anyone do adjuvant online even though your're not a doctor?

Christianne

I would like to do the Adjuvant Online assessment but don't like having to say I'm a doctor and answer the registration questions as if I am.  Has anyone out there done this anyway and found that there's no negative consequences for being dishonest about who you are?

ICanDoThis

There were no consequences.

But, hey, I worked my way through college working in a hospital, and I am a trained medical librarian.

I saw two oncologists - they both walked me through adjuvantonline in mind-numbing detail, so I just did it so I can say I did.

bluedasher

I did the same thing as 2tzus. The frustrating thing about it for those of us with HER2+ cancers is that they don't include the effect of Herceptin in the calculator. Herceptin is relatively new so it doesn't have the long term study data necessary for including it. It doesn't even ask about HER2 status and HER2 cancers are more aggressive so that should make a difference to the odds.

What I got out of it was that for my case 3rd generation adjuvant therapy reduced the 10 year risk of dying and that of getting a recurrance by about half. When I thought my cancer was 3.5 cm (from the mammogram and ultrasound), and it was predicting about 28% chance of dying from cancer without adjuvant, that was a pretty big benefit. Now that the surgery pathology results say that the IDC was 0.8 cm and the rest of the mass was other stuff, the risk of dying from the cancer in the next 10 years is only around 5% without adjuvant and 2.5% with adjuvant. It still cuts the risk by about 50% but the risk is a lot less so 50% reduction in risk isn't as much. 

The risk of recurrance is much larger than the risk of death. 18% for my current stats without adjuvant and 9% with it. I'm thinking that probably justifies chemo.

But since it doesn't take HER2+ status into account or the effect of Herceptin to the chemo results.

There is another calculator that doesn't require a login at:

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

This calculator takes HER2 status into account but it doesn't include Herceptin therapy in its calculations. It gives results in terms of life expectancy. The results seem in line with the adjuvantonline results - i.e. for me 3rd generation therapy gives a 50% improvement.

Because I'm HER2+ and stage I, I think I'll ask my oncologist about doing a chemo with less side effects plus Herceptin instead of doing the strongest possible chemo.

nash

I used Adjuvant Online. Can't remember what I registered as, but it's not like the Internet Police are going to hunt you down for a white lie. Heck, most of us are probably so well informed about bc that we could sit for our oncology board exams on the subject!

Christianne

You're right about being informed!!  I have done so much reading, research, etc.  Thanks for the laugh!

pod1257

I think we have to do as much as we can to take our health care into our own hands. - Adjuvantoline is just another tool we can use to make our treatment decisions.

 But I know what you mean about feeling a twinge of dishonesty, if not a Dr. Luckily I am in health care and checked one of the other health related fields. I honestly don't know why they don't open it to everyone's use, as if we don't understand our results, we can always consult with our onc.

Julie

AccidentalTourist

I chickened out of using Adjuvantonline but tried the site suggested by Bluedasher.  They do not allow for radiation treatment which again would change the results.  If my chances of survival in 15 years are impoved by only 5% by taking Tamoxifen for 5 years is it worth it considering all the side effects.  I am not expecting a definitive answer but frankly with all the side effects, some of which include other cancers, strokes, blood clots etc am not so sure.

SoCalLisa

Nena..your doctor, I am sure will be more than happy to go thru adjuvnantonline with you...

mine did... 

bluedasher

NenaH, the adjuvantonline calculator also doesn't have anything for radiation. I think both assume lumpectomy with radiation or mastectomy as they don't have any entry for the type of surgery and the survival and recurrence are suppose  to be the same for both. They both are working with the same underlying data.

Alicia70598

Some oncologists consider Adjuvant Online to be too general. My oncologist uses a formula to determine recurrence that, in my case, came up with a similar result. Figure 10 percent for every centimeter of the tumor, and add 6 percent for every lymph node that was involved.

I don't know if this works for HER2+ or hormone receptor negative.  

LizM

Wow Alicia,

I had never heard that formula but it comes out about right for me.  My tumor was 2.1 cm and I had one positive lymph node (ER/PR++her2 neg).  21 plus 6 equals 27% recurrence after treatment which is very close to everything I had read and adjuvant online.  I think with some of the newer treatments and aromatase inhibitors by risk may be a few percentage pts lower now but I always figured I had about an 80 to 85% chance that I wouldn't see my cancer return.  I am 3 years out and so far so good. 

jill323

I confessed to my oncologist that I "dishonestly" gotten my hands on Adjuvant !  She laughed and told me that in her opinion, my using Adjuvant! was perfectly fine because I knew as much as "some of the doctors she knew".   Of course, she was kidding, but honestly, what it means is that a lot of docs are quite comfortable with us being advocates for our own health and even more comfortable given the level of self education going on - as long as we seek guidance in interpretation. 

Because I confessed, I did ask the doc about Adjuvant's limitations.  She did say that neither Herceptin nor Radiation were included in the calculation.   Herceptin is not because there is not enough long term results yet.  And radiation is not because radiation is given variably depending on the case. 

I hope that helps.  Oh, in case you are wondering, the Adjuvant results were similar to the stats given to me by my doc and she told me this before my "confession".   Alicia, however, your doc's formula did not work for me in mirroring the Adjuvant results.  I guess this is because of the prognostic markers on my tumor and my age. 

Jill  

sftfemme65

Ok I did it and I'm confused.

it shows 50.7 alive after 10 years, 47.7 die of cancer

that is with no treatment

with chemo, 3rd generation the thing says 22.3 alive

and the color chart shows yellow.  

I'm trip neg with pos nodes so is this saying that 73 alive after 10 years? Anyone?

jill323

Sftfemme65 -

Hi.  Let me try to help you, but suggest that you might want to ask your oncologist to take you though this with them.  Most are more than happy to.   I went in and plugged in what I knew of your stats and got it to roughly say what you have above.

My (non-medical) interpretation is that the first line above (50.7, 47.7) is your baseline as if you did nothing. 

The yellow bar is the benefit you would get over the baseline based on the chemo regimen you put in.    In your case, being ER/PR negative, you "should"  get no benefit from hormonal therapy on the chart.   With the third generation chemo you put in it would incease your percentage by 22.3 percentage points.  So, yes it would bump the base line from 50.7 to 73.     So, it appears you did get it !

Of course, there are a lot of other factors of any individual's case that your doctor would know about that could influence these percentages.  In my case, for example, my Her2+++ status is not something easily modeled.   So, this is just a tool for additional perspective, but does not take into account other "art". 

I hope that helps.  And please let me know if after talking to your oncologist about the software if we got it wrong !

Jill

Sher

Yep, I registered too, although I don't remember giving a name or address?  Anyhow, Adjuvant Online had several places for medical profession to check off and one that just had a place to check for "other".  I figured that was me.............other! 

mom2two

I think I had a doctor that told me about this site and said I could go online and see the exact same treatment information that they do. The only reason they probably ask you to disclose if you are a doctor or not is to determine how much medical lingo to use.  Believe me if they didn't want anyone but doctors to use this site they would make it impossible for anyone else to use it. Just try getting into some of the medical journals intended for doctors only!

Bren-2007

I used Adjuvant online all the time when trying to decide about Tamox or AI's.

Two of my doc's used it as well, another didn't put much faith in it.

When using Adjuvant, there is also a section of the site where you can look up how they arrive at their numbers, also edit some of the boxes to adjust for your specific risks.  Also, the site has many areas where you can look up specific information regading statistics and what data they use and where it was taken from to arrive at those statistics. 

Adjuvant is specifically for ER+ cancer and determining the advantages of chemo. 

I found it helpful in determining whether the SE's of Tamox and AI's outweighed the benefits of continuing to take those meds (in my case). 

BTW .. I signed in as "other."

Bren 

AccidentalTourist

I was wondering: if 50.7 are alive after 10 years and 47.7 die what happens to the unaccounted 3 per cent.

Seriously though I was told by my oncologist that by having radio therapy I reduce my chances of cancer coming back by 19% (26% without rads and 7% with).  What I cannot work out (and I have already asked this before) is how to work out the reduction in risk with Tamoxifen following the rads.  If for example Tamoxifen reduces my chances of it coming back by 20 per cent what figure is that calculated off.  My ovarall chances of it coming back or my chances of it coming back after the radio therapy treatment reduction.

bluedasher

Nena - they died from causes other than cancer. For me, it's 10 year mortality without chemo comes up with (rounding to whole numbers):

88% alive
6% die from cancer
6% die from other causes

And if I switch it over to the relapse calculation, it gives

20% get a relapse (and the number that die from other causes goes down which is odd - I think that is because some who relapse also die from another cause and it only counts them under relapse)

3rd generation chemo cuts that in half. They don't include therapy with Herceptin, but from the report on the BCIRG 006 trial that got TCH approved (C in this case is carboplatin and T is Taxane), it improves survival and recurrence by 33 and 39% from AC-T which is a 2nd Generation treatment in Adjuvant instead of the 15-20% gained by 3rd Generation so I should be cutting my risk of both in more than half with TCH.

That should drop my risk of recurrence to less than 10% and mortality to less than 3%. I hope that is a reasonable trade off for the side effects of chemo.

etherize

This is an old thread but I was searching for help on this.  When my MO told me she used Adjuvant Online I confessed that I'd used it too, even though I knew I wasn't supposed to.  

Problem is, I'm not sure how she arrived at her percentages, or whether I am in fact reading it correctly.  For one thing, I have a major health problem that I'd say gives me a +20 (I think she must have put in +10).

I'll ask her again about this, but in the meantime, if anybody can help me, I'd appreciate it.  I put in 55 for age, +20 for major health problems, AI for hormonal therapy and 2nd generation chemo.  

I get that my 10-year risk of relapse is 68%, but I'm not sure how to read the colored bars versus the boxes below under "Adjuvant Therapy Effectiveness."  How do they correlate?

For example, if the bars show "with hormonal therapy benefit = 18.5 without relapse" does that mean an additional 18.5 people out of 100 have no relapse?  

And what is "56" in the "hormonal therapy" box below?  Does it mean hormonal therapy offers a 56% benefit?

Thanks for any help on this! 

marlenet

I don't have an answer for you but I just might go and try this site myself..... 

cp418

etherize  - I'm guessing you are reversing the meaning of the bars. The very top bars and values refer to getting no treatment.  Then the bars beneath show the benefit if a particular treatment is taken --- see the yellow bar.  So you are adding the green and yellow bar to show positive outcome of a treatment.  Only the yellow portion of the bar represents the benefit from my understanding.  Also, since you were dx in 2011 are you sure you recieved 2nd generation chemo treatments?  If you click on each treatment choice there may be a pop-up window providing a detailed description of the medications and dosing regimen. 

etherize

cp418, thanks for your reply; I didn't see it until today.

I got how to read the colored bars ... :-).  

What I still don't get is the "prognostic" next to 10-year risk (with "10 year risk" in blue) ... how should this number be changed; I don't get the "calculate for high risk" etc. .... and I don't get the numbers in the boxes below Adjuvant Therapy Effectiveness, also appearing in blue labels:  "Hormonal Therapy", "Chemotherapy" and "Combined Therapy".  Are those just percentages of effectiveness of each one?  

Thanks! 

Summer_Girl

Thank you for this posting.  I finally have some statistical information which will help guide me through my choices.  I am will be meeting with a second MO, but it's been 8 weeks since my surgery and I did not have accurate recurrence statistics.  I registered with and did not use completely accurate information....the system doesn't seem to care.