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Stage III Cancer Survivors ...Five + Years and Out.

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Comments

  • sam2u
    sam2u Member Posts: 43
    edited October 2019

    Wish we had a "love" button---because I love your attitude and post Lottanodes!!

  • frmthahart
    frmthahart Member Posts: 60
    edited October 2019

    Congrats, Lottanodes! That is wonderful and very inspiring to see. I just hit my 1 year and still struggle with it all. I still find myself looking for stories like yours to pull me through the dark times that pop up. Thank you for posting :)

  • denise-g
    denise-g Member Posts: 353
    edited October 2019

    I always like to come back and post on my cancerversary to bring hope to others.

    Today marks 8 years since my diagnosis of stage 3 her 2 positive breast cancer. I had nine positive nodes and my cancer was extremely aggressive.

    I had a heart attack during AC chemo, permanent heart damage, became allergic to gluten and wheat, and a host of other stuff. I was only able to take 3 months of the miracle drug Herceptin because of my heart issues. That absolutely terrified me for a good 7 years.

    Never in my wildest dreams did I think I would be here 8 years later and feeling so good. I swear I feel better every year and have for eight solid years. Just had my all-clear check up last month.

    There continues to be hope!!



  • Mymamma
    Mymamma Member Posts: 1
    edited October 2019

    what a great post. My mom had pe and dvt with chemo and is now coming up on mastectomy for ilc on one breast with multiplenodes after not getting clear margins and because of xarelto cannot have reconstruction and now they won't consider doing bilateral mastectomy even though the other breast had idc and so on and today we went out wig shopping for a radiation wig and someone told her to embrace it- I nearly spit 🔥 fire

  • berries
    berries Member Posts: 80
    edited October 2019

    Sportymom, did you end up getting a ALND? I'm torn between getting one or just doing full axilla radiation... would love to hear how you decided.

  • Sportymom
    Sportymom Member Posts: 40
    edited October 2019

    I still have to decide. In my case they thought going forward with chemo was important so I did that. Then my MO wrote surgery ? as next steps as he is not sure I will need it. However, I am very distrustful if my body right now considering the shock of having all four SN positive when they clinically were fine. I am meeting with both my BS and MO this Friday and I will talk about ALND with my BS seriously. I will probably have it before radiation even with the lymphadema risk as I cannot trust anything at this moment. If there were a test to see if I had cancer in the nodes I would do it but there is no such test

  • cassarm
    cassarm Member Posts: 1
    edited October 2019

    Nancy,

    If you don't mind me asking how large was your tumor? I am going through Chemo Currently. I have 11 Taxol left. It makes me feel good to see posts like yours.

    Cassie

  • berries
    berries Member Posts: 80
    edited October 2019

    Sorry Wendy, I didn't see this reply as I just PM'd you!

    I am going through with chemo next week and feel the same way about "not trusting anything" -- I emailed my BS (who isn't convinced I need an ALND either) and asked him about doing it post-chemo. The AMROS trial only followed those with up to 3 positive lymph nodes, but my RO said that while an ALND is "standard," standard is not always best... So torn!

    Please keep us posted! x

  • ALovingDaughter
    ALovingDaughter Member Posts: 11
    edited October 2019

    hi! Are you in complete remission right now

  • nancyd
    nancyd Member Posts: 557
    edited October 2019

    Cassarm,

    I really don't know how large it was. I had neoadjuvant chemo, so it was reduced before surgery. There's no mention of size on my reports, that I can see. I believe from the first PET/CT scan, they said something like 5cm, but that's just going on what a remember from eleven years ago.

  • newnorm
    newnorm Member Posts: 54
    edited October 2019

    Great post Lottanodes. Love it. Thanks for sharing. Couldn’t agree more about trying to explain misconceptions

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited October 2019

    Eight years ago today, October 20, my doctor called with the news that the biopsy was positive. Four months of chemo, nine surgeries, thirty-seven radiation treatments, and seven (so far) years of letrozole treatment. Quite a rodeo.

    My eight-year cancerversary, and I'm NED. Thank you God!

  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
    edited October 2019

    Sbelizabeth: Thanks for keep posting here. It is wonderful! You are one of the people who gave me some hope when I was diagnosed a year ago. May God give you plenty of healthy years!

  • countca04
    countca04 Member Posts: 33
    edited October 2019

    My one anniversary is coming up.....what a year!!! I'm exhausted and have good and bad days.

    Chemo AC+T done

    Herceptin & Perjetta done

    Mastectomy right side done

    radiation whole breast done

    on Letrozole for 5 years

    Now doing Kadclya for 14 treatments...finishing end of June 2020


    It's been a hectic year! Sorry I don't feel like celebrating the one year anniversary where my life changed! No it's not for the better, I was already grateful and happy for my life and was looking forward to the retirement years after working so many years to ensure a good happy retirement.


    I did celebrate....end of chemo.....end of 30 rounds of radiation.....

    Good luck to everyone! We are strong and we may be brave but none of us ever wanted to have to prove this to ourselves....here we are!! Sending hugs and love ....


  • Xxxxxxxxxxxxxxx
    Xxxxxxxxxxxxxxx Member Posts: 551
    edited October 2019

    I'm right now in my first bone scan after treatment. I have already passed the mark of one year since my diagnosis but I think I can only celebrate my first anniversary when my studies become clear. Crossed fingers!

  • NoWhyToIt
    NoWhyToIt Member Posts: 15
    edited October 2019

    Hi I am in the downtown NY area and wondering if any other Stage 3 survivors ( I am 5 years out) would like to start a walking group to tackle long walks (5 miles).

  • kayarose
    kayarose Member Posts: 35
    edited October 2019

    I hit 5 years on Sept 4th. I'm feeling good and trying to exercise and keep my weight stable (not easy on Arimidex). I have lots of aches and pains which I'm not sure if they're from the Arimidex or just old age - I turned 70 this year. Anyway, life is different but good. Unfortunately, I'm scheduled for an MRI this week. I've been having pain and swelling under my arm, cancer side, and my doctor wants to take a look-see just to be safe. Having ILC and knowing it usually recurs later rather than sooner, I am a bit nervous.

    I guess the anxiety, pain and all the other changes that make up our new normal is something we all live with the rest of our lives. But for me truly appreciating and enjoying the good days more than makes up for the bad days.

    I'm always thankful I found this great website. I still visit daily and am always amazed at the strength and spirit of the members. Thanks to all of you. You have been my lifeline.

  • ssinuk
    ssinuk Member Posts: 63
    edited October 2019

    So here I am, with a clean PET scan today, 5 years out and officially NED. When I was first diagnosed I felt these threads were magic stories of the blessed and it could never be me: I was sure I'd be dead in a year. Even so these stories gave me hope and I am hugely grateful.
    Now I see it differently. The sobering truth is that with all the treatment we get, our risk of recurrence is pushed back on the timeline and at five years the danger zone still lies ahead for many of us. But there is a positive - and I wish I'd known it back in those first dark days. Given the treatments, the great majority of us even at stage 3 will get on to this five year thread - don't just hope, expect it!
    You will NOT be dead within a year. And on the other side of the shit show that is treatment you will live and laugh and love and be you again. There will be fear and darkness and tears but some of the life you will get back will be among the most precious and wonderful and meaningful you have ever lived, because of having been to those dark places. Even if it's simply a moment of holding your kid till they fall asleep, as I have just done (4 at my DX, now a glorious 10). At five years we still face an uncertain future - but so does the rest of the human race. Those five years have for m contained the best as well as the worst of times. Bring on whatever's next. And PS I am sitting here with a glass of wine having piled on 3 stone since chemo so let yourself off that stuff too!! Here's to all of you - with heartfelt thanks for your many kindnesses to me.


    Sent from my iPhone

  • manc
    manc Member Posts: 28
    edited October 2019

    Hi thanks for this I'm just at three years but I still struggle and that weekend glass of wine ? I still feel guilty and worry it's hard. Wishing you many more happy years xxx

  • ssinuk
    ssinuk Member Posts: 63
    edited October 2019

    Thank you. As for wine - I wouldn’t be a heavy drinker to be sure but I don’t sweat the odd glass. Whatever happens won’t be about that. There are ‘perfect’ cancer patients who recur and others who do everything wrong and don’t. It is hard. And It’s a crap shoot. To which the odd glad of wine is a perfect accompaniment! Many more years to you too! Look forward to your post on this thread - it will be here before you know it

  • traveltext
    traveltext Member Posts: 1,055
    edited October 2019

    Celebrating five years post treatment for an aggressive Stage 3B diagnosis that meant kitchen sink treatment. Also now three years post treatment for prostate cancer. I always marvel that we live in an amazing medical era. Contrast this time to 55 years ago when my mum died aged 40 after a radical mx and supercharged rads. Nothing else was available then. Best wishes to all here.

  • lexica
    lexica Member Posts: 138
    edited October 2019

    Thank you and congrats SS and Traveltext!

  • wintersocks
    wintersocks Member Posts: 434
    edited October 2019

    SS and Traveltext

    Wonderful news!


  • preludesing
    preludesing Member Posts: 64
    edited November 2019

    I adore this thread.m 💞💞. 2 years and 4 months for me. Busy living 🎉⚘. Love all of you ladies!

  • 7of9
    7of9 Member Posts: 474
    edited November 2019

    SS I love your attitude. We were just at Disney in Orlando a week and a 1/2 ago and I was swimming with my son thinking to myself what am absolutely glorious perfect day I never thought I'd be this happy again. I'm only just about four years out from a recurrence 3 years after original diagnosis. But it may be time for those diagnosed with stage 3 to worry less and know that like you said on the other side of the shit show there are some bright beautiful sunny afternoons just waiting for you!!!

    Lotta nodes thank you for reaching out to me early on in my treatment thank you thank you!! It meant so much and here I am chasing after you keep going girl!!!

  • Aseye
    Aseye Member Posts: 21
    edited November 2019

    I have also been diagnosed with stage 3 20/21 positive lymph nodes very aggressive cancer. I'm about to start radiation done with 8 cycles of chemo. I will be interested in knowing exactly what you did post treatment

  • Euphoriaa
    Euphoriaa Member Posts: 152
    edited November 2019

    Aseye: I wish you luck with your rads! I just finished mine. I'm in tamoxifen now. I hope we can both post here in 5 years! Hugs

  • castigame
    castigame Member Posts: 336
    edited November 2019

    Almost three yrs from DX. Will be two yrs on Arimidex any day now.

  • newnorm
    newnorm Member Posts: 54
    edited November 2019

    Congratulations SSinUK and thanks for posting here. We all love to read posts like this. I'm looking forward to being able to do the same as you in a few years time. Coming up to my 3 year cancerversary, I still remember those dark early days. Now my experience is proving to be helpful as I support my step daughter through her own horrid journey after being diagnosed with bilateral BC only 8 weeks ago. Who knew then that I'd be playing a support role within my own family so soon. But as you said SSinUK these boards were and still are so helpful to us all. Cheers to your next five years and looking forward to reading your post on the ten year board.

  • kmur
    kmur Member Posts: 849
    edited November 2019

    Hi to all of our stage 3ers . I don’t jump on much anymore. Except ... this time of year. I will not be joining you in the future though. I am very happy to say I will graduate to the 10 plus year club. This thread saved me from myself. Wish I could say I was strong and positive when 42 and faced with stage three aggressive breast cancer. I still don’t know what strong looks like. I was in some kind of fog moving from one appointment to the next - thinking - I will be lucky to see 5 years .in fact , I think I was too scared to say I would beat it or I’ve got this as it might hear me say that and then it would be all over. Anyway... , you stage 3ers , and your stories saved me . Thank you to all who share here. So happy for each of you who celebrate your 5 years and beyond. Just know many of us stage 3ers are still here and doing really well. Ten years later still keeping track of our breast cancer.org girls from our original group. So happy to have found them. Finding breast cancer.org brought laughter and joy where fear lived. Best wishes and love to you all. I will see you on the ten year thread

    Kmur ( Kim )