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Positive nodes with long term survival

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  • lexica
    lexica Member Posts: 138
    edited March 2020
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    Wonderful, KiwiMum - thanks for the inspiration!

  • lkc
    lkc Member Posts: 180
    edited March 2020
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    coming up on 15 years , Stage IIIC 12 out of 14 nodes pos, axillary and sentinel nodes completely engulfed in tumor and extraencapsulated, er/pr neg and Her2 pos, never did get clear surgical margins. Geesh!

    Livin Life Large with much gratitude.

  • kiascia
    kiascia Member Posts: 15
    edited March 2020
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    Hi congratulations ! You are an inspiration for me. May I ask how long were you on hormone blockers?

  • Fitz33
    Fitz33 Member Posts: 123
    edited March 2020
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    I’m going on 10 years and almost 9 years of Anastrazole. I had all nodes removed, 9 were cancerous, didn’t have a clear margin and the surgeon had to go back in for a second entry. My ONC still sees me about every 6 to 7 months since she considers me high risk, I have a mammo once a year. Had MRIs for I don’t know how long. Chemo was terrible for me and I was also part of a study but no one knew if it was the study drug and I ended up hospitalized after the 4th round, waited 2 months and then finished with a light chemo for the final 2. I thought rads were so easy after chemo but after 7 years I developed radiation induced pulmonary fibrosis and a year ago Radiation induced brachial plexus. The RIPF is well under control but the RIBP has taken me an entire year and I’ve now got back the use of my arm and hand. The hand will always be a little problem but that’s okay, I can write, stir, make a fist, wave, what more do I need? Stage III isn’t so bad after all!

  • shelly56
    shelly56 Member Posts: 142
    edited March 2020
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    Fitz33: Your story is so close to mine! Although I was not in a "study" group, chemo eventually took everything out of me and I ended up in the hospital for a week with a nasty infection. It delayed the last 3 treatments of Taxol (which was fine w/me). I also had a nodule on my right lung from radiation that the docs wanted me scanned for about 3 years and then took a biopsy to be sure it was stable.

    IKC: Keep living life LARGE !!

    PS: Everyone please take precautions during this corona virus outbreak! We survived BC and we can get through anything!

    Shelly

  • TxMom3
    TxMom3 Member Posts: 18
    edited April 2020
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    Thanks for sharing your stories. I am at the beginning of my journey and am encouraged. My kids are 24, 22 and 19 and I am hoping to meet my grandkids someday.

  • victoriasecret
    victoriasecret Member Posts: 37
    edited July 2020
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    11 years out read my stats...everyone has a path walk your own


    love n light Cheryl

  • KingdomSurvivor77
    KingdomSurvivor77 Member Posts: 2
    edited July 2020
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    Hey! It's so good to hear of your long survival, congratulations!! Are u currently on any immunotherapy?

  • KingdomSurvivor77
    KingdomSurvivor77 Member Posts: 2
    edited July 2020
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    Hey! It's so good to hear of your long survival, congratulations!! Are u currently on any immunotherapy?

  • lovujja
    lovujja Member Posts: 31
    edited July 2020
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    congratulations! my son was 3 and half and daughter was four and half and now they are 12 and 13 years old. I pray and wish I can see them going college. It will be 10 years for me in November.

  • kiwimum
    kiwimum Member Posts: 485
    edited February 2021
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    12 positive nodes and just reached my 10 year milestone! I come back once a year to post as I was so grateful for positive stories in the early days when I was diagnosed.

    I wish you all well

  • laughinggull
    laughinggull Member Posts: 511
    edited February 2021
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    Thanks kiwimum, so encouraging Heart

  • karen1956
    karen1956 Member Posts: 4,503
    edited February 2021
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    02/03/06, I heard those dreaded words - 15 years later I'm living life and have been blessed to see my children grow and reach many milestones. 8/12 positive nodes post surgery but nodes were also biopsied during my second set of biopsies. More and more of us are living longer and longer. To the next 15 years.

  • hopefour
    hopefour Member Posts: 104
    edited February 2021
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    This May is 10 years...so very grateful. I am still on hormone blockers as I am highly ER PR positive!

  • dutchiegirl
    dutchiegirl Member Posts: 76
    edited May 2021
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    My mother was diagnosed in 1998 with Stage 3c, hormone positive ILC. The tumour was 7 cm and she had 13 positive nodes. She is alive and well, and turned 80 last August - no recurrences, no metastases. I certainly had great support from her when I was going through my own cancer

  • windwalker27
    windwalker27 Member Posts: 54
    edited August 2022
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    Thank you so much, ladies, for sharing your stories. I read your posts the entire night. I am not even sure I am stage 3. I know lymph nodes are involved. I am having a CT scan today and bone scan tomorrow to rule out mets. You gave me hope

  • ktsmitty
    ktsmitty Member Posts: 15
    edited September 2022
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    I'm with you windwalker27. I had my surgery on 9/12. I was moved to from Grade 1 to Grade 2 and had one lymph node micromets positive. Start radiation in about a month. Reading these stories have been very helpful to me as I always believed that spreading to the lymph nodes was always considered Voodoo and bad for BC. I guess that's no longer the case anymore with the advancements in treatment. I feel a lot better now. Thank you all.

  • miloames
    miloames Member Posts: 3
    edited November 2022
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    It helps so much to hear these stories, thank you all! I had my double mastectomy on 11/16/22 and just got my pathology report this week. I'm kind of freaking out, as my tumor was so large (110mm), though the chemo made it look like 'swiss cheese' according to my surgeon. This was good news, as they did not think my type of cancer would respond much to chemo. It also helped in my lymph nodes. Still, it's scary. I need to go back in for outpatient surgery as a couple of the margins weren't clear, though my surgeon doesn't seem concerned. I feel pretty good about getting through this and radiation and starting drug therapy, but I've been told I'm at high risk for recurrence and that is what really scares me. With both my breasts gone (I had the right removed out of precaution) it seems like any recurrence would make me Stage IV. One day at a time, sorry to be a downer, I'm just struggling a bit this week. I know there are many hopeful stories out there and I appreciate hearing them. Thank you.

  • lucca06
    lucca06 Member Posts: 17
    edited November 2022
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    miloames mine was even bigger 120mm and exactly like you went to swiss cheese after chemo. I nearly had a heart attack when they told me the size as I had never heard of anyone having a tumour that size plus I had 9/18 lymph nodes that were also still positive to some level after chemo. I totally thought my time was up but I am here over 11 years later doing well and my children who were just coming up to 2 and 4 at the time are teenagers! I decided I had to stop thinking long term as it was just too scary so I made myself focus on taking one day at a time (it's not easy) and just said to myself 'I am healthy & cancer free today'. Time does make it easier and you stop thinking about what was and start being able to focus on enjoying life going foward. Take care.

  • threetree
    threetree Member Posts: 1,275
    edited November 2022
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    miloames - My tumor approached 6 cm and had even begun to ulcerate, but fortunately they did not find anything in the nodes or elsewhere in my body. I was given an IDC, Stage IIIB, ER/PR+ diagnosis in the fall of 2018. Neoadjuvant chemo shrunk the tumor, but not a whole lot - about 1 cm or so if I remember. I had a mastectomy and then did radiation, and then have been doing Letrozole since January of 2020. They described my situation as "locally advanced" and it was a big mess in it's left breast location, but apparently contained to just the breast. One margin had about 3mm of cancer remaining after the surgery, but it was felt that radiation would take care of it, so no further surgery. I felt real lucky about all that part, and I am still here 4 years later. So far there have been no signs of any recurrence or advancement in any way. I just remain miserable from the side effects of Letrozole.

    Like you, I know that fear well, that anything further would make me stage 4 (although I'm not sure that "just" a local recurrence would), and it is a very scary thought indeed. I've also got the feeling during the initial part of my treatment that many of the medical people kind of view a stage 3 diagnosis as being "really stage 4, but not showing up on the machines yet" sort of thing. That too, I found very disconcerting to say the least.

    That said, there are many on here who have had large tumors and lots of node involvement who are still here many, many years later, so there is good reason to just "take it as it comes" and be hopeful. I don't think a very serious Stage 3 diagnosis is necessarily a death sentence. It is serious to be sure and needs to be monitored closely, but again, there are many here who've gone on for years and years, and the initial diagnosis and treatment get further and further in the rear view mirror, and they live fairly full lives. I'm taking it one day and a time and holding out for continued NED status. I feel very lucky at this point, continue to count my blessings, and continue to hold out hope for the future. You too, have good reason to hope.

  • miloames
    miloames Member Posts: 3
    edited November 2022
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    Thank you lucca06 and threetree for the encouragement, it means a lot to me. I was spiralling down a Google hole and finally realized I had to stop. I'm feeling a bit better. Trying to focus on next steps and the fact that I'm actually feeling the best I have physically in months, despite being just 2 weeks out from the mastectomy. That's something to be thankful for 🙂

  • kotchaj
    kotchaj Member Posts: 209
    edited November 2022
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    Thank you all for posting. It can be pretty rough at times. I get down on occasion and try really hard to not focus on the negative. I had 20/21 nodes that were positive, BUT I had one that it hadn't gotten to yet, so that is a win. Look at it how you may, but in my mind, it didn't go as far as it could have.

    My tumor didn't respond favorably to chemo. Unless you count growing as positive:-) That really threw me for a while, too and I spent a lot of poor me time. I focus on the next day too, not looking at 20 years from now.

    Here's to all of us being here for years to come to cheer on everyone else! we can do this!

  • lanna1
    lanna1 Member Posts: 16
    edited December 2022
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    Dear, I've just heard of one woman that had 35 of 35 nodes infected five years ago, and she is withouth reccurence and without meths, doing well. There was medical seminar and she was in audience, talking that to doctor who was talking on seminar.  The doktor told that many woman with many infected lymph nodes live 20-30 years and in the other words are cured, and than she stood up and told her story. Sending love.

  • windwalker27
    windwalker27 Member Posts: 54
    edited December 2022
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    Thank you for posting. It gets difficult mentally from time to time

  • hopefour
    hopefour Member Posts: 104
    edited December 2022
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    I am 11 1/2 years out and it still can get hard mentally about reoccurrence. My greatest gift in this fight is eating anti cancer and exercising, they both help me mentally in the daily fight to stay positive and hopeful. I also still take daily my anti hormone pill. Merry Christmas!!! Hopefou

  • windwalker27
    windwalker27 Member Posts: 54
    edited December 2022
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    Thank you for posting. It’s a big deal for us at earlier treatment and diagnosis steps. Can you share what you eat and if there are any supplements you are taking? Thank you

  • hopefour
    hopefour Member Posts: 104
    edited January 2023
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    yes, I would encourage you to read as there’s so many different approaches to a healthy anti-cancer lifestyle. My personal choice was to do a low inflammation diet as well building my immune system. I juice, broccoli, celery, beets, and many other vegetables every day. I don’t eat dairy or meat only salmon. I do have eggs in recipes and occasionally scrambled. I use almond milk, do golden milk drink every night before bed. Again there is so much info out there and I know how very overwhelming it can all be. But what I do has worked for me very well and I enjoy it. I lost weight and can handle the anti hormone pill well ( 11 years so far). I walk 3 miles briskly every day and do a sauna four times a week. I’d love to say I run but I don’t sadly. I do need to increase my exercise!

    I hope this helps a little bit and know that you will know what works for you and something you can stick with to give you peace, hope and lots of joy in living your best life!

    Lots of hope!!

    Hopefour

  • kiwimum
    kiwimum Member Posts: 485
    edited February 2023
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    12 positive notes and am now 12 years out. Coming back to this website to spread hope. This is where I found comfort and made lifelong friends.

    My daughters were young children and most recently turned 18 and 21 years. On Friday my youngest leaves home for College and we will be empty nesters. There will be lots of tears from me but on to the next stage.

    I am still under regular 12-month checkups with my oncologist and taking daily Examestane due to my lymph node involvement.

    Wishing you all the best x

  • francesca30
    francesca30 Member Posts: 63
    edited February 2023
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    Congratulations Kiwimum! I remember reaching out to you when I was newly diagnosed and you continue to give me so much hope. Cheers to many more years of good health. I’m turning 4 years from diagnosis this month, all good so far

  • yatcomw
    yatcomw Member Posts: 57
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    I had an 8cm tumor with at least 17 nodes positive…..two bursting out with cancer…..IDC/ILC with a little IBC and in my skin. It was a tough diagnosis to swallow….my children were in elementary school.

    I am 19 1/2 years out….. will be sure to post 20 years in May next year.

    My children are all grown….finished college and all three working on their Masters. One is married and had a child 10 weeks ago….so I'm now a Gigi. Second daughter getting married in the spring.

    I would never have believed I would be here to see all of this in those dark early days.

    My advice is to assume you will be too…..plan things in the future……buy the shoes!!

    Jacqueline