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Stage III Cancer Survivors...15+ years and out

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Comments

  • leesad
    leesad Member Posts: 100
    edited January 2018
    Thank you for sharing Loya!!! I love reading posts such as yours.
  • wallan
    wallan Member Posts: 192
    edited January 2018

    My friend 's GP told her that 20 years ago she had stage 4 BC (after it recurred) and was told to get her affairs in order. She took time off from her medical practice, had chemo, and then in 3 years time returned to work. She has been NED ever since and works full time as a GP.

    Another woman at the cancer clinic works at the coffee shop there - she also had stage 4 BC 20 years ago and is now NED.

    14 years ago, I had stage 3a BC with 7 cm tumor (IDC) and 2 positive nodes with extracapsular extension, grade 3, ER+ PR+ and her2-. Had mastectomy, chemo, rads, hormone therapy, ovaries and uterus removed. I was told by my MO then that I would likely recur within 2 years. I have not recurred.

    I was 41 at the time with a 7 year old son. My son is now 21. I saw him graduated high school, college and he now has a great job.

    Even though I had a new primary in other breast dx last Jan, it was small and node negative. I had mastectomy and am on arimidex. It was er+, weakly PR+ and her2-. I plan on living until I am a 100. I am pretty feisty!

    wallan

  • lkc
    lkc Member Posts: 182
    edited January 2018

    Hi Wallan. I remember you well from the old days. So happy for you. I am approaching 13 years and grateful every day. Life is a beautiful thing and so much more treasured after these experiences!


  • wallan
    wallan Member Posts: 192
    edited January 2018

    Hi lkc:

    I remember you too... its wonderful that we are here alive and kicking!

    Nice to see you on here.

    wallan

  • dancingelizabeth
    dancingelizabeth Member Posts: 305
    edited January 2018

    StephanieD and Wallan - I can't tell you how much your posts mean to me and others in similar situations as me...

    Mine was also pretty much bad everything - as you can see by the stats below. I also had extranodular extension with cancer practically bursting out of one of my nodes and a HIGH K67.

    I had several second opinions and each time the MOs kept going on about how "high risk" I am for mets. That was rough...

    Hope is hard to find with my stats and hearing your experiences - is like gold..

  • wallan
    wallan Member Posts: 192
    edited January 2018

    Hey there:

    I am happy to share my experience. If it benefits even one person, I feel like my whole horror show had purpose.

    Scared67: I can understand the devastation and fear that arises when oncologists highlight that you are highrisk and undermine your hope. I remember all too well my oncologist telling me that she didn't think the chemo would work and that I would be stage 4 very soon, within 2 years. I would ask her why would she say that and she said I had all the bad indications and I was in denial. I was quite distraught. My radiation oncologist though told me I had very treatable, garden-variety BC and he felt it would be eradicated. That gave me relief.

    For this second primary, I did go to another medical oncologist because I did not want the doom and gloom of the first one. My journey this time has been positive and hopeful.

    I hope that you get solace out of this.

    wallan

  • dancingelizabeth
    dancingelizabeth Member Posts: 305
    edited January 2018

    THANK-YOU - Stephanie and Wallen....for the precious jewels of good advice...I do get very much needed solace out of your posts.

    Wallan - I can NOT believe your oncologist told you that. OMG. How can a doctor *say*!?!!? WTF. That would have made me want to stay under the covers of my bed and never come out. I'm glad you listened to your radiation oncologist. I will think about his words - as well - as your dx stats are very similar to mine....

  • wallan
    wallan Member Posts: 192
    edited January 2018

    Scared67:

    Hugs to you. There are alot of positive stories.

    wallan

  • jo6359
    jo6359 Member Posts: 1,993
    edited January 2018

    I just spoke to a woman Stage 3 Grade 2 Multifocal tumors plus lymph node invovement. BMX and reconstruction. No reoccurrences. She received one year of chemotherapy using three meds. 30 years later she is living her life to the fullest.

  • 7of9
    7of9 Member Posts: 474
    edited January 2018


    On the subject of oncologist versus radiology oncologist… I have also noticed too that the radiology oncologists I've worked with (three of them) seem to be much more optimistic than just the standard oncologist. Granted my oncologist is the head of his department and he's probably 60 if hes a day. The radiology oncologist are younger and perhaps on more of the cutting edge of the technology and familiar with only the newer stats? My primary radiology oncologist had a baby last year so I missed her for two checkups. There was a younger guy I swear he was just wet behind the ears right out of med school and all he did was smile at me and just grin. It was kind of weird but I realize he was so fascinated and happy with my case that even though I had a recurrence we caught it before it spread and he said now you're cured and we were able to treat it and stop it. I was like what the hell? Here I been living on the edge since a recurrence with 10 out of 14 nodes but I'm two years out and NED with no signs of it anyplace else after several CAT scans so I'm hoping I fall into the 3C CCC category one doctor referred to me as metastatic but the others had said no we're not gonna bother restaging you and that there's no signs of any place else just go live your life ...whatever ...OK!

    I would like to add that after discussing with the counselor at my last Zometa a treatment I did not know that it is known to drop your risk of recurrence of hormone positive cancer by almost 30% wow !

  • Roaming_Star
    Roaming_Star Member Posts: 66
    edited January 2018

    Dr. Bernard Bihari, low dose naltrexone, cancer and the immune system

    Hi everyone, I love this forum! Brings me hope whenever I get an update on my email :-) Keep posting ladies on your stories of triumph!

    I am working with a Naturopathic oncologist and he has put me on low dose naltrexone. When I was doing research on it I came across this article. I found it very interesting and it also brought together the link btw cancer and stress as i was diagnosed after a long period of prolonged stress. Hopefully you can open this link. I wish we could attach pdf files to these posts. If it can't be opened then message me and we can exchange emails or something.

  • manc
    manc Member Posts: 28
    edited January 2018

    hi 7of9 what a wonderful post. I'm Grade 3 in 2 nodes and terrified of recurrence you have given me a lot of hope that newer stats are more favourable. Can I ask by the Zometa is that the six monthly infusion which may prevent bone mets. Many thanks x

  • mpetago
    mpetago Member Posts: 54
    edited February 2018

    I'm almost here! Today is 14 years since diagnosis and I'm doing fine! Turning 50 this year, and I was 35 when diagnosed. I'll be back next year to post again 😊


  • mpetago
    mpetago Member Posts: 54
    edited February 2018

    No, I only took tamoxifen for 5 years, 2005-2010. Still have my ovaries, and only taking high potency vitamin D.

    Oops lol and thank you Stephanie, Happy Sunday to you as well!!

  • beauz
    beauz Member Posts: 113
    edited February 2018

    Hi mpatego, well done for 14 years. Thank you for bringing me hope.

  • iamelaine
    iamelaine Member Posts: 40
    edited February 2018

    Mpatego, congratulations on the 14 years! I am right behind you. I notice your stats say you received taxotere, cytoxin and Adriamycin. I did as well. Can you share how that was given to you? I received TAC x 6. The reason I am curious is that it was just out of trials at the time I received it. I do still see they are using it for stage 3 in some cases.

  • sugarplum
    sugarplum Member Posts: 75
    edited February 2018

    Hi Elaine - I too received TACX6 - was also offered the standard 4XAC + 4XT but I decided that 6 infusions would be less traumatic than getting 8! Have never regretted my decision...

    Julie

  • denise-g
    denise-g Member Posts: 353
    edited February 2018

    mpetago - thanks for the encouragement and congratulations!

  • iamelaine
    iamelaine Member Posts: 40
    edited February 2018

    Julie, when I was diagnosed my onc didn't go over the other chemo options at the time. He just told me he was hitting me with this new protocol out of UCLA. He had his reasons for wanting me to have it and went into great detail on how this protocol attacked the cancer cells at the three different stages of the cell life. Like you, I never regretted it. It was tough but so worth it.

  • aleelight
    aleelight Member Posts: 1
    edited February 2018

    Thank you to all who post these encouraging accounts. I really needed it today! Diagnosed 7/17, did chemo, mastectomy, about to start radiation. I’ve managed to remain optimistic until recently. Feel like I’m wearing down emotionally, so your stories help tremendously

  • Wonderwoman386
    Wonderwoman386 Member Posts: 12
    edited February 2018

    Alee- I hit the wall round 7 of chemo, you lasted longer than me! I visit this feed often, it really does help. I can’t wait until we can post our survivor stories, I’ve got a doozy

  • dancingelizabeth
    dancingelizabeth Member Posts: 305
    edited February 2018

    These stories really help!! I'm coming up on my 2 year cancer-anniversary...dx with ALL the bad stuff!!! (I can't believe I'm still alive!!)

  • sbelizabeth
    sbelizabeth Member Posts: 956
    edited February 2018

    Dancingelizabeth, I'm coming up to seven years out in September, and I had more nodes removed, and more that were positive for cancer, than you. I'm hanging in there, still working full time, still loving life. Still NED. Don't lose HOPE.

  • Roaming_Star
    Roaming_Star Member Posts: 66
    edited February 2018

    IamElaine My MO didn't go over chemo options either. Wish he would have cause it didn't do anything for my axilla cancer and the cancer spread through my lymphvascular axilla area including another tumour outside of lymphnodes. My allred score is 8/8 for both ER & PO - why he thought chemo would have been helpful is beyond me. We have no access to PET/CT scans here in British Columbia for regular diagnostic procedures like breast cancer....

    This is why I love this thread so much. I need hope that women like me can live WELL and longer than a decade....

  • mpetago
    mpetago Member Posts: 54
    edited February 2018

    Hi Elaine,

    I received the 'old school' regimen, much to my dismay at the time. 4 AC given once every three weeks, followed by 12 taxotere given once a week for three weeks, then one week off. Oncologist said insurance wouldn't pay for neulasta, so dose dense wasn't an option for me.

  • iamelaine
    iamelaine Member Posts: 40
    edited February 2018

    Mpetago, thanks for the reply! You are doing amazingly well so your treatment plan must have been just what the doctored ordered. :) I was able to get the Neulasta shot. Without it, there is no way I could have done the regimen I did. BTW, I hated that shot almost as much as I hated those dang steroids!

  • iamelaine
    iamelaine Member Posts: 40
    edited March 2018

    I was diagnosed exactly 14 years ago today. I am so thankful for each day I have had.

    For any newbies who have a crappy diagnosis, believe there is hope and live that hope. Don't let the cancer win by allowing it to freeze you in fear.

    Something my onc said to me on my first meeting with him has always stuck with me.

    "Don't be one of those people who stops living while they are still alive".


  • Roaming_Star
    Roaming_Star Member Posts: 66
    edited March 2018

    IAmElaine - Awesome! Thank you for your words of encouragement:-) Thank you for posting your anniversary date for us!

  • manc
    manc Member Posts: 28
    edited March 2018

    Hi IAmElaine I love your oncologist quote emotionally I've had the hardest time I'm going to try to follow this philosophy. Did you find the recurrence fears a challenge at times .

  • ck55
    ck55 Member Posts: 28
    edited March 2018

    Congratulations IAmElaine! What a wonderfully encouraging post for everyone on this journey.

    So very happy for you!! 🌹

    Cyn

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