Denial or Hope?

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screech
screech Member Posts: 212
edited November 2016 in Stage IV/Metastatic Breast Cancer ONLY

I am wondering if I am in complete denial, or if I am just optimistically hopeful.  I was diagnosed a year ago in March with BC-bilateral, one side they said probably stage 0, one probably a 3.  They did a PET which showed one tiny hot spot in the sacral region.  It was unable to be biopsied so it went unconfirmed.  Then did AC/T and was re-scanned.  PET showed complete response-no sign of where the spot was.  Just showed as healed/filled in.  Because of response they say it was a metastasis.  Then had a BMX (showing clean lymph nodes), then radiation.  Started on Zometa/Aromasin.  Had another PET at the end of March-NED!  Do you think it is impossible that this spot was not a metastasis?  Does anyone else have similar experiences?  Thank you.

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  • jcfree
    jcfree Member Posts: 105
    edited May 2015

    Congrats on your NED status! That is really good to hear. I had 3 bone mets diagnosed Nov. 2014. After 6 Taxotere/Herceptin/Perjeta treatments, the bones mets are completely gone. I too am now NED status after PET and full body bone scan. Now am just on H & P indefinately. My Onc said I was an exceptional responder, my tumor was 5.3 cm and is more than 50% reduction in size and had nodes that are completely cancer free now. Now waiting for apt. with BS to schedule masectomy. I also take Zometa every other treatment for a year, then every 3 mos. after a yr. Don't know if your spot was a metastasis, but it sounds like it responded to your treatment and now is gone, so that is how they are determined it was?

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  • 3-16-2011
    3-16-2011 Member Posts: 559
    edited May 2015

    hi screech

    I dont know if you have read much on oligometastasis. People are very hopeful about mets to just one site. Look it up for more hope and best of luck to you.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited May 2015

    Metastasis usually stills shows up on Pet scans, though they show inactive; so I'm not sure whether yours was metastasis or not.

    Terri

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  • screech
    screech Member Posts: 212
    edited May 2015


    Thank you all for responding.  I have read up on oligometastasis and am putting a lot of hope in that.  JC-yes, based on the total resolution they say it was most likely a metastasis.  And Terri-they said it shows as completely filled in, like it was never there.JC - I had a bmx and just got my permanent implants.  I am very happy with the way I look now.

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  • screech
    screech Member Posts: 212
    edited October 2016

    I'm just checking in - I have made it two full years and I'm still clean. I wonder if that puts more weight on the hope side of this. Thank you all.

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  • Rosevalley
    Rosevalley Member Posts: 3,061
    edited October 2016

    Screech- May you beat the odds and it never come back or at least live a good many decades NED and then maybe they will have a cure for this damn disease!! It sounds good and I hope you live your life as if you didn't have cancer. Be well.

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  • Kandy
    Kandy Member Posts: 1,461
    edited October 2016

    I am also hoping you are one of the lucky ones. I was originally diagnosed in 2009 at stage 3. I went stage 4 with one met in October 2013. I stayed NED until a couple months ago. Tumor markers started rising, pet scan showed one met. We were going to do radiation but one type of imaging led to another. Every time they imaged there was another spot. So long story short, I went from NED to multiple mets in just a couple months. But with that being said, does that mean it will happen to you, God only knows. I have broke all odds and not in my favor. It doesn't really matter if someone told you that there was only a 1 percent that it will come back if you are in that 1 percent. Understand what I'm trying to say? My advice is to try not to worry about it. Worry doesn't change the outcome only robs you of valuable time. Try to enjoy the moment and celebrate that you are NED right now.

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  • screech
    screech Member Posts: 212
    edited October 2016

    Kandy-you are so right! I remember you reached out to me back in 2014 when I was first reeling from the diagnosis. I never would have thought that two plus years later my life would be as normal as it is-even with the "shadow" always there. I really hope your next treatment is a success! Rosevally-what a nice statement-gush, gush.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited October 2016

    Great news, screech!! I would have more hope for sure, based on what one of my doctors told me. She said I was "over the hump" at two years. I took that to mean things were looking better than ever. Maybe still not the rosiest but I slept better at that point. Hoping the same for you.

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  • Twirp26
    Twirp26 Member Posts: 178
    edited October 2016

    I am a newbie to this thread! So petrified!! I was diagnosed last October 2015. I did neoadjuvent therapy Herceptin, perjeta, and taxotere. After 4 treatments, my cancer grew. I then was switched to FEC for 3 treatments. There is very little evidence this did much for me either. I had a partial mastectomy on my left and found 27 of 27 positive nodes. 35 rounds of radiation and now on an ovarian suppression and AI. I was told I was high risk for reoccurance and spread. Well 1 year later and my pet shows clean on left side and activity under right arm in lymph nodes. I am scared all over again. I won't find findout what's next until biopsy. I guess I just need some support from others going through this. I'm so scared!!

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  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2016

    Twirp26, I am going through a major depression from the idea my bulging disk is cancer.

    It is awful the anxiety and despair is a killer. I hope your biopsy comes back benign.

    You are not alone.

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  • maureen100
    maureen100 Member Posts: 1
    edited October 2016

    Hi screech,

    So happy for you that you're still NED! I am in a similar situation - I was originally diagnosed with bc in my left breast in Jan 2012. I had a bilateral mastectomy and 4 rounds of chemo. Then I was on Tamoxifen until Oct 2015 when I found a lump in my left underarm (axilla). My bc had returned with small mets to my diaphragm and a spot on my chest wall. After thoracic surgery, chemo to shrink the tumor in my axilla and 35 rounds of radiation, I am NED and taking Ibrance and Femara. I feel hopeful and so does my onc that I will be around for a long time. But I have my moments of doubt. I want to believe in oligometasis but the medical community doesn't seem to support the idea. Maybe we are lucky. I hope so - I have so much still to do in this life....

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2016

    Dear maureen, Thanks for sharing your story here. We hope that you will stay connected on the boards. We welcome you. The MOds

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  • screech
    screech Member Posts: 212
    edited November 2016

    Thanks all! Heidi - my appointment with the onc after the recent clean pet was like I was in the drive-through line at the bank! So not much was said so I will take your doctor's "over the hump" comment to heart. Thanks!

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  • screech
    screech Member Posts: 212
    edited November 2016

    Twirp and Meow-I hope all is going well. Maureen-let's keep it rolling!

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