94.8% Mortality Rate? Lovely.

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MoniqueG
MoniqueG Member Posts: 15
edited June 2014 in Stage III Breast Cancer

I saw in another thread that someone had mentioned about a breast cancer recurrence calculator.  Probably not my best idea, but I went to check it out.  My onc had told me that there's a 60% chance of my cancer recurring within 5 years, so I thought this calculator might show better, more up-to-date results. 

After putting in all of my info, age, etc, etc, it says that there's a 94.8% death rate over 15 years.  Isn't that nice?  It makes it sound like I'm already stage IV, and I'm NOT.  I am NED, but apparently have only a 5% chance of keeping it that way.  I think I'll stick with what the doc told me.

Comments

  • yellowdoglady
    yellowdoglady Member Posts: 349
    edited June 2011

    Take that shit with a fistful of salt, my friend.

    Percentages mean nothing!  You are one person.  Not a sample of 100 people.  If your doctor says you have a damn good chance of beating the coin toss, well, listen to that.

    I was told starting out that I had a 34% chance of living five years.  Nearly three years later, I am clean and hoping to stay that way, and the docs now think I will even make it to live happily ever after.

     My point is this.  DO NOT listen to stuff that says you will die when your team says you are doing better than that.  Our job is not to decide to die, but to decide to live.  

  • kimber3006
    kimber3006 Member Posts: 586
    edited June 2011

    Listen to your onc, who knows the details of your case and treatment, not some website that appears to have a glitch!

  • Pure
    Pure Member Posts: 1,796
    edited June 2011

    Yeah that is not your stats..Maybe it is without tx but 6 percent chance you will beat the disease? Yeah..no... that is not close to correct. What calculator did you do?

  • JFV
    JFV Member Posts: 795
    edited June 2011

    Hi-  I used a survival calculator that shows an 84% survival with treatment.  I have been told by one Onc my survival rates are between 40% and 84%.  ( I have since change oncs since she was getting me confused with another patient.)  But, the point is even on my worst day my survival rates are waaayyy better than what your calcualtor says.

    Just read an article by the American Cancer Society that mentions that in developing countries cancer is often not treated because they have so many other health and social concerns to deal with and the survival stats are terrrible.  So, if your stats are from a world wide data base chances are they are skewed to the negative.

  • karen1956
    karen1956 Member Posts: 6,503
    edited June 2011

    Monique....I agree with what the other gals said....the calculator only works with numbers...your onc knows you, your Tx etc and I would not focus on the numbers...focus on the you and how are doing and each day you are here is another day that you beat the beast!!!!  There are lots of us stage 3 gals still kicking after 5 years (see that thread) and 10 and more.....

  • jennyboog
    jennyboog Member Posts: 1,322
    edited June 2011
    I've heared those stats mix in all ages and the type of bc in one big pot.  It's not specific for your age, tx type, etc.  Don't give the results a second thought and stay away from those calculators Smile 
  • Pure
    Pure Member Posts: 1,796
    edited June 2011

    Do you realize that SURGERY alone -REMOVING THE CANCER-cuts your chances by 30% then chemo, rads, ovarion suppression, als ( if applicable) and of  course also now zometa.

    I know there are new girls reading this thread and getting scared so I want people to know that that stat of 94% doesn't even make sense.

  • Suze35
    Suze35 Member Posts: 1,045
    edited June 2011

    I'm Stage IIIc TN with initial chemo-resistance, and even MY odds aren't that low! 

    I would agree that you have to be careful when looking at stats on any particular site - you really don't know what factors are being taken into account.  Those numbers usually include women who don't do chemo, who haven't followed through on all treatment, who don't have access to the same care as other women, etc.

  • KerryMac
    KerryMac Member Posts: 3,529
    edited June 2011

    I'm just adding my 2 cents - that is not a realistic statistic.

    Is it possible you mis-read and that number is without treatment?? I don;t even think that stat applies to Stage IV.

  • 1WonderWoman
    1WonderWoman Member Posts: 2,065
    edited June 2011

    Monique: I agree with Kerry...perhaps there was a misunderstanding?   If you give me the address I will run my numbers also.

    BTW, only listen to and read the stuff that makes you feel good and talks about progress they are making with bc and all the good things they now do for us. You don't even know-there could be a cure in 15 years.  Like the tag in my signature reads "I have been through many things in my life, some of which actually happened" which is Mark Twain.   Don't get concerned with conjecture and mortality rates.  Get concerned with living and enjoying yourself.  I don't know about you but I have no idea when the end is so I will keep living each day happy and healthy until that changes!!  

    Keep singing that old song "Born to be alive!"  That should help you through the rough patches!

  • MoniqueG
    MoniqueG Member Posts: 15
    edited June 2011

     Thanks, everyone.

    Here is the stupid calculator I used:   http://www.lifemath.net/cancer/breastcancer/outcome/index.php

    I put in the following info.  Age: 39,  tumor diameter 12cm,  positive nodes: 4, nodal detail: edema/ulceration of the skin of the breast, ER+, PR+, Her2-, Histological type: Inflammatory.

    Hopefully I just did something wrong or used the wrong calculator.  The 60% recurrence rate that my onc told me was just from him lumping me in with all stage III breast cancers, but unfortunately I'm kinda at the "bad" end of stage III, which means that for me, it's likely higher than 60% - the same way that it's likely lower than that for a lot of other stage III ladies.

  • clariceak
    clariceak Member Posts: 752
    edited June 2011

    I'm also at the "bad" end of stage III with vascular invasion and a mammary node so I refused to use any calculators.  I really didn't want to see any statistics and even told my onc not to discuss prognosis with me.  I only wanted to hear about her plans for treatment. 

    As others have said those calculators lump everyone together regardless of other health problems, level of care etc.  It truly is a crap shoot for us. I see you had a clear PET in December. That's excellent!  Did your onc ever discuss Zometa with you?  Although the evidence is not clear, many of us in Stage III are receiving it as a preventative measure.

  • MoniqueG
    MoniqueG Member Posts: 15
    edited June 2011

    clariceak, you are very wise - much wiser than I for staying away from the stinkin' calculators.  I won't do that again.  :smacks self upside the head:  And yes, I'm on Zometa.  It was recommended by Dr. Cristofanilli at Fox Chase, so my local onc agreed to it.  I just do an infusion once every 6 months.  So far, I've just had one, and am due for the next in September.  I also just had a bone scan due to persistent rib pain, and it came back clear, so I'm in good shape, really!!

  • Letlet
    Letlet Member Posts: 1,053
    edited June 2011

    i remember the week after my diagnosis, i used that calculator - big mistake. I ended up sobbing and crying saying why did God give me my babies if I wasn't going to be around for them. I was completely devastated by those stats...I avoid them like the plague now and try to enjoy my life.

  • KerryMac
    KerryMac Member Posts: 3,529
    edited June 2011
    Monique, you just did it as a survival graph with no treatment!! If you go into therapy section, it shows with your stats that with therapy, your 15 year survival is 67%.
  • KerryMac
    KerryMac Member Posts: 3,529
    edited June 2011

    But I also totally agree with Clarice, that survival stats on the whole are useless!!

  • Pure
    Pure Member Posts: 1,796
    edited June 2011

    lol yeah you did the wrong thing..You need to go to Breast Cancer  then click on therapy then run your numbers. Your stats are around 70%... How come you only had 4 nodes removed? Is that all you had?

  • calamtykel
    calamtykel Member Posts: 1,187
    edited June 2011

    Monique - did you use Lifemath.net?  If you did, make sure you are looking at the SURVIVAL and not MORTALITY because you can set it either way!  There are two different graphs.  I think you may be misreading something - unless you are stage 4 I don't understand how this calculator is pulling this up -

    If not, then toss out that web page and ignore it.  I can't tell you how many people I've heard of who've been told they have six months to live, or a year or whatever and years later they're still alive.  If you're really upset about it, ask your oncolgolist to go through your tumor details (all those little T numbers whatever they are) and ask where he's getting HIS percentage from.  My experience is that they're pretty honest - if they thought you only had a 5 and a half percent chance of survival, he'd tell you that I believe!

  • calamtykel
    calamtykel Member Posts: 1,187
    edited June 2011

    Monique!  I just played around with Cancer Math.  DID YOU USE THE THERAPY CALCULATOR??  I think you're looking at survival WITH NO TREATMENT!!

     I put in the statistics you gave in your posting - I didn't know the grade, so I put in Grade 3.  I didn't know what kind of therapy you had, but  stuck in what I knew I had, AC-T - I think you said you had something different but I wans't sure so I just wanted to see what the "standard" treatment would pull up. 

    I'm only seeing 37% chance mortality in 15 years with tamoxifen and ac-t..

    Don't pull up the survival calculator - look at the THERAPY calculator! under the pulldown under Breast Cancer!

  • elmcity69
    elmcity69 Member Posts: 998
    edited June 2011

    i ignore the stats - they don't matter, i think, because when we beat them, we beat them; and God forbid we don't, we have bigger fish to fry. but i'm not trying to minimize the fear or gatekeep your feelings. i'm just trying to send support and hope - you are HERE today, and surviving - and i think your plan to "stick with what the doc told me" is a good one!

    sending you hugs and energy.

    xo

    j

  • thegoodfight
    thegoodfight Member Posts: 560
    edited June 2011

    Monique,

    I have just run through this thread quickly and I agree with all the wonderful advice you have been getting.  But I do have a question, when I looked at your post of what you  entered into the calculator and then I checked your signature line to see if I misread the size of your tumor.  Is the size really 12 cm or could it be 1.2 ?   I had a fairly large tumor and it was 3.5 cm.  I am hoping it was a typo.

    But most importantly, listen to this support group.  Stay away from the negative stuff on the web.

    Keep the postive thoughts.............Caren

  • MoniqueG
    MoniqueG Member Posts: 15
    edited June 2011

    THANK YOU to all of you who have told me I used the wrong freaking calculator.  I like the odds you came up with so much better, LOL!

    Pure - I only had 4 nodes removed because that's all they could find.  The rest had been obliterated by all the chemo beforehand.

     Thegoodfight - I too wish that was a typo, but nope.  I really did have a 12cm mass.  It was the entire upper portion of my very swollen breast, and had gone through to the skin.  

    Okie dokie, I will be staying away from any other expiration date predicting calculators.  Thanks, everyone!

  • lkc
    lkc Member Posts: 1,203
    edited June 2011

    sweet girl. PLEASE don;t look at those outdated stats. They are old  as sh*t and are not reflective of current txs and other med conditons. totally useless. 

    I had 12 pos nodes, and I am fine 6 yrs later !

  • Texas357
    Texas357 Member Posts: 1,552
    edited June 2011

    We won't know the effects of current treatments for many years -- those stats reflect the type of treatment that women had 5 to 10 years ago. Also, I've heard of women with Stage 0 cancer who went to get a recurrence, and of women who are Stage IV who have lived for 20+ years. It's easy to drive yourself crazy with statistics but as others have said: they aren't you. And until they can design a study that factors in all of your specific details, they will never be you.

  • Karen09
    Karen09 Member Posts: 320
    edited June 2011

    That number is too high - it can't be right.  That's what I tell myself every time I hear something I don't like about breast cancer.  This time I really don't think it's true though.  LOL

  • pejkug3
    pejkug3 Member Posts: 902
    edited June 2011

    I cannot add to what all the other wise women have posted before me.

    I just wanted to tell you what my RO said to me yesterday when I asked him about statistics on soem things.  He said, "Well, for you, it's either 0% or 100%"

    Yeah, yeah...statistical math is that way.  It's either going to come your way or it's not.

    Don't spend a moment worrying when you could be living and enjoying life!

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