Has anyone been Estrogen + HER2 Negative and opted NO chemo?

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NicoleRod
NicoleRod Member Posts: 2,906
edited April 2019 in Chemotherapy - Before, During, and After

I am HER2 negative Estrogen and P+ . I had INSITU cancer in 2015 right breast lumpectomy and radiation. Feb 2019 same breast same type of cancer outside duct (invasive) I believe I am considered stage 1. Had my double mastectomy 10 days ago. I find out next week if I will need chemo. I already know they are definitely wanted to do Tamoxafin > spelling...I did NOT do it the 1st time in 2015.

Has anyone had similar type cancer and opted NOT to do chemo? I ask because I am actually considering not to. Please no judging. Just want others experiences and thoughts.

Thanks, Nicole

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  • Falconer
    Falconer Member Posts: 1,192
    edited March 2019

    Nicole, I also had a combo of Dcis and invasive cancer. I had an Oncotype test which helped me decide not to have chemo, as my score was on the low end. Did your surgeon order an Oncotype or Mammaprint? Those can help the decision regarding chemo.

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited March 2019

    I believe it was oncotype test. I should have the results next week.

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  • Twelvestring60
    Twelvestring60 Member Posts: 70
    edited March 2019

    Niclole and Falconer,

    I also had both dcis and idc I am not sure but I am seeing that when oncotype dx score is higher Chemo recommended?

    Mine was 31 and recommended . Family history heavy. Theres some information about Tailorx Trial that might be a good read? 31 was the bottom of the high I think in that trial.

    Just me but, if it came back, or was always there? Something to add to you decision? Falconer, yes it did help with decision.. :]

    Dorene


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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited March 2019

    Yes that is what I was wondering ...if it came back...or was always there...I personally feel like it was always there....but one never knows. I am the only person in my whole family beside my fathers mother and fathers sister that had breast cancer. My mom, 2 older sisters, cousins etc..none of them has had any breast cancer.

    I have had lyme disease and anytime I introduce anything new to my body the lyme comes out of remission and doesn't like it ...does not play well with it...it can even be healthy things..like turmeric supplements for example...or Holy Basil supplements if the lyme doesn't like it, it kind of fights back and I get bad lyme symptoms from extreme fatigue to fibromyalgia type symptoms and even since like coughing etc.... as soon as I stop the supplements things go back to normal. So this is another concern I have about doing chemo and was the main reason I chose no implants...but the main worry for me with chemo is the neuropathy...and how even people that ice can have this for the rest of their lives and live in extreme pain. I just don't know if I want to risk that...especially if I come up on the low end of the onco scale...

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  • Twelvestring60
    Twelvestring60 Member Posts: 70
    edited March 2019

    Nicole my sister has Lyme disease. If you have a specialist for Lyme, Maybe they know what your going through?Tell you docs about everything! I'm sure you already know that and maybe have naturalist visit unless that's where you learned about Holy Basil and Turmeric? Oils, cooking, teas, all different. Too Much thins blood, etc. (Just opinion) A lot has to do with amounts, your bodys minerals, alkaline etc. Too much, too little can cause trouble! You probably know all this. My sis learned hard way but shes doing pretty good now.

    Read the body, tell your oncologist every vitamin, tincture teas, ailments right? Some of the things they have for side effect for all these chemos and estrogen blockers are tough. and some people experience barely any ! So many different ways to go.  Exercise and healthy foods as a constant seems to be a huge helper in everyone  for a "forever regimen". In any person that can do It..because sometimes, you cannot. But, if it can be done, In a chair, in a bed, Body part that can do it.. anything.. I know, It's an opinion but usually the side effects of this are fantastic.. Start slow and build if ya can when your ready.

    You'll  decide with help from asking questions and figuring it all out what you will do!

    Dorene

    Oncotype 31

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  • NicoleRod
    NicoleRod Member Posts: 2,906
    edited March 2019

    Before my mastectomy I have always walked 3 to 4 miles 4 times a week and do some light weights at gym so I am very active and always have been. I don't see anyone for the lyme because I do not experience any discomfort from it unless, like I mentioned I introduce something new that the lyme does not like. I will be sure to tell the oncologist everything though.

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  • Twelvestring60
    Twelvestring60 Member Posts: 70
    edited April 2019

    NicoleRod,

    That sounds great! Exercise  is awesome.  

    Best of luck at oncologist!

    Dorene





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