When am I considered cancer free?

Options
tchmuzik
tchmuzik Member Posts: 110
When am I considered cancer free?
«1

Comments

  • tchmuzik
    tchmuzik Member Posts: 110
    edited September 2009

    I have learned there are no "silly" questions on here - sooooo - here goes.    I was diagnosed in Dec. 07 with breast cancer - began chemo in January - 16 weeks - then mastectomy in June - then 35 radiation treatments that ended around the middle of October 08.   Here's my question:   when - through all this treatment, surgery, etc etc etc was or am I considered cancer free?   I see ladies say - I've been cancer free for 5 years!!  Well - I just want to know when that starts??   The docs all say I am fine now - no indications of any cancer but I want to celebrate that milestone - that year - those years when they come.   What are your opinions?    My gut feeling is that it starts once I finish all the treatments - which would make a year cancer free this October!!     I just had reconstruction done 5 weeks ago (DIEP)  - everything is going great with that and even though I have much to be happy for I still want to celebrate my cancer free years as I'm sure all of you do too.   

     Thanks for your help with this.

     Stephanie

  • charmd
    charmd Member Posts: 118
    edited September 2009

    Stephanie,

    I think it's a great question and look forward to seeing other answers.  

    Thanks for posting.

    Charmaine 

  • wallycat
    wallycat Member Posts: 3,227
    edited September 2009

    As I understand, we are never considered cancer free...just no evidence of disease (NED).

    I think after 10 years, we are allowed to begin donating blood again.

  • KerryMac
    KerryMac Member Posts: 3,529
    edited September 2009

    I would just say pick a day that feels "right" for you, and use that! Some people celebrate years from day of Diagnosis, some end of active treatment, some date of Surgery.

    My onc told me we "removed the cancer" with Surgery, so, to me that seems a good as day as any to count from.

  • Rose_wood
    Rose_wood Member Posts: 48
    edited September 2009
    I wondered about that, too.  When I asked the different doctors, I asked them if I should say "I have cancer"  or "I had cancer."  They just simply said that "I had cancer" sounds more optimistic, even though at the time I was undergoing radiation and now am in follow-up appointments.  So, the date of my surgery was the first day of my new life.  I like that.  Everything was so life-changing, and rushed with one appointment and doctor after another, the surgery date does sound like a date for a new beginning.  Thanks, KerryMac Smile
  • Annabella58
    Annabella58 Member Posts: 2,466
    edited September 2009

    For insurance purposes, it is five years.  But I say, go ahead, pick a date.  You are cancer free, hon. 

    God bless.

    xoxo

  • Warrior517
    Warrior517 Member Posts: 355
    edited September 2009

    Hi T!

    I think we have met thru other threads..lol I am 3 weeks post DIEP in NOLA.

    Anyway...back to your question! I asked my Oncologist this exact same question and his answer is...

    1. If it was not in your lymph nodes...then surgery date is your cancer free point..

    2. If it was in your lymphs or you need any chemo ie HER2 etc..then the date of your last chemo is when you are considered CANCER FREE!!!!

    Hope that helps...We all know the date of our diagnosis...our surgery...and last chemo. Just do something that will bring you happiness on these dates!! S M I L E! xoxo

  • comingtoterms
    comingtoterms Member Posts: 421
    edited September 2009

    hmmmm...... so five years of Tamoxifin doesn't figure into the equation?!  That makes me feel better!

  • samiam40
    samiam40 Member Posts: 416
    edited September 2009

    I had a bilat mx on in Feb of 09 and did CMF chemo from 3/09 to 6/09.  I asked my onco at my first post-chemo follow up visit whether I could now say I was cancer free.  She said you were probably cancer free after the mx, but now that you've done the chemo, you can definitely say that you are cancer free.  That pretty much seconds what Warrior571 said.  Use the date that feels right for you! 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2009

    I choose the date of my surgery...that is the day I feel I was cancer free.....

  • konakat
    konakat Member Posts: 6,085
    edited September 2009

    From the first clean scan -- that's "cancer-free" as long as you realize you aren't "cured".  It can always come back. 

  • mmm5
    mmm5 Member Posts: 1,470
    edited September 2009

    Research and data now show that 75 percent of Breast Cancer Pts. are cured upon surgery, that means cured it is taken care of. This is for all stages together. My Onc brought me this data upon diagnoses.  Other woman that were not cured upon surgery and have lingering cells will or won't be helped by chemo or hormone therapy etc.  He estimates between 5 and 8 percent are put into long term remission with chemo, but stats are getting better with Herceptin and AI's. The new stats are not available as they have not been out long enought to see long term survival.

  • mshalto
    mshalto Member Posts: 70
    edited September 2009

    Hi mmm5,

    I would love to know where your onc. got that data, which sounds tremendously exciting!

    Thanks alot---

    Miriam

  • mmm5
    mmm5 Member Posts: 1,470
    edited September 2009

    I can' t remember it has been a year and a half, but have appt in 3 weeks will try and get copy of data. He quotes these numbers every time I see him. He is well thought of and probably the busiest Onc in PHX. Voted number 1 by his peers and been in practice for 35 years so I assume he has seen it all. Of course I do remember glancing at data when he quoted it the first time.

    I guess in the end it is a great number but only if you are in the 75 percent, we either recur or we don't.

  • konakat
    konakat Member Posts: 6,085
    edited September 2009

    1 out of 4 not being "cured' is NOT a great number.  Sorry for the double negative in my sentence...

  • mmm5
    mmm5 Member Posts: 1,470
    edited September 2009

    I think my reply came out wrong as I was being somewhat sarcastic  as it isn't great if you are not in the 75 percent. Sorry I guess my sarcasm does not translate well.

    There are no acceptable recurrance numbers in my mind.

  • konakat
    konakat Member Posts: 6,085
    edited September 2009

    My apologies MMM5!!!!!!  I didn't see the sarcasm -- must be my never-ending chemo-brain.  I'm sorry for mis-interpreting your post.

    Elizabeth

  • jillyG
    jillyG Member Posts: 401
    edited September 2009

    I think we are "survivors" from day of Dx....for example, for me, I will be a 5 year survivor Nov 3rd 2013.  But this is a little different than saying cancer free.  When I woke up from my mastectomy my surgeon was hovering over me and said "you're cancer free".  First words out of his mouth.  It was nice hearing those words and I hope they turn out to be true. 

  • mmm5
    mmm5 Member Posts: 1,470
    edited September 2009

    Elizabeth

    No worries, like I said emails and especially my tired late night ones don't always translate well.

    If I were in front of all of you ladies face to face discussing this, I would say it breaks my heart daily what all go through here. Blessings to all of you and may you have many pain free years.

  • Sunris
    Sunris Member Posts: 120
    edited September 2009

    My surgeon said the words " there is no residual cancer at this time" ......but I have not started rads yet ( chemo complete) so I haven't decided the date I will chose to deem myself "cancer free? / NED ? /Remission?  as my pathology showed ADH.. ??  Pathology date after surgery?  After rads are completed & hopefully zapped out all the ADH?   Basically I just know this......2009 has been a year from HELL!   I do agree that we are survivors from the date of DX.   

    ANNIEALSO,

    So does it mean that if we are still NED at year 6 then we will be able to increase our life insurance amount ??  

  • charmd
    charmd Member Posts: 118
    edited September 2009

    I completed my last rad treatment on Friday, saw my onc and he said the word "survivor" -- I'm going to go with that date.  I remember the surgeon saying the cancer was removed after my bi-lat mx in June, but I didn't feel like I was ok until that last rad session was done. The hard part about it is still having to take the Tamox everyday - it reminds me that while the tumors may be gone, I am still in the fight everyday.

  • RunswithScissors
    RunswithScissors Member Posts: 323
    edited October 2009

    According to the FAQ on the Breast Cancer Action site -

    2 years is a significant milestone, because the majority of recurrences happen within 2 years. 

    While you are never cured, your percentage of  risk goes down every year. 

  • Isabella4
    Isabella4 Member Posts: 2,166
    edited September 2009

    I just take it that we are never 'cured'....that it can be in remission, and always come back if it feels like it.

    I was reading somewhere recently that 2 years IS a significant milestone, as a large proportion of the ones that are going to come back will do within the first 2 years. But also, as we go years out the odds shorten again. I can't remember , as I seem to overdose on cancer related reading ! But I know I was shocked when I read it, thinking the further out we became the less chance of recurrance. I had it out with my Onc, she was reticent at frst, but had to agree with what I was asking her, that the odds do shorten a lot further out.

    I seem to remember Tenderisourmight posting a very good post on just this , probably a couple of years back.

    Isabella.

  • BMac
    BMac Member Posts: 650
    edited September 2009

    This is such an interesting debate.  I once asked my ovarian cancer oncologist about being cured. i.e. after five years you're cured was what I understood/thought.  My question was when do you count the 5 years:  from diagnosis, surgery or completion of all treatments.

    The first thing she said is "I don't like to use the word cured."  I so appreciate her honesty.  She then went on to say that she would count it from the date of completion which in my case is June 30, 2003.  The last time I was at her clinic I saw her fellow who said that I had beaten the odds.  An intersting point as well I once told her that my mother's ovarian cancer came back 4 years after completion of all treatments.  She commented that at 4 years you're considered 75% cured!  Hmmm, there's that other "C" word.

    Before I got BC I was asked by someone if I was cancer free.  I said Yes, not really knowing for sure that I was but one would assume once it's been cut out and the chemo and rads have supposedly taken care of any residual cells, to the best of our knowledge we're cancer free.  I see my BC onc on Thurs so I'm going to ask her about this.

  • tchmuzik
    tchmuzik Member Posts: 110
    edited September 2009

    Wow - what a response I have gotten in such a short time!!   Thank you ladies!!   I think - from what I can gather is - it is a personal thing.   Every doctor is probably going to say something different - as to when you are cancer free or in remission or whatever you want to call it.   When they were wheeling me to the operating room for the mx the nurse beside my head said - Honey - we are headed to get that cancer OUT!!   I know that - at that moment - I had a feeling of peace that came over me and FOR my peace of mind - whether it is healthy or not - I prefer to call it cancer free.   I think attitude is one of the primary things that gets us through all this and as long as I am thinking I am cancer free - then can't help but think those good vibes will help me.    I did like what one of you said - we are SURVIVORS!   Preach It!!   That is the absolute truth and for that we each should be very proud.   I know I am.   A close friend went with me for my last radiation treatment and she presented me with a t-shirt before we left - pink shirt with the word SURVIVOR written across the front - I wore it to the treatment and I truely FELT like a survivor!!   Keep all your thoughts coming - this has been an interesting post and I guess I have not been the only one wondering about it.

    Love to you all!!

    Stephanie

  • jillyG
    jillyG Member Posts: 401
    edited October 2009

    I would be interested in reading the stats on percentage of risk for each year out from cancer.  I think that for me, I will feel a whole lot better at 5 yrs out, because I'm not quite one yr out from DX and I still feel the overwhelming fear. 

  • mshalto
    mshalto Member Posts: 70
    edited October 2009

    So would I, JillyG! I'm just a year out myself and still a bit shaky.  It is definitely one thing to tell yourself to live in the moment--and another thing to remember to do that--still working on that one, myself! :)

  • abbadoodles
    abbadoodles Member Posts: 2,618
    edited October 2009

    My personal take on this is that no one ever knows if they are cancer free.  Not even those who have never been diagnosed. 

  • Dolores81035
    Dolores81035 Member Posts: 82
    edited October 2009

    My ONC said I was NED after surgery. I doing radiation now. Its good to feel optimistic.

  • tchmuzik
    tchmuzik Member Posts: 110
    edited October 2009

    You know - after reading everyone comments I realize how personal this whole experience is - how each of us handles things in the way that we have to in order to get through everything..   So - I wonder if - for those that hesitate to say that they are cancer free and for those who search for the date to start saying they are cancer free  - maybe we could all agree on one thing?     Maybe we could all agree that we are SURVIVORS!!   Quite honestly - isn't that the most important thing?   I think so.   Hugs to all of you.

Categories