er + chemo benefit, I'm not so sure

Options
cookiegal
cookiegal Member Posts: 3,296
edited June 2014 in Not Diagnosed With a Recurrence or Metastases but Concerned

Ok I am still flip flopping on my chemo decision with an oncotype of 22.

Anecdotally, from what I have read on the boards, even in advanced cases, it seems like treatment is leaning more towards hormonals and away from chemo in very ER+ patients.

My doc says the medications will cut my risk to around 10 percent, chemo gives me an additional 4.5...maybe more, maybe even less, with the margin of error it starts getting down to possibly as little as 2%.

But apart from those stats, for slower growing cancers, I wonder if chemo is an efficient weapon. 

Hope it's not a faux pas to post this here, but of course avoiding a distant reoccurance is at the heart of my decision. 

Any thoughts? I fully admit I am trying to justify a choice not to do the chemo. I am extremely worried about the side effects, I am going to speak with a counselor before I make my final decision.

· Share on FacebookShare on Twitter

Comments

  • Mommaof2
    Mommaof2 Member Posts: 112
    edited November 2009

    I also had a oncotype of 22 and my medical oncoligist said he didn't know if there would be enough of a benefit from chemo to offset the SE's.  After much, much turmoil I have decided that I will go ahead and go through the chemo treatments.  I'm 46 and have a nine year old daughter and a five year old son.  As you can imagine having two young kids is what ultimately influenced my decision.  It is a terrible, terrible choice having to make but after meeting with another oncologist and going over the possible side effects, I'm certain it was the right choice for me.

    Good luck in making your decision.

    · Share on FacebookShare on Twitter
  • TriciaK
    TriciaK Member Posts: 362
    edited November 2009

    I tried so hard to find reasons and stats not to do chemo, but realized ultimatly we get one chance to keep this early stage and we need to throw what we can at it!!

    So far I have'nt bee sorry.  I have many friends who were far earlier stage than I and also her2 negative who have'nt done so well and did recurr.

    I'm sorry you have to make the decision but given the choice again, even early stage or dcis I would do all I could.  Chemo is no picnic of course but very do able and you have the peace of mind in knowing you did all you could to prevent a recurrance.

    My best wishes to you as you decide, I recently had a serious mets scare over four years out and having got the all clear this week feel so pleased I did have chemo.

    It may be arimidex keeping me okay, it could be chemo or herceptin...who knows?  Whatever it is I'm still NED and thankful:)

    Tricia 

    · Share on FacebookShare on Twitter
  • 07rescue
    07rescue Member Posts: 168
    edited November 2009

    I decided to do the chemo because I had already been on the hormonal treatment for year for endometriosis (it's the same treatment) and found the side effects far worse than chemo side effects, so I knew I probably wouldn't be able to go through the hormonal treatment for years, as is recommended. It's turned out that I really cannot stand the hormonal treatment, so I needed to get whatever risk reduction I could from chemo, and am glad I did it.

    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited November 2009

    07 you have a good point!!!

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    Cookie - I agree with all of the previous posters.  I chose to do the chemo, with an oncotype of 23 due to my age of 44, my kids and my desire to throw all I can at this to keep it at an early stage.

    I am very happy I did, and that it is behind me.  If in the future it turns out that it was not necessary, that is fine with me.  I know I did all I can today to beat this.  If I had chosen to not do chemo and it is determined in the future that it would have helped me, well that would be really hard for me.

    Hope that makes sense!'

    Of course, it is really up to you - we will be here whatever you decide!  

    I'm curious what your oncologist recommended - if anything (mine really left it up to me until I said I am interested in chemo).  

    Have I mentioned that this gray area really sucks????!!!

    · Share on FacebookShare on Twitter
  • somanywomen
    somanywomen Member Posts: 872
    edited November 2009

    Hi cookiegal, I too am close to your oncotype, mine is 21 which has 14% rate of recurrence or 86% of non-recurrence...With chemo, it may drop a few percent for me...I have chose not to do the chemo and believe my Onco doctor was leaning that way also...I will do my 6 weeks rads starting Dec 2 followed by 5 years hormone treatment...I hope to make up the 2-3 % I would have gained by chemo by lifestyle change to as much organic foods and products I use on my body (shampoo, makeup, etc), I know it is a personal choice (seems I have had to make a lot of these choices lately), but for me going through the chemo with all the side effects was not one that I was comfortable with...I may regret this one day and then again if I had done the chemo I may have regreted that also....Some of our choices are just dam!ed if you do and dam!ed if you don't.....Good luck making your choice.....

    · Share on FacebookShare on Twitter
  • crusader1
    crusader1 Member Posts: 1,222
    edited November 2009

    Hi

    It's Francine from the NY gathering. I had chemo for an oncotype of 27. Yes a bit higher than yours. I too thought a lot about whether to have it or not. In the end I felt that doing as much as I could do  now was the right thing to do. Two of my doctors felt that it is better to do chemo when it is  a preventive than when it comes back. I was told to go for the chemo as I was young. Not really 62.

    I do believe that this is a very personnal decision. If you feel that you can live with your decision and not have any regrets than go for it.

    My chemo was definitely doable. Yes I lost my hair and luckily have no long term side effects. Chemo , probably the kind you would have is not the type that women had years ago and got so so sick from. You would probably have 4 TC's .(taxotere and cytoxin) .

    Good luck in making your decision.

    Hugs,

    Francine

    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited November 2009

    Thanks for all the input. Balloting remains open! Hanging chads count!

    My hesitations are not so much the experience of chemo, but the risk of long term SE's.

    I think my onc is kind of giving me a little time to work through those. I do have a few things in my family history and medical history that could make the risks a little higher.

    My dad died of a blood clotting disorder after having chemo, and my mom has some nerve problems. There is also some stuff in my medical history that I would rather keep personal on here, but gives me concern about my tolerance of and risk for se's.

    I am going to speak with a counselor at the cancer center of the 10th and meet with the Dr. again on the 15th.

    As for the regrets factor, I feel like I am making a decision based on the best information I can get, and if I had a distant recurrance, I would still know I made my decision out of a desire to preserve my health.

    (Easy to say that now I am sure, there is no way to really know how I would feel.)

    I do think if I had the chemo, and had a recurrance anyway,  I would really regret my choice, especially if it also damaged my health.

    I am willing to work towards a risk lowering lifestyle, I already like exercising,  and I would even be willing to do the phosphate trial, which might give me a point or two..

    Anyhow thanks for all the advice, know that I consider every single bit of it .

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2009

    Cookie - you will make the best decision for you, and none of us are the same. 

    It's good that you have appts with a counselor and meet with your oncologist on the 15th.

    I am also working on that lowering risk lifestyle.  Unfortunately my sister introduced me to peppermint bark hagen dazs ice cream - looks like extra time on the treadmill for me!

    Darn that gray area!  

    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited November 2009

    Yummy.....cookie gal must have yummy pepermint bark ice cream!!!!!!

    Good in shake I bet!

    Maybe for Christmas dessert!!!!

    · Share on FacebookShare on Twitter
  • hollyann
    hollyann Member Posts: 2,992
    edited November 2009

    Well, my score was 11 and I so regret not even having the option to do chemo.....With my strong family history of my mother, grandmother and 2 sisters, I need all the help I can get....BUT my onco said no..I didn't need it and the risks far outweighed the benefit.......Easy for her to say..She isn't the one having to worry about recurrence........

    · Share on FacebookShare on Twitter
  • hollyann
    hollyann Member Posts: 2,992
    edited November 2009
    For some reason it posted twice...Sorryp>
    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited November 2009

    Yes, you make a good point Hollyann....my onc said in some way it's good that I could get some benefit from chemo. If you are low, the benefit is also low.

    · Share on FacebookShare on Twitter
  • -angel-
    -angel- Member Posts: 222
    edited November 2009
    Cookiegal, I am another who was in the gray area with my oncotype.  Doesn't that figure?  Like we don't have enough decisions to make and then we can't rely on the oncotype to sway us definitively one way or the other!  Because of my strong 100% ER+/PR+, I already knew from much researching that hormonals benefit me better than chemo.  If I can remember correctly, chemo added a 4% benefit on top of hormonal.  For me, adding the potential chemo SE's to pre-existing conditions I have on top of the hormonal SE's just was not worth the risk.  I'm already limited in my physical abilities enough.   So I opted out of chemo, even though my Onc thought I should do it, because she's of the old "throw the kitchen sink at it" philosophy.  However, once I made the decision she said, "I'm with you and there is no looking back!".  See, whether you do chemo or not, it can recur.  So just because you opt out of chemo, if it does recur it wasn't necessarily because you didn't do chemo.  I've heard that so many women do chemo for the benefit of a few.  Because until treatment gets more individualized, the standard of care is given to all.  Best of luck with your decision, and go with your gut instinct.  Then don't look back! 
    · Share on FacebookShare on Twitter
  • rreynolds1
    rreynolds1 Member Posts: 450
    edited December 2009

    I had an onco score of 18 which is on the low end of intermediate.  I'm 58 and otherwise healthy.  I decided against chemo because I was told it would improve my long term reoccurence rate by only 3%.  Not enough for me to risk the long term side effects of chemo.  Whatever we decide comes with risks.  That's life!

    Roseann

    · Share on FacebookShare on Twitter
  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    cookiegal, (LOVE THAT NAME), my advice....do what YOU want to do.  From what I understand, Blah (that's a funny name Laughing but I like it) hormonals seem to be the way to go for many women.  I had postive nodes and my tumor was large.  I did much chemo....dose dense AC/Taxol and after mastectomy and rads I did 6 months of Xeloda.  Guess what.  IT'S BACK!  It was a surprise for me and my onc.  Even more of a surprise for my onc after I asked for a biopsy to determine JUST what it was.  Long story.  So, at this time we've changed from Armidex to Aromasin.  I took Arimidex 3 1/2 years.  I was diagnosed after Christmas of '04.  So, do what you think is right for you.  Also, I would go to the alternative thread and chat with the ladies there.  Make sure you're getting plenty of Vitamin D. 

    Good luck on your decision.

    Shirley

    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    Shirley, thanks for writing in.So sorry about your new tumor. :(

    It's interesting, I am just trying to make peace with the decision making process.

    Oddly, somebody on the IV's thread posted advice on making a decision from my own Dr.

    So maybe that's a sign.

    I just sort of get comfortable with one option and try to live with it for a few days.

    At the end of the day, I guess I need to differentiate "nerves" from "clear-headed concern" about SE's. I also have to make sure I can live without the idea of the chemo "safety net".

    I actually flipped a coin today.

    I'll get there, it's a learning experience, and I am greatful that even if I do chemo, I have made it through the holidays first.

    · Share on FacebookShare on Twitter
  • Kathy044
    Kathy044 Member Posts: 433
    edited December 2009

    Thank you for this thread cookiegal.Your profile says you have one positive node, same here. It's that one node making me a high risk that is the wrench in the works in making a decision. I look forward to seeing what your final decision will be. I meet with my onc on Dec 16th. so will decide by then. She's recommending FEC-D

    Did you see this recent (Dec) review article? I found the list of references at the end very useful.

    http://erc.endocrinology-journals.org/cgi/content/full/16/4/1091

    Endocrine-Related Cancer (2009) 16 1091–1102
    REVIEW: Hormone receptor-positive early breast cancer: controversies in the use of
    adjuvant chemotherapy
    Filippo Montemurro and Massimo Aglietta






    · Share on FacebookShare on Twitter
  • rreynolds1
    rreynolds1 Member Posts: 450
    edited December 2009

    Hi All,

    I have a special insurance plan for Cancer.  It pays me for a number of things and one of them is my Arimidex.  I thought it would be reimbursed as a preventive drug but it is being reimbursed as a chemo drug.  So, it seems like we are getting targeted "chemo" like drugs anyway.  I was really surprised but because the drug is also used to shrink tumors it is classified differently than tamoxifin.  The policy would have paid me $150 per prescription up to $1,250 per year.  For the Arimidex I get $300 per prescription unlimited per year.  Interesting. 

    Roseann

    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    Kathy!!!! Thank you for that article!!!!!  You are the best. Gosh it's sorta uncertain isn't it.

    It seems like the research really is leading away. If I had just a little lower oncotype, there is no way I would do it, (though I am a grade 2 not 1).

    I flip flop on this every day....this was very helpful.

    And R renolds you are correct, the AI's are a type of "chemotherapy", in a way, I think.

    Thanks for the replys ladies, balloting remains open!

    · Share on FacebookShare on Twitter
  • cookiegal
    cookiegal Member Posts: 3,296
    edited December 2009

    Ok I am trying to wrap my head around all the new information.

    One study seems to show yes--

    but only if you have a hight oncotype

    Not sure I am putting it all together right.

    · Share on FacebookShare on Twitter

Categories