I HATE cancer math!!

kirismum

No matter what I put in, it gives me a devastating prognosis for Kiri. I don't know if it's because she's so young (25) or has a tumor that's HER2+, or the fact that it's spread to 1 lymph node, but the best they can come up with is another 6 years of existence for her. No place to put in Herceptin or Lapatinib (that she's on now), no place to mention her positive attitude, her athleticism, her energy. I have got to start staying away from these sites. Thank God Kiri has no use for them.

 This is NOT a good day for me, emotinally.   I so wish there were a site like cancer math that was a little more up to date in terms of the available treatments. 

suemed8749

Hey Mum - I have a 25-yr-old (see picture), and I can only imagine how distraught you are over her diagnosis. Having said that- cancer math sounds like absolute crap to me! I have never used any of the online life expectancy indicators, personally, and one that allows you to enter HER2+ without Herceptin (and the other myriad drugs for HER2+ that are becoming available) seems utterly worthless. There is great hope for those of us with HER2+ including Kiri. Read some of the posts on the HER2+ threads - some women have oncs who tell them that they are GLAD when they find out the cancer is HER2+ due to all of the promising new treatments. I'm in the clinical trial for Neratinib, and there is much, much more to come, and SOON.

My advice: stay off those sites. The 3-year "anniversary" of my diagnosis is coming up next month. When I found out I was ER/PR- and HER2+, I thought I had gotten a death sentence, in large part due to outdated websites I pored over at 2 a.m.  Today I feel great, and am (hopefully!) doing well.

Your beautiful, athletic, otherwise healthy 25-yr-old should respond well to the treatments that are available to her today, and be around for many, many years to come to take advantage of all of the new tx being studied and tested today. Please stay strong for her - and in six years, you can hopefully give her an extra special hug and send up a prayer of thanks.

Wishing you both all the best, Sue

flash

Don't bother with the cancer math. It's totally outdated. I'll put it in terms that you can relate to:  think of it like a pulled tendon in a horse.  Now, in modern vet medicine,  you have the drugs and tendon therapy that can bring it back 100% if the horse is worth the cost. Horses that used to be put down as worthless are now still winning races with  a tendon that looks perfectly fine on ultra sound. Not like the old days where it was bowed and that was it. BC is the same, herceptin is like the miracle drug. BC knowledge  has come a long way in a short time and it will continue to change.  I'm not just Polyanna, it really is better.  I know Kiri's been seeing top surgeons and oncs but I'm betting they haven't been that negative.  Cancer does suc* but it will probably be better than you are thinking.

flash

Don't bother with the cancer math. It's totally outdated. I'll put it in terms that you can relate to:  think of it like a pulled tendon in a horse.  Now, in modern vet medicine,  you have the drugs and tendon therapy that can bring it back 100% if the horse is worth the cost. Horses that used to be put down as worthless are now still winning races with  a tendon that looks perfectly fine on ultra sound. Not like the old days where it was bowed and that was it. BC is the same, herceptin is like the miracle drug. BC knowledge  has come a long way in a short time and it will continue to change.  I'm not just Polyanna, it really is better.  I know Kiri's been seeing top surgeons and oncs but I'm betting they haven't been that negative.  Cancer does suc* but it will probably be better than you are thinking.

FireKracker

so after I put in all my info it told me that the chances of me getting bc again without taking any oral meds are 0.I thought Drs.use this cancer math?????

I am 90% ER and 30% PR. I know i need something to get the hormones working right,RIGHT?

CoolBreeze

Adjuvent online has herceptin in it although not the newer chemos.

 https://www.newadjuvant.com 

I don't know your daughter's stats but I put in her age (got a pop up message saying they would adjust the prognosis for an under 35) and put in my own stats.

I got this:

"This patient's risk of death due to breast cancer in 3 years is about 7 %."

Your are likely to have your daughter around for many more years.  It may come back but probably when she's my age, who knows?  Everything you find online is old and you have been researching for a long time.  I think it's time for you to back away from the internet and just enjoy your daughter. 

jsw19

Definitely ignore that site.  I have not looked at any of those websites and I am also fairly young (just turned 33) and had 8 positive nodes and am HER2+.  Like suemed said, the oncologist I consulted with at one of the top hospitals in my state said that he actually prefers to see the HER2 test come back positive because it gives additional treatment options.  Treatment options just keep getting better and better so I have faith in the medical community that all of us will have many years ahead of us. 

Lady_Madonna

*edited to add 32 "more" years!  (even that could've been misread.)*

Kirismum, Don't panic.  I think you're looking at something wrong.  The "Life Expectancy" in the mortality risk calculator, for example, shows that, with Kiri's stats, she has a life expectancy of over 32 more years!  And that figure is most likely very, very low.  Kiri has a very good chance of being cured with her Herceptin treatment!  

That's the problem with these "statistics."  It's so easy to get caught up in numbers, and while you're emotionally distraught with all the junk they're projecting out at you, you can easily mis-interpret the way they explain things.  

I'm very sorry for your daughter's diagnosis.  That must be so awful.  It's fantastic that she's keeping a positive attitude and avoiding "statistics."  I bet she's going to get through this just fine!

((((Hugs)))) for you!

lago

Maybe I did something wrong but did you go and use the therapy calculator. With Hormonal therapy and 3rd generation regimens I got an 86% change she would be alive in 10 years. That's only 1% less than me (so basically the same). 

But yes cancermath is dated and does not seem consider drug therapy for HER2+

mmm5

And....Third Generation regimens do not include Herceptin so you take the stats of 86 percent and take off another 50 percent of those stats making it about 7 percent risk of recurrence for stage 1 Her2...!

kirismum

Whew! You guys made my night.

CoolBreeze, I tried to register at Newadjuvant and nothing happened. Looks like a good site. I'll try again later. Kiri's stats are almost identical to yours except that she has 1 SNL involvement out of 8. Lago, similar to yours too, but with the PR- and that lymph node.

Can't believe I screwed up the math on cancermath, too. Just goes to show, when you think you're thinking clearly....

Flash, I love the horse analogy. Especially since I did a year and a half of rehab on my Connemara after I blew out her hind suspensory and she's 100% now. 

Feeling much more positive now. What would I do without you girls?

apple

Math just by itself is hateful.

Best of luck to Kiri..

TammyLou

Dear Mom,

 By "cancer math," I've been dead for FIVE YEARS now.

Sometimes, "cancer math" is JUST WRONG!

This may be one of those situations in which it is really, really not good to be a "big picture" person.

Breast cancer is predictably unpredictable. 

The future is not written in stone...and frankly, I think that Herceptin has demonstrated ability to change our outcomes.

xx

tl ...so far, so good

P.S.  www.youngsurvival.org   = a bc site specifically for young women

kirismum

 By "cancer math," I've been dead for FIVE YEARS now.

TammyLou, that is the funniest thing I've read in a long time. Thanks for the laugh!!

heathermcd

Actually, according to cancermath more than half of the women who get BC die within 10 years. I know for a fact that isn't right. I think its calculating survival without treatment. I have very similar stats to your daughter and I can promise you, I fully expect to be here in 30 years!

LtotheK

KirisMum, you make me cry because I know my mother is as upset and worried for me as you.  I am an ER+ patient. I think one of the major misperceptions in the BC world is there are supposedly "preferrable" cancers and diagnoses.  ER+ cancers can come back anytime.  HER2 cancers are often spoken about as curable.  Neither of these things can be weighed against lifestyle, and age, which in my mind is as much an advantage as a hinderance--just talk to older women trying to do chemo (they even get less of it usually because their bodies sometimes can't hack it).

I am not a statistic. If I banked on that,I would never have started mammography a few years ago,as I've got no family history. It was some lumps and a hunch.  I had something like a 1% chance of this disease.

For every moment you worry, take it back. Enjoy life, work hard to keep it from coming back, and remind your daughter how much you love her.  You inspired me today.