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Has anyone chosen not to do chemo?

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Fitmom04
Fitmom04 Member Posts: 40

I saw the radiation oncologist today and he said that I have to do 9 sessions of rads, 5 whole breast and 4 on the surgery site. He also told me that because I am triple negative that it is highly likely that they will suggest chemo. My husband is very wary of chemo and keeps saying, it's your decision, you do what is right. Has anyone chosen not to do chemo? What would be the ramifications of not doing it?

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  • cowgirl13
    cowgirl13 Member Posts: 774
    edited September 2022
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    Triple negative is a very aggressive cancer and if it were me, I would definitely do chemo. As for rads, that's wonderful that you only have to do 9 sessions. Others will post here shortly I'm sure. Good luck, bohartois!

  • edwards750
    edwards750 Member Posts: 1,568
    edited September 2022
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    It’s a tough call that only you can make because it’s your body, your life. Fortunately, I didn’t have to have chemo and honestly if it was recommended I would have had second thoughts about doing it.

    Having said that my BC was early stage IDC. I was Stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments. I dodged chemo because of my Oncotype score of 11. Have they suggested that test to you?

    Then there’s the DX of triple negative BC which is very aggressive. While there are no guarantees most women with your DX want to throw everything at the disease so they opt for chemo. No one wants to do it but a lot of ladies have said it’s not as bad as they thought it would be. Check out the ladies on this website who have had chemo. They can give you tips and advice that will help you through it.

    Whatever you decide it’s a personal decision but also one that you don’t want to second guess yourself or look back and wonder what if…

    Good luck whatever you decide and keep the faith.

    Diane

  • Fitmom04
    Fitmom04 Member Posts: 40
    edited September 2022
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    thank you, yes I'm happy it's only 9 and will probably do the chemo.

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited September 2022
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    I was hormone negative, Her2 positive, also a very aggressive cancer. With Stage 3, it’s kind of a no-brainer that chemo will be part of the treatment. But even if it was stage 1, I would have opted for chemo. The recurrence/metastases rates are just too high for me to have felt comfortable with no chemo. As everyone says, it’s up to you but ask lots of questions. And although it’s not pleasant, chemo is definitely do-able and it is over before you know it

  • Fitmom04
    Fitmom04 Member Posts: 40
    edited September 2022
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    My tumor was 9mm, stage 1b, grade 2. I also had a lumpectomy. The radiation oncologist did say he was going to send to have the test done, but being triple negative he's not sure they will even do it.

    If the medical oncologist says chemo, I will do it. I think my husband is just scared of it.

  • Fitmom04
    Fitmom04 Member Posts: 40
    edited September 2022
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    I'm leaning towards doing chemo, I think my husband is just scared.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,843
    edited September 2022
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    You mentioned that your husband was wary of chemo. How do you feel about it? Would getting a second opinion help ease any concerns? I am not triple neg but if I were and chemo was on the table, I would go for it. Lastly, if you don’t do chemo and have a recurrence would you regret it? Take care.

  • Fitmom04
    Fitmom04 Member Posts: 40
    edited September 2022
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    @exbrnxgrl I'm leaning towards doing the chemo, i would feel horrible if it were to return.

  • Fitmom04
    Fitmom04 Member Posts: 40
    edited September 2022
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    @wrenn, the radiation oncologist is getting the onco type done to see what that gives. But he's unsure they will do it because of the triple negative. I am leaning towards doing chemo, I know this is an aggressive beast and high chance of reoccurrence. So I will throw everything at it that I can.

  • maryjv
    maryjv Member Posts: 269
    edited September 2022
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    I was diagnosed with TNBC, and I had AC-T chemo in 2020. Very manageable side effects, although I know we are all unique! I worked full time through chemo, some fatigue but with the IV medications I was given before chemo I was able to continue working. Like mentioned above, hop over to the chemo threads, such a wealth of help and knowledge on these boards. TBH, my chemo sisters helped me through my chemo sessions and we all bounced suggestions and ideas off of each other. God bless you.

  • Fitmom04
    Fitmom04 Member Posts: 40
    edited September 2022
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    @maryjv thanks, i will go check the threads.

  • serendipity09
    serendipity09 Member Posts: 769
    edited September 2022
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    I was dx'd TNBC and was devastated when I had a recurrence not even year after finishing ACT & Carbo. I was disappointed and felt that I suffered through chemo for nothing, but it really wasn't for nothing because it was a local recurrence, totally treatable.

    It is a personal decision and only you can make that decision and be at peace with it. It sounds like you are leaning towards having the chemo. If it was me and I had to do all over again, I would.

    Praying that all goes well for you!

  • melbo
    melbo Member Posts: 266
    edited September 2022
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    I had HER2 positive, also considered an aggressive cancer, but luckily a little more treatable than triple negative. I never questioned doing chemo and honestly it wasn’t as bad as I thought it would be. It w sucked — a lot — no getting around that, but it was not nearly the horrible experience my imagination conjured. Chemo is doable. If it was a less aggressive cancer or chemo was of questionable value the equation would be different , but if the MO recommends chemo then I would do it.


    Your original question asked: what are the ramifications of skipping chemo, and the answer is that you risk a recurrence or a spread — and once breast cancer goes to stage IV it is considered incurable and you will likely spend the rest of your life getting treated until you run out of treatment options. I know that sounds horrible and terrifying — but that is the cold, hard truth. Breast cancer when caught early is curable for most women — but once it spreads beyond the breast and lymph nodes the equations change dramatically.

    I would find a strong chemo forum in this community and you and your husband should both read through it to see what other women in similar circumstances experienced. Some women have to quit early or have terrible side effects, but for most of us it’s not nearly as bad as we thought it would be.


    good lick

  • parakeetsrule
    parakeetsrule Member Posts: 605
    edited September 2022
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    Tell your husband the ramifications of not doing chemo is that you increase your chances of having cancer again later. TNBC is the hardest to treat when it goes metastatic. There aren't that many treatment options. As others have said, chemo is doable! And chemo is almost certainly not going to be as bad as he is imagining, and it's a lot better than dying of cancer.

  • Fitmom04
    Fitmom04 Member Posts: 40
    edited September 2022
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    @melbo thank you


  • Fitmom04
    Fitmom04 Member Posts: 40
    edited September 2022
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    parakeetsrule thank you

  • kaynotrealname
    kaynotrealname Member Posts: 396
    edited September 2022
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    I have a scared husband, too. He said exactly what your's said, and even stated after my first chemo that he didn't want me to do it again. I didn't get mad or upset although it was hard to hear. Obviously you want your partner's opinion to be your's when you do something this scary and all consuming. But I told him that I wasn't doing chemo for now, I was doing it for 15 years from now. I wanted those points taken off my recurrence rates. Any points I can get taken off my recurrence is worth any action. Anyway I have no judgment over fear. We are all fearful of this. But you do need to make the best decision for you. I will say now that I'm halfway through, 3/4 of the way through on Friday, he's stopped expressing that opinion. Probably because I'm doing okay and everything I did before. Some days I may be slower doing it but life has not even remotely stopped. Most of us on chemo do our same life as before. It's not always pretty, it's rather horrible what it does to you, but you get over it thankfully, and even while doing it find ways to just continue on. And then we get to know we did everything we could do to make sure 15 years from now, we'll still be here.

  • meow13
    meow13 Member Posts: 1,363
    edited September 2022
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    I decided to refuse chemo even though my oncodx score was 34. The statistical data was not impressive to me. I did 4 years AI drugs, now over 10 years NED, knock on wood.