Can Someone Help Me Calculate My Recurrence Chance?

Options
Beagleandme
Beagleandme Member Posts: 6

I went to Adjuvant to calculate my chances of recurrence. It is very confusing because I have never used the site before. I have had a lot of anxiety lately about recurrence and I don't know why because I have been cancer free since September of 2005. I am five and a half years out and I am still concerned about this disease coming back. I was Her2 positive with 4 lymph nodes positive out of 22. I took dose dense AC and Taxol and then took Herceptin for a year. I also took radiation for six weeks. My pathology report says my tumor was 0.6 cm with approroximately 3.0 cm DCIS component and negative margins. Tumor grade was 3. My invasive component was estrogen negative but my DCIS was positive. I tried putting all of this info into one of those calculators and I couldn't figure out what all the stuff meant. It kept telling me that I have a 76% chance of recurrence and I know that can't be right since I am 5 and 1/2 years cancer free. Does anyone on here know how to do this so that I may be able to rest easier? Any help would be AWESOME! Thanks ahead of timeLaughing

Comments

  • Beagleandme
    Beagleandme Member Posts: 6
    edited February 2011
    Thank you so much SherriG! This is my first time I have ever been on this site and I think it will help me to be able talk to other people that have been through breast cancer tooSmile Hope you are doing good!
  • lkc
    lkc Member Posts: 1,203
    edited February 2011

    Hi!  I am slightly ahead of you. will be celebrating 6 yrs in may. I found the Adjuvant site flawed without representation of current tx, so I never went back on it.

    The reality is for hormone negative gals our recurrence risk drpos expotentially with each passing year.Try to relax and enjoy your mega milestone.

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

    Beagle....I can't help you either with the stats or that site....my onc used to give me stats, but hasn't since I stopped taking AI's....I marked 5 years since Dx on the 3rd.....and today had a 3 month follow up with onc....physical exam was good and he goes, I expect the blood work to be good as well.....and he graduated me to 6 month visits!!!

    I agree with Linda....the longer we are from Dx, the longer we are here...

  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2011

    I can't help either, never been to the site.  I just want you all to know how wonderful it is to see "4 >5 year out" sister's here together.  You give us all hope and when I feel down I come here and read your success stories to get me through.  God Bless ya'll!

  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2011

    Oh yeah, welcome beagleandme...this is an awesome site.

  • VickiSam
    VickiSam Member Posts: 407
    edited February 2011

    Thanks for giving many of us hope ...  1.2 years celebrating NED, and counting.

     ...living 1 day, week and month at a time.

    Vicki Sam

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

    Here is a good article (and it is very old!)

    http://www.reuters.com/article/2008/08/12/us-cancer-breast-idUSN1248209720080812 

    I think you are doing pretty well!

    BTW, I have a beagle too! 

  • nikola
    nikola Member Posts: 466
    edited February 2011

    http://www.lifemath.net/cancer/breastcancer/therapy/index.php

    I am not able to access adjuvant from my computer but I did my best with cancer math. I put 45 as your age, but you can change it. Also, your survival would be better than shown as does not have an option for Herceptin.

  • DCMom
    DCMom Member Posts: 624
    edited February 2011

    OK so let's work this out...5 and 1/2 years means that your rate of living a long and healthy life has jumped back up into the realms(give or take) of the overall population.  Adding up the risks of car accidents, disease, and accidental injuries I'm considering you a pretty good horse to bet on for winning the race.  You've been trained in the value of EVERYday, are far more aware of what you are putting in your body, and you know the value of exercise.  All in all I'd say at this point your chance of never recurring is the better bet.

    My money is on you Beagle! 

  • katkel
    katkel Member Posts: 28
    edited February 2011

    Beagle...

    I have found that site flawed as well, so I don't use it.  AND- the last time I checked they were still double checking the new version, so the version that is out there is several years old and VERY outdated.  I know it is hard to totally get rid of the fear that it will come back-  but I agree with DCMom- at over 5 1/2 years past dx- my money is on you as well!!    Laughing

  • Beeb75
    Beeb75 Member Posts: 325
    edited February 2011

    Hi Beagle,

    Adjuvant Online is mainly for making treatment decisions after surgery (though it also has a calculator for adding AIs after 5 years of tamoxifen.)  

    Without knowing exactly what calculator you used, it's hard to know what was going on, BUT, since you're a Stage 3A, it sounds about right to me that 76 percent would have been your recurrence risk immediately after surgery, if you had no additional treatment. (I'm 2B and my recurrence risk was right around that number too.)  

    A couple of things to keep in mind:

    * Recurrence includes things like a new primary, and a recurrence in the breast or armpit (not just metastatic disease.)

    * You DID do chemo, which would lower your recurrence risk overall

    * HER2 status and Herceptin is not part of the Adjuvant calculations, currently 

    I agree with the other ladies here, that if you're 5.5 years out, and you have not had a recurrence yet, you are probably home-free. The HER2+ and ER- factors would make your cancer more aggressive (and therefore recur faster) so if it hasn't happened by now, sounds like you stopped it in its tracks.

    Congratulations!

    * Note that even if your recurrence risk was 76% after surgery, and you had done NO additional treatment, you might still have been in the 24% who was never going to recur anyway.

  • Beagleandme
    Beagleandme Member Posts: 6
    edited February 2011
    I want to say a HUGE thank you to everyone who responded to my post! You are all GREAT and your responses made me feel so much better.Smile KerryMac, the article that you posted the link to was extremely helpful to me and I am very grateful for you taking the time to post that for me. DCMom, Katkel, and Beeb75, Thank you so much for your encouraging words! I am very thankful for ALL of your responses. Knowing that there are people on here that totally understand where I'm coming from is more than comforting. I wish I would have found this site sooner!Laughing
  • kathleen1966
    kathleen1966 Member Posts: 793
    edited February 2011

    Well I will hope to make it to my five year mark!  I was told I have a 30% change of having a recurrence. I guess it's my fault for asking in the first place.  I held off the question for some time though.  Glad to hear someone else with 4 nodes and Her2+ is at the five year mark! 

  • weesa
    weesa Member Posts: 707
    edited February 2011

    Beagle, I am nine years out and still have dark moments, still come here for reassurance and well as to give it. Just pulled up KerryMac's article and I love it, for instance.

    I guess by now you know that Adjuvant on line is outdated, for the moment, and probably not useful to you in your situation anyway.

    But I think, reading between the lines, you have been lonely for other bc survivors, especially stage 3 survivors . So, consider yourself cured of that!!!  This is a great place to get support and you sound like a lovely person, so WELCOME NC SISTER! Please visit often.

  • Kathy044
    Kathy044 Member Posts: 433
    edited February 2011

    lifemath.net has a page for conditional factors that allows you to enter years since diagnosis, which makes a  big difference in mortality outcome.

    http://www.lifemath.net/cancer/breastcancer/condsurv/index.php

    :

  • geewhiz
    geewhiz Member Posts: 1,439
    edited February 2011

    Eesh...lifemath is scary!!!! It's got me as a 41.4% chance of recurrence?? Anyone know how accurate and up to date that site is?

  • lago
    lago Member Posts: 17,186
    edited February 2011

    Not sure if lifemath has been updated from 2007. It does not included treatment with Herceptin or any other drug for HER2+ so your prognosis might be very low. It also is not accurate for anyone with tumors over 5cm or more than 10 postive nodes (disclaimer on site if you enter above those numbers).

    But if you insist on using lifemath look at the  therapy calculator survival curves. Same numbers but it looks better from that perspective.

  • Mamita49
    Mamita49 Member Posts: 538
    edited February 2011

    Sherri,
     
    Yeap....Thats what I can repeat.
    Right now.......I am cancer free.   Thats it.
    What do you want more. 
  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2011

    beagleandme - I have a beagle too - he is older and more stubborn than ever, but very well behaved.  Congrats on the 5 year mark!!!!!

    Welcome to the site- we understand the fears, anxiety and will be here when you need to talk, vent, ask questions or just ramble.

Categories