Thinking of refusing chemo with 26 oncotype

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  • dtad
    dtad Member Posts: 2,323
    edited November 2018

    Jadejo....just wanted to let you know you are not alone. I have multiple autoimmune disease and have been disabled for 16 years. Its the number one reason I chose to only do a BMX and refused anti hormone treatment/chemo. People just do not understand. QOL is paramount for me. I'm almost 4 years out. So far so good. Take care.

  • Jadedjo
    Jadedjo Member Posts: 469
    edited November 2018

    Dtad

    Thank you. I know it's hard to explain to people who haven't lived it. When your quality of life has already been ruined by your health adding treatments that are going to make it worse (and tamoxifen WILL aggravate one of them) is for me worse then getting a reoccurance. I've been living with severe acid reflux and regurgitation for 4 years now, everyday is hell cause I never know if it will be a good day (little to no nausea) or a bad day (heavy nausea), then it's wait and see if my other chronic illness decides to have a bad day too. Everyday for these years has been some kind of hell with very little respite. I'm just done dealing with nausea on a daily basis. 

    Here's hoping you have many many MAAANY more years of NED and it never comes back.

  • Gem63
    Gem63 Member Posts: 2
    edited November 2018

    Hi Pineappleskies

    I fully empathise with your feelings about going a more natural route. I felt exactly the same. I had the surgery and the tumour was removed with wide margins. To me, that was the end of the cancer. I "felt" that, that was that, move on now, no need for radiation or hormone treatment. I did some research and soul searching and finally reached the decision to go with what the doctors recommend. My biggest fear is if it comes back because I chose not to follow the recommended protocols. At least if I do follow them, and it comes back, then I've done whatever I could to prevent it, along with a healthy diet and exercise, which I do have control over. I just felt that I have people who love and care for me, and I need to do whatever I can to get rid of this. I also wonder who I could turn to if it came back and I didn't follow the recommended protocols. I could hardly go back to the team and say "please help me, it's back" if I never took their advice to begin with. It's such a draining decision to make, but in the end I chose the least mentally stressful option in the long run for me. Either way, you're damned if you do and damned if you don't.

    I am on day 16 of Tamoxifen now. Feeling exhausted and achy, hot flushes, the works. But I hope my body will settle and so will I.

    Meditation apps are great to calm things and give you me time. I do them at least twice a day.

    I hope you are able to make the best choice for you. Love and light.




  • edwards750
    edwards750 Member Posts: 3,761
    edited November 2018

    It’s a tough call but it’s your call and your QOL. I did follow the conventional route frankly because I was scared not to. To be fair I never did any research about alternative options. It wasn’t an option for me. I didn’t want to look back years down the road and wonder what if?

    Still there are ladies with success stories from ladies who chose an alternative route. You just need to weigh the pros and cons. I too would be reluctant to go back to the same medical team if I had a recurrence. I’m sure they wouldn’t say I told you so because that would be classless.

    Doctors aren’t infallible but for me at the time their advice was gospel because I was clueless about this insidious disease. I was branded, forever, with the C word because I drew the unlucky card. Is what it is.

    Good luck with whatever you decide.

    Diane


  • L-O-R-I
    L-O-R-I Member Posts: 114
    edited November 2018

    It is a tough call.  Choices are hard to make, especially on demand.  The best part is that your journey is "Your Choice".  For those like me, who have decided to go 100% alternative, or for those who are doing a mixture of the two, I came up with a great idea that I want to share!  Take an old spice rack and convert it to a supplement rack.  Some of those old spices are probably years old anyways!  When I am done taking my capsules out for my morning dose, I put it back in the cupboard where it is dark.  Afternoon and evening, same thing.   Also, for most of my capsules, I buy the supplement in powder or root form.  If root form, I put it into my Vitamix and turn it to a very fine powder.  I then put it in the empty capsules that I buy from the health food store.  It ends up costing pennies per capsule instead of 5 to 10 times more.  It's easy to do and really helps with organization.  Especially if you are trying to maintain your job while taking your journey.  Anyone have tips to share with me? 

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