Can Someone Help Me Calculate My Recurrence Chance?
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 time
Comments
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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 too
Hope you are doing good!
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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.
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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...
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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!
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Oh yeah, welcome beagleandme...this is an awesome site.
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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
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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!
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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.
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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!
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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!!
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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.
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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.
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!
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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!
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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.
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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
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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?
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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.
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Sherri,Yeap....Thats what I can repeat.Right now.......I am cancer free. Thats it.What do you want more.
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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.
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