Now what...

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Limegreenery
Limegreenery Member Posts: 3
edited July 2017 in Triple-Negative Breast Cancer

Thank you for your time and for your consideration...

Three and a half years ago I was diagnosed with Invasive Ductal Carcinoma, Stage 1, Grade 3. I had a double mastectomy and ACT. Immediately following chemo I was started on Tamoxifen and in February, 2017 I started the Anastrozole protocol, with both drugs causing physically crippling side affects... but no alternatives were offered.

I was never really happy with my oncologist although stayed with him after he was recommended by so many in my community. My GP referred me to a new oncologist at the same respected clinic and I saw her one week ago today.

This past Friday, my new oncologist's PA called to tell me I don't have IDC as originally indicated in the biopsy prior to my mastectomy, but that a retest of my tumor( I guess they hang on to them!) indicates I indeed have triple negative breast cancer. And while the double mastectomy and ACT protocol were appropriate, the prescriptions Tamoxifen and Anastrozole have done nothing except to cause flu like symptoms and crippling bone pain... for three years.

I immediately needed to stop the anastrozole as well as the Celebrex, Celebrex, Tramadol and Hydrocodone I was on to manage the bone and joint pain... and will see my new oncologist in three weeks to determine next steps.

Now what? My quality of life as a 54 year old has been very painfilled the last 3 years of being on estrogen blocking drugs... and now I've been treated for a cancer I don't even have.

What could I do next? What should I do next?

Limegreenery

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Comments

  • Scwilly
    Scwilly Member Posts: 489
    edited June 2017

    I am so sorry you find yourself in this position. I have been on Anastrozole for only 9 months and know its side affects well.

    I am confused they have told you you don't have IDC - as I understood that being Triple negative is just Breast Cancer without the ER and PR and HER expressions and does not exclude IDC.

    I would ask your doctors to clarify and if they would suggest you have any further treatment. With my TN (my original dx not my reoccurrence which came back ER+) I had ACT, surgery and then radiation. After that I wasn't in any treatment - so that might mean you do not need any more either. Your DX of Stage 1 is very encouraging and you should feel comfort with the low chance of reoccurrence after your tx.

    Sending support for you in what must be a very stressful time. If this is overwhelming don't shy away from getting helped for anxiety to help you through this time.

    Sarah

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    I agree with Sarah. You likely still have IDC, just not hormone positive.

    Good luck with the new MO.

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  • Limegreenery
    Limegreenery Member Posts: 3
    edited June 2017

    My tumor was low positive/negative.

    What I can't wrap my head around is why I was prescribed medication for 3 years that isn't helpful...

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited June 2017

    Sometimes, doctors will prescribe anti-hormonalswith any percentage of ER positive cells to be on the safe side.

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  • havenmother
    havenmother Member Posts: 9
    edited July 2017

    hang in there i am tn and starting my secind set of surgeries and chemo. I only mafe it 18 months before reoccurring. Have Faith im 65 you can do this

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