Is Chemo My Safety Net? The Statistics of Recurrence

So here's what I saw today that really surprised me.

Had my first meeting with the oncologist - who has been here a year and was on the faculty at Penn for a couple of years before that. Nice woman with all the up to date data and warm but professional manner.

I expected chemotherapy to be an option. But I expected it to be like - well an option option - like something I didn't really need to have.

I was thinking of it like an insurance policy. A "just in case" a couple of those cells went on a little journey while they were hanging around waiting to have the primary tumor discovered.

Now after the probability studies and odds that seem to be on the table I'm thinking of chemo more like a safety net that I'll use while being forced to do high wire stunts.

Here's Why

When Doctor Kaltman plugged all the data from the pathologists into her uber technical computer analysis model the chart in front of me sprang to life and looked nothing like the seven percent recurrence rate my surgeon had thrown around.

The risks of recurrence with my particular kind of cancer - well - she didn't have great news.

I'm surprised.

I'm very very VERY surprised. I'll admit I've read a bit both before and after my mastectomy but I never went back to the start and rethought whether the surgeon was selling me some hooey the day we first met or just off his game that day.

I'm not saying I'm buying the casket. I'm just really really surprised at this.

So today I had a very calm very rational look at the numbers. Unfortunately I can analyze with the best of them. Without doing anything I've got a lousy forty two percent chance of being alive and cancer free ten years from tomorrow .

My grandparents all were born in the 1800s before the advent of modern medicine and lived in a small towns of Madison and Ashtabula Ohio to at least their mid eighties. One until she was over ninety five. I had expected to do the same.

It's just wrong. If I have chemo now followed by five years of hormone therapy I have about a sixty five percent chance of being cancer free in ten years. I'll be sixty nine then. Still behind the grandpops.

That's not the 90+ percent cancer-free number I'd been led to believe.

So I took a tour of their chemo facility, saw the comfy treatment lounge chairs that I cant really describe because I wasn't really looking and decided to increase my odds of staying cancer-free. I chose chemo on the spot. No doubts; no hesitation.

Not so predictably I had a verifiable sobbathon later.

More numbers - the sobbing started about five hours after I handled the news so well. It lasted four hours. That was three hours ago. One kleenex box has been replaced. I've taken one xanex and two ultram for headache, breast, pain, and general "I can't believe this" pain.

I'm not chatting it up and interacting much at this point but I'm semi-coherent again.

I see the reconstruction guy again in the morning. Another day; more boob prodding and poking. I don't promise not to cry this time.

Comments

[GeekMommy]

Oh honey!!
No WONDER you're reeling in shock! Who wouldn't be??
That's sure as hell not 7%!

Then again, I'm going to focus on the fact that with Chemo and with prayer and luck and positive energy and modern medicine, you stand 100% better chance than you did if it had never been discovered!

Much, much, much love to you!!

I downloaded ooVoo the other day, just in case. I added you on there. If you need me, let me know and I'm there! :)
(((((((((((hug))))))))))

[MaxWeb]

I'm sorry there wasn't better news for you today Susan. If you are looking for permission to cry, scream, pout, etc. you have my permission to do it all. But when you're done with those feelings, I really hope that you'll see you're in need of no one's permission to be who you are and what you are while you go through this time of your life. You are a much stronger person than most, I don't think too many would be holding up as well as you are. Know that there are many of us out here praying for you each and every day, we pray for you and for your family. None of us know how much time we're given here, whether we have cancer or not, any of us could be gone tomorrow. Enjoy the time you have, as best you can, educate those you can when you have the strength, take time for you and your family too, do what feels right and good and you will be doing just what you should.

Big Hugs,

Jim

[s13cybergal]

Your story is helping another friend to rise above her own problems and concerns to pray for and think about you. I can't prove it scientifically, but I believe all the friends and net buddies you have all around you improve your chances markedly. Thanks for keeping it real. Crying is not failure, its a reaction and a stress safety valve. I worry about people with real hurts who never act like it hurts. That's another kind of sickness.

Take my love with you on this journey. You have my info. I'm getting you on my skype acct as soon as I log off.

(((hugs))) soft nummy blankets and love

Jane

[Cathryn Hrudicka]

Susan,

I'm sure it is a real shock after the first doctor's percentage. It seems sort of irresponsible of him in retrospect to give you a much lower statistic for the cancer to return and set you up for such a shock, but it's hard to say without knowing all the facts. You have done an amazingly lucid, intelligent job of explaining your situation with the chemo, hormone therapy and combined therapy so that we can understand it, and the video with the graphs really help. One thing to remember is that statistics are just that, based on probabilities determined from people who have had the same kind of cancer in the past. However, you as an individual could have a different, more positive outcome. We always hear stories about people who somehow are exceptions to the statistics, and we often don't know why.

Knowing this, of course, does not help with the terrible uncertainty and anxiety about the unknown, or about going through the combined therapy, especially the chemo. I agree with everyone who has supported you in expressing your feelings by crying, talking about your feelings, getting angry in a healthy way, shaking from fear or whatever else you need to do, with the support of your family and friends. It may help to express your feelings in art, through music, writing, and other creative forms.

Having been through a few cancer scares myself, and having lost other family members and friends to cancer—and having some friends who have beaten the odds and are still here—I can to some degree feel what it must be like, what you must be going through. If you want to talk by phone or Skype at some point, just let me know. I hope we meet in person in the next year or so, and I have faith that we will. I also feel intuitively that you have stronger odds of surviving than these numbers, and thriving, because of the way you're blogging, tweeting and surrounding yourself with a caring community. You are a very special person, and you may have a destiny that defies the statistics. Even with the statistics on the graphs in the video, with treatment, your glass is still more full than empty.

In any case, we all live in the present, truly, and none of us knows how long we have left on this earth, even young, healthy people who don't have cancer. That's the real truth, no matter what any numbers say. So rock on, Susan, and love all your time on earth, and you may make it past 90 after all. In any case, you will truly have lived, loved, learned and left a legacy.

Love and gentle hugs,

Cathryn

[KD Paine]

Oh sweety, I remember too clearly the same conversation that I had with my doc almost exactly 4 years ago today, well actually it was Feb 8th, but who's keeping track :) It was going to be AC plus Taxol for me, but then they put me on a trial and I was done in 12 weeks. Wasn't bad at all. At the end my doctor said "don't worry if it comes back in 5 years we'll have found the cure." He's got one more year, but then again, he's the medical director at Komen, so if anyone can do it he can and he will. What was interesting was that I learned later that just exercising and eating right were almost as effective as the second round of chemo in terms of reducing the likelihood of reoccurrence. So if you do it all, the excercise, the brown rice, the chemo and whatever else they tell you to do, chances are you'll be playin with those grand kids at 90 -- big hugs to you

[Andrea]

Hi Susan!

I've been out of touch with Twitter, etc., and have just read your update here. I'm sorry about the stats revelation, resulting in a very hard day. I'll be believing with you, along with all your family and friends, and that you will be a green bar person, that you and your body will fight this thing and you will have a long, healthy life. Somebody has to be in the 42+24%, so we hope that one of them is you!

Love to you... rest well...

Andrea

[Lynette Radio]

Whoa! BIG difference with those numbers! Good for you for making the decision. Honestly it doesn't matter *what* the decision is, as long as you are informed and at ease with it.

I know you're in the thick of everything right now, but please take time to take care of YOU. Find a good naturopathic / homeopathic doctor in your area. Fenugreek and milk thistle in general is great for women (and I'm breastfeeding now, so 2x for me).

Hugs!

[Maria]

Susan,

You feel free to express in whatever way you need to. Those who love you will understand and will give you the space you need to do that. We've got your back.

Maria

[angela penny]

i wouldn't have guessed that you would have had to have chemo but on the bright side you're increasing your chances of being on the right side of the statistics and it's wonderfully healthy to cry. It's scary because we've all heard such horror stories, one of my grandmothers died of throat cancer in her 40's. My stepmother, who is 60, had breast cancer over 20 years ago and is still going strong. All my prayers.