When do we start counting?

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belleb
belleb Member Posts: 170
edited September 2014 in Life After Breast Cancer

I apologize if this has been asked and answered already, but when you hear stats like "recurrence rates are highest in the first five years", for example, when does that five years start? Diagnosis? End of chemo? Last surgery? Is there a steadfast answer to this or does it vary?

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  • Meadow
    Meadow Member Posts: 2,007
    edited July 2014

    belle I always thought it was from diagnosis

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  • belleb
    belleb Member Posts: 170
    edited July 2014

    That would be nice!

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  • fizzdon52
    fizzdon52 Member Posts: 568
    edited July 2014

    I always thought it was when you finished treatment. Because technically when you finish treatment you're not supposed to have cancer anymore?

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  • belleb
    belleb Member Posts: 170
    edited July 2014

    In my case, I had my tumor removed in January, had CT and Bone Scans showing no distant mets and my nodes were clear, though, so technically wouldn't I be cancer free from that point on? I just finished 20 weeks of chemo and then will have a BMX in 2 weeks, so maybe I count from there?? It's confusing lol

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  • edwards750
    edwards750 Member Posts: 3,761
    edited July 2014

    It's from the DX. Typically treatment isn't for  months afterwards so it wouldn't  make sense to start the timeline after that. My DX was in Jan 2011; treatment ended in July. My doctors use January as their starting point. DX. In my case I am 3 1/2 years out from my DX so on yearly mammogram starting this year. 

    Diane 

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  • Lily55
    Lily55 Member Posts: 3,534
    edited July 2014

    its from diagnosis and depends on type of cancer. Lobular tends to recur after furst five years

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  • jojo2373
    jojo2373 Member Posts: 662
    edited July 2014

    This has always been confusing to me too.  I am 2 years from my dx, however 18 months from final chemo in which after i still had residual cancer.  My lumpectomy and surgery then removed the remaining cancer 17 months ago.  At that time my BS said you need rads cause you still probably have microscopic cancer remaining.  So 16 months ago I should have been totally cancer free.  I have been saying 16 months.

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  • wintersocks
    wintersocks Member Posts: 922
    edited July 2014

    My surgeon told me from the point of removal (surgery) of the tumour. I had neo-adjuvant chemo, at the last chemo I technically still had cancer. as I had a incomplete response.  So  I am 2 years out in August.

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  • FireKracker
    FireKracker Member Posts: 8,046
    edited July 2014

    I count from the time I found my lump

    Maybe I'm being unrealistic but that puts me back to Nov.2009..

    I didn't finish rads till Sept 2010....because of changing drs.

    I like the 2009 better..

    It's gonna be 5 yrs. for me soon.....yay.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2014

    It depends on who is doing the calculating, what Stage you are initially labeled and your active treatment plan.  If you read the clinical studies, the researchers have set points. So for example, if you are looking at clinical trials for a Stage I patient and want to know if they are alive at 5 years, the studies will usually calculate from the time from post surgery.  That way, doctors are able to collect important data from mastectomy, lumpectomy, ovarian suppression, neoadjuvant chemo and adjuvant chemo, radiation, neoadjuvant endocrine and adjuvant estrogine therapy.

    However, if you are Stage IV, many patients are not given surgery, so researchers will use the date of diagnosis as the set point.

    Now, you might ask, what about those patients who are Stage I who progressed to Stage IV?  Technically, they are still those same Stage I patients...but have progressed. However, now  based on their active treatment plan, they can now calculate from their Stage IV progression, their survival.

    So, how does one calculate?  It depends on who might be asking.  For researchers there is one answer that can only be found in an individual study.  For patients it depends more on the type of active treatment they received based on their initial and/ or future staging.

    So, in my situation, Stage 1, whose active treatment began with surgery, my MO said I should begin "counting" from completion of surgery.

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited July 2014

    BTW....if you think it is confusing...so do the researchers and clinicians find it confusing! Many journal articles are devoted to this subject.  Clinicians have begged researchers for more uniformity to help clinicians and patients chart an active treatment plan.

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  • belleb
    belleb Member Posts: 170
    edited July 2014

    LOL I can imagine that would be very confusing for them! Thanks for all the input. I still have no idea what the answer is hahaha

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  • M0mmyof3
    M0mmyof3 Member Posts: 9,696
    edited September 2014

    I was like the rest of you when trying to figure out how to count my years of survival (1 yr. Yipee!!!!!!!!!!). I had people telling me all different ways of measuring it and finally this year when I went to my breast surgeon's office for the six month post surgery check, we were talking about it and she just came out and said count it from the first time you met me!

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