Chemo or not

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Tinabug
Tinabug Member Posts: 158
edited March 2014 in Breast Cancer #1
I am new to this site & desperately need some advice. I am 43 & was diagnosed with IDC Stage 1 on Oct. 26th I had a bilateral mastectomy Nov. 23rd with some lymph nodes removed under each arm. I had one tumor in my left breast, but chose to have both removed because I was told I had a 90% chance of getting it in the right one. My Mom died at 43 of bc after a 5 yr. battle. My surgeon & plastic surgeon have told me I need to have at least 4 rounds of chemo. However, we meet with the oncologist for the 1st time on Wed. I do not want chemo I was stage 1, clear margins, & clear lymph nodes. Doesn't that mean I am cancer free? I am not an advocate of chemo because it does a lot of harm to my body. Although, if my nodes hadn't been clear, I would have it. Has anyone opted out of chemo?

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  • S3
    S3 Member Posts: 28
    #2
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    I skipped treatment number 5
    I skipped treatment number 5 of 6. I am having regrets and it is making me more scared about reoccurance. Pre-menopausal women have a higher occurance of reoccurance. I am 46. Chemo is damaging to the body, however it would drasticially make your long term outlook a lot better.
  • Tinabug
    Tinabug Member Posts: 158
    #3
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    S3 said:

    I skipped treatment number 5
    I skipped treatment number 5 of 6. I am having regrets and it is making me more scared about reoccurance. Pre-menopausal women have a higher occurance of reoccurance. I am 46. Chemo is damaging to the body, however it would drasticially make your long term outlook a lot better.

    Thank you S3. I guess I
    Thank you S3. I guess I thought since my lymph nodes were clear I didn't have to worry about it returning. However, from what you are saying, I am wrong. I have been so overwhelmed the last month I really don't know which way is up. I am so ready for this to be behind me, but I keep realizing it is going to be a long time before that happens.
  • tommaseena
    tommaseena Member Posts: 1,769
    #4
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    Tinabug said:

    Thank you S3. I guess I
    Thank you S3. I guess I thought since my lymph nodes were clear I didn't have to worry about it returning. However, from what you are saying, I am wrong. I have been so overwhelmed the last month I really don't know which way is up. I am so ready for this to be behind me, but I keep realizing it is going to be a long time before that happens.

    Stage 1
    Stage 1 for me as well.
    I was 44 when I was diagnosed with DCIS with invasion--my lymph nodes were clear as well. I had a double mastectomy with tissue expanders in Feb. 2009. I started chemo March 10th and continued until the end of July and I will be on Herceptin every three weeks until the end of August 2010.

    Chemo is scary but I feel it is killing off those bad cells as well.

    Margo
  • Ltalcott
    Ltalcott Member Posts: 119
    #5
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    Oncotype DX
    Has your physician discussed this test with you? You seem to be the person the test was made for--IDC, small tumor, neg lymph nodes.

    I am older (54), but had those characteristics also. (In both breasts at the same time!) However, my oncotype DX scores were 9 and 16 respectively, so I am not doing any chemo. I'm ER+, PR+ and HER2-, so Herceptin wouldn't help me, but I'm on Tamoxifen for five years.

    Lisa
  • Tinabug
    Tinabug Member Posts: 158
    #6
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    Ltalcott said:

    Oncotype DX
    Has your physician discussed this test with you? You seem to be the person the test was made for--IDC, small tumor, neg lymph nodes.

    I am older (54), but had those characteristics also. (In both breasts at the same time!) However, my oncotype DX scores were 9 and 16 respectively, so I am not doing any chemo. I'm ER+, PR+ and HER2-, so Herceptin wouldn't help me, but I'm on Tamoxifen for five years.

    Lisa

    Thanks Ltalcott
    Thank you!! We meet with the oncologist for the 1st time this week. I had not heard of this test until reading about it on this site today. I will be sure to ask him about it on Wed. My surgeon was very concerned because of my age & the fact that my Mom died from breast cancer.
  • roseann4
    roseann4 Member Posts: 992 Member
    #7
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    Tinabug said:

    Thanks Ltalcott
    Thank you!! We meet with the oncologist for the 1st time this week. I had not heard of this test until reading about it on this site today. I will be sure to ask him about it on Wed. My surgeon was very concerned because of my age & the fact that my Mom died from breast cancer.

    OncoTypeDX is a must when deciding about chemo.
    I agree that you should have that test done if you are on the fence about chemo. I did not have it based on my score. According to my oncologist, chemo is not the horror it used to be. Of course, no one wants to have it but if I were your age I propably would have with my score of 18. That's the low end of intermediate but because I am 59 I opted not to have chemo. Good luck with this difficult decision.

    Roseann
  • pgrace35
    pgrace35 Member Posts: 122
    #8
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    Good Question
    Tinabug.... that is a difficult question to answer. I had the same situation as you, but there was a few tumor cells that were in some lymphs. Just finished chemo, didn't want to do it either. For you though, I guess you might want to make 100% that you are free, even with a double mast. Ask them why chemo, even if you are free, there has to be some reason. Can is show up somewhere else? Good Luck with whatever your decision is.
  • lovelylola
    lovelylola Member Posts: 279
    #9
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    I actually opted for chemo
    I actually opted for chemo following my oncotype test results. My score was 33 which indicated that chemo would improve my survival rate. Although I had clean margins (with both breasts removed and no lymph node involvement, my tumor was 2.2 cm which according to the onco dr was .2 cm above where they would opt for chemo. That combined with the high score helped me with my decision as I was originally not going to have it.
    I send you positive vibes and prayers on making this very personal choice. Lola
  • Sunrae
    Sunrae Member Posts: 808
    #10
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    lovelylola said:

    I actually opted for chemo
    I actually opted for chemo following my oncotype test results. My score was 33 which indicated that chemo would improve my survival rate. Although I had clean margins (with both breasts removed and no lymph node involvement, my tumor was 2.2 cm which according to the onco dr was .2 cm above where they would opt for chemo. That combined with the high score helped me with my decision as I was originally not going to have it.
    I send you positive vibes and prayers on making this very personal choice. Lola

    I had the oncotype DX test
    I had the oncotype DX test which came out 18, right on the border whether chemo would bnefit me or not. My onc put me on Femara to shrink my tumors before surgery. Mine were 2.2 cm, 1.5cm and a smaller one, plus lymph node involvement. Now I find out I will be having surgery, plus radiation and possibly chemo. My surgeon explained that even with a masectomy she feels like I need the rest of treatments. There must be a reason that your drs. feel like you need more. Hope it all works out for you. Keep us posted.
  • teresa41
    teresa41 Member Posts: 471
    #11
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    Sunrae said:

    I had the oncotype DX test
    I had the oncotype DX test which came out 18, right on the border whether chemo would bnefit me or not. My onc put me on Femara to shrink my tumors before surgery. Mine were 2.2 cm, 1.5cm and a smaller one, plus lymph node involvement. Now I find out I will be having surgery, plus radiation and possibly chemo. My surgeon explained that even with a masectomy she feels like I need the rest of treatments. There must be a reason that your drs. feel like you need more. Hope it all works out for you. Keep us posted.

    my oncotype dx test came
    my oncotype dx test came back 17 my dr told me it was to high i had a lumpectomy and 36 lymph nodes removed eveything came back clear i had 2 drs both tell me that clear nodes does not mean it hasnt spread somewhere else..so i had chemo i was 41 years old..wishing you the best..
  • Kim59
    Kim59 Member Posts: 43
    #12
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    chemo or not
    I started out a stage 1 and then stage 2 after path report came back. Clear margins and nodes. I was told by my surgeon that even with a mastectomy it is not possible to remove all breast tissue. I guess you could still have the possibility of having some cells left behind. I will be having 6 doses of chemo. My oncologist never gave me a choice even with clear margins and nodes. See what the oncologist says.

    This is a very emotional and difficult journey...
  • Kylez
    Kylez Member Posts: 3,761 Member
    #13
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    Kim59 said:

    chemo or not
    I started out a stage 1 and then stage 2 after path report came back. Clear margins and nodes. I was told by my surgeon that even with a mastectomy it is not possible to remove all breast tissue. I guess you could still have the possibility of having some cells left behind. I will be having 6 doses of chemo. My oncologist never gave me a choice even with clear margins and nodes. See what the oncologist says.

    This is a very emotional and difficult journey...

    I would suggest you get the
    I would suggest you get the oncotype test. Just because your nodes are clear doesn't mean you wouldn't need chemo. Good luck.

    KYLEZ ♥
  • RE
    RE Member Posts: 4,591 Member
    #14
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    My 2 Cents On the Topic
    In 97 I was a stage one borderline stage 2 bc patient. I had a lumpectomy and the cancer had not spread to the lymph nodes. I chose to have the chemo that would be given to a stage 2 cancer patient (both my mom and sister had bc as well.) I am so glad I did because 6 months later it returned, it mastasized to the chest wall and the sentinel node. I then had 18 more sessions of chemo and rads. I remained cancer free for 9 years, I have no doubt I would not have survived if I had forgone chemo during the first cancer battle.

    Chemo is a scary I admit, but it is doable and it can extend your life for years and years. During the time since my first dx I have seen my two children graduate from high school, watched my daughter get married, been here to love my three grandchildren and to live well, even if I had aches, pains and residual problems due to the treatment it was all worth it and I would do it all again in a heart beat.

    Please consult your oncologist and have them clearly explain how your odds will change should you choose not to have chemo. No matter what you choose to do please come here when you need to as we are all in this together.

    Hugs,

    RE
  • shortscake
    shortscake Member Posts: 228
    #15
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    when
    When the doctor told me that i will have to have chemo and radiation the only question that i ask was it going to make me live longer, they were like yes but a lot is going to happen to your body that you are not going to be happy about i look at him and said you said if i do them i will live longer he was like yes i was like when do we get started.i plan on being here for a long time got a lot to do. good luck let us know what they say
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #16
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    shortscake said:

    when
    When the doctor told me that i will have to have chemo and radiation the only question that i ask was it going to make me live longer, they were like yes but a lot is going to happen to your body that you are not going to be happy about i look at him and said you said if i do them i will live longer he was like yes i was like when do we get started.i plan on being here for a long time got a lot to do. good luck let us know what they say

    Noone can make the choice
    Noone can make the choice for you, only you can. However, if your oncologist feels it is best for you, I would trust him. Chemo is doable if you decide to take it. We are here to support you thru it.

    Debby
  • MAJW
    MAJW Member Posts: 2,510 Member
    #17
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    Chemo......
    I wish you well in making your decision.......

    I had a lumpectomy, I was stage 2 ONLY because of the size of the tumor.....I had clean, clear margins, and no lymph node involvement..My oncologist laid out the odds of a recurrence of not only in the breast but anywhere else in the body, within 10 years....with or without chemo.......It was a no brainer for me....I wanted anything and EVERYTHING they could throw at this beast! Also I didn't want any regrets down the road if I decided against chemo..
    I didn't want it either, NO ONE DOES..but you said chemo does harmful things to the body......well in my opinion CANCER does far more harm.....chemo didn't kill me but the cancer could have! Chemo today isn't like it was even 5 years ago....they have come such a long way....I had it from June until the end of August...yes, there are side effects but for me they were all manageable...my oncologist is very proactive in prescribing medications for the side effects.......I was never sick, one time, not even the first wave of nausea....but everyone is different....No one can make this decison but you..and I know it's a difficult one...As someone stated, it is impossible to remove ALL BREAST TISSUE, even with a mastectomy as your breast tissue extends all the way under your arms almost to your back.....my radiation treatments radiated that entire area even though my tumor was just above my nipple..
    Please keep us posted......and ask anything you like..everyone is here to help.....
    I wish you well and Peace be with you
  • susie09
    susie09 Member Posts: 2,930
    #18
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    Tinabug said:

    Thanks Ltalcott
    Thank you!! We meet with the oncologist for the 1st time this week. I had not heard of this test until reading about it on this site today. I will be sure to ask him about it on Wed. My surgeon was very concerned because of my age & the fact that my Mom died from breast cancer.

    I think you should have the
    I think you should have the oncotype test first. That reveals so much as to whether or not chemo will help you. Good luck!

    ♠♣ Christmas Susie ♠♣
  • survivorbc09
    survivorbc09 Member Posts: 4,374 Member
    #19
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    MAJW said:

    Chemo......
    I wish you well in making your decision.......

    I had a lumpectomy, I was stage 2 ONLY because of the size of the tumor.....I had clean, clear margins, and no lymph node involvement..My oncologist laid out the odds of a recurrence of not only in the breast but anywhere else in the body, within 10 years....with or without chemo.......It was a no brainer for me....I wanted anything and EVERYTHING they could throw at this beast! Also I didn't want any regrets down the road if I decided against chemo..
    I didn't want it either, NO ONE DOES..but you said chemo does harmful things to the body......well in my opinion CANCER does far more harm.....chemo didn't kill me but the cancer could have! Chemo today isn't like it was even 5 years ago....they have come such a long way....I had it from June until the end of August...yes, there are side effects but for me they were all manageable...my oncologist is very proactive in prescribing medications for the side effects.......I was never sick, one time, not even the first wave of nausea....but everyone is different....No one can make this decison but you..and I know it's a difficult one...As someone stated, it is impossible to remove ALL BREAST TISSUE, even with a mastectomy as your breast tissue extends all the way under your arms almost to your back.....my radiation treatments radiated that entire area even though my tumor was just above my nipple..
    Please keep us posted......and ask anything you like..everyone is here to help.....
    I wish you well and Peace be with you

    What decision did you and
    What decision did you and your oncologist come to? Chemo or not? We are here to support you along this journey. Don't forget that.

    HUGS
  • taleena
    taleena Member Posts: 1,612 Member
    #20
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    Hi Tina... I'm sorry for the
    Hi Tina... I'm sorry for the reason you are here, but glad that you found us... as you can see, you can find a wealth of information, and support here. Though our stories are all different, they are also the same.

    I was dx'd May 20th of this year, I am 42. I have not had chemo, I opted for a lumpectomy and radiation... just graduated from radiation last month... long process to get there trust me...now on injections and als.

    The only thing I can tell you is to get all of the information about your particular case as you can. You already know that you are stage 1... have they told you the grade of the tumor yet?? Make sure that you get that information, because it will play in the treatment option factor... I would recommend the onco type dx.. I was totally in the middle... just like with every other type of test they ran... no black and white for me... it was grey all the way around....

    Once you know the stage and grade... and possibly the onco type dx score, it will help you in making your decision. Information is power... You will find the right treatment plan ... one that is right for you...

    Wishing you the best!

    ~T
  • Ritzy
    Ritzy Member Posts: 4,381 Member
    #21
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    survivorbc09 said:

    What decision did you and
    What decision did you and your oncologist come to? Chemo or not? We are here to support you along this journey. Don't forget that.

    HUGS

    Just want to wish you good
    Just want to wish you good luck in whatever choice you make.

    Sue :)

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