Is our prognosis really poor?

1235

Comments

  • LindaKR
    LindaKR Member Posts: 1,577
    edited February 2013

    I love reading your comments here!! Thank you!

  • CherylinOhio
    CherylinOhio Member Posts: 623
    edited February 2013

    Good to hear from you diana as always. You are very encouraging!! Next month I will begin 3 years from dx. I can't believe its been that long already!! Sigh.... it actually does get a little better with time.

  • diana50
    diana50 Member Posts: 2,134
    edited February 2013

    3 years is a milestone. Hang in there. One day at a time and you will string together years.

  • Rachel1
    Rachel1 Member Posts: 363
    edited February 2013

    I love you, Diana!!

    Rachel

  • melmcbee
    melmcbee Member Posts: 1,119
    edited February 2013

    Hi ladies. Im just glad to be here and for this thread. I only have 3 more radiation boosts left and then I only have reconstruction left to do. I consider myself cured. Hugs

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited March 2013

    Hi family,

    Diana I love your post. I'm one year out. I have a lopsided appearance because in Ireland prophylactic surgery is only considered in BRAC cases. I actually don't know if I was a stage III (a), (b) or (c) because when my surgeon gave me the DX he just said "stage III" followed immediately by "don't get hung up on the number". At that stage I was not very knowledgeable, who is? So I put myself down as a III(a) here, I always got A's at school! :-). I've had a scared week or two this month because my dear MIL died March 5th after a really brave 2 year fight with colon cancer. She was a truly great, lovely and feisty lady. But she was stage IV when diagnosed. Then a friend of mine 4.5 years out from stage III BC has been diagnosed with a recurrence, it's very bad. Ladies she is 39 (I'm 45) and she has 4 school age daughters. The youngest is 7 and in class with my own 7 year old. I'm going to call her Rose. I had never done anything but consider both Rose and myself totally cured. I don't know if this was naiive or optimistic. On the other side of the coin I have an aquaintance with a lady who is SIXTEEN YEARS out from stage III. All 3 of us had UMX, 3 positive nodes and an er+ cancer. If we were in a play we really would represent points on the spectrum of possibilities. The "Really Looks Like She's Cured", the "Don't Know Which Way It Will Go" and the "OMG". I had never read anything about the stats before hearing of Rose's bad news, and even when I went on the www I still had absolutely no idea they weren't what I would wish. You see my onco gave me a really rosy picture. Quoted some terrific stats for life after treatment. I see now he was giving me the aggregate stats for overall BC survival, from the stage 0 to stage III group, not the stage III group stats. I think he was right to do this, because it is always better to think positive and to present the patient with the most optimistic picture available. They don't have the gift of prophecy and if they give us the worst case scenario, it may not come to pass. Neither may the best case, but it's a helluva lot better looking. The reason I came accross this site was because I was on www googling about what has happened to Rose. Hubby is away in US because of his Mom's death, (we live in Ireland, I'm Irish, he's from NC) it's the 3rd time this year he's been away there, which is a great thing because he got to spend some really good time with his Mom, and helped her greatly in what turned out to be her final weeks, but I guess I'm also a bit low because of all the time without him (you don't fly 5,000 miles for a weekend trip, he is gone half the month each time), and I am in a state of grief over my darling MIL's death and Rose's news. I am seeing my onco April 15th. Quite glad it's so soon. I'm feeling like I should ask for the more relevent picture? He is the top guy in Ireland and a world expert on BC, on TV/Radio/Papers all the time so I don't doubt he has the research at his finger tips. He is truly passionate about what he does. He hates cancer too! Love you all! XXX

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited March 2013

    I know I’ve gone on at length but I just wanted to add one other thing that might be good to share. Some years ago I met an acquaintance in the supermarket and she mentioned that her FIL had always said that if you could get a group of people together in a room and they could put all their troubles in a basket and each then had the choice of swapping their problems for those of someone else, you would find that no-one would want to swap when they saw the troubles of others. The older I live to be, the more I am convinced of that as truth. The lady I told you about who is sixteen years out from stage III, well we all know that’s fantastic news, but what you haven’t heard is that she had to bury her son not too long ago, he had been born with a bad genetic condition and finally succumbed. So not only did she have the worst cross any woman could have, burying a child, but his whole life they knew it would probably happen. Any takers? Not me! I’ve another acquaintance who was going through BC same time as me, but she was stage I, no MX, no lymph out, just a teeny weeny lumpectomy. Lucky her, right? Unfortuanately, the chemo triggered in her the genetic type 1 diabetes that her father has had all his life. She now has to do insulin injections, and I would frankly say is an awful lot more angry and depressed than me and my bonny stage III. Would I swap for that. Hell no! XXX

  • new_direction
    new_direction Member Posts: 449
    edited April 2013

    I really like cats... and your picture is so sweet!

    Thought about your post... Maybe what we can extract from that is life usually brings about both happiness and sorrow for all of us. I don't want to make it sound as if we don't have any power over what comes to us but some of it we don't choose, some we don't have enough time or knowledge to change in time.

    It's easier to get up, do what needs to be done, when this is not a one in a million situation, this is sort of normal. We all meet potential tragedy. This situation has not only been for the worst. Ive learned so much. I feel like I needed to learn these things to appreciate my life more. I wouldnt change with anybody or even with who I was.

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited April 2013

    Hi New Direction, I feel like that too. (Not saying it wouldn't have been nice to be able to gain character improvement without the inconvenience of losing a breast Laughing, but so be it.) I also found there definitely are positives in there, including the wake up call to life and the chance to be very grateful for many kindnesses from others. Best wishes. XXX

  • ohio4me
    ohio4me Member Posts: 491
    edited April 2013

    I agree there are other ways I could have built character but maybe I would not have paid attention - BC got my attention. It sure isn't a path I would want to repeat but there were so many precious moments in the past two years that I treasure.  The bad days are fading with time and I focus on the sweet days.

    Uh......I can't say I miss my boobs (I was large). To me, my flat chest reflects what I have been through. I don't flaunt it - but it doesn't bother me at all when people notice, and they do. My family and friends saw the sorrow and the triumphs to get to today and they are the ones that matter.

    I think I learned to not wish away my days but to enjoy them - without boobs. I don't do foobs. I am flat and free. The discussion groups on BCO helped me make my decision. It works for me. It makes life easier in many ways. 

    YesterdaIy's gone - I have no control over tomorrow - and today is a good day.

    Best wishes to all. I don't post often but you are all great encouragement to me.

  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2013

    No - why should our prognosis be really poor?  We are all individual and I don´t think we need to be negative, for me its because I had ILC, which is hard to find but also slow growing.......

  • lovujja
    lovujja Member Posts: 119
    edited April 2013

    Hi LindaKR,

    i tired alkaline diet strictly for 4 months and now i watch my diet but more flexible. It gives me energy and i think it is good diet.
    As others i chose to not to believe on old data i have same feeling too.

    yes i am also stage III but there is always hope and hope has to come from inside of you. I am hoping i will be around to see my kids graduate from college who are just 5 and 6 yrs now. One think i learn from cancer diagnosis is that have positive attitude that makes life easier and healthier. No matter who you are one day every one dies and so we.

  • Momine
    Momine Member Posts: 7,859
    edited April 2013

    "One think i learn from cancer diagnosis is that have positive attitude that makes life easier and healthier."

    I agree. I do not believe it will conquer the cancer, but it will vastly improve whatever time I have, be it 1 year or 30.

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited April 2013

    Amen to that Momine and Lovujja.

  • ohio4me
    ohio4me Member Posts: 491
    edited April 2013

    Positive attitude - I totally agree it makes a difference.

    Last weekend I was around a friend of the family who has lukemia. What a grump. Angry. Irritable. Sour looking face all the time. Wallowing in self-pity. He is moping around waiting to die. It was depressing just being in the same room.

    I told him attitude (happiness) is a choice. He never was a positive person but that kind of attitude doesn't make the days any easier. Oh well. We are all different but I was mentally worn out by the time I left.

  • jenni__ca
    jenni__ca Member Posts: 461
    edited April 2013

    some of those statistics are so old they have moldy hair on them Wink  and most are so general they don't really apply to anyone ...

    hang in there and go for the gusto

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited April 2013

    There was a post someone put up on another thread about a tee shirt she got with a quote from Han Solo (Star Wars). Seems appropriate for this thread too

    "Never Tell me the Odds"Laughing

  • lovujja
    lovujja Member Posts: 119
    edited April 2013

    feelingfeli…,

    What a positive attitude. Cheers! I like your attitude and i think same way too. Bless you many many healthy and happy years.

  • jenni__ca
    jenni__ca Member Posts: 461
    edited April 2013

    feeling ... might be me ... my walk-a-thon t-shirt says "Never tell me the odds"  Laughing

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited April 2013

    Yes Jenni that WAS you! XX

  • ohio4me
    ohio4me Member Posts: 491
    edited April 2013

    Question - do we ever get past the place where every abnormal 'thing' makes us think the cancer is returned? I don't want to be the person that runs to the doctor for every little thing but I don't know the difference between what matters and what doesn't.

    Argh.....

  • lkc
    lkc Member Posts: 1,203
    edited April 2013

    Dearest Ladies, Please allow me to jump in. I was dxed 8 years ago ( in 2 weeks) with stage IIIC HER2 pos BC. Load os nodes, and really poor prognosticators. Blah, blah blah... My Path report freaked me out ( and I am a nurse!) and I  had to stop googling the stats as I was giving myself a heart attack. The reality is there is a wealth of outdated crap out there and alot of " subjective.. meaning, incorrect formulas for chances of recurrence. I learned the "poor prognosis" is a tool that the ONC use for giving agressive tx to these patients.

    Anyway, I have seen loads of women with much lower bc stages recur and stage III girls do great and  move way beyond BC! I do know that the further you are " out" the fear of it coming back lessens.   I am back to pretty much me these days. But I eat better and exercise more. So that's good.

    I wish you all less fear and anxiety and much happiness and good health.

  • gillyone
    gillyone Member Posts: 1,727
    edited April 2013

    ohio - I think it  gets easier as time goes on, but that little nagging feeling never goes away entirely.

  • bluepearl
    bluepearl Member Posts: 961
    edited April 2013

    They did a study on people who lived beyond 90. About 50% skimmed through life pretty healthily. The other 50% survived major illnesses, including cancer. While stage 3 is high risk, it doesn't mean all risk because every one of us has risk...stage 0 to stage 4....of leaving the earth prematurely and not necessarily with cancer. We can also live much longer than anticipated as well. But, all any of us really have is today. My friend's daughter died at 24 from breast cancer; another friend's daughter died at 20 from a heart problem, as has another 26 year old young man in our town...and they all had plans for their lives. SUCKS. But, today is what we have to make it better for ourselves and each other. Mark Twain once said "There's lies, damned lies and then there are statistics". Remember this.

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited April 2013

    lkc, that is so great to hear. Rock on! Blue Pearl I love that study.

  • ohio4me
    ohio4me Member Posts: 491
    edited April 2013

    lkc - I have a medical background and both sisters are nurses. I was careful to stay with reputable internet sites and gather information carefully (one sister is an ocology nurse). All that said - I'm a positive person with a good outlook most of the time. Then, bam, something nagging comes along and I wonder - 1) should I call the doc, 2) should I wait a few days and see if it goes away, and 3) can I wait the two months until my next appointment?

    Oh well, guess I'll give it a few days and hope things are better, if not, then decide from there. I like simple things like colds - I know how to deal with those things.

  • lovujja
    lovujja Member Posts: 119
    edited May 2013

    Thank you dear for talking from your heart. I totally agree with you and trying to not spend time to check those online crap instead trying to live healthy life: excercise, eat healthy food and do yoga.

    Hope to be here longer than any ones data suggest, :).

  • MaxineO
    MaxineO Member Posts: 555
    edited May 2013

    Great Han Solo quote! 

    Just do what you can to not get bogged down in worry. My DH always says, if it comes back, it comes back. Worrying about it isn't going to change that. Just enjoy today because none of us are getting out of this crazy life alive.

    I know easier to do some days than others. On those bad days, come hang out with us. We know what you're goint through.

    feelingfeline:  I love your avatar. Who is that cute kitty? Smile

  • feelingfeline
    feelingfeline Member Posts: 5,664
    edited May 2013

    Maxine, I love your crashing waves avatar too! My cat has attracted no end of fans - isn't it great! Although I've had cats as part of my home all my life the photo is not mine, it came from google images.

    Best wishes Susanna

  • LindaKR
    LindaKR Member Posts: 1,577
    edited May 2013

    I saw my BS this week for the 3 year check up.  He said that with my stage and type of cancer he felt that if I hadn't had a recurrence by now than I probably would not.  He said that normally he sees the recurrence in the first 2-3 years.  So - with cautious optimism - YIPPPEEEE!!

Categories