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Long term survivor examples.

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  • Valstim52
    Valstim52 Member Posts: 833
    edited February 2016
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    Hello Ag23


    I'm on other threads, but in 1992 had breast cancer in my other breast. I was 31 with a 3, 5 and 7 year old. I had a lumpectomy which was new then and tamoxifen and radiation. After my lumpectomy, i did NOT have clear margins so had 12 radiation treatments. Never knew what my stage was, they said to worry about the surgery and radiation. I do know my tumor was 1cm and I had 2 positive nodes.

    That 3 year old is now 28 I never thought I'd see my kids grow up. I was fortunate and went to a very large teaching hospital for treatment. (University of Chicago) The standard (which i now agonize over not having done) was double mastectomy in my small town. . I wonder only briefly if I'd had it, would I have IBC now. (just diagnosed 12/15 with idc with ibc symptoms and triple negative on top of it all. . (not sure what all that means except it's grim to google it. ). oh and i have positive lymph nodes.

    Chemo was never an option mentioned for my original tumor . So much was either explained and I didnt hear it, or they didnt do it. I never had a scan, only a chest xray. Later I had a CT and an MRI but I was well past treatment. I never heard of a PCR until recently. I've had so many friend in the years since, have breast cancer. Some at early stage think they are fine after treaatment , that comes back with a vengeance and others that are stage III or IV and live many years.

    in 24 plus years there have been so many breakthroughs. For instance, chemo before surgery was rare in my olden days. Or I didn't know about it. . Lumpectomies were considered 'new and risky' (one Dr, told me, my cancer would come back if I didnt have a radical surgery) The best thing my current MO told me is people forget that the purpose of chemo before surgery is to shrink the tumor, if you get total pcr that is a bonus. chemo shrinks, surgery gets what the eye can see, and radiation does the mop up.

    20 plus years later, though in the other breast, i can say that worked for me. You never know how your body will respond. Plus the worry and what ifs, and maybe can really work on your well being mentally and physically.

    As for genetic testing, i'm negative, but all of my fathers sisters (5) had breast cancer with an onset in their 50's and 60's. Only one died of breast cancer (after 10 years), the rest of old age. And the only treatment so far we can tell is they had surgery after having large lumps that could not be ignored. It was the 70's and early 80's.

    Just my 2 cents. I'm no expert, but you can not put a price on piece of mind. Since I have to have cancer again, I'm glad this one is now and not back then.

    I can only share what I know and have experienced. Hopefully it will help.


  • shiny
    shiny Member Posts: 19
    edited March 2016
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    just wanting to add to your numbers.. Over 8 years from Chemo and sending you all my best.

    Shiny

  • Cathytoo
    Cathytoo Member Posts: 394
    edited March 2016
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    shiny...great to hear eight years out‼️ Keep it going. Thanks for sharing

  • BanR
    BanR Member Posts: 238
    edited March 2016
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    Valstim!!...that is so very well written ...sorry to hear that you are having to deal with this again but it happened to you after 20 years, I am pretty sure the previous cancer got cured and this is a new one! Extremely happy to hear that you are watching your children grow...your 3 year old is a 28 year old now. M sure she has no memories of mom dealing with cancer. Finish your treatment and watch your grandchildren run around you now! sending lots of good wishes and love..

    shiny ..congratulations on completion of 8 years!!


  • shiny
    shiny Member Posts: 19
    edited March 2016
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    Kathytoo,BanR,

    Thank you both for your hurrah!

    It's lovely to pop back here on Fab BCO. Made some lovely frienships here.

    Sending you all my peachiest vibes for all things good coming your way.

    I will come and read your news. Take care!

    Shiny

  • Valstim52
    Valstim52 Member Posts: 833
    edited March 2016
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    BanR

    Thanks so much. Yes she has no memories. Funny after several years neither did I. This is an entirely new cancer. I'm upbeat and positive because back in the dark days, options were so limited. So glad to see all of you post. Even if its a year past treatment it gives hope.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,918
    edited March 2016
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    Hello shiny,

    As a fellow Brit, I just wanted to say hello and congratulate you on your long-term survival and posting for all to see. It is so important for the newly diagnosed and those going through treatment to know they can get through it all and get back to a normal life.

    I was diagnosed with IDC TNBC in June 2005 and discovered bc.org after all my treatment etc. in 2010. I am coming up for eleven years since diagnosis on June 20th this year.

    I admire you for your long time interest in the threads. This is important, as a lot of patients disappear from the threads after their treatment and we have no idea what has happened to them.

    Sending you best wishes.

    Sylvia xxxx

  • Meggy
    Meggy Member Posts: 74
    edited March 2016
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    Hi TulipsandDaffodils...my oncologist was fine with more chemo...she said if one taxane works well (Taxol) then the cousin drug is a good next step (taxotere). Also, I decided to combine it with carboplatin which packs a big punch. I just couldn't do the watch and wait. I had no one to raise my young kids if I recurred.

    When someone would question my decision, I'd say, well how much chemo are you going to have to give me if I recur? A lifetime worth. At one point she did not want to give me more AC (read my latest thread about that....my 8 year post) and I threatened to go to Mexico to get it. I was bluffing but it worked. I would do things differently with just the AC. It had flattened my tumor when I took the first 4 rounds and I wish I had done a round 5 right then. My latest thread "Thank God for 8 years" goes into more detail.

  • TulipsAndDaffodils
    TulipsAndDaffodils Member Posts: 48
    edited March 2016
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    Thanks, Meggy! I, too, am not really comfortable with the wait & watch approach for residual cancer, so thankfully I convinced my doctor to put me on adjuvant capecitabine chemo (there was a recent study showing its effectiveness for residual TNBC after neoadjuvant chemo. Since it was just one study, not all oncologists are fully onboard with it and there will be additional studies coming up). Anyway, I am really happy to be doing more, and really would be happy to do more Taxol, and other chemos, too! Your story is really helpful to me, thanks!

  • Valstim52
    Valstim52 Member Posts: 833
    edited March 2016
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    Yes BanR

    it was a completely different cancer. I lived my first years after diagnosis the first time, worrying about what if etc, should I have had chemo (one onc did recommend it for after my lumpectomy, i declined). Back then my kids were young and my quality of life was the most important. So it did work out. This time I'm going with the aggressive treatment outlined. They will wait to see if they get clear margins before deciding on chemo after my mastectomy. If I don't get a PCR (which happened before and I went the radiation route) I will get carboplaitan and taxatore afterwards. Totally fine with it. Or not. Just my personality and 2 cents worth.


    What i personally feel is the the most important, is for each individual to be complete committed and focused on their treatment plan. If not there is a lot of anguish and second guessing later.



  • shiny
    shiny Member Posts: 19
    edited March 2016
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    just poping in to scatter some more good vibes your way and wish you well.

    Thanks Sylvia. Discoved BCO late in my treatment but it was a blessing and full of Fab people.


    Take care all.

    shiny

  • BanR
    BanR Member Posts: 238
    edited March 2016
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    Sharing in short, an information, that I came across...

    Light pollution triggers breast cancer! The need to stay more and more under natural light. Even the light from laptops, televisions and smart phones can trigger breast cancer..this is because of a link established between hormone melatonin and artificial light and how lack of melatonin is one of the agents to trigger breast cancer. While i was reading more and more about this, I just came to know that just yesterday Apple announced a new technology which will enable reduction of blue light from its devices and if you all do more reading on this, you will find out that blue light is the most harmful of all artificial lights and all these electronic devices use blue light.


  • Cathytoo
    Cathytoo Member Posts: 394
    edited March 2016
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    BanR...Not long ago I read a paper that said lack of melatonin can trigger breast cancer. Also, lack of vitamin D. I've slept with the light on almost all my life. And, I'm verylow in vitamin D. AND...I have breast cancer. Makes me wonder

  • BanR
    BanR Member Posts: 238
    edited March 2016
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    Makes me wonder too...since I got low levels Vit D and as a student I used to study late nights and later in my life too!! I am more an owl than a lark!!! Could that have contributed to me developing cancer so early in life!!

  • Cathytoo
    Cathytoo Member Posts: 394
    edited March 2016
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    BanR...I'm way older than you. Who knows why women get breast cancer. I think all these studies are aimed at finding answers to a mystery that can't be answered. Why are so many younger women getting breast cancer...especially TN? I definitely DON'T fit the TN profile.

  • Valstim52
    Valstim52 Member Posts: 833
    edited March 2016
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    I have always had high vitamin d levels. Go figure, and no other risk factors. Had bc at 31, small tumor and then 24 years later idc/ibc in other breast.

    who knows?

  • azrescue
    azrescue Member Posts: 15
    edited May 2016
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    I've read so many of these truly inspiring long term survival stories. However, as I'm reading them it seems like the majority had very early stage with small tumors. Are there stories with large tumors & long term survival? My tumor was 5.9 cm when diagnosed in January. I just had my MRI (after 3 rounds of chemo) & the tumor is now 1.5 cm. Lymph nodes also responding to treatment. I have two more rounds of chemo (carbo & taxotere). Then I'll have surgery, a double mastectomy. Followed by radiation.

  • sylviaexmouthuk
    sylviaexmouthuk Member Posts: 7,918
    edited May 2016
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    Hello azrescue

    I have just read your post and wanted to say that I was diagnosed in 2005 with a large TNBC tumour 6+ cms and had neoadjuvant chemotherapy, mastectomy and radiotherapy. Despite a poor prognosis I had a complete pathological response and have been fine ever since. On June 20th this year I shall have reached eleven years since diagnosis.

    I hop this reassures you.

    Fond thoughts.

    Sylvia xxxx

  • Valstim52
    Valstim52 Member Posts: 833
    edited May 2016
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    Sylvia thanks so much for sharing. That gives those of us with not great prognosis (my MO refuses to use that word) hope.

    Thats why I love these boards. I've read about ladies with large tumors, TN, and did not have PCR and they are 5 + years out from dx.

    Thanks so much, and that does not include those that after dx and tx they are no longer on the boards, but enjoying life. (a member reminded me of this as well).

    Heres to hope

  • KSteve
    KSteve Member Posts: 190
    edited May 2016
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    I'm a 5-1/2 year survivor of a 7 cm tumor with 4 nodes involved. I'm probably in better health and physical shape now then I've ever been. In two weeks, my DH and I leave for 12 days in Bora Bora for our 30th wedding anniversary and I'm actually wearing two-piece bathing suits for the first time in probably close to 10 years! He thinks I look "smokin hot" lol and that's all that matters. Hope this brings hope to anyone who is in need. I've been there too and am happy to report that life is awesome again!

    Kathy

  • 4everStrong
    4everStrong Member Posts: 88
    edited May 2016
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    thank you for sharing your stories and giving us hope and encouragement.

  • BanR
    BanR Member Posts: 238
    edited May 2016
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    Beautiful and inspiring stories Sylvia and Kathy!! :)

  • azrescue
    azrescue Member Posts: 15
    edited May 2016
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    Sylivia & Kathy, thank you so much for the encouraging words. I needed to hear this & get back to positive thoughts.

  • CanuckMom
    CanuckMom Member Posts: 143
    edited May 2016
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    Not long term yet...2 years out and living life. xoxox

  • BanR
    BanR Member Posts: 238
    edited June 2016
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    thanks for writing Canuckmom!! wishing you many more...

  • rosselle
    rosselle Member Posts: 4
    edited June 2016
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    Just want to add one woman I know who's 21 years out. She's my brother's mother-in-law. Such a wonderful woman! She called me once she found out I had BC. I asked her what treatments did she have back in 1995, she said surgery (MX right breast) and chemo only which she had every two weeks by IV, after 6 months of treatment she was declared NED and never took any pill or medication after chemo. That's when I figured she was a triple negative then.

    She's pretty healthy at 60+. She did mention she likes to juice a lot, carrots and apples are her favorite. She avoids fat and red meat.

  • BanR
    BanR Member Posts: 238
    edited June 2016
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    thats great to hear Rosselle! wonder how did the figure out those days that there is something called hormone negative which will not respond to further hormonal medications...all i hear is that everyone use to get hormone supplements till 2001! So happy to hear that she is doing well at 60 plus..hope the same for all of us!

  • kayrem
    kayrem Member Posts: 24
    edited June 2016
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    Hi Everyone - not a long term survivor (over 10 years?) but that's the goal! I am however a 5 year survivor which is a big deal to me. When I was diagnosed and finished treatment they said go home and did not leave me with a lot of hope going forward. I made some lifestyle changes, which hopefully helped, and here I am today!

    My kids were in preschool and grade 1 when I was diagnosed. Now they are in grade 8 and grade 5. I have had a great 4 1/2 years (treatment was not fun but do what you have to to get to the good times ahead!) and I am looking forward to many more years! Take care and have hope! Karen

  • Valstim52
    Valstim52 Member Posts: 833
    edited June 2016
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    Kayrem, so glad you posted. Yes with TN it seems like it's ok, call us if you have a symptom. No AI's or tamoxifen for us.

    I'm with you. I will post at 1, 2, 3, 4 and onward because any time spend NED is a gift no matter our hormone receptor.

    Posts like yours gives those of us in active treatment hope that it will get better. Without hope there is no life

  • Jojobird
    Jojobird Member Posts: 95
    edited June 2016
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    I love this thread. It gives me hope. Thank you roselle, BanR and Kayrem, and Valstim I hope you come back in 20 years too.


    Jojo