Stage 2A, ER+, HER2-, Grade 3 with TAILORx Trial

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yunlee72
yunlee72 Member Posts: 33
edited June 2014 in Stage I Breast Cancer

My Oncologist recomaded to participate to the TAILORx trial because my cancer did not spead to lymph node yet. I expected chemo for sure becaue my surgent recomanded and I heard from many source it is must to prevent recurrence.

I'm not sure what to do now? Does anybody experience about this trial? Does this worth to do?

No one likes chemo, but if it is help, I do not want to regret later.

I have to decide, please share any info.

Thanks,

Comments

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

    I think the trial is the one that if you are in the gray area for chemo, they randomize you into chemo or not.... so, what that means is that you will go with whatever recommendation they make based on the randomness...

    I assume you had an oncotype test done--- and that you might be in the gray area.  I can only tell you that my bc had not gone into my nodes either-I had clear margins--- and I was  a 27 on the oncotype.  by adding chemo to my treatement, I dropped my risk of recurrence from about 15% to 7% (or something like that-I don't remember completely).  It seemed worth it to me, so I had the chemo.  

    How will you feel if you are randomized to the "no chemo' group?  How will you feel if you  are randomized into chemo?  I would give this some thought--- for me, it was about sleeping at night.  what decision would give me the best chance of sleeping soundly at night and not worrying.... for me, that was chemo--- 

    We all know how hard a decision this is. Please feel free to ask any questions that might help you in the this process.  

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

    I think the trial is the one that if you are in the gray area for chemo, they randomize you into chemo or not.... so, what that means is that you will go with whatever recommendation they make based on the randomness...

    I assume you had an oncotype test done--- and that you might be in the gray area.  I can only tell you that my bc had not gone into my nodes either-I had clear margins--- and I was  a 27 on the oncotype.  by adding chemo to my treatement, I dropped my risk of recurrence from about 15% to 7% (or something like that-I don't remember completely).  It seemed worth it to me, so I had the chemo.  

    How will you feel if you are randomized to the "no chemo' group?  How will you feel if you  are randomized into chemo?  I would give this some thought--- for me, it was about sleeping at night.  what decision would give me the best chance of sleeping soundly at night and not worrying.... for me, that was chemo--- 

    We all know how hard a decision this is. Please feel free to ask any questions that might help you in the this process.  

  • mymountain
    mymountain Member Posts: 184
    edited March 2010

    Hi Yunlee,

    I can only relay my experience.  I was asked, and I thought, kind of coerced by my oncologist to participate in the Tailorx trial.  I declined because I didn't want to give up my right to choose my treatment.  I scored an 11 oncotype dx and had I joined the trial I could have been randomized for chemo, when I would not have otherwise chosen it.  On the other hand, if I had scored 25, I could have been randomized to just hormone therapy and would not have been comfortable with that either. 

    The one advantage of being in the study is your oncotype is completely covered (it is roughly $3,500), but if you have decent insurance, you will be covered anyway,   probably with a co-pay. 

    There are so many things to think about and decisions to make when you are first diagnosed. Take your time and ask as many questions as many times as needed to understand everything that is a part of your treatment.

    MM

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2010

    I was 2A, Grade 3, no lymph node involvement, and would have been really nervous NOT to have had chemo. (Especially 'cause it was a grade 3, which meant it was fast growing.) If you haven't had it, get the oncotype, but I wouldn't want to give up the chemo option; in fact, if you are at all in the gray area, I, myself, would want to do the chemo for sure. Good Luck! Ruth

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2010

    One more thing; don't feel bad if you think that the trial is not for you. Some people really want to be in them (and God Bless them), but they aren't for everyone. I could have been in a trial comparing the standard chemo regimen with a different group of drugs, but if I would have gotten in the 'new drugs' arm, it would have meant 2 additional treatments beyond the norm. I chose not to do it, because I just wanted to be DONE as soon as I could be. I figured there were other ways I could help out the world. So do what feels best for YOU!

  • mymountain
    mymountain Member Posts: 184
    edited March 2010

    I agree with Ruth.  If you are a stage 2, grade 3, You will likely have chemo. But I would still ask about having the oncotype dx done weather or not you decide to participate in the Tailorx trial.

    I have participated in some other studies, but that one just wasn't right for me. 

  • yunlee72
    yunlee72 Member Posts: 33
    edited March 2010

    Thanks everyone.

    My doctor does not order for the Oncotype test yet and he asked me for the trial and I have to decide bt this thurseday. I think he will order fort he oncoty test anyway. Yes, I'm not comfortable to decide my treatment by ramdom if I'm in gray area. My other doctors - surgeon and OB - recommaned chemo on my case, but I'm confuzing that oncologiest say something different. I'm 37 years old and my grade is 3, but my oncologist said these fectors are does not matter to decide fr chemo. It seems he is only relied on the oncotype score. I'm not so sure what I want. I'm afraid of chemo, but in same time I want to evertything I can do to save my life.

  • chasinghope
    chasinghope Member Posts: 126
    edited July 2010

    Hello Yunlee,

    I'm wary of your doc already, but with that being said breast cancer is a complicated beast and it's full of decisions that you must live with not your doctor. I am Stage 1, had a very low Oncotype DX score, but still did chemo.

    My onc works at one of the top 5 cancer institutions in the country. She said the grade 3 makes her nervous because that means the cancer was aggressive, fast moving, angry and wanted to grow up to be big.  I don't think grade 3 is anything to mess around with.

    I trusted my doctor. She told me upfront, whatever your score is I recommend chemo but you can do whatever you can live with.

    I took her advice, chemo 4 cycles of AC every 3 weeks, it sucked, I lost my hair, I was tired a lot, but I survived it, once you decide not to do it, you can't go back and do it again. I do not want to scare you, but I am a realist. I don't want to regret my choices. As of right now I know I am doing all I can to prevent this from coming back but I can't control what the future holds, but at least I can look back and say "I did all I could with the information I had."

    With that being said, please ask questions because believe it or not doctors can give really bad advice. Doctors can also be pretty complacent with their advice because they do not have to live with the consequences, you do. I hope you choose wisely and good luck. Chemo is very doable and I'm a wimp.....okay, I'm a little tougher than I thought......NOW! Best wishes,

    Let's keep letting people know about the truth ladies and fight for a cure!

  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited March 2010

    Yunlee, i'd be careful of your doctor--sometimes I think they are too anxious to get people into their studies.  With grade 3 I would definitely do chemo.  I did chemo and i'm glad i did--i also did radiation & herceptin.  I'm glad i did because if for some reason i have a recurrence, it will not be because I didn't do everything i could.

  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2010

    I'm with these guys; your doctor is making me MAD! He is asking you to make decisions without all the facts and that is NOT right!!! And stage and grade DO matter.....once you are Stage II, it is generally a 'ticket' to chemo, and grade 3 means fast growing and more chance that some micro-cells have escaped into your system, even though they don't show up in the nodes (in which case, chemo is your ONLY chance to catch them!). Chemo isn't fun, but it is doable. I worked the whole time through it. You are young, and you never want to play this game again. I would not do the study, and maybe get a new doctor too!!! Best of Luck! Ruth

  • yunlee72
    yunlee72 Member Posts: 33
    edited March 2010

    Thanks everyone here. I want to get the second opinion now.

    I will keep post here.

    Thanks you again.

  • yunlee72
    yunlee72 Member Posts: 33
    edited March 2010

    One more thing,

    My oncologist said if I do not want to participate to the trial, he will still ask for the Oncotype and decide base on the score. If it is gray area, he will use the computer to decide. I do not know waht does it mesn. I should ask him about this more. He will put all my data to the some kind of system then the it will decide based on some statistic. I don't know. He told me lots of new things I nerver heard, so I was kind of panic at that time.

  • somanywomen
    somanywomen Member Posts: 872
    edited March 2010
    yunlee, what it means is that if you score in the grey area for the TailorX Trial (between 18 and 31) then they will randomize you having or not having chemo....I was in the grey area (score 21) and chemo would have only given me a 1-3% benefit...I was randomized to do chemo and got out of the study, I felt that I could give myself at least that benefit in changing my diet, which I did and have lost weight, lowered my cholesterol 32 points in 4 months and have more energy than ever.....However, my stage and grade are lower also....The great benefit of being in the Trial is that you will have more medical tests to help you make decisions and they will follow your results for years and years....I would have stayed in the trial just for the special attention had chemo benefit been higher for me...Good luck...
  • ruthbru
    ruthbru Member Posts: 57,235
    edited March 2010

    There are computerized programs doctors can use to plug in all your information, and calculate what your risk reduction would be if you do various treatment options. I had my oncologist print it all out and brought it to my GP (whom I really trust) for his opinion before I agreed to anything. I think it is always good to get a second opinion; whether formally or informally, as I did. Let us know what you find out. Ruth

  • Raili
    Raili Member Posts: 435
    edited March 2010

    I'm in the TAILORx Trial.  I chose to join it just because it was a way to get the Oncotype dx test for free, and I wasn't sure if my insurance company would cover it!  My onc assured me that I could drop out of the Trial at any point, for any reason, which is why I felt okay about signing up for it.  I decided that if I was randomized into the chemo group, I would simply drop out of the trial, because I'm strongly anti-chemo (for my personal situation).  It could be the reverse for you - if you strongly feel you need chemo, you could drop out of the trial if you are randomized to the "no chemo" group.

    Luckily, I was randomized to "no chemo" like I had hoped, so now I am staying in the trial!

  • mymountain
    mymountain Member Posts: 184
    edited March 2010

    Just wanted to say the first question I was asked before being asked to be in the trial was "would you accept chemotherapy?. My answer was Yes! if I need it.  If you answer no they are not supposed to accept you into the trial.  The purpose of the trial is research, not to give the oncotype test for free.  It seems realistic that if chemo is a definite no (no matter the score), then there would be no reason to have the oncotype test.

    I agonized over joining the trial, because I wanted to be a help to other women, but at the same time wanted to be sure that if I joined, I would be able to fully participate. 

    .  Also Genomic provides financial help for the test, if needed. Normally they will call you, but if not feel free to call them.  They are very kind and accomodating.

    MM

  • jude14
    jude14 Member Posts: 293
    edited March 2010

    I was a grade three and my onco score was an 18.  I did not do chemo.  After weighing all the risk of the chemo my ocologist told me to go home and forget chemo.  He said the benefit I would get from the chemo would not really outweight the side effects and the things that could happen doing the chemo.  I was a stage one not 2A and I went along with my doctors suggestions.  I did not cherish the idea of chemo.  I knew people a few years down the road who ended up with heart problems from their chemo.  I did lumpectomy and radiation and doing these horrible pills, femara, and everyday I say I am not taking them anymore as they have been as bad or worse then chemo on me.  I still say there are people who do chemo and people who don't and they both have recurrences.  I was 58 at the time of diagnosis though also.   This is a decision each individual must make and live with and anything can happen no matter which way you decide.......jude14

  • yunlee72
    yunlee72 Member Posts: 33
    edited March 2010

    I just came from the doctor's office. I decided not join the trial, but still want to get Oncotype score. So, doctor will request for it. My doctor told me thst if the Oncotype score is less than 18, he will not give me the chemo, and he is so confident about it. He is very famous doctor around here. I'm not sure yet. I will wait for the score and think about it again.

    Thank you so much everyone. I will keep post when I have more issues.

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