Rates of recurrence free survival

HapB
HapB Member Posts: 527
in Breast Cancer #1

Does anyone know where I can get those stats?  Do others really consider the cure rates or do patients just usually go for doctors recommendations?  It seems like the more questions I ask, the fewer answers I get. I guess I am just overly logical. 

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Comments

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #2
    They are either 0 or 100%

    I say that because for each individual, they really don't know which percentage you're in, the one without recurrence of the one with recurrence.  You don't have a number that tells you that you have X percentage chance of having a recurrence, just that of however many women studied with the same grade and stage as you, X% had a recurrence and X% didn't.  I don't know where the recurrence percentages are, most are survival rate statistics which is a little different.  Basically they're higher percentages for lower stage, grade and lesserr for higher stage, grade and whether there was node involvement and how many and type and on and on and on.    If you ever find recurrence scores, let me know.  Did you have an oncotype test?  (early stage, node free?).  The come with stats based on the genomic testing they do which is relative to recurrence rates in a different site after 10 years, not survival rates.  They've got to be somewhere for all stages, types, etc.

     

  • tufi000
    tufi000 Member Posts: 745 Member
    #3
    Beware!

    All you will find are matrices built by doctors and Big Pharma ( depending on their motivation and/or funding). Putting you in one of those little boxes is the worst! According to all of the matrices I saw, I should have died 12 years ago. That was in 2003.

    DO NOT TAKE ANYTHING YOU SEE ON THE INTERNET SERIOUSLY. A better use for that is to help you create very specific questions for your doctors.

     As we always say here, everyone is different. My doctors agree. I am very fortunate. Hoping you can get the inbfo you need to feel comfortable with a prognosis

  • meschellejensen
    meschellejensen Member Posts: 117
    #4
    HapB

    I  had genetic testing done (Mammoprint), I was given a "score."  I am "luminal type A."  They provide statistics for people with my genetic profile (I have a 90% chance of not having a recurrance after lumpectomy and radiation).  Tomox would reduce MY chance of a recurrance by 40%- 50%.  That means that Tomox reduces my chance of a recurrance by 3% to 5%. Then I subtract the 1% increased chance of uterine cancer to come up with a potential benifit of 2%-4%.  I am trying to decide if this is enough benifit to make it worth it to take Tomox.  I know that you are making decisions about different things, but I would ask for a Mammoprint.  Maybe ONCO DX does the same thing.  I am not sure...

  • HapB
    HapB Member Posts: 527
    #5
    tufi000 said:

    Beware!

    All you will find are matrices built by doctors and Big Pharma ( depending on their motivation and/or funding). Putting you in one of those little boxes is the worst! According to all of the matrices I saw, I should have died 12 years ago. That was in 2003.

    DO NOT TAKE ANYTHING YOU SEE ON THE INTERNET SERIOUSLY. A better use for that is to help you create very specific questions for your doctors.

     As we always say here, everyone is different. My doctors agree. I am very fortunate. Hoping you can get the inbfo you need to feel comfortable with a prognosis

    Statistics

    I know what you mean, but there must be published efficacy rates that are officially recognized somewhere. 

  • HapB
    HapB Member Posts: 527
    #6
    Mesch

    I hope that you are doing well with the radiation! How's it going?

    And did you do the chemo? You may have told me aready, but I still have chemo brain from the last cancer treatments!   This is hard stuff. I didn't have the Mammoprint. There is a waiting list for genetic counseling. 

  • HapB
    HapB Member Posts: 527
    #7
    Double Whammy said:

    They are either 0 or 100%

    I say that because for each individual, they really don't know which percentage you're in, the one without recurrence of the one with recurrence.  You don't have a number that tells you that you have X percentage chance of having a recurrence, just that of however many women studied with the same grade and stage as you, X% had a recurrence and X% didn't.  I don't know where the recurrence percentages are, most are survival rate statistics which is a little different.  Basically they're higher percentages for lower stage, grade and lesserr for higher stage, grade and whether there was node involvement and how many and type and on and on and on.    If you ever find recurrence scores, let me know.  Did you have an oncotype test?  (early stage, node free?).  The come with stats based on the genomic testing they do which is relative to recurrence rates in a different site after 10 years, not survival rates.  They've got to be somewhere for all stages, types, etc.

     

    Measurement

    They measure by recurrence free survival and then survival. 

    It makes no sense to me that I would embark on any medication, let alone chemo, without knowing the efficacy. The last time I had chemo it was very clear cut. The tumor was inoperable and chemo had a 90% 5 year recurrence free survival rate. No brainer. I couldn't wait to get the chemo!  This just is not clear to me at all. Not at all.  So, I am 65. I don't really expect to live another 15 years, based on all my body has been through and that I aready had 2 cancers, one of which is rare and incurable, but slow growing.  So, given that i probably only have another 10 years left,is it worth it to be sick for at least one of them and maybe more just from the treatments? My cancer was triple positive, but less than 2 cm and no node involvement, grade 2. So, I think the chance of 5 yr recurrence is low anyway. If chance of recurrence free survival(RFS) is 80% with no treatment and 83% with chemo, radiation, and 5 yrs. of Tamoxifen, is it worth being so sick and the side effects. I keep coming back to I NEED FACTS. The cancer industry is big business and it is so easy to just take treatments whether they actually work or not. This is driving me NUTS....ugh

  • Apaugh
    Apaugh Member Posts: 850 Member
    #8
    Hap...

    I wish someone could give you better stats to ease your mind.  If you find them, let us know.  I think we would all be interested in a sure thing.  Unfortuanatly, it is all still a crap shoot and you fight and go on living. 

    It is a hard decision only can make.  I can understand your trepidation to it.  You have been there, done that and overwhelmed to hear you have it somewhere else.  My heart goes out to you.  I will continue to keep you in my prayers

    Hugs,,

    Annie

  • tufi000
    tufi000 Member Posts: 745 Member
    #9
    HapB said:

    Statistics

    I know what you mean, but there must be published efficacy rates that are officially recognized somewhere. 

    A box

    This is not possible as these conclusions only look so deep. You have particular variables that aren't even considered as there are not enough data sources to include them in their bigger picture also they produce crossover results complicating the big boxes of generalizations.

    The smaller details that influence such a resolution can only be considered by your doctor to come to the most accurate conclusion. Like I said before, use what you find to formulate the specific questions to ask your doctor

    For instance. I had lymph node involvement. 15 out of 17 were positive. Anywhere you look it wiull say I will have a recurrence and possible die.  I am still here.

  • HapB
    HapB Member Posts: 527
    edited May 2017 #10
    tufi000 said:

    A box

    This is not possible as these conclusions only look so deep. You have particular variables that aren't even considered as there are not enough data sources to include them in their bigger picture also they produce crossover results complicating the big boxes of generalizations.

    The smaller details that influence such a resolution can only be considered by your doctor to come to the most accurate conclusion. Like I said before, use what you find to formulate the specific questions to ask your doctor

    For instance. I had lymph node involvement. 15 out of 17 were positive. Anywhere you look it wiull say I will have a recurrence and possible die.  I am still here.

    Tufi00

    Thanks. Did you have a recurrence? I do understand statistics very well and understand that they are an analysis of groups. Still it is the best we have to make decisions.   I did find 2 calculators in which a person plugs in their individual breast cancer characteristics and age and it gives you the statistical analysis.   Doctors use statistics to help guide their treatment options and I think patients should be in on the decision with all the information that we can have. I will post the links when I get a chance. 

  • tufi000
    tufi000 Member Posts: 745 Member
    #11
    HapB said:

    Tufi00

    Thanks. Did you have a recurrence? I do understand statistics very well and understand that they are an analysis of groups. Still it is the best we have to make decisions.   I did find 2 calculators in which a person plugs in their individual breast cancer characteristics and age and it gives you the statistical analysis.   Doctors use statistics to help guide their treatment options and I think patients should be in on the decision with all the information that we can have. I will post the links when I get a chance. 

    here we go

    No recurrence. My team was very aggressive in monotoring me since "statistics" weren't optimistic. They constantly checked all possible met sights and blood and and and with each doc on the team managing the ones in their specialty. I had double mast, chemo, rads. Been on arimidex since 2003. All testing results have been fine. I feel fine.

  • HapB
    HapB Member Posts: 527
    edited May 2017 #12
    tufi000 said:

    here we go

    No recurrence. My team was very aggressive in monotoring me since "statistics" weren't optimistic. They constantly checked all possible met sights and blood and and and with each doc on the team managing the ones in their specialty. I had double mast, chemo, rads. Been on arimidex since 2003. All testing results have been fine. I feel fine.

    That is fantastic!!!!

    I am so glad to hear that! May I ask what the specifics of your diagnosis were? Her2? 

  • tufi000
    tufi000 Member Posts: 745 Member
    #13
    HapB said:

    That is fantastic!!!!

    I am so glad to hear that! May I ask what the specifics of your diagnosis were? Her2? 

    A few details

    Stage 2B,3C ER+ her2 -  Aggressive  FYI Chemo didn't like me and didn't do as much as they wanted. Dang that Red Devil! He must have seen me as a member of the family and wanted me to come home!

  • HapB
    HapB Member Posts: 527
    edited May 2017 #14
    tufi000 said:

    A few details

    Stage 2B,3C ER+ her2 -  Aggressive  FYI Chemo didn't like me and didn't do as much as they wanted. Dang that Red Devil! He must have seen me as a member of the family and wanted me to come home!

    Stopping treatment, did

    When they stopped your chemo with AC, did they offer another chemo? 

  • tufi000
    tufi000 Member Posts: 745 Member
    #15
    HapB said:

    Stopping treatment, did

    When they stopped your chemo with AC, did they offer another chemo? 

    nope

    They kept going and it was combined with another at the same time. While it did do good, they didn't get the tumor shrinkage they wanted prior to surgery

  • HapB
    HapB Member Posts: 527
    #16
    tufi000 said:

    nope

    They kept going and it was combined with another at the same time. While it did do good, they didn't get the tumor shrinkage they wanted prior to surgery

    Tufi

    My MO has told me that if I start the chemo regimen and I can't handle it, they will stop. My concern abou that is that nobody knows if the possible damage to the heart is irreversible for someone my age.  There are so many risks with these particular drugs.  

  • tufi000
    tufi000 Member Posts: 745 Member
    #17
    HapB said:

    Tufi

    My MO has told me that if I start the chemo regimen and I can't handle it, they will stop. My concern abou that is that nobody knows if the possible damage to the heart is irreversible for someone my age.  There are so many risks with these particular drugs.  

    hmmmm

    My first chemo infusion put me in a private room for a week. BP went in the toilet, etc. Then we continued as it wasn't the drug, it was the 2nd day after shot I didn't get on time and I got an infection. Sure there are many concerns but I never had any major discomfort or side affects.  It is a 2-sided coin. Flip it the way you want. They were more concerned about heart and lung damage for me from the rads. They managed to scope it well and avoid both

  • meschellejensen
    meschellejensen Member Posts: 117
    #18
    HapB said:

    Mesch

    I hope that you are doing well with the radiation! How's it going?

    And did you do the chemo? You may have told me aready, but I still have chemo brain from the last cancer treatments!   This is hard stuff. I didn't have the Mammoprint. There is a waiting list for genetic counseling. 

    HapB

    I am not doing chemo, it was not recommended for me based on my genetic testing.  Radiation is going okay although the nerve pain is back.  It had stopped for about two weeks before I began radiation, so I don't know if it is a new symptom of radiation or if radiation just irritated the same nerve injury from my surgery.  I will see my RO tomorrow, so I will ask her.  

    I read in one of your posts that you have two weeks to make decisions, that is a good thing.  These are such important decisions and often we have very little time to make them! 

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #19
    Survival Rates

    Survival rates based on studies are just that.  My sister is a 14 year plus survival of triple negative breast cancer.  She underwent radiation, chemo and a lumpectomy.  One of my cousins' son survived a battle with lukemia.  Then her mother was diagnosed with esophageal cancer and fought it hard with all the treatments but lost her battle.  My son was diagnosed with kidney cancer, the worse one, and he is a 9 plus year suvivor of it with only the kidney being removed and no other treatment, my husband on the other hand lost his battle after a five year fight.  He was supposed to be a survivor because of no spread with the initial diagnosis but a year after surgery was diagnosed with a second primary which killed him.  My DIL's aunt fought breast cancer for over 10 years but is now loosing her battle and she opted for no treatment other than having her breast removed.  She took one chemo treatment and didn't like the effects so stopped and went natural in her treatment.   Doctors or studies don't know because each and every individual is different in how they respond to treatment.   Many opt for no treatment after surgery and survive, many opt for every treatment there is but don't survive.  Doctors are not God.

  • HapB
    HapB Member Posts: 527
    #20
    Decisions about treatment

    I am sorry for your losses. This is the third unrelated cancer for me, so I know the battles well. When we make decisions about cancer treatment, we have to go with the best information that we have, not simply act in desperation and fear. If someone tells you that they have a treatment which has serious side effects, could cause congestive heart failure or leukemia, and is sometimes lethal and only 1/ 100  patients with your type of cancer derives a benefit from it, would you take it? How about 2/100,  or 3/100?  That is the circumstance that I am in this time around. Last time I had chemo it was a no brainer, it was 80-90% of patients are cured with the treatment. I am faced with a much tougher decision this time. 

  • HapB
    HapB Member Posts: 527
    #21
    meschellejensen said:

    HapB

    I  had genetic testing done (Mammoprint), I was given a "score."  I am "luminal type A."  They provide statistics for people with my genetic profile (I have a 90% chance of not having a recurrance after lumpectomy and radiation).  Tomox would reduce MY chance of a recurrance by 40%- 50%.  That means that Tomox reduces my chance of a recurrance by 3% to 5%. Then I subtract the 1% increased chance of uterine cancer to come up with a potential benifit of 2%-4%.  I am trying to decide if this is enough benifit to make it worth it to take Tomox.  I know that you are making decisions about different things, but I would ask for a Mammoprint.  Maybe ONCO DX does the same thing.  I am not sure...

    Mesch

    My tumor was 1a also, but triple positive. Was your tumor Her2 + ?   I have a similar benefit ratio and not sure what the heck to do. Did your doctor help you decide? 

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