Recovery?

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LoveFromPhilly
LoveFromPhilly Member Posts: 1,308
edited April 2018 in Stage IV/Metastatic Breast Cancer ONLY

Dear all you beautiful people,

The story told over and over again about being diagnosed with MBC is: "Metastatic Breast Cancer is treatable, not curable."

This bothered me so much the first time I heard it spoken.

Both the oncologist who initially broke the news to me and then the oncologist that I visited for a second opinion cited those exact same words (as if from a script they were required to memorize) as they explained my diagnosis one year ago (de novo Stage 4 Metastatic to the Bones, ER+, PR+ HER2-).

Now I am trying to re-wrap my head around this story. I think I am trying to possibly change this story.

I have heard people say (through what seems to be whispers and grapevines) they know someone who has fully recovered from this diagnosis.

Is this true? I can't seem to figure out what is right in my head.

Thank you so much for all you thoughts and feedback.

With love from Philly <3

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  • DATNY
    DATNY Member Posts: 358
    edited April 2018

    NED or NEAD stand for no evidence for disease or no evidence for active disease. You can find stories on this site, for example: https://community.breastcancer.org/forum/8/topics/830627?page=22#post_5161211

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited April 2018

    there is a small % of women who have one metastatic event, then are Ned for the rest of their lives. It is estimated to be around 3-4 % . I have been Ned for over 7 years and have been on no treatment for 3 years. Am I in that 3-4%? I don’t know, only time will tell.


    Lauri

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited April 2018

    thank you Lauriesh and DATNY :)

    This helps!

    Just trying to wrap my mind around all of this.

    (this comes and goes in waves about 100 times/day)

    Lauri: that’s amazing! I would imagine there’s some feelings of disbelief but wow, seriously so incredible! And I am so happy for you that you were able to get off the medications. Could you possibly share about how/what that process looked like for you? Like, when did your doctor and you know it was safe to come off the medications? And how old were you when you did?

    I am asking because I’m 41, in medical menopause and on letrozole and Ibrance and xygeva and Lupron...I just wonder if anyone around my age has been able to have their body deal with the hormonal changes of going off their meds etc etc...I am trying to not feel like estrogen is evil.


    Thanks so much! Brenda

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  • Lauriesh
    Lauriesh Member Posts: 692
    edited April 2018

    Brenda, my cancer was the opposite of yours. It was er/pr - and her2+. I have never had to be on hormonal therapies and went through early menopause at 42 when I had chemo for liver mets. Because my cancer is er-, I even use a vaginal estrogen cream to help with dryness.

    I had to decide to come off the her2 meds and that was because the side effects ( neuropathy, flu like symptoms) were becoming too much.


    Lauri

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited April 2018

    Philly, I was diagnosed metastatic from the start in January 2011. After one year of big treatments, chemo, surgery, rads, I am on arimidex and stable this whole time. Scanned every six months. Chemo put me into menopause. I was 53.

    I have lots of normal in my life. Even in hectic, upheaval times, I am grateful to be here. Last onc visit, she said, “lots of new treatments have come up since you were dx.” She smiled. I took it to mean she figures I will be around for a while to come since I am having exceptional response to treatment.

    I read the books: AntiCancer, Mind Over Medicine and Radical Remission. They inspired me. I dont do anything drastic like crazy diet or compulsive exercise. My big thing is simplify life, lower stress, do more and more of what I really want to do an much less out of obligation. More living. Also read the book The Blue Zones. Places in the world people live longst and what their lifestyles are.

    As Lauresh asks, am I cured? Only time will tell. My outlook on life and approach have changed due to the disease, and I have learned to make the best of it. I try to live a more meaningful life, yet that doesnt mean i am bogged down with intense emotions every day or remain perky and positive either. I see myself as living with this disease, not dying from it.


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  • ABeautifulSunset
    ABeautifulSunset Member Posts: 990
    edited April 2018

    hey Fellow Philly Girl! I was born and raised there. I don’t live there now, but ILove my hometown!! Go Eagles!

    I’m sorry you find your self here.i remember those early days of disbelief. My cancer make up looks a lot like yours. I was 47. By the way...I’m almost 54 now. I was NED for three and a half years, and then had a small progression. So..no longer NED.

    Unfortunately stage 4 BC is not curable..but it is livable. I do only have minimal disease that I am living with. Some things do indeed suck, but for the most part I live normal life, I travel, I raise my kids, and I have fun.

    Lots of great threads and info here. Friends to be made.

    Sunset

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,308
    edited April 2018

    Dear lovely people!

    Dear Lauri - thank you so much for explaining. It is helpful to hear what you went through and how it happened. Itis interesting that you went off the meds because you were not doing well with the side effects and then you were able to remain off the meds and into remission! I am so so happy for you. I send wishes into the universe that continue to have good health!

    Dear Divine: Thank you so much for your kind share. I just read: Dying to Be Me. It was quite interesting - more of a near death experience journey that led a woman into realizing her "truths" and now is living them - and she believes this is what is keeping her healthy and alive. Very fascinating stuff! I love your outlook: Living with the disease, not dying from it. I couldn't agree more! I feel like I am in the most interesting phase/transition of wrapping my mind around these possibilities of a different outlook. I have also made MAJOR life changes these past 6 months that are all moving me towards a much less stressful and committed lifestyle, with many less "shoulds" and "need to" coming out of my mouth and my mind. Thank you for this important reminder! I am encouraged by the medical field's striving to continue giving us medications with less side effects and greater results!

    Dear Sunset: What is up my Philly sista??!! I always love my Philly peeps! Yes, GO EAGLES WOOOOOOOOOOOO!!!!!!!!!!! Thank you for saying hello. I am sorry to hear you had a small progression - that must've been a bummer. But I am glad it is SMALL. And happy for you that you have loved ones and travel to fill your life. I don't have kids but I have a very close family and support network of friends and I am travelling a LOT now. It is the best! Sunny beaches, waterfalls, beautiful hikes, take me away!

    Thank you all again. I will continue to work on this mental aspect. I am going to the LBBC Metastatic Breast Cancer Conference in a couple weeks. Will anyone of you be coming to this? I have never attended before but my parents did last year and felt it was so inspiring.

    Hugs to all!

    Brenda

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited April 2018

    I'll chime in too! I will be NED for 7 years, come this summer. I wish I could tell you how I have lived this long and done so well, but therein lies the problem. It is not known why a very small percentage of stage IV bc patients do not progress, nor is it known if they will progress at some point in time. I know this is not very comforting, but it is the current reality.

    Like you, I am ER+ and have been on arimidex and now letrozole. I have no intentions of ever stopping treatment, as I believe that taking these drugs has been part of why I remain NED. Those who are ER-, don't have the option of taking an aromatase inhibitor or Tamoxifen.

    I would never say that I have "recovered" from bc. There really is no such thing for stage IV but I am more than happy to settle for my NED status. What we really need to figure out is why this small number of people don't progress and live for many years after dx.

    Take good care.

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  • Heidihill
    Heidihill Member Posts: 5,476
    edited April 2018

    Love, that is  so cool that you are going to the LBBC conference and that your parents went last year. Keep us posted if you have a chance on what you learn.

    As far as recovery, depends on your definition. I feel fully recovered physically from BC and the treatment I had but it took years. I am 10 years NED now. I am in better physical shape currently than I have been most of my life before cancer. I should say I had other medical issues before (autoimmune) but they seem to be dormant along with the cancer. As far as those autoimmune issues, I was told they were not curable but treatable. With luck I could live up to age 40, I was told in my 20s. But now I'm 60. Somehow my body learned to cope, deal, regenerate. I did change my lifestyle after each new crisis, in particular, ramping up the exercise (after lapsing). This helped put me in remission for autoimmune issues and later, for cancer. Of course, I don't have proof in any case. But my theory is that exercise helps because it deals effectively with inflammation and strengthens the immune system. With respect to cancer, I forced myself to exercise daily right after I finished my first chemo infusion in 2007. I changed to a low carb Mediterranean diet with lots of extra virgin olive oil eight years ago. So it seems my body is an exceptional responder to exercise, olive oil and veggies. LOL.  Not everyone will respond the same way to these changes, but they're worth a try because it can improve other aspects of our health (mental and gut microbiome, for example).

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2018

    I became NED for almost 4 years and had started to believe that maybe I was one of the lucky ones where it wouldn't recur. I would caution you to be realistic if you get to NED. I lived life to the fullest, crossed things off of my living list, and tried to be in the moment at all times. When it did return though, I was pretty devastated even though I had always known NED was a temporary, fickle, friend because I had been hoping/thinking too much that I was going to be the exception. I am still doing very well with a very small amount of cancer at the almost 6 years point, but it helps if you can find that happy medium. I hope that you are an exceptional responder and never have to worry about it again.

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