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Long term survivor examples.

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  • kayrem
    kayrem Member Posts: 24
    edited July 2021
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    Hi. Just dropped in to say I passed my 10 year since diagnosis on June 30. I was diagnosed at the age of 46 with stage 3, 4 nodes positive, triple negative breast cancer. After a lumpectomy and treatment found out I had a Brca 1 mutation so I had a some prophylactic surgeries and am doing well. I saw my oldest graduate grade 12 and have done a lot of great living with purpose! Take care everyone and stay safe

  • cookie54
    cookie54 Member Posts: 663
    edited July 2021
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    Woohoo Kayrem!!!!! So happy to hear from a fellow TNBC sister who is thriving. It gives me great hope as I am restarting my clock after a recurrence. Thank you for popping in and giving us all the hope we need. Congrats to you and happy to hear you are living life with a purpose. Be well.

  • kayak2
    kayak2 Member Posts: 9,024
    edited July 2021
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    Another 10 year survivor / thriver here. There are SO MANY of us! We just don't post any more. Some pop in here on a yearly basis just to say hi. Hang in there. One day it will be you posting your long term stats!

  • tibet1
    tibet1 Member Posts: 5
    edited October 2021
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    hi Yellowlady, what kind of treatment did you get? I read you are doing Mamograph each year? Did you have lumpectomy? thanks,

  • fiercer
    fiercer Member Posts: 15
    edited November 2021
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    9 years out! Keep pushing forward

  • maryjv
    maryjv Member Posts: 269
    edited November 2021
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    thank you Fiercer

  • SJSmith52
    SJSmith52 Member Posts: 6
    edited November 2021
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    In 6 months I will be a 5 year TNBC survivor. My cancer was stage 1, no lymph node involvement. I received radiation but no chemo or pills. I worry that the lack of more treatment increases my chance of recurrence. I am 69 years old, no family history of cancer

  • yellowdoglady
    yellowdoglady Member Posts: 52
    edited November 2021
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    Hi tibet1,

    Today I am 13 years from TNBC diagnosis. Yay! I had a lumpectomy and axillary lymph node dissection. Four of the fourteen lymph nodes were affected, so the dx was Stage IIB. I did six rounds (18 weeks) of chemotherapy with Taxotare and Cytoxin, then daily radiation for seven weeks. Yes, a mammogram every year, and more often if there are any changes detected. And Prolia for bone density. So far, all is well.

    I recently learned from my aunt that we do in fact have a family history of BC. My great great grandmother had BC in the 1920s. She was treated with radium, and lived into her 80s. I had no idea.

  • breastcancerpartner
    breastcancerpartner Member Posts: 26
    edited February 2023
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    Hi Luah

    I've been looking for anyone who has been on the research program for exercise during tnbc treatment. I've read multiple articles which suggest that exercise before, during and after treatment can reduce the risk of recurrence.

    And we all want to do whatever is in our hands to give ourselves the best shot.

    Could you provide some insight into what your exercise and activity regime entailed while on the program? Thank you

  • mountainmia
    mountainmia Member Posts: 857
    edited February 2023
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    Hi cancerpartner. I'm not sure who you're talking to, but the most recent post prior to yours was a year and a half ago. Likely they aren't going to see it.

    As to exercise, yes, staying active is important, if only because it's important all the time anyway. It helps with digestion, sleep, mood, etc. And being more physically fit in general helps with resilience for recovery. A member called santabarbarian used to write about exercise with vigorous muscle use, like weight/resistance training, being helpful in the actual treatment process. I don't know what evidence she had on that, but she did cite sources at the time.

    What activities does your wife like to do? Does she play tennis or pickleball? Hike, run on the treadmill, play in the yard with kids or pets, do gardening? Whatever she normally likes to do, she should keep doing it to the extent her energy levels allow. You can be her partner in fun, but please don't be a taskmaster, pushing her to do things she doesn't want. Cancer already has removed a lot of control from her life (and yours, too, I know!) so please let her be in control of decisions on her activities.

    Thanks for your care and attention to her health and needs. Is she at all interested in joining here? You for sure need support that is hard to find in the real world, and so does she. We're here for you both.

  • nume
    nume Member Posts: 81
    edited February 2023
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    Hi breastcancerpartner!

    I perfectly understand your wish to find out fast what can be done. I did exactly the same, in a panic, after being diagnosed. This site was a real help, there is so much information.

    Of course it`s good to be in healthy when starting treatment but I think during treatment you shouldn`t change much. I am in Europe and on my ``Medical letter``(given after each chemo, specifying my blood analysis and if anything went wrong during treatment), at the end is a recommendation saying: do not exercise too much, stay away from cold and sun, avoid crowded places.

    As long as I know (saw a conference about breast cancer and physical activities) triple negative, unlike other types of breast cancer, is not particularly linked to exercise. I received a lot of good advice about exercise, supplements etc on a topic called Not PCR And Still Lving Happy Lves from kayrem(page 5-6).

    I also found uplifting advice on youtube ``Surviving My Cancer``channel by @survivingmycancer3697

    XO

  • breastcancerpartner
    breastcancerpartner Member Posts: 26
    edited February 2023
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    Between the two of us, I'm more of the exercise freak. But my wife had just joined the gym a couple of weeks before her diagnosis, because she was absolutely terrified of getting diabetes. More than anything else in the world, she loves running after her little niece.

    We've spoken about physical activity, and we've decided that we'll start cycling and going on walks together, as per her comfort. We live in a small state, with a lot of greenery. It'll be time we get to spend with each other.

    Unfortunately, it'll have to wait a bit because we've had to temporarily move to a metro for treatment.




  • breastcancerpartner
    breastcancerpartner Member Posts: 26
    edited February 2023
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    Just yesterday I brought up the topic of exercise to help prevent recurrence with her MO. She said it's beneficial in hormone positive, not in TNBC.

    However, i asked because I came across this article about a study in Tel Aviv.

    Posting the link here. Would really like to think there's something we can actively do to help.

    https://www.telegraph.co.uk/christmas/2022/12/08/fast-blast-exercise-could-help-ward-metastatic-cancer/#:~:text=It found high-intensity aerobic,people who did not exercise

  • cookie54
    cookie54 Member Posts: 663
    edited February 2023
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    It's always a great idea to exercise for overall health and I find it a great way to unwind for my mental health. I have exercised my entire life because I always enjoyed it! I think it's a great idea for you and your wife to exercise together.

    My thoughts are I'm not sure if it is truly making or made a difference in my outcome especially when you look at my history. I realized I can't control everything that's going on in my body. There were many days I thought maybe if I ate less sugar, exercised more and not drink that glass of wine that I would control this. We all try to do everything possible to help our situations and I really hope it does help. Do it because it's a benefit for overall health and to spend time together! Either way it's a great routine to start.

    Your wife is very fortunate to have you as her advocate be sure to take care of yourself also. Glad you are finding support here!

  • nume
    nume Member Posts: 81
    edited February 2023
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    Hi all!

    breastcabcerpartner, I had chemo in the same room(we were always 2 in each room), with a fencing olimpic. She told me all her life she slept enough(not having enough melatonin is a problem with triple negative), she had training/work out all her life almost every day, she ate very balanced diet, never had a glass of wine. Well, at 45 she had a triple negative out of nowhere...

    As a matter of fact all patients I had chemo with were extremely healthy before this diagnosis(me included).

    For me it was exercise enough to walk my dog twice a day, for 30-40 min total, and exercise my breathing...I felt good for most of the chemo treatment.

    cookie54, I am so sorry you had to deal with this for many years already.I am 6 months in and still panicked. I need to find the peace of mind to fight. When I was diagnosed I knew nothing about cancer, didn`t know such strong and altruistic people existed...

    May I ask you, did you have any signs of lung mets? Any indication at all? I do have 3 lung nodules, the bigger is 2.4mm. For the time being they are just under observation but I do get back pain(that seems to me like muscle contractions) and wander if it could be related.

    Today I had my PET before surgery and am soooo stressed...


  • cookie54
    cookie54 Member Posts: 663
    edited February 2023
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    Hi nume Thanks ,we have all been dealt a crumby deck of cards! I understand the panic, it's not something that's easy to digest. Your whole life has changed and it takes time to adjust to the new you. You'll get there and you will see how amazing and strong you are!

    I never had any sign of lung mets, it was found incidentally of my follow up scan. Like you I had a couple and they were very small 2mm originally. I was scanned at 3month intervals for 9 months as they grew slowly. They need to be at least 8mm to get enough tissue for a decent biopsy. Many variables, depends on size and location as to whether a CT biopsy or bronchoscopy would work. Usually there isn't any pain associated with these really small nodules. Different story if it's very large or a lung mass.

    Ugh the stress and scanxiety is real! I truly hope your PET is as clean as a whistle, fingers crossed. Big hugs .

  • Numb
    Numb Member Posts: 307
    edited February 2023
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    Thank you for your update, very encouraging.

  • SJSmith52
    SJSmith52 Member Posts: 6
    edited February 2023
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    I was fortunate that my breast cancer was found in early stage. I had surgery in 2017 (and then another one 1 week later because they did not get the margins. I was diagnosed with triple negative breast cancer. I only had radiation but no chemo. I am so thankful. No medicine prescribed. I go in for my mammogram this week and as always I get that "pit" in my stomach when the date approaches. I am so glad there is this group. I have no one to talk to who has experienced triple negative breast cancer.

  • iris2022
    iris2022 Member Posts: 10
    edited February 2023
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    Hi everyone. I'm on this forum because of my own diagnosis (not TNBC), but I wanted to chime in to tell you all that my mom had TNBC, stage III (back then), grade 3 - 17 years ago. She was 56 and had a chemo, then a lumpectomy, then radiation. She has had several clean PET scans since then and was "cleared" from further testing several years ago. She has said that as time has gone by, she thinks and worries about it less and less, although I'm sure my own diagnosis has brought it all back to her.

    I've been wanting to put this out there and saw that this was an active thread, so here you go. I hope it helps to know of other women who have gone on to live relatively normal lives. It certainly doesn't seem possible when you're in the middle of it all! Hugs!


  • yellowdoglady
    yellowdoglady Member Posts: 52
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    I also escaped that beast. It's well over 14 years now. I was sent straight to the surgeon. Then 18 weeks of chemo (taxatore and cytoxen most of a day) and seven weeks of daily radiation. TNBC Stage IIB, grade 3, four of fourteen lymph nodes taken were bad. It took priority in my life for five years. Now I check in from time to time to see if folks are okay. I was 48 at diagnosis. I thought no one in the family had a history. I was one of the unlucky one in 8 who just came up when that wheel was spinned. Not exactly. It seems that my great grandma's sister had breast cancer in the 1920s. My aunt told me that she was treated with radiation at home. She had a lead velvet lined box of vials of radioactive isotopes that sat in my grandparents' house for decades. That is scary, because the kids were around that.

    Yes, many, many of us go on to live a normal life after we go through that particular hell. We do what we have to do and knowing that as we are a subset of one, our odds are 50/50, we will win or we will lose, we hope and sometimes pray. But it is never easy. Love to anyone on that journey.

  • kayrem
    kayrem Member Posts: 24
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    Too funny! I just logged on to the board and thought I would post and it looks like the top of the page is my last post from July 2021, almost 2 years ago. I am still going strong, almost 12 years post diagnosis. Stage3A TNBC with 4/11 nodes (one node was larger than my original tumor - over 2.6 cms!). I am heading to Europe this summer with my family. It will be the first time for my husband and kids. I am grateful…

    One last note before I go. When I was doing treatment I took a mindfulness course. It helped to keep me calm when I was doing my radiation, my scans, etc. I thought it was “okay” kept me calm but probably not much more. Years after my husband would tell me to meditate if he thought I was anxious….it was really annoying. Well I was really wrong! Now I am doing deep breathing almost every day. I even took a course in it. Why… because now I can measure my heart rate variability (a quantitative measure of your parasympathetic nervous system). I hate to admit he was right… but I did. Research even suggests a better chance survival if you do recurr.

    Take care everyone.

  • scoobydoo
    scoobydoo Member Posts: 20
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    Was diagnosed with triple negative breast cancer in 2009. Still alive and well! No reoccurrence. 14 years!!!! Praise the Lord!!!

  • trishyla1
    trishyla1 Member Posts: 44
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    August 29th marked seven years since my triple negative (among other types) diagnosis. Yay me!

  • moderators
    moderators Posts: 7,914
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    LOVE to see this thread getting revived — it brings great hope to so many! Congrats to all who are thriving!!

  • fiercer
    fiercer Member Posts: 15
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    11 years out! Still doing well and staying on top of testing. People ask me how I’m doing and truth is there is lingering neuropathy and joint pain. Though I also have tinnitus and I’ve learned how to live with it as well as the residual treatment pain.


  • moderators
    moderators Posts: 7,914
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    Thank you for sharing, @fiercer! Have you found anything to be helpful in managing the lingering neuropathy or joint pain, such as yoga or anything else?