question about cancermath calculator

Mallory107 · February 2012

I am trying to load my stats into this site and am not sure I am doing it right...

My cancer is mostly DCIS ( 2.5 cm) and then is 1 mm of IDC.

My q's are:

where it says tumor diameter-do I put the 1 mm of invasive in or the DCIS?

And for the histological type would that be Ductal? I didn't see an area for DCIS.

bcisnofun · February 2012

I had idc in one breast and decision in the other. I used my idc info. That's what they used to stage so it seemed like the right info to use. Good luck

Mallory107 · February 2012

THanks! When I plugged that in it showed that without therapy my life would be shortened by .2 yr. That just seems so low and really makes a case against therapy.

peggy_j · February 2012

Mallory, 1 mm is an extremely small IDC tumor (the smallest I've ever heard of) so I suspect that number is right. (anything 2cm of less is considered stage 1). If you want to test CancerMath, try playing around with some parameters, like changing the size or grade. You'll see that the statistics can quickly change. FWIW, I'm a software engineer and very curious about how they arrive at their numbers (what data and calculations they use) so even though I've never heard anything bad about them, I take it with a grain of salt and give more weight to my docs' estimates.

Keep in mind that CancerMath doesn't track the risk of recurrence, so it's possible that some patients will find another tumor, go through treatment again but it won't impact their life expectancy. There may be other factors that your MO wants to consider (HER status, your age, other health issues, family history, etc). They should have similar tools that also predict the risk of recurrence and likely benefit of various treatments. i.e. if you're highly ER+, you'll benefit more from tamoxifen.

FWIW, my IDC was 5 mm; lymph nodes were clear and my surgeon got wide margins. I had rads. My MO dis-recommended chemo but recommended tamoxifen. You may get a similar recommendation.

Good luck with your decision. The most surprising thing to me was CancerMath's expected life expectancy if I *never* had cancer. They think I will live to around 82. I was planning to live to 90!

Carmelle · February 2012

stage by your invasive...largest tumor. I had multiples and they use my largest. also DCIS in both breasts but they do not factor.

Blessings2011 · February 2012

Peggy - regarding the issue of the "extremely small" IDC tumor, I had two areas of IDC - one spot was 1.5mm, and the other one was half a millimeter!!! We're talking the size of a half a grain of rice for one, and a grain of salt for the other!!! And what's weird, in my final path report (after BMX) there was NO EVIDENCE of any IDC. The doc said that "The core needle biopsy probably got it all." Sheesh!

Mallory - I went to the CancerMath site, and wasn't sure how to do it. I think it said my life would be extended by 330 days if I had treatment. But that's "life expectancy" and we're talking about me being in my 80s by then! Will it matter if I'm 88, or make it to 89?

My MO says right now, without medication, my "current risk of local or distant breast cancer recurrence" is between 1% to 2%, yet she still wants me on Arimidex for five years.

Dang - sometimes these numbers are more confusing than helpful.

Mallory107 · February 2012

Thanks for the input ladies!

Blessings: Thats about what my doctor said to-that Tamoxifan would reduce my risk from 1% to 1/2%. He only told me to give it a try and if I didn't like the SEs then he would be fine for me to not take it. DId you have a LX or MX? The reason that I am looking so much into this is that I don't want to take Tamox and am strongly considering getting a MX on the other breast. I am much more afraid of a new cancer than a recurrance right now.

peggy_j · February 2012

Blessing and Mallory, I'm not a doc but in my opinion, a risk of recurrence of 1-2% is extremely low. In the Hormone forum, women have discussed whether it's worth it to take meds if the expected benefit is so low. (some of those threads may have helpful info.) Maybe time for a second opinion of another MO?

Blessings2011 · February 2012

Mallory - I had a BMX on December 5th.

Peggy - I just got home from my second meeting with my MO. I told her that in our first meeting (3 weeks post-op) I felt like all she did was throw statistics at me, and that I didn't get my questions answered.

Later, I realized that giving stats was part of her job - as well as to eliminate as much risk of recurrence as possible for cancer patients. AND - I didn't ask my questions in the right way, so of course, I didn't get the answers I wanted.

Tonight (she was running late) she spent an hour with me and DH. She listened very carefully, and said that even with my VERY low risk (1 - 2%), that the Arimidex would reduce the risk of recurrence by another 20-40%. She said that it would "push back" the timing of recurrence....that I might get a recurrence in the next ten years without the meds, or I could get it when I'm 90.

We discussed my quality of life as it is now, and my fears that the Arimidex will make it even worse. I realized that I've really been catastrophizing, and imagining the worse, when I haven't even taken that first pill. We reached an agreement: I will try the medication and give it a few months. If I am absolutely miserable, and if there is no other drug I can tolerate, then of course, she said she'd take me off the drug. At that point, she said, the risk would not outweigh the benefit. I feel much better about starting the AI now.

Mallory107 · February 2012

Blessings-I too am 'catastrophising' with the tamoxifan. I just don't have a good feeling about it for that small % that it will help me. Did you do a proplyactic MX? THat is the route that I think I want to go. I have so many good reasons FOR it and so few AGAINST it but am still a little trigger shy. Thats why I am really trying to weigh all possible outcomes. When I asked my MO about if I got that would he suggest Tamox and he said-no, then you definitely wouldn't need it.

mammalou · February 2012

can someone tell me the web link for cancer math?

voraciousreader · February 2012

Cancermath.net

Blessings2011 · February 2012

Mallory - my Radiologist was certain there were suspicious areas in my right breast, but the mammo didn't show anything.

Because I knew I was doing the MX on the left, and there was no way to match up to my remaining right breast, I decided on the BMX.

Interestingly enough, the final pathology report showed no cancer in the right breast tissue, so I guess that it was a prophy after all. But I still believe the radiologist. I had VERY dense breast tissue, and the only way to further investigate it would have been an ultrasound, AND an MRI, for which I would have had to travel four hours to another facility to have it done.

The BMX decision took away that necessity......and that anxiety.

RoulaG · May 2012

The cancermath site does not take into account herceptin as a targeted therapy.

question about cancermath calculator

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