5 years since my diagnosis...

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited October 2013

    Good question, I hope someone answers. I am just coming up on one year since diagnois- LOOOONG tough year. But I am sure hoping for many more.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    Just passed my five year mark since diagnosis-Sept. 16! Still here and NED!! It's like a big hug when I find these positive long-term forums!! Love to you all!

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  • sherry67
    sherry67 Member Posts: 556
    edited October 2013


    RunnerMom,


    Congrats to you..

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited October 2013


    Congratulations Runnermom!!! I love to hear about long-term survivors like you. SO happy for you.


    Are you running marathons now? Supercool!!


    Hugs!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    Thank you! I have run two full marathons and seven half-marathons since I was diagnosed. I was running for about 4 years prior to my diagnosis, and it was so important to me to be able to keep it up during treatment!

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  • sciencegal
    sciencegal Member Posts: 1,120
    edited October 2013


    Good for you!!!! I am so proud of you for "getting it back" after your treatment. I am slowly getting there but have a lot of joint and back pain, they say it might get better once I stop herceptin. One day at a time.


    I aspire to be one tenth as fit as you are.


    Thank you for inspiring all of us!

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  • lago
    lago Member Posts: 17,186
    edited October 2013


    FYI the Chicago Marathon was today. I was cheering 3 people on. one young lady is a 2x survivor of 2 different cancers (not breast), one had her mother pass when she was a teen of breast cancer and the 3rd also celebrating 5 years from these boards: Black Jack. She ran it last year too. Finished as usual.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    9+ years for me, still NED. I am still taking Arimidex, but no side effects from that.


    I've been traveling like crazy since my diagnosis. My first big trip was 6 wks after rads. a hiking tour in Tuscany. I'm doing the travel I put off before my diagnosis, when I was waiting for a "better" time. Since my wakeup call, I know the "best" time is now!


    My avatar photo was taken at Machu Picchu -- after we hiked the rigorous Inca Trail to get there!

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  • sherry67
    sherry67 Member Posts: 556
    edited October 2013


    Optimistic,


    Thanks for posting and Congrats to you..:)

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  • siisis
    siisis Member Posts: 15
    edited October 2013


    Dear Optimistic,


    Congratulations on your travel accomplishments! I was interested in the fact that you have continued to take arimidex beyond the standard five year period -- any particular reason for that?? Does your oncologist believe taking it for longer has benefits? Thanks.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    Yes, my oncologist feels that taking it longer is better. In the past, tamoxifen was usually ended at 5 years because earlier studies showed no particular improvement past 5 years, but there was no definitive similar situation with Arimidex. In other words, they had no research results that said staying on Arimidex longer didn't continue to help. And I understand that recent research has changed the attitude about Tamoxifen, too -- that it might still show anti-cancer effects for longer than 5 years.


    I do feel that my oncologist stays on top of BC research. He specializes in breast cancer, and goes to the BC symposium each year. At each visit (every 4 to 6 months) I ask him about new treatments that have come up for triple positives. But so far, he thinks I should just stay on the Arimidex since I'm OK on it, and have no recurrences, new cancers or metastases.


    My cancer journey came at the point where the Phase III trials on Herceptin showed outstanding results on early Her2+ cancer (early meaning not metastatic). Previously, it was only used for Her2+ patients with metastatic cancer. In fact, they ended that trial early because results were so stunning that they felt it was unfair & perhaps unethical to withhold it from the control group -- that everyone who was Her2+ should have Herceptin pretty early in the treatment. Mine was started right at the end of chemo. I'm firmly convinced that Herceptin if the reason I'm still here today.


    As long as I don't have any significant side effects, I will probably stay on Arimidex for at least another year. I will have a repeat bone density test next year -- the last one showed a slight decrease from previous -- and will probably quit if there's a significant loss. But then, I'm 66 years old & don't even show osteopenia yet!

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  • siisis
    siisis Member Posts: 15
    edited October 2013


    Thank you for this information, Optimistic -- December will mark my 5 years of arimidex -- and, although I am looking forward to the taking of one fewer pill, I am also hesitant to stop something that may well help stave off recurrence. I don't know if it is arimidex that is causing some of my lingering side effects -- fatigue, dry skin, absence of libido -- so, it's a toss-up between seeing if any of these troubling symptoms will end if I stop taking it or whether I am risking something much much worse if I stop taking it. My oncologist says no one knows. Have any of you out there experienced a better quality of life after stopping arimidex?? Thanks for any reply.

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  • fightinhrd123
    fightinhrd123 Member Posts: 633
    edited October 2013


    Im over five years since diagnosis now :)


    Laura

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  • septembersong
    septembersong Member Posts: 287
    edited October 2013


    Hi all,


    I'm due to finish five years on letrozole (Femara) January 1, and I've had a similar conversation with my oncologist. Back in July she seemed inclined to advise at least taking a break from this med because I have significant complaints (achy joints, low stamina) that may or may not be connected to it. I'm also anxious about the possibility of risking something far worse than achy joints and fatigue to find out if it's the letrozole.


    So I'll add my question to siisis's about Arimidex: anybody out there experience improved quality of life--or at least fewer symptoms--after stopping letrozole/Femara? Thanks in advance for sharing your experiences.

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  • Cowgirl13
    Cowgirl13 Member Posts: 1,936
    edited May 2014

    5 years ago today I was diagnosed...as you all were, I was in shock and couldn't imagine how I would do this.  Today I am happy with  my life.  It took me quite a while to really, really feel good but I can say that I feel the healthiest I have ever felt.  All through this journey there has been one horse or another in my life and that is what got me through.  I've had losses in the last 5 years (including my job) but I am happy where I am.  So for those of you who have been slower going in this recovery, it gets so much better.  Be patient....the best is still to come.

    Liz

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  • Footballnut
    Footballnut Member Posts: 742
    edited June 2014

    hi all. Just going through chemo treatment now - halfway done FEC now then on to taxotere/ herceptin for 3 rounds followed by herceptin for a year with tamoxifen. Premenopausal and 50 at diagnosis on feb of this year

    My MO feels that I have a very good outlook and I hope that he is right. He is the chief of oncology at my hospital and stays very close to developments in all types of cancer

    I hope to be joining many of you 5, 10, 15+ years down the road

    Iudt admit that the hardest thing for me is taking pills. I never had to take any pills and have to get my mind wrapped around this

    Congrats to all of you!!!!

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  • AlaskaAngel
    AlaskaAngel Member Posts: 1,836
    edited June 2014

    12 years out and NED, wishing you all the best!

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  • Footballnut
    Footballnut Member Posts: 742
    edited June 2014

    anyone here test posiyive for the BRCA gene as well?

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  • Gretta
    Gretta Member Posts: 70
    edited September 2014

    Have posted in a few spots.  Great to see girls doing so well 5 yrs out.  Wondering if there are any girls who had surgery first, chemo post with small margins that are doing well.  Any of you girls having perjeta with Herceptin once taxol is completed.  Keen to have the perjeta, but will have to pay independently. 

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  • Urentfro
    Urentfro Member Posts: 3
    edited March 2018

    Hi! I realize this is an old post, but so glad to see a 5 year survivor. I am stage 2, grade 3, her2 positive (diagnosed Oct 2017). Looking for all of the hope I can get, so THANK YOU for posting this! I hope you are doing great!

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  • Urentfro
    Urentfro Member Posts: 3
    edited July 2018

    hi! I was díagnosed in oct 2017 with stage IIa, grade 3, her2 positive. Like most of you, fearful of reoccurrence. Any other breasties still around?

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  • siisis
    siisis Member Posts: 15
    edited July 2018

    Hi!!

    Believe it or not, TODAY is my tenth anniversary of diagnosis!!!!! Haven't seen many postings on this site for a while. Alaska Angel, are you there? I'd love to hear from you.!


    siisis

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  • Girlstrong
    Girlstrong Member Posts: 438
    edited October 2018

    I am 5+ years out from diagnosis!!!! Living life and grateful every single day. Changed forever but can never forget. There is hope and a light at the end of the tunnel. Stay strong and keep fighting 💕❤️😘

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  • rozem
    rozem Member Posts: 1,375
    edited October 2018

    7 years for me...still on hormone therapy and will be for 8-10 years according to my onc

    Urentfro - lots of us over the 5 year hump, many don't come back to post and go on with their lives...this is a good thing! hang in there 

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  • Valntine75
    Valntine75 Member Posts: 5
    edited October 2018

    Hello all! Thank you for all the positivity! I needed it today. Cancer free after diagnosed 7/17. Chemo, lumpectomy, radiation and 1 year of herceptin. Now, Dr wants to add Neratinib. Anyone have this med? Much love to all of you!

    IDC left, er+/pr+, HER2+, 3 node

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  • moonchild64
    moonchild64 Member Posts: 49
    edited November 2018

    Ten year survivor here!!

    May we continue to not just survive, but THRIVE!

    Warmest regards to all bc sisters,

    Michelle

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  • VioletKali
    VioletKali Member Posts: 243
    edited January 2019

    Almost 5 years now!! Living well!

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  • CoastalXPat
    CoastalXPat Member Posts: 83
    edited January 2019

    Just had my "5th anniversary" mammo yesterday and all was good, am so happy and relieved & it feels like a graduation! It's a long journey but it keeps getting better with time and patience.

    Here are warmest wishes & hugs to everyone going through treatment now.

    Btw, noticed someone mentioned continuing vs stopping hormone therapy after 5 years. I've been on Tamoxifen and after a long discussion with my onc, I've decided to stop once I complete 5 years this summer. It's true that staying on to 10 years reduces risk, but my understanding is that the amount of risk reduction depends a lot on the risk you start with. We carefully considered the risk for my own case against the way I'm tolerating the side effects (not very well at all). Honestly, I can't wait to put away those bottles...

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