling in. 

    Doreen  

  • dizzybuff38
    dizzybuff38 Member Posts: 56
    edited November 2007

    As far as I am aware, the Oncotype test is not available in England - it wasn't mentioned to me by my Oncologist in April 2003 when we were discussing whether I should have chemo or not. I think he told me I would have an 8% better chance of non-recurrence. I went with the FEC chemo, which was tough, as I had to stop my normal chemo, methotrexate for Crohn's and of course I had a flare. I spent the 4 months of chemo living on hospital prescribed Frutijuice, 3 cartons a day, 300 calories, which kept me alive, although I lost 28 lbs.

    My decision to have chemo was really based on the fact that I had 4/18 nodes positive, ( I had idc, 2 cm stage and grade 2, with DCIS,ER+, PR not done, (HER2 was only done last year and thankfully I was negative). I used the cold cap and didn't lose my hair, which I was dreading.

    Looking back I know I made the right decision for myself - I was not swayed by either the bc surgeon or Oncologist. They could give me no reassurance that the lumpectomy and total axillary removal had removed microscopic cance cells, so I decided to have the chemo, and of course 25 rads.

    I am doing fine now, almost 5 yrs, with no recurrence. I don't know if the chemo has done this, but I would have hated to have said no to chemo and had an early recurrence.

    It is though, a very personal decision, and individual tumours, spread etc. can be very different. 

    Liz in Cornwall, England.

  • Malady
    Malady Member Posts: 32
    edited November 2007

    I am HER2 Negative, Node Negative as well.    My tumour was 1.4 cm and had not spread anywhere.    Everything was clean.   My Oncologist said I should have chemo followed by radiation but I am thinking of declining this.

  • Malady
    Malady Member Posts: 32
    edited December 2007

    My lymph nodes were free of cancer (negative) and my estrogen was also negative

  • Malady
    Malady Member Posts: 32
    edited November 2007

    My lymph nodes were free of cancer (negative) and my estrogen was also negative

  • prayrv
    prayrv Member Posts: 941
    edited November 2007

    dizzybuff38,

    The oncotype dx test is only about 2 1/2 years old.  It was not available back in 2003.  I'm so glad that you're doing well. 

    Take Care.

    Trish

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2007

    Malady -  Is your progesterone also negative ??   If so - your breast cancer is what's commonly called  triple-negative  -   triple-negative cancers seem to benefit most from chemo ... there's a whole discussion group here specifically on triple-negative.

    Doreen  

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