WHAT IS YOUR PROGNOSIS?

Options
2»

Comments

  • NativeMainer
    NativeMainer Member Posts: 10,462
    edited December 2009

    There's nothing wrong with being concerned with the prognosis stats--I think we all go through that phase, it's part of the information seeking we all do.  It gives us something we can wrap our head around (sort of) to help us decide what treatment option(s) to persue. So go ahead and play with the sites that calculate stats based on pathology and treatment options, but keep the nubmers in perspective--stats apply to large groups of women only, not to an individual woman.  Like someone has already posted, each of us has either 100% or 0% chance of recurrence.  It's only when you put a whole bunch of us together that you get other numbers. 

    Merry Christmas to all, and May God Bless Us, Every One! 

  • ccbaby
    ccbaby Member Posts: 985
    edited January 2010

    Diane....I am not offended by your post..if I was, then I would never have clicked on it to read the all of the answers. Thank you for posting it...I have wondered what onc have told other women too in comparison to what mine told me.  I think every case is different and everyone's 'prognosis' is different too. I also believe it has a lot to do with your lifestyle before and after bc. I have changed a lot of things regarding that...i.e  eating more organic foods, etc in hopes that it can help my prognosis.

  • smithlme
    smithlme Member Posts: 1,322
    edited January 2010

    Diane,

    I never asked my Onc about my prognosis, stats or percentages. For me, it's just numbers and words. I can only live one day at a time and I get to chose how I live it. After 2 bouts with BC, my "perspective" on life is more important to me than a prognosis...if that makes sense to anyone. Each day is truly a gift and I cherish each and every one. If I have to ride the cancer train again, I will deal with it when I need to, knowing I have done everything I can to keep living...

    Linda

  • hulatalulala
    hulatalulala Member Posts: 8
    edited January 2010

    What test is you oncologist using to make those prognostic evals?  Is it oncotype dx?  If so, what was the diagnostic # (not % but #)

  • Sunflower64
    Sunflower64 Member Posts: 166
    edited January 2010

    Not sure but will check for you.

    Diane

  • marlenet
    marlenet Member Posts: 345
    edited January 2010

    Diane

    Good question. Glad you started this.   No one is 100% free  for any disease. or any incident in life. My onco did talk to me about my Oncotype test results and my prognosis.  I was glad he did. I try not to dwell on any of this but i do at time and may always do so. 

  • maltomlin
    maltomlin Member Posts: 343
    edited January 2010

    Hi

    I think we all go through the stage of looking at the stats. I was dx May 08 and just couldn't ask the onc for my stats (and still haven't). I was obsessed with knowing what my chances were for a recurrence, worried about it constantly, googled 'til I scared myself silly but couldn't ask the onc.

    I'm one year out from treatment and have realised that it's either 100% or 0% - nothing in between. Whatever the future holds I'm going to MAKE THE MOST OF IT. I may be OK for the next 20 years or I may have a recurrence in the next few months, but I'm not going to waste any time worrying about it. I'm going to make the most of whatever time I have - be it 20 years or 1

    Mal

  • bookerdust
    bookerdust Member Posts: 18
    edited January 2010

    Diane 64,

    We have the exact same thing, almost right down to the tee.  My tumor was 1.5 centimeters, Grade IIA, Grade 3.   I did the lumpectomy due to the surgeons seeming to push this attitude of "lumpectomy with radiation has the same survivial rate as mastectomy."  NOTE:  Survivial rate, not recurrence rate.

     They do not imply 'recurrence', because "there is no crystal ball", as I was told.

     Recurrence will USUALLY appear in the other breast before going somewhere else, IF it was to return, and with high risk, (that is the first two years), and then you count your blessings for year after year for " distant" from there. That is not ALWAYS the case, but more than likely the other breast first.

     I just wanted that tumor out so bad, since I was high risk, which means FAST GROWING, so I followed the doctors choice. 

    Having fibrocystic breasts, however, is how I found my tumor.  An ache.  The mammo missed it.  Fibrocystic breasts are white on the xray.  Tumors are white. No WONDER they missed it. My last mammo was diagnosed as highly dense breast tissue.  Now why didn't they order an MRI for more testing?  Instead, months went by, it grew, and now I have a 19% distant risk due to one lymph node out of 12 being positive.

     I went to another breast surgeon, more well known to working only with the breast, not a general surgeon. I was told that since I only had ONE node, that she would consider that I would be on the LOWER range of that scale, possibly bringing the range down another 3%.  That made my day.

    We will always worry.   Every blood test right now.............. I worry.  I am not like alot of women that can not worry about 'today' or 'tomorrow'.  I cried and asked God WHY?  I have enough health issues, and now THIS?

     So, I decided on a bilateral mastectomy, and I have never regretted it, due to the fact that I would never trust another mammogram reading again.

     Maybe once my reconstruction is completely over, this 'fear' will diminish.  I sure hope so.

     Good luck. I understand.

  • diana50
    diana50 Member Posts: 2,134
    edited January 2010

    i have not asked my oncologist about prognosis. i just figure if i relapse that will be my statistic in real life and if i keep NED that is the otherside of the statistic of which i am currently living at all most 8 years NED next month.

  • Makratz
    Makratz Member Posts: 12,678
    edited January 2010

    Good for you Diana!! I wish you 80 more NED years!

  • bookerdust
    bookerdust Member Posts: 18
    edited January 2010

    Good for you Diana 50.  You have beat the odds, in my book, and I am soooooo happy for you.  I see in your picture you are on a bike.  That is one thing my body lacks is exercise, but I have other pain issues, that exercise is hard for me.  Keep it up, SOMETHING is working for you.   Did you change to a healthy diet, too?

  • diana50
    diana50 Member Posts: 2,134
    edited January 2010

    bookerdust and makraz: thanks for the kind words.

    bookerdust:  prior to my BC diagnosis i was a cyclist and a runner.  so, once i started treatment i continued to cycle...sometimes just around the block. the 5 and half years of arimidex almost did me in but i did continue to cycle. no more running. lol  on the stage III forum there is thread for fitness. i changed my diet right after i finished treatment; mostly hormone free things; lots of veggies and fruit.  now, i eat pretty much whatever i want which includes from the 4 groups. i am sucker for cheeseburgers and fries tho.  i try to limit the foods not so good and eat alot of fruit. i also take a multivitamin and vit D and calcium. that is about it. it took awhile for my body to heal from chemo, rads and the arimidex was hard the whole time i was on it. i feel good now and continue to cycle every day. (i live in southern california which makes it easier)

    well, hang in there, one day at a time...before you know it...lots of years will have passed.

  • just4ann
    just4ann Member Posts: 112
    edited January 2010

    Here is the irony.  In May 2009 I had a test to determine the likelihood of having a heart attack within the next 10 years.  Since my father had died of a heart attack at age 47 and I was 48 I was somewhat obsessed with "how much longer I had", so certain that a heart attack was right on my horizon.  The test results showed that I had less than a 10% chance of having a heart attack within the next 10 years.  I can't tell you how thrilled I was.  The weight of the world was lifted from my shoulders.

    In June 2009, my husband lost his job of 21 years when the company downsized.  Not only did he lose his job, but with it our health insurance and financial security.  I was devastated.  Our world had come crashing down.  

    In August 2009 I was diagnosed with Stage IIb breast cancer. September I had a bilateral mastectomy.  October I started chemo.  I will finish my last chemo treatment next Monday. I know I still have a long road ahead of me.  And I am still struggling with the fact that life will never be the same.   But I now know what is important.

    The point of sharing all of this -- no one knows what the future holds. Appreciate what you are given today.  Life doesn't come with any guarantees, no matter what anyone tells you.  

  • Ezscriiibe
    Ezscriiibe Member Posts: 598
    edited January 2010

    ^ ^ ^ ^ ^ ^

    I like the way she thinks!

  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2010
    Have your oncologist go on www.adjuvantsite.com (it is a site for physicians), and have him/her enter all the information, and it will give out the statistics for someone with your exact diagnosis, what they would be with various treatments. Looking at my odds of reoccurrence with and without chemo, really made me know that I had to do it. Of course, like others have said, in the end each of us is 100% or 0. Good luck! 
  • Joviangeldeb
    Joviangeldeb Member Posts: 213
    edited January 2010

    my oncologist told me I have a 79% chance of being alive and cancer free in 10 years.  But its just a #.  I try not to dwell on it, but I do thank the Lord for every new day he gives me.

    This has been a very interesting thread to read through.

  • janincanada
    janincanada Member Posts: 258
    edited January 2010

    My understanding is that the percentage that they give you pertains to you being alive after 10 years.  It does not look at reoccurrances so the percentage incleds individuals who have had reoccurrances but are still alive at the end of the ten years.  I specifically asked my Onc. in order to wrap my head around what the numbers meant.

  • MelG
    MelG Member Posts: 23
    edited January 2010

    I was very interested in the *stats* too.   I was a stage 3(a) - when I was first diagnosed I spent days on-line and in the library researching everything I could get my hands on about breast cancer and cancer in general.   I will say the most encouraging thing about all this for me at that time was realising how far we have come with breast cancer treatment and improved survival over the past few decades.   My *10-year survival* was estimated at 67%.   I'm coming up to 7 years this July, so am well on my way...

    And yes, I agree that it's either 0% or 100% but as someone who needed to know "everything", that didn't quite do it for me!     

    Regards,

    Mel G

  • havehope
    havehope Member Posts: 503
    edited February 2010

    My onc told me not to read the statistics. All of them are biased by the party who is conducting the study. She told me that based on her experience of 20+ years recomends chemo. She supported me on my decision for prophy mastectomy and told me that I have a very good chance of being NED for the rest of my life. She runs the markers every 6 months, she believes in them. My father had colon cancer and his doctors run the markers, too and that was 15 years ago.  My surgeon recommended chemo as well and after the second mastectomy he told me that he cannot say that I will be 100% ok but he gave me 99% also based on his 40+ years experience.I hope they are right.  It's been almost 2 years (march 2010) since I found the lump and so far I am NED.

  • deborye
    deborye Member Posts: 7,002
    edited January 2010

    I was told I have a 12% chance of reoccurance.  I would like to have heard 0%.

  • HappyTrisha
    HappyTrisha Member Posts: 614
    edited January 2010

    Here's the problems with stats, as I see it.  If you are told you have a certain percent chance of reoccurance, the other side of the coin is that you always have a certain percent chance of NOT having a reoccurance.  If you're told you have a 50% chance of reoccurance, that automatically means that there are 50% in your same group who will not reoccur.  Can you ever know what group you're in?  Naturally not.  Even at 3%-97%, someone has to make up the 3%!

    I have already decided that I have beaten breast cancer.  That's all I need to know.  I refuse to spend one second of my life wondering whether I may fall into any percent other than 100%!  To do otherwise indicates that breast cancer controls me.  And that just isn't the case.

  • deborye
    deborye Member Posts: 7,002
    edited February 2010

    Saw my onc Jan 22, everything is just fine, she says I have a very good outcome. 

Categories