Chemo or no chemo

dadadada North West SydneyMember Posts: 7
Hello all,

I went to see oncologist the very first time on Tues and after his 'calculation' the 10 years overall survival rate is:
  
* surgery + hormone therapy = 90%
* surgery + hormone therapy + chemo = 91%

I had mastectomy done 3 weeks ago.

Just want to see what you lovely people think? Do or not do?  Me and my husband aren't keen with all these known side effect. The oncologist won't even comment should I or should I not do it .

May I please also ask for people who had undergone chemo, what was the benefit or % you have been told that encourage you to do chemo, thanks 

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Comments

  • Blossom1961Blossom1961 VicMember Posts: 1,185
    Hi @dada Sorry but you won’t get an answer to your will I won’t I. It is such an individual choice. You need to make a decision that you can live with and not regret. 
    I had chemo first up due to my BC being so aggressive, then a mastectomy. % didn’t even factor into mine. I did refuse radiation after the mx but my % with or without was unknown as it was so close to be the same either way. Big hugs as you contemplate your decision. Oh, and good on your onco for not pushing you one way or another. Most of them do. Your body, your decision.
  • SisterSister Adelaide Hills, SAMember Posts: 4,168
    edited May 2
    I can't remember the percentage for me.  I know it wasn't big but big enough to make me go with it.  Only you can choose what you can live with - not your oncologist, nor your husband, nor anyone else.  Do remember that you can start down the path of chemo and stop if it gets too much.

    This is a question that comes up from members every now and then and I think that the inimitable @allyjay puts it really well (so well that I bookmarked this response ages ago):

     "Purely on the statistical side, for me, when faced with the same decision as you now are, I looked at it from different angles. One of the scenarios for me was this. I was in a room with 1000 women who were told that they had been diagnosed with my type and grade of breast cancer.  We were all told to have such and such surgery, which  we did. We were then taken back to that same dreaded room and given a card with a number. Then 830 numbers were read out, and those women were  allowed to leave the room  and go next door  for a celebratory cup of tea and slice of cake....considered cured  (10 years). The other 170 shocked women looked at each other with dread. Just then the compere said...."Oh sorry, I  forgot, I have another 70 numbers to draw, that is the women who had additional chemo, they can pick up their bags and join the  others". If, perchance I was one  of the 100 left behind to the future of stage four, would I  wish that I might  have been one of the other 70, or would I go "Que Sera  Sera..." and accept it? For me the answer was "Fuck no" bring it all on, and if  the wheels still fall off, at least I would have given it my best shot, and not have been left with the perhaps..." Each of us has to weigh it all up, make our decisions and then go forward. As Afraser says, having started chemo, you can always stop. But it doesn't work the other way. Best of luck."

    Good luck with whichever path you choose @dada
  • Sara7Sara7 Member Posts: 4
    I had a mastectomy in Feb 18. My oncologist recommended NOT having chemo given the less than 1% difference it made to survival rate. So hormone therapy only for me. Given how much chemo batters your body around and I was stage 1 with no nodes involved I was more than comfortable with her recommendation. I could have still had it, the final decision was mine and I am happy  I didn’t. It’s difficult for you  when your oncologist won’t give their opinion. Hormone therapy has given me enough to deal with anyway.  I wish you all the best.

  • AfraserAfraser MelbourneMember Posts: 2,360
    As my surgeon put it, every one or two percentage points may count. Of course they also may not. The problem is we don't know. Chemo scares everyone but some of us did not have such a bad time - I had no nausea at all, and no fatigue, the most common known side effects. As @Sister says, no-one can force you to stay on a course of treatment if you hate it - you can stop although you may already have some side effects, such as hair loss. Only you can decide how hard or great an obstacle those side effects may be. And your decision is completely legitimate. Cancer is hard for all sorts of reasons, not least making these sorts of decisions. It's also a reminder that much of life is unknown - whatever we plan, about almost anything, things may go differently. And different may not always be bad. Best wishes whatever you choose.
  • melclaritymelclarity Member Posts: 3,350
    @dada I agree your Oncologist will not and is not allowed to advise you on your decision, it does have to be yours unfortunately.

    I never had percentages either, I had no choice with chemo as I had a recurrence same spot in the scar tissue inspite of radiation and 4yrs of tamoxifen. So in my yearly checkup it was found Stage 2 Grade 3, automatic chemo but no radiation as Id already done it. 1 yr later I did a mastectomy/reconstruction as prevention, didnt want to go through another recurrence. I look back at my path and would have chosen differently had I known what my path was going to be. The thing is we make the right decisions at the right time. For me personally I would have opted for a mastectomy and no treatment as at DCIS originally I think that would have stopped it completely.

    You are guided by the Oncologist and I was so against chemo, horrified!!! BUT...I thought to myself as much as I detest having to do this at least I knew I had done everything possible, so I would have no regrets. Eventhough I did everything 1st time...you have to try and find what you feel is best for you...no stats really can do that.

    All the best x M
  • December2018December2018 Member Posts: 26
    I'm pleased that your percentage rates look promising and you get a choice of treatments, except for that 1% pain in the butt.
    Unfortunately I'm with the other ladies the choice has to be yours and yours alone.
    Did your Oncologist give you any literature about your two choices???
    I found all the information I was given by my Surgeon, Oncologist and Breast care nurse invaluable.
    If you didn't receive anything I would recommend chasing it up.

    Wishing you all the best with whatever decision you make.
  • ~Millie~~Millie~ Member Posts: 58
    Hi @dada, I had similar numbers to you and decided no chemo. For me, there was going to be too much collateral damage to healthy body parts (which can be life long) for less than 1% max benefit for my cancer outcome. My oncologist even said, ‘you probably don’t have cancer anymore ‘. Seemed weird to even be offered chemo when it’s so toxic and there might be no benefit whatsoever. My family were all smokers, yet no-one is offering them chemo just in case there are any cancer cells hiding somewhere. If my lymph nodes weren’t clear then I probably would have gone with chemo. Best wishes for your treatment and good luck with your decision. Xx
  • KarenhappyquilterKarenhappyquilter Member Posts: 228
    Everyone’s situation is different, but since you asked for others opinions, here is what I think.

    I wasn’t given statistics like yours.  If I had been given them,  I suspect I would not have had chemotherapy because it’s hard, can sometimes have long term negative consequences and 1% doesn’t seem a big advantage.  I might take into account my age, if I was younger with young children I might do chemo whereas if I was much older with grown up children, I wouldn’t. 

    I took tamoxifen, a hormone therapy, for two years.  Then my oncologist said it was ok to stop taking it, because the advantage of taking it from that time was, for me, very slight,  so I promptly stopped it.  This is not the case with all women, but it was for my situation.  I felt, and my husband agreed, it was worth taking a slight risk, at age 63, because we hoped it would improve my quality of life.  Which I think it did. 

    I also wonder is it worth getting a second opinion from another oncologist?  




  • primekprimek Broken HillMember Posts: 5,016
    When deciding on treatment I always said I didn't want to be years on and have regrets not having taken all on offer. Having lost a sister to breast cancer but having a niece as a 14 year survivor due to a clinical trial...made my choice easy.

    Only you can choose. 1% sounds like such a small benefit...but it is 100 women in 1000. It doesn't sound a small benefit if your part of the 100.
  • kmakmkmakm MelbourneMember Posts: 7,344
    10 women in 1000. Sorry to correct, but it's an important stat. K xox
  • primekprimek Broken HillMember Posts: 5,016
    Ah yes. Thanks for that @kmakm
  • lrb_03lrb_03 Member Posts: 1,102
    Has anyone talked to you about genotype testing? It's expensive but may give a clearer answer. @kmakm, what was the one you had?
  • KarynJKarynJ SE QldMember Posts: 103
    @dada I was given statistics like that as well.  What I learned is that the statistics do not relate specifically to the recurrence of breast cancer.  These are the survival rates in general.  In other words, these people may have died of a heart attack, car crash or some other horrible disease. I also spoke to 2 different oncologists about the geno testing.  There are 3 different tests ranging in price from $2000 to $4000.  And at the end of it, you may be $12,000 poorer with no definitive answer.

    I was advised that I would get a 1, 2, or 3 result.  1 = chemo would greatly benefit, 3 = chemo no benefit and 2 = unclear whether chemo would benefit or not.

    My bc was already in a bit of a grey area and it was highly likely the result would come back as 2 and leave me in no better position then when I started.  I had some significant factors for chemo and some significant factors against chemo.

    So I weighed up everything in my own mind and made my own decision.  It was as informed and educated as it could be.

    Whatever you decide, as one oncologist told me, you have to live with the consequences and not regret it 10 years down the track.
  • kmakmkmakm MelbourneMember Posts: 7,344
    edited May 5
    Hi @dada. Even though it wasn't initially indicated, my oncologist and I felt that my terrible family history warranted a closer look at chemotherapy. I did EndoPredict ($2998 at the time). With this test you get a number on a scale. Mine came back as "clearly in" so I had chemo. Like many here, I didn't want to look back and think 'if only'. No regrets. K xox


    ...and Australia!
  • dadadada North West SydneyMember Posts: 7
    Thank you all of your valuable input.

    After the 2nd meeting with my oncologist on Tues, I have decided to go ahead with the chemo which should be starting next week. 
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