reoccurance rate question

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jackboo09
jackboo09 Member Posts: 920
edited June 2014 in HER2+ (Positive) Breast Cancer

Im looking for anyone to shed some light on my % reoccurance as my onco is hard to pin down on this one. Not hung up on stats, just interested. I'm one year on from diagnosis and I suppose I should have asked then. I did TCH chemo and have completed x14 Herceptin to date.

I was 41 on dx. IDC 2.6 cm left breast. 1 positive lymph node. Her 2+ Grade 3

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  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited February 2012

    You might try plugging in your "numbers" at the cancermath.net website.   It should give you a guesstimate.... Good luck.

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  • jackboo09
    jackboo09 Member Posts: 920
    edited February 2012

    Hi voracious, thanks for responding. i remember you have given me helpful advice previously. Just had a look on cancermath.net website. A little confused, (no change there for me!) I began with the outcomes calculator which showed:

    15 years: 66% still alive (have viewed it this way rather than % of those who have died from cancer!

    10 years: 75%

    5 years: 87% (however the therapy calculator read as 94% still alive?

    Questions 1: How accurate is this as there doesnt seem to be an input for Herceptin?

                    2: Are ladies battling with mets included in the still alive %?

                    3: I was under the impression that if Her 2+ ladies pass 5 year point then the reoccurance chance decreases? This doesnt seem to be the case here as & survival drops 10/15 yrs out. Or is it dependent on ER status.

    Yikes what a can of worms Ive opened!!!!!

    Regards

    Liz

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  • mmm5
    mmm5 Member Posts: 1,470
    edited February 2012

    JBOO-

    The stats here are very out of date due to the fact that Herceptin has not been factored in.

    You can go to the Hera Trial studies and look at stats there and it is true that if you have Her2 disease that most recurrances happne in first few years after diagnoses. I just has my 4 year check up and my Oncologist felt like recurrance rates were low now and nill at 5 years due to the high grade, Her2 nature of the cancer. 

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  • mmm5
    mmm5 Member Posts: 1,470
    edited February 2012

    also did you go to the treatment tab (allows you to put in your treatment) I just did and put your stats in with your treatment you listed and it shows a much lower recurrance rate than you illustrate above, try again and put in treatment.

    Your stats look pretty good 

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  • jackboo09
    jackboo09 Member Posts: 920
    edited February 2012

    Hi mm5

    Yes I see what you are saying about the Herceptin not being factored in. I will go back and try again. Thank you for your comment about my stats. As my Herceptin treatments draw to a close it feels like I'm losing my security blanket. Great to hear that you are 4 years out and that your onco is so positive.

    Liz

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  • pupmom
    pupmom Member Posts: 5,068
    edited February 2012

    mmmr, where is the treatment tab?

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  • mmm5
    mmm5 Member Posts: 1,470
    edited February 2012

    sorry just getting back to you!

    If you go to Cancer Math and roll over breast  cancer 4 options come up, click on therapy calculator to figure stats with therapy.

    JBOO, your stats with 3rd generation chemo even without calculating the Herceptin are very good I didn't know your age but guessed and put in your stats from your signature and you had a 11-12 percent recurrance rate at 15 years and that was without Herceptin.

    You are looking quite good! 

    I know where you are right now I also had so  many worries and put myself through hell during that time and even a few times recently. It gets better but honestly with your treatment you have every reason to be positive. 

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  • Lilyn
    Lilyn Member Posts: 282
    edited February 2012

    Hi Liz and mmm5, just looked at your thread because as you can see I am also Her2 positive, ER+/PR-. I am now three years out and I agree with mmm5 it does get better. In the beg a inning I was quite worried about recurrence but as time goes on even though of course it is in the back of your mind we just go foward and live our lives...I never did ask my oncologist about risk of recurrence or percentages. He said on my last visit that obviously the further out you are the better. My motto is now "I will not let fear rob me of my joy" This cancer diagnosis has been such a journey but I know I I need to stay as positive and healthy as I can (exercise, sensible diet (not all the time ha ha) but of course it will always be a little cloud on my shoulder but most of the time I can just flick it away.

    Best wishes and blessings to you all. Lois

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  • LouLou40
    LouLou40 Member Posts: 180
    edited February 2012

    I have similar stats but have never discussed recurrence rates with my Onc.

    I have just passed the 3 yr mark since dx and my Onc said for Her2 the recurrence rates drop dramatically, he gave me the impression with if you don't recur in the first couple of years then things are looking pretty good.

    I agree it does get easier the further you get along the journey you get .

    Lou

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  • lago
    lago Member Posts: 17,186
    edited February 2012

    My onc did discuss the stats with me but it was pretty obvious that Herceptin wasn't included into the equation because Herceptin hasn't been standard care long enough for early stage. (Since 2006) I read that as my stats might be a little better than I was shown.

    I will say this jackboo09, the numbers looked pretty good and I too am a stage IIB triple positive (my PR was only 5%). The only reason why I don't share my numbers is they are specific to my diagnosis and age. I'm older, have a larger tumor but no nodes.  Although we are both stage IIB the numbers might not be the same… but are probably similar. So with treatment I will say mine were above 80% alive and NED in 10 years with treatment. With surgery only my stats were only 40% alive & NED in 10 years… treatment makes a huge difference.

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  • jackboo09
    jackboo09 Member Posts: 920
    edited February 2012

    Hi mm5

    Thank you for your comments, especially concerning 3rd generation tx. I think I have been too pessimistic in my outlook. I was one year post diagnosis on Fri 24th Feb and despite having some issues, am doing well. I was 41 on dx by the way. Will be 42 Aug 2012.

    Hi Lilyn: loved your motto. Lovely message.Thank you

    Hi Loulou40: Thank you also for reminding me that after the 2-3 yr mark things get easier.

    Iago: Great advice as always. I feel better reading that information, but agree that all this stats stuff is so individual.

    Good wishes to all

    Liz

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  • CarylC
    CarylC Member Posts: 230
    edited March 2012

    This was something I just asked my doctor about today as I am nearing the end of treatment.  He told me that I have a 20% chance of recurrence over the next 2 years.  At first, that kind of shook me, but when I put other things in there other than cancer, it didn't sound so bad.  I.E., if you told me I only had a 20% chance of getting remarried in the next 2 years . . . it doesn't sound very possible.  Or if you told me I had a 20% chance of winning the lottery . . . I wouldn't quit my job!  Or, as my daughter pointed out, if there was a 20% chance of rain, I wouldn't stay home and not ride my motorcycle.  That put things into a much better perspective! 

    Please note, that is MY chance, based on my age, number of positive nodes, etc., not anyone else's chances.

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  • lago
    lago Member Posts: 17,186
    edited March 2012
    CarylC  your chance of not recurring over the next 2 years is 80%. Wink
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  • Sydneybased
    Sydneybased Member Posts: 106
    edited March 2012
    My onc pumped my figures into a new prognostic model, which he said had been developed in the UK (this is the one with herceptin, KI 67 etc factored in). He said with 1.6 tumor, KI67 of 60%, grade 3, no nodes, I had a 20% of recurrence with no treatment and 10% with treatment (chemo, herceptin, tamox, radiation, surgery). As many others have said before, you either get it or your don't. The most important thing is to feel that you did everything you could. After a 24 hour flight from Sydney to London yesterday I had a choice of having a cat nap or walking for an hour to a juice shop for an immune-boosting beetroot, carrot, apple and ginger juice. I did the latter. It may or may not make a difference, but it makes me feel more in control!Smile
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  • whippetlover
    whippetlover Member Posts: 17
    edited March 2012

    Hi Sydneybased,

    Hope it's not too cold in London...a shock after Oz!

    When your onc gave you these figures of 20% to 10% with treatment did he give you the time interval that this was based on? I know that I went to an onc in Sydney (RPA) about 6 years ago before this new prognostic program would have been developed and he gave me similar stats. However, he did say that after the first 2-3 years, the likelihood of recurrence lessens. I am weakly ER+ and PR- so that may have a different outcome. Anyway, 10% sounds very good to me! I didn't have Herceptin & I'm still ok so you have a great chance at dodging any bullets. Which hospital do you go to?

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  • Sydneybased
    Sydneybased Member Posts: 106
    edited March 2012

    London is cold unfortunately!! (despite being warm for this time of the year).

    I think it was 10 years, but I can't be certain.

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