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Is there any hope for long term survival?

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AbbeyFighter
AbbeyFighter Member Posts: 2
edited June 2019 in Just Diagnosed

I am being treated for stage I invasive carcinoma. I am sorry but everything I read says that my survival can be prolonged but I will probably die from breast cancer and within the next 10 years. I supposedly have good prognostic factors such as hormone positive and the her neg. but honestly does not seem to matter. I dont want 5 or 10 years. I want to live to old age and see my beautiful family grow up. I feel I have been robbed. I am angry and disillusioned. Why have they not found a way to prevent this coming back. I am writing because I would like to hear whether there is any hope. Where are the percentages of women living 30 years after diagnosis? Is it really 1 percent? It sea like such fallacies. Treatment has really not improved. It is just catching the disease earlier and giving a few better years. I am angry and feeling hopeless . Why did this ever happen?

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  • carlads
    carlads Member Posts: 41
    edited November 2012
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    AbbyFighter,

    I am not sure what you are reading but stop reading it!  I was just diagnosed with IDC and I plan on living to be an old lady along with all of us here.  Try to put your mind at ease you have found the right place to be.  I am new at this but there are so many wonderful ladies that can help!  My mother had Breast Cancer that was 40 years ago and she was a survivor along with so many!  Take a deep breath you will be fine..

    Carla 

  • rachelvk
    rachelvk Member Posts: 564
    edited November 2012
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    Abbey - Rule number one - be careful about what you read. Yes, there are a lot of unknowns, but your best approach is to go into this believing you will get through. I don't know statistics, and there are things other than Stage that determine your situation (are you ER/PR/Her2 + or -? What grade?). If you're at stage 1, the odds are really good that you'll get through this. You'll find many women here who are 20 or 30 years out - or even 'only' 10 but still going strong with no signs of recurrence.

    You have every right to be angry. BC sucks - there's no getting around that. You'll spend so much of your time over the next few months in treatment, feeling crappy, and going places in your mind that you've never been. Unfortunately, I don't think any of us ever find the answer to "Why?" Don't torture yourself going through everything you've ever done or eaten. There is no rhyme or reason. You'll find vegetarians and athletes, as well as women who ate everything and didn't exercise.

    Spend time on this board and you'll find some wonderful women who can help support you and answer your questions. You don't have to go through this alone, and you'll find that it can be hard to really find the support you need from friends and family, because they won't understand, no matter how much they want to.

    Wishing you all the best.

  • kaza
    kaza Member Posts: 122
    edited November 2012
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    Hi Abbey, please dont look at sites on the internet, we are all individuals and all our bodies are different how can they know our prognosis .  As time goes by it will get easier and you will gain the strength to fight this unwelcome crap!!!!!!  You will feel stronger and push it away it will make you angry and that helps to get through. You will get through this with the support from all of us here sending you massive HUGxxxxxxx

  • greenfrog
    greenfrog Member Posts: 73
    edited November 2012
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    Wow  - not sure what you have been reading and where - but stop!  When statistics cite 5 and 10 years it is just an arbitrary figure to evaluate stats - it doesn't mean you will only make it to 5/10 years.

    Stage 1 cancers have a very good chance of total cure. Breast cancer can be cured - you can eventually die of something else. The problem is that the doctors cannot say catageorically to you "You are now officially cured."

    Google up Dr Susan Love. She tells it like it really is. Treatment HAS improved. The taxane chemos are better than ever and Herceptin is saving thousands of lives. The new generation Aromatase Inhibitors are getting great results.

    This whole thing stinks but there are thousands of women living long and happy lives after BC - women who are in effect cured of this disease. Keep focused on your treatment and getting through that. BC can steal your peace of mind but the longer you go from DX the better it gets.

  • FLtricia
    FLtricia Member Posts: 8
    edited November 2012
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    Just to let you know, my mother had stage 2 IDC sixteen years ago.  Her cancer was considered very aggressive.  She is now 87 and going strong! 

    That said, the shock of diagnosis coupled with reading statistics can bring scary thoughts.  I did the same.  I am now 6 years out and don't even think about cancer every day anymore.

    You will see your beautiful family grow up!  Say that to yourself every day.

    Best Wishes.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited November 2012
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    Abbey, when a study talks about 10 year survival, it's because they only followed the women for 10 years.  It doesn't mean that those women didn't go on to live for 50 years.  Trying to keep track of 1000s of women is difficult and expensive; because of this, most studies don't go beyond 10 years. 

    The other thing to keep in mind is that any 10 year survival stat that you see today is based on someone who was diagnosed 10 years ago and who was chosen to be included in a study that was started more than 10 years ago. If the study is continued, in another 10 years these women will have survived for 20 years, but today, if it's only been 10 years since their diagnosis, the longest that they could have survived is 10 years.

    If you do see a 20 year or 30 year survival stat, you have to remember that these women were diagnosed 20 or 30 years ago.  Diagnosis was different then - more breast cancers were not diagnosed until they were later stage - and treatment was different then too.  Treatment has improved.  Drugs like Tamoxifen and the AIs and Herceptin didn't exist 20 or 30 years ago. So even if you could find 20 year or 30 year stats, they would be completely out of date. 

    The one place where 20 year stats are collected is the SEER data. The 20 year survival rate for women diagnosed between 1985 and 1989 is 64.6%.  This is the most recent 20 year data available. Here is the chart: SEERa Relative Survival (Percent) By Year of Diagnosis, All Races, Females, All Ages  (I think you need to push the "Submit" button the page that comes up in order to see the chart.)

    If you look at the chart, you can see how much 20 year survival improved for the women diagnosed between '85 and '89 versus those diagnosed just a few years earlier, between '80 and '84.  The twenty year survival rate for the '80 - '84 women was 55.0%. 

    And while there is no 20 year data available for women diagnosed more recently than 1989, if you look at the 10 year and 15 year survival data, you can see further improvements.  The 10 year survival rate for the women diagnosed from '85 - '89 was 73.5%.  The 10 year survival rate for women diagnosed in 1999 was 84.3%, more than a 10 point improvement in survival. It's reasonable to assume that more of those 1999 women will go on to survive 20 years.  And for someone diagnosed today, in 2012, the long-term survival rates are likely to be higher still. 

    One other very important thing to keep in mind about the SEER stats is that they include all women who are diagnosed with Stage I, II, III or IV breast cancer (they do not include Stage 0). Stage I is the most favorable diagnosis, so within the SEER data, there's absolutely no doubt that the survival rate for women diagnosed with Stage I breast cancer will be higher than the average result.  

    Most women diagnosed with Stage I breast cancer go on to live long, full lives and do not die of breast cancer. If you are reading or seeing survival stats that suggest anything different, you are either misinterpreting what you are reading, or the information is wrong or possibly intentionally misleading. 

  • Miller1353
    Miller1353 Member Posts: 5
    edited November 2012
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    Take a deep breath. This is all new to you, and you have every right to feel overwhelmed. I remember the angst of the first months of trying to reconcile this experience in my head. It gets better. It really does. Once a treatment plan is in place, you will start to think like a fighter. One step in front of the other to get the job done.



    Cancer stinks. I have learned to stop trolling internet sites. Think about it...the people who are doing well are rarely blogging about how well they are doing. They are living the life they are blessed to have. Most internet research is old. And really, do you want to lump yourself into a group? You are going to go down this cancer path whether you want to or not. Do not buy into the dark thoughts. Get up every day and be glad that you can. I am three years out. I can remember when a friend told me that there were days she did not think about cancer. I thought she was crazy. There was no way that I would not go a day without thinking about it. I was wrong. Life is good. I do not have any guarantees, but I have children who need me and a job that I love. Give yourself time to process this...and...stop trolling the websites! I typed that in my mom voice. Lol

  • dogsandjogs
    dogsandjogs Member Posts: 677
    edited November 2012
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    30 years ago I got cancer. I'm still here and doing fine.

  • MENA1954
    MENA1954 Member Posts: 111
    edited November 2012
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    Dogsandjogs, you give me hope!

    We have the same DX ...and 30 yrs. sound real good to me! LOL!



    Mena

  • Scottiee1
    Scottiee1 Member Posts: 1,790
    edited November 2012
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    Dogsandjogs......wow...30 years....I'll take it!!!!! .....by then I'll be 95 and hopefully

    won't remember I ever had BC.......lol

  • mdg
    mdg Member Posts: 1,468
    edited November 2012
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    Abby - BC is scary but there is much scarier information out there that you are reading!  Step away from the computer and Dr Google.  I was stage 1 and I am very hopeful about being here to see my young son grow up.  I know how hard this is at the beginning - in time it will get easier.  Good luck and hugs!

  • LtotheK
    LtotheK Member Posts: 487
    edited November 2012
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    You are getting some great feedback here. The advice I give is that over time, when your treatment becomes a smaller part of a very rich and well-lived life, you will probably be able to think less in these terms.  I have (and I've stopped being so obsessive with research, too).  That doesn't mean I don't have my "oh sh**" moments regularly, I do!  But my sense of things has simply changed.  I've been an exception in all the wrong and all the right ways depending on what side you look at this from.

    I was diagnosed at 39, so it really is a whole other bag.  I wonder if I'll make it to 60 sometimes.  Actually, scratch that.  I don't think about how long I'll make it anymore, I think about what is robbing me of precious time now.  I am proactive in a way I never was before, I stand up for myself better (not always great, but better!) 

    It has taken me a lifetime to try to even get close to the Yogi concepts of the present.  I am getting there.  And I'm loving my life doing it, no matter what the future holds.  I do whatever I can to keep the beast at bay, and I have hope for the future, and I trust my oncologist and medical team, which is so important in getting back to your life quickly!

  • AbbeyFighter
    AbbeyFighter Member Posts: 2
    edited December 2012
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    wow, you women are incredible! such good attitudes and its great! i want to be just like you and hopefully all you say is true. I so want it all to be true. I am just so scared and just want to cry always. The lovely woman who visited me in the hospital was 12 years cancer free, but i just feel very unfortunate. I don't have good feelings about my future. I worry my doctor left cancer somewhere. She said my lymphatic nodes were clear, but i wonder if she checked them all and if her sentinel test is correct. I read there is a 90 percent chance there are no nodes if sentinel node biopsy good. But what happens with the other 10 percent? i am so anxious about this i can't sleep. I don't know what i would do if i was told i had metastic disease. My heart couldn't take it. I would just want to go in an car accident or something fast so i wouldnt have to see all that i would miss. I don't really trust my doctors because they have so many patients and i just don't think they truly care. I don't know if my surgery was really a success or if a lymph node was left and I will have a metastasis. I never imagined i would get cancer. Honestly, i thought i was lucky in my health and above it all and i was invincible. i know this is crazy but i just never worried about it ever. it never crossed my mind and i can't believe it. now i am worrying about all these other cancers too and scared i will get those too. I even heard that breast cancer is associated with colon, uterine, ovarian and pancreatic cancer. Some of these are even more devastating than breast cancer. even if i survive this, i am worried im going to develop pancreatic cancer or something and have such little time. I am so anxious its driving me crazy but i don;t believe in medication so i don't know what to do. I know it does no good to worry but it seems out of my control. i wish i had your attitudes and i feel better sometimes but most of the time i can think of nothing else but cancer. its awful.

  • msphil
    msphil Member Posts: 185
    edited November 2012
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    hello honey I just wrote a text for the Just Diagnosed a couple days ago, HOPE is what kept me going I had to Believe and to say it to myself over and over again, Positive thinking is what we MUST do to ge thru this thing and I know it works with your Faith, my higher power is GOD, so whoever yours is Believe, I KNOW, I am a 18 yr SURVIVOR and it shows that it is indeed Possible, I was diagnosed and then received another call saying I didn,t have it, was a mistake, and you can imagine the excitement, BUT then yet another call the diagnosis was correct they had my name mived up with another patient,our last names were the same but not our first names, go figure, ALL while planning my wedding to my wonderful husband, so take it from US that have been there and those of us that have pretty good long term survival. God Bless u and US ALL. msphil(idc, stage 2, L mast, chemo and rads and 5 yrs on Tamoxifen) 

  • liefie
    liefie Member Posts: 761
    edited November 2012
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    Abby, if you can post here, you are a survivor. Also remember that your chance of dying in a car accident is much higher than your chance of dying of breast cancer. You have to stop worrying, and start thinking like a warrior. This is the fight of your life, and you are the most important part of the team going into the battle. Hugs to you!

    LtotheK, your last paragraph is absolutely profound! That's exactly how I feel too, and I had to get cancer before I received this insight. Thanks!

  • Cindyl
    Cindyl Member Posts: 498
    edited November 2012
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     I, like you, never imagined I'd get cancer, I always figured I'd have a heart attack or stroke as that's the way many of my ancestors went.  When I first heard the news I was just sure that I was going to die and die soon.  I think that's pretty common, but most of us soldier thru this and have great futures ahead of us.  There's a lot you can do to improve your odds and many of those things start with having a good relationship with your team. I would say that if you don't trust your doctors, find new doctors. You need to believe they are giving you their best advice and doing everything they can to help you get through this. Then you need to believe that the advice they are giving you is worth following.

  • Blessings2011
    Blessings2011 Member Posts: 1,801
    edited November 2012
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    Abby - my mom was diagnosed with breast cancer at the age of 60. She passed away a few years ago at the age of 88, from Parkinsons disease. She had lived out the rest of her life with no recurrence of any kind of cancer whatsoever. She was a 28 year survivor.

    I was also diagnosed at the age of 60. I had my surgery, and am currently on 5 years of Anastrozole.

    I have absolutely no intention of ever dealing with breast cancer again. At this point in my life, I've made some amazing changes that hopefully will guarantee that I'm around for a long time, and not only just "around", but strong and healthy.

    Please step away from Dr. Google. He is a liar and a fearmonger. BCO is the only forum my oncologist lets me read! Wink

    You are not a number, you are not a statistic. Regardless of what any "study" might show, that does not determine your life, or your life span.

    What I would recommend, however, is if it's possible, you visit a counselor, therapist, or social worker who deals in women with breast cancer.

    It's a wonderful gift that you give yourself - being able to meet with someone on a regular basis, and just express your fears, without any worry of being judged or told what to do.

    Life doesn't have to be this hard....your fear and your anxiety can make you quite sick. Please ask for help. You can always come here and we will support you and encourage you, but you deserve to live your best life free from the anxiety that is weighing you down right now.

    Wishing you all the best....

  • artsee
    artsee Member Posts: 701
    edited November 2012
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    BUMP!

  • Curlylocks
    Curlylocks Member Posts: 61
    edited December 2012
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    Abbeyfighter,

    Your stats are great, stage I!  There definitely is all the HOPE in the world my friend.  I am a 7 year survivor of stage IIB, 4 cm tumour and 3 positive lymph nodes and dont plan on going anywhere, anytime soon!  The stats are always measured in 5 and 10 year intervals, it certainly does not mean in any way that you only have 5 to 10 years.....

  • Rose12
    Rose12 Member Posts: 15
    edited December 2012
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    I am so glad that this topic has come up, thank you Abbey for bring it up. I am new to the breast cancer scene with less than 1 cm too no lymph nodes. I thought that I only had 5 to 10 years to live. I was going to get my funeral arrangements ready,and get my will together. I already started to clean out my old papers, closets, etc. I really did not know what to think. I thought this was the end. I really hate to say this as I have been wanting to share it but I feel like the cancer is still in my body. I know this is awful to say but I just do not feel right. Maybe it is the chemo still in my body, I don't know, but I can't help but feel this way. I still feel like I have cancer. Is this a crazy thing to say? I feel like the chemo 4 treatments didn't even do anything. Sorry to have to share this but I had to let it out. I have been holding it in for quite some time now.

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited December 2012
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    Rose12... it takes a long time for that feeling to go away and, sometimes, it never does completely.  Once our bodies have betrayed us this way, it takes a great deal of time to learn to trust them again.  Many of us here struggle with our anxiety when we feel a new ache or pain, get the sniffles, suffer from a headache, develop a cough.  Once you've had cancer, you're always going to be a little bit afraid that it will come back.  It sucks, but there it is.

    Most of time, I have really good days, but every-so-often a new twinge will see the fear come roaring back.  My latest go-round with it is when I developed sudden shoulder/collarbone/neck pain seemingly out-of-the-blue.  I was convinced I was in serious trouble.  Thing is, just a few weeks prior, I'd been hit by a car when out riding my bicycle; however, instead of considering that THAT was the likely cause of my sudden pain, I went straight to cancer.  It does a number on your head, believe me.  You never really get over it, you just learn to keep it in perspective as time passes.  But be prepared; every so often the fear escapes and you have to wrestle it back in it's box.

    Breast cancer can never be "cured".  If left untreated, it is fatal.  There is no cure or vaccine.  However, with early-stage breast cancers, treatment is geared toward "curative effect", meaning they intend to stop it completely in its tracks with surgery, chemotherapy, radiation and hormone treatment (if applicable).  That's why your doctor will never pronounce you "cured".  There is no such thing where breast cancer is concerned.  However, your treatment and your follow-up from here on out is going to be geared to keep you disease-free for a long time.  And it is possible to live disease-free for a long time.  Many, many women do.

    The 5- and 10-year "milestones" are arbitrary measurements used by researchers to determine how successful that treatment is.  For early-stage women such as yourself, "curative effect" can be as high as 98%, meaning nearly every early-stage woman who sought treatment was alive at the 5-year milestone and 93% are alive at the 10-year milestone.  Those are VERY GOOD odds.  Another thing to keep in mind; these "milestones" often only reported if a woman is still alive or not; they didn't always factor in cause of death.  A woman who survived breast cancer to the 5-year may have passed away of a heart attack before the 10-year mark.  Her follow-up will only indicate that she is no longer alive, not that she died of something completely unrelated to breast cancer.  That lessened the incidence of "breast cancer death" even further.  With more recent studies, I believe they are beginning to factor this in, but a great many of the older studies did not.

    Breast cancer is survivable.  Many, many women survive it and live very fulfilled lives. 

  • Rose12
    Rose12 Member Posts: 15
    edited December 2012
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    Thank you Selena, you are very intelliegent and have a nice way of explaining things into perspective. Very good info to read and understand for everyone to share.  Thank you a bunch! I hope you are feeling better from your bicycle accident. Its always something isn't it?

  • artsee
    artsee Member Posts: 701
    edited December 2012
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    I have had aches, and pains and twinges for the last, almost five years. BC has scared the crap out of me totally. Every time I get these feelings that pop up in my body, my mind immediately goes to cancer. Never mind about all the holes I dug, and trees I planted....It's gotta be cancer coming back to haunt me. Go figure....still looking over my shoulder, and will probably continue. Sigh.................

  • SelenaWolf
    SelenaWolf Member Posts: 231
    edited December 2012
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    It's awful, isn't it?  Sometimes I get so annoyed and frustrated with myself, but I try to remember that it's just going to take time.

  • bluepearl
    bluepearl Member Posts: 133
    edited May 2013
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    A study was done on people who lived 90+ years. Half of them were always in relative good health, the other half had suffered bouts of "deadly" diseases such as cancer and heart attacks.....so, given that you are stage 1, plan on doing well.

  • bluepearl
    bluepearl Member Posts: 133
    edited May 2013
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    BTW...if I had a 93% chance of winning the lottery, I'd buy that ticket!

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited May 2016
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    This is an old thread, but I remember coming across it when I was first diagnosed and it helped me so much.. so I thought I'd bump it as it may be of comfort to other women too.

    Bessie.. I know you rarely post now, but your past posts have been so helpful. Thank you for the time you spent to explain everything so clearly.

  • Momof6littles
    Momof6littles Member Posts: 7
    edited May 2016
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    My grandmother had 2 different breast cancers. Was treated for each and lived to be 86.

    Yes, There is hope.

  • Lucy55
    Lucy55 Member Posts: 2,703
    edited May 2016
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    Mom.. Thanks for sharing about your grand-mother !!

  • suz2016
    suz2016 Member Posts: 8
    edited May 2016
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    You absolutely cannot think that way.

    and you scared the crap out of me! I'm same stage as you, same type (IDC) and just had a mastecomy a week ago.

    not once, and not once, did I consider that this will kill me in the next 5 to 10 years. I worry more about getting hit by a bus!

    the first thing I was told upon diagnosis was that this is NOT a death sentence and many many women have survived this without incident, for a very very long time. chances are good something else will get me first :)

    be careful what you read on the net. there's a host of bad information out there. and, honestly, I was devastated at first but now, after surgery and in recovery, my imagination was way worse than reality.

    I know it's a shock. but don't believe that, please.