If given the choice... chemo or no??

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  • Bella Luna
    Bella Luna Member Posts: 1,578 Member
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    I didn't have a choice. I
    I didn't have a choice. I had to do chemo for my type of cancer. If you are asking for opinions than... I would say cancer is NOT something you want to fool with. It is ruthless and lethal.

    In all honesty, I wasn't looking forward to doing chemo. I worried about how it would interfere with my family, my life, and the potential side effects. But... chemo was something I had to do to live. You know what... I got through it. I met other Survivors at the clinic who got through it. Many WARRIORS on this network have undergone treatment too. It is tough, but doable.

    Best of luck with your decision.
    BL
  • sure_hope
    sure_hope Member Posts: 60
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    I was given the choice
    And chose to do chemo - 4 rounds of C/T also. My Oncotype score was 20, and I could have gone into a clinical trial based on that score where the decision would have been made for me (I would have been in a group randomly selected with a 50/50 chance I'd get chemo), but I decided that I wanted to throw everything at the beast that I could now and give myself every chance that this will be the last time I have to deal with it.

    I know that the decision is tough - it was for me too - but I don't regret it. The chemo itself was not nearly as bad as I had feared, and I was able to continue working through it, just taking a few days off for each treatment. And now my hair, nails, and eyelashes are growing back, and other than being a bit more tired than usual, I feel pretty "normal" My last chemo was on February 17th.

    Sending you best wishes and hugs, whatever you decide,

    Cindy

    What is an Oncotype score?

    What is an Oncotype score?
  • cwillnow
    cwillnow Member Posts: 12
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    Hi..My ONCO was 20 (6mm
    Hi..My ONCO was 20 (6mm tumor size and no node involved). Surgeon said I would probably have the option of choosing chemo but when I talked to the oncologist, she said having chemo would probably do me more harm than good. Chemo would have reduced my chance of recurrance by 2%. I opted not to do it...

    Good Luck,
    Carol
  • dee1962
    dee1962 Member Posts: 99
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    cwillnow said:

    Hi..My ONCO was 20 (6mm
    Hi..My ONCO was 20 (6mm tumor size and no node involved). Surgeon said I would probably have the option of choosing chemo but when I talked to the oncologist, she said having chemo would probably do me more harm than good. Chemo would have reduced my chance of recurrance by 2%. I opted not to do it...

    Good Luck,
    Carol

    Well in the end it's your
    Well in the end it's your choice and me personally i had no choice so after 17 yrs i'm doing it again and hopefully this is it.....
  • Snowkitty
    Snowkitty Member Posts: 295
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    I agree with Renee. I also
    I agree with Renee. I also had node neg, onco 22, clear margines. What I usually ask oncologist and their nurses is "What would you tell your sister to do?" That to me is a pretty good indicator. I had chemo, 4 rounds of T/C & rads and now am on Arimidex. I gave it all I could.

    Take care, cindy
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
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    Snowkitty said:

    I agree with Renee. I also
    I agree with Renee. I also had node neg, onco 22, clear margines. What I usually ask oncologist and their nurses is "What would you tell your sister to do?" That to me is a pretty good indicator. I had chemo, 4 rounds of T/C & rads and now am on Arimidex. I gave it all I could.

    Take care, cindy

    Oncotype numbers - recurrence rate math
    This is what I understood from my oncologist, and I may have it wrong. It goes a little beyond the Recurrence Score, explaining a little more about why the lines were drawn where they are for recommending or not recommending chemotherapy.

    I'll use my oncotype scores as an example. My Oncotype Dx recurrence score was 31. This happens to be the lowest number of the high risk group and the group that is recommended to have chemo - and I did. There is also another number in the report that delineates the average rate of distant recurrence within 10 years for patients on Tamoxifen only. For my score (31) the women with that score had a rate of distant recurrence of 21% if they were on Tamoxifen only. My oncologist told me that chemotherapy reduces that rate of recurrence by 30-40%. Using 40% (of course!), having chemotherapy reduced my rate of recurrence with Tamoxifen alone from 21% to 12.6% with both Tamoxifen and chemo. That made the chemo worth the risk, at least to me.

    There are also scores for Estrogen, Progesterone, and HER-2 receptors. My scores were 8.9 (positive for Estrogen), 5.8 (positive for Progresterone) and 9.3 (negative for HER-2). Somehow, those numbers are included in the calculation of the recurrence score, but I don't know how.

    When your score is in the area (14-30 I think) where it's sort of up to you to decide on chemo or not, you might want to ask your oncologist about this prognostic number. It helped me understand the efficacy of chemotherapy in my case better than just seeing where the lines are drawn. Of course, it's based only on the number of women/cases who were in this study (651). This number is after the Results section in the section titled: "Clinical Experience: Prognosis for Node Negative, ER-positive Patients".

    Again, this is how I understood it - doesn't mean I understood it correctly. It also doesn't mean that all oncologists think it's relevant. Because I'm obsessive, I read it on my Oncotype results, and then asked my oncologist how much chemo improves this and she said 30-40%, and we did the math.

    Hope this helps.

    Suzanne
  • DebbyM
    DebbyM Member Posts: 3,289 Member
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    carkris said:

    that is really tough
    that is really tough question to answer. I think if they had told me I didnt need it, I would not have. but when given the choice????? I would do it. because I am the kind of person who needs to feel I did everything I could. If anything came back and I didnt do everything I dont think I could deal wth it. I hate it when they give you a choice AGHHHH!
    anyway perhaps they can give you numbers and then you can see how you feel about it. glad your prognosis is so good you dont need it. Good luck

    If I was told by my
    If I was told by my oncologist that I needed it, I would have taken chemo. I didn't need it, so, I didn't do chemo. But, if my oncologist had said that it would help my life expectancy and lessen the % of a recurrence, I would have.

    It all comes down to it being your decision.

    Good luck!
  • lori1961
    lori1961 Member Posts: 56
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    I would choose the chemo.
    I would choose the chemo. Has you're doc talked to you about the Oncotype test to see the likelehood of you're cancer coming back? Just an option. I did my first round of chemo and it was not so bad until my hair fell out. Everyone said I thought it would not fall out until further treatments but it did. But now at least do not worry about if falling out anymore. My insurance even pays for a wig. Good luck.
  • lori1961
    lori1961 Member Posts: 56
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    I would choose the chemo.
    I would choose the chemo. Has you're doc talked to you about the Oncotype test to see the likelehood of you're cancer coming back? Just an option. I did my first round of chemo and it was not so bad until my hair fell out. Everyone said I thought it would not fall out until further treatments but it did. But now at least do not worry about if falling out anymore. My insurance even pays for a wig. Good luck.
  • beetle25
    beetle25 Member Posts: 150 Member
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    lori1961 said:

    I would choose the chemo.
    I would choose the chemo. Has you're doc talked to you about the Oncotype test to see the likelehood of you're cancer coming back? Just an option. I did my first round of chemo and it was not so bad until my hair fell out. Everyone said I thought it would not fall out until further treatments but it did. But now at least do not worry about if falling out anymore. My insurance even pays for a wig. Good luck.

    I would choose chemo to give
    I would choose chemo to give myself the best chance of the beast to not return. I did choose chemo and had a terrible time, in the hospital twice, once with a severe infection and once with pneumonia and extremely low white blood cell count. If I had to do it again, i would do it all over again. Everyone is different and chemo effects each of us differently, but I think it gives us the best chance to live a long long life.
  • kit kat
    kit kat Member Posts: 56
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    beetle25 said:

    I would choose chemo to give
    I would choose chemo to give myself the best chance of the beast to not return. I did choose chemo and had a terrible time, in the hospital twice, once with a severe infection and once with pneumonia and extremely low white blood cell count. If I had to do it again, i would do it all over again. Everyone is different and chemo effects each of us differently, but I think it gives us the best chance to live a long long life.

    I was giving no choice. My
    I was giving no choice. My Doc said If I didn't do chemo I would have 8 years to live I'm 49.I finished chemo Sept 29th. I was in and out of workI wish I haD A CHOICELove Kit.
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
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    Snowkitty said:

    I agree with Renee. I also
    I agree with Renee. I also had node neg, onco 22, clear margines. What I usually ask oncologist and their nurses is "What would you tell your sister to do?" That to me is a pretty good indicator. I had chemo, 4 rounds of T/C & rads and now am on Arimidex. I gave it all I could.

    Take care, cindy

    Did your oncologist give you
    Did your oncologist give you the Oncotype test? Many rely on the outcome of that.


    Hugs, Jan
  • sausageroll
    sausageroll Member Posts: 415
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    kit kat said:

    I was giving no choice. My
    I was giving no choice. My Doc said If I didn't do chemo I would have 8 years to live I'm 49.I finished chemo Sept 29th. I was in and out of workI wish I haD A CHOICELove Kit.

    Yournaturalcancer
    I somehow took offence at your reply. Everyone is different and everyone has a different choice to make. I understand where you are coming from, but as "lay people" it is not our job or even sensible for us to give such strong recommendations. We can only describe our experiences and let others make their own decisions.
    I for one had chemo and my very large tumour was almost invisible by the time I got to surgery...that doesn't mean that someone else should opt for chemo and the decision is often so hard to make and of course there are always side effects.
  • carkris
    carkris Member Posts: 4,553 Member
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    Yournaturalcancer
    I somehow took offence at your reply. Everyone is different and everyone has a different choice to make. I understand where you are coming from, but as "lay people" it is not our job or even sensible for us to give such strong recommendations. We can only describe our experiences and let others make their own decisions.
    I for one had chemo and my very large tumour was almost invisible by the time I got to surgery...that doesn't mean that someone else should opt for chemo and the decision is often so hard to make and of course there are always side effects.

    That is wonderful 14 years
    That is wonderful 14 years after triple neg cancer prime example of why we do this. I did not have the choice either. But sometimes I think about how mad i am going to be if this comes back after it all, but neverthe less I am glad I gave it a shot, and positive stories make me feel good.
  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
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    carkris said:

    That is wonderful 14 years
    That is wonderful 14 years after triple neg cancer prime example of why we do this. I did not have the choice either. But sometimes I think about how mad i am going to be if this comes back after it all, but neverthe less I am glad I gave it a shot, and positive stories make me feel good.

    There are 17 million people
    There are 17 million people in the United States today that can be grouped as having cancer where it has not been detected yet. By that I mean from the initial process of a series of mutations to our genes thru a multi step process towards its growth to a size where it can be detected with todays technology of imaging tools. Some cancers may take several years to become detectable as they are very slow growing, others are aggressive and may be discovered in weeks or months. Never have early warning symptoms within our bodies been so valuable to having the best chance of success to treat cancer. What makes cancer so vicious among other reasons is that many have no symptoms until the stage is advanced. Other premptive measures for early detection is mamograms, pap smears, colonoscopies, and PSA tests and exams for prostrate

    The choices we have once dx is completed and our Dr(s) give us the treatment plan is too:

    1. Get another opinion from another DR or Dr's (and do our research as well)
    2. Start treatment from the DR we select and trust
    3. Accept only surgery (if applies) but avoid chemo, rad and other targeted therapies
    4. Avoid all western conventional treatment options and seek alternative treatment options (which are not covered by Ins co. and must be financed by us) and try to navigate thru the jungle and unscientific "alternative" methods that are Advertised

    5. Combine Traditional treatments (chemo,rad) with Alternative such as TCM)
    6. Do nothing at all

    Is there a right answer that fits all? No but common sense, sharing with other cancer survivors such as the CSN members here, and making a decision that you feel best with is a great starting place.
  • Cindy Bear
    Cindy Bear Member Posts: 569
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    No...
    Forgive me for weighing in, I sometimes mosey over here from another board. You ladies are an amazing bunch. Chemo is not without risks, and side effects, and it offers no guarantees .. I am not familiar with the type of BC you have or stage, etc but if you have the all clear, I would ask what chemo will offer you in the nos. game.. if it's only going to decrease your risk of recurrence by 2 or 4 or less than 10% even, I would not do it, but that's just my opinion.
  • Kristin N
    Kristin N Member Posts: 1,968 Member
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    Stacy-
    this is just my

    Stacy-
    this is just my opinion, but if that were me in your situation i would still do the chemo. My reason, I have done EVERYTHING in my power to prevent my having to go through this cancer BS again, and to put my family and children through it again. I only had a small tumor in my right breast, and I chose to have both removed in a bilateral mastectomy. I had clean margins & no lymph involvement.
    Plain and simple - I don't want to have to go through this again, and I don't want to die from this. Chemo sucks. But fatigue, nausea, hair loss -they're all temporary. Death isn't. My treatment decisions might be looked at as dramatic by some - but I've never been one to do things quietly ;)
    But ultimately, you have to make the decision that's the best for you. Like it was said earlier - chemo is no fun, but it is very doable, and it's done before you know it. They have medicine for any crappy side effects you might get. That became my answer for everything when people would feel sorry for how I was feeling - "I have a pill for that".
    Best of luck to you Stacy in making your decision :)
    *hugs*
    Heather

    No chemo for me
    Chemo wasn't recommended for me by my oncologist. However, if it had of been, I would have done it. We need to bring both guns barreling out to kill the beast. Good luck!

    Kristin ♥
  • Noel
    Noel Member Posts: 3,095 Member
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    Hubby said:

    Your Nurse?
    If I understand your post correctly, you are getting treatment advice from your nurse. That just doesn't sit well with me. You need the advice of your Oncologist, and possibly a second opinion from a different Oncologist. Your body, your decision, but really think this through.

    Bob

    I didn't have chemo, but, if
    I didn't have chemo, but, if your oncologist thinks you should have it to stop a recurrence and to rid you of the cancer, don't you think you should do it?

    And Bob is right, you shouldn't take advice from a nurse.

    Good luck with whatever you do.
  • jnl
    jnl Member Posts: 3,869 Member
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    sure_hope said:

    What is an Oncotype score?

    What is an Oncotype score?

    Oncotype is a test that some
    Oncotype is a test that some oncologist's give to their patient to see if chemo is needed. It gives you a number as to if you need it, are border line or should definitely take chemo. Some oncologist's don't believe in this test, as, they feel it isn't reliable. Ask your oncologist about it, and, he can explain it much better.


    Leeza
  • Angie2U
    Angie2U Member Posts: 2,991
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    MyTurnNow said:

    Stace, what does your onc
    Stace, what does your onc recommend? Is the decision based strictly on the Oncotype test? When I was first diagnosed, 6/09, my onc showed me percentages of survival based on various treatments. It was based on my type and stage of bc. Chemo was recommended as was rads. The most important treatment for me was the hormone therapy for 5 years following treatments. If you have any questions or feel like you are second quessing yourself, get a second opinion. Good luck as you work your way through this maze.

    I would have taken chemo if
    I would have taken chemo if my oncologist would have recommended it. I want to do anything to rid myself of cancer.