Visit with oncologist yesterday

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BethHG
BethHG Member Posts: 27
edited June 2014 in Complementary and Holistic Medicine and Treatment

I told my medical oncologist that I am not going to take any other AI or any other prescription drug to block the Estrogen.  He looked very sad and said that he would support me even with out it.  He did say that I would have to get a CAT scan every couple of years  and have appointment closer together.  Now, I am nervous, but I know that this is the right decision since I was having so many troubles with serious side effects from both Aromasin and Arimidex. I started to to take DIM which I told him about, but that means nothing to him apparantly.  I am learning more about diet and and I am taking baby steps to adjust it--I wish I could alter it faster, but I know myself too well to think that I would actually stick with it if I try to make too many changes at once. 

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  • dlb823
    dlb823 Member Posts: 9,430
    edited April 2011

    Beth, unfortunately, all oncologists have to go on is research comparing A/Is to Tamoxifen or to stats prior to A/Is.  They do not have anything comparing A/Is to DIM plus exercise plus diet modifications that exclude hormone-laden foods like meat and dairy. I made the same decision you did with similar stats, and when that little bit of doubt creeps in, I remind myself that I didn't simply refuse an A/I. I adopted an estrogen-lowering lifestyle.  I have also been fortunate to have BCO friends who remind me that recurrences can happen with & without A/Is, and if I was on one (or Tamox), I would be worried about developing osteoporosis or a stroke.

    Personally, there's no way I would consent to additional scanning (way too much radiation) or even more frequent appointments.  Of course, I don't know any specifics of your dx beyond your signature line, but I believe that staying wrapped up in watching for a recurrence can't be good, nor is it any way to live. 

    JMHO & big (((hugs))), because I've been exactly where you are and understand the alternating satisfaction and fear of following your beliefs when your onc doesn't support you.  Deanna

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  • o2bhealthy
    o2bhealthy Member Posts: 2,101
    edited April 2011

    Beth - at least your onc will work with you, that is a major plus.  When I decided to stop Tamox my onc tried fear tactics but 5% decrease in recurrence was just not worth all the SE's and five years of misery.   Sometimes I get lost in all the conflicting information about what foods to avoid, supplements to take, ect... but all we can do is trust our instincts and do the best we can with the information available.

    Baby steps are good, I tried to change too much too soon and hit overloaded and just stopped trying.  Now I am back in the saddle and starting with baby steps this time. 

    I thank God for this site and the women on it who are willing to post about their experiences.  

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited May 2011

    I also am not taking tamox or AI and both my MO and PCP continue to gently try to persuade me it will reduce recurrence, I have had such horrible life since chemo that I am not willing to reduce quality of life further.  Took tamox for 6-8 weeks, took another 6-8 weeks to get it out of my system.  I have severe peripheral neuropathy in teeth, fingers and feet from taxotere that is with me 24/7 and until I get some relief from that, I will not do any additional treatment, and am not sure why I even agree to followup mammogram/MRI. My PCP had her nurse call me to ask about doing a screening colonoscopy - I politely declined the offer. But I believe both MO and PCP want to do all they can to help me, it just isn't enough at times.

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  • nextstepsfromhere
    nextstepsfromhere Member Posts: 26
    edited June 2011

    Hi Ladies!

    In February this year I stopped AI's, I was in so much pain- horrible bone pain, loss of 18% bone density in a year...anyway, I saw a NP and my onc was awful.  I had tried to talk to him but he just threw pain killers at me, and that of course doesn't help.  My onc tried fear tactics too, he said I would die and that it is unfair to my children that I would do this....a year of him not listening then he resorts to this.  Anyway, my bloodwork is great, things that were high are lower in the high range, things that were low are higher in the low range, so progress.  I am eating very clean, taking a lot of supplements from NP, have an appointment with another onc next month, looking for support and ideas to work with what I am doing....but no more threats, no more talking on the cell phone while doing a breast exam--he is out of here!!  Need to work on the exercise bit, but doing great, feeling much better. Best wishes to all. 

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  • comingtoterms
    comingtoterms Member Posts: 421
    edited June 2011

    I saw my Onc. two months ago, a month after yet another horrific menstrual period, three hystosonograms, uterine biopsies, weight gain, etc. etc. etc., and told him that I needed a Tamoxifen holiday. I was a wreck. I was crying in his office. He supported me, yet reminded me that it is the only thing they have to prevent a recurrence for women like me. He was respectful enough to accept my choice. I will see him again in August and we will revisit it. Chemo was enough. I feel so much better without Tamoxifen in my body. There are way too many women who recur even with Tamoxifen. My life is infinitely better without it. Tammy

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