How can they know this?

[KirisMum]

Kiri had her first scans after her Stage IV diagnosis last April and met with her oncologist yesterday. She had mets to her bones, liver, lungs and lymph and was on Taxol, Herceptin and Perjeta (taxol weekly, H and P every three weeks) for 12 weeks. Her oncologist told her she had a "Phenomenal" response to the chemo, all cancer gone from lungs, bones and lymph and new growth in bones, but liver lesions, while shrunk, still there, and no new liver lesions. So they are keeping her on a reduced dose of taxol, 2 weeks on, l week off, for 3 more months and then will switch her to P&H until progression, which they estimate in 9-12 months.

Her oncologist also told her that given the meds available, and the type of aggressive cancer she has (triple positive), she could expect to live another 5 years. (Originally, I think she had told K she had similar patients who had lived 10 or more years).

This is Dana Farber, a top institute, and K (and I) have full faith in her team. But how can they say 5 years, with all the recent research and new meds? Or am I being pollyannaish in hoping for more? Is this in fact a reasonable estimate?

Right now aside from the se's from taxol, she is perfectly healthy. She's strong and active, horseback riding, rock climbing, living a normal life aside from the 2-3 days that the tx throws her back. Her liver function is normal. She had multiple lesions in her liver; I don't know how many have shrunk, or by how much.

Please honestly tell me what you make of this.

[conomyself]

I don't know why they say things like that. I've told every onc I've seen to please not predict my future, because I know they can't. They don't know what is going to happen to any individual.

I have a degree in statistics, and they teach you in the basic course that no matter how good the statistics you cannot predict the future for an individual.

If you look at signatures of many of the stage 4 gals on this site they have gone much longer than 5 years, and are still going strong!

Love,

Rachael

[Lauriesh]

I agree with Rachel. The drs just don't know how long we have. I told my onc when I was first diagnosed that I didn't want to hear anything about my prognosis . That being said, the average life expectancy of stage 4 seems to be 3-5 years. Yes, there are some that live 10 years or more ( and those that don't even make it 2 years), but after being on this site and 2 others, it is rare to see someone make it to 10 years, and 3 - 5 seems to be average.

The hope is new drugs will be approved, hopefully soon enough to help those of us who are stage 4.

Laurie

['lizbeth]

I'm with Rachael, it really is not predictable currently. Your daughter is doing great.

My husband was given 6 months to live in 1998, its 2013 and he is still putting up with me!

Strong & active, living a normal life . . . sounds like an indicator to me she will beat whatever odds are thrown out there.

Imagine how science will change in 5 to 10 years. I don't remember hearing so much talk about Perjeta or TDM1 years five years ago. Now it is part of standard of care.

Take deep long breaths in, hold for count of 4, slowly let breath out. Repeat 7 times.

Envision a future with your daughter happy, healthy and cancer free.

[BonnieR]

Hello again. Your message contained a lot of good news about her response to treatment and her continuing recovery
. I never know what to make of these sorts of predictions of life span. Especially in a situation like hers where she seems to have exceeded expectations already. I suppose doctors feel the need to give patients some kind of perspective. But it's so arbitrary when medicine is evolving so quickly and advances being made every day. It seems so wrong to put a number on it because, of course, no one can possible know that. And your girl is just the sort to defy statistics anyhow! But of course you are scared and sad. And we are here to listen and support you always. Keep the faith. That's important!

[Rolepaul]

Nina was told 90 days in January 2012. She is going strong and we are headed down to MD Anderson on July 13 for eval mtg on July 15. So far she is rock solid no signs of disease. Doctors talk in percentages. 10 yrs and 5 yrs are the same to them. As long as people keep trying, the disease keeps having longer times before it is a problem. You have a great team, do not switch at this point.

[NEDenise]

KirisMum,
Unless that doctor is also a psychic... I don't think I'd give much credence to what he/she said. In fact, I'm surprised they even quoted a number at all!
Treatment is not 'one size fits all' because we're all different. I think the fact that Kiri is feeling so well is a good indicator that her body is healing.

I'm stage 4... and I could get hit by a bus tomorrow... or I could still be kicking when my grandchildren are born. I don't know which will happen, and neither does some doctor.

Like Bonnie, wise woman that she is, pointed out... medicine changes every single day. Ten years ago there was no Herceptin. Six months ago, we didn't have TDM-1.

Take a deep breath.
Enjoy all the good news on Kiri's scan.
And, trust that whatever happens, you'll make the right decisions, and handle it.

Sending prayers for peace and good outcomes
Denise

[KirisMum]

Thanks so much, all. This is incredible support, and means a great deal to me. I am no ostrich with my head in the sand, but with everything changing so quickly and dramatically in breast cancer treatment and research, this latest prognosis just didn't ring true.

Another thing that didn't add up: when we met with K's oncologist right after she was diagnosed Stage IV in April, based on the scans done then, and the liver biopsy, her oncologist said she could live 10 years. Now that sounded like a lot to me, but I was happy to take it. Now, three months of taxol, herceptin and perjeta later, her tumor markers are down to normal, the cancer in her lungs, lymph and bones has disappeared, there is new bone growth (probably due to her strenuous physical workouts), her liver mets have shrunken, there are no new lesions, and she has has, in short, a "phenomenal" response to chemotherapy. So HOW, on the basis of this, is her prognosis suddenly cut in half??

I know I'm quibbling, and there is really no answer to this, and more than that, I was not privy to this latest conversation, so don't really know all the parameters -- because her cancer is particularly "aggressive," she says, and liver mets are the most dangerous, because there was more bone involvement than they thought---but they knew about the extent and profile of her liver tumors from the beginning, and the bone cancer is resolved....?

It's enough to drive anyone crazy.

I thank you all for your most welcome and informed responses. Hope everyone is having a wonderful Fourth!!

[sassy]

Kris mum,

Having been at SABCS the past few years has shown me just how much research is being done on the HER+ cancers, and how quickly new targeted therapies are being developed. I dare say no one can come close to predicting survival rates because of the continued discovery of new avenues of treatment.

Being triple positive puts us in the position of most likely having the most treatment options of any other type of breast cancer.

"Do not let tomorrow's worry rob you of todays's joy."

Be vigilant, but enjoy life now.

My best to you,

[tricia keegan]

A response like that is wonderful and even if the Onc is correct (which is doubtful) bu five years there will be many more drugs available so I think you both can breathe and enjoy life:)

[Lien]

I have travelled through cancerland for over 9 years now, and on this journey I've learned that no doctor can predict how any individual will fare. A phenomenal response to initial therapy is a very good, hopeful sign. She will live as long as she will live, regardless of what anyone says.

With all the new developments, if I were her, I'd aim for 30 years survival. And I know of patients whose cancer was completely eradicated. Why shouldn't she be one of them? We just don't know.

And besides: none of us knows how and when we will die, or from what cause. We only know that we will die one day. I try to make the most out of every day, just in case...

Love

Jacqueline

[NEDenise]

Well said, Jacqueline!
That's the kind of thinking we all need to latch onto!

Thanks for being a bright spot in my morning!
Denise

[sarah]

will they put her on TDM1? sounds like she reacts well to chemo and as others have said, so many new things are coming out, cancer may change completely. Enjoy life is the most important thing. Prove the onc wrong.
hugs and love
sarah

[KirisMum]

I am so heartened and encouraged to read these responses. Jacqueline, that is a beautiful outlook. Thank you so much. Thank you all. I'm humbled and grateful that in the midst of all your own trials you ladies are so generous in reaching out to talk me off the ledge. XOXO

[Jackie07]

When it comes to statistics/prognosis, everyone needs to read Steven Jay Gould who had survived 20 years more than the predicted average/median years given by his doctor. http://people.umass.edu/biep540w/pdf/Stephen%20Jay%20Gould.pdf

[jellybean]

I am glad your daughter had such a great response to treatment. Of course, her oncologist can't know how long she will live. All the doctor can do is give his best estimate, based on the median of how patients like your daughter have done in the past (without the new medications that are coming along). My oncologist was very reluctant to give me any estimate, when I was diagnosed with widespread metastatic disease (lots of bones, liver, and lymph nodes). I pressed and pressed, wanting to be able to plan my approach to work, finally sending her an email with multiple choice questions. At the time, she said 5 years, outside chance 5 to ten. Well, next month will be 5 years since I received her email, and I am still (knock wood!!) doing great. Yesterday, for example, I rode my bike 40 hilly miles and then swam a few laps. It has been almost 6.5 years since my original diagnosis (with was stage 4 from the beginning). In November, I will hike to the bottom of the Grand Canyon. So, don't lose hope! Her doctor probably wanted your daughter to have a sense of the possible time frame, so she can seize the time available to do what she has always wanted to do.

JB

[ElaineM]

Doctors can't know how long a person will live.
They have data from clinical trial results and other things that are purely related to science. They do not take human potential, a patient's attitude and what the patient is doing to help himself or her self into consideration.
For example if a person has is aggressive, has a positive attitude, eats healthy and exercises that will help a person live longer.
Doctors do not think about those things when making predictions.
A doctor gave me 6 months to live in January 2000, but I decided that was not going to happen.

[StephN]

I wonder if they can knock down some of the bone mets by radiation. She still has the spots in liver to measure for purposes of tracking whether treatment is working or may need changing.

Local treatments are often part of an extended life with cancer. You are a caring, loving mum, and trying to maintain a balance in the face of something like a stage IV cancer diagnosis is asking so much of families.

"Never give up."

[CoolBreeze]

I have a very good cancer friend, one where we share all those cancer secrets, you know - the only one who gets it? She is on her 9th year with HER2+ cancer with spread to lung and liver. About six months ago, she had ascites and it wasn't looking good, and now she is vacationing out of the country and visiting people from everywhere.

Nobody can KNOW anything about your daughter. All they can tell you is averages, estimates, mediums and means. She may fit in with them and she may not and there is simply no way to find out.

Living with uncertainty is what living with cancer means.

If you haven't read this before, I recommend you do:

http://obront.wordpress.com/2010/12/05/the-median-is-not-the-message-stephen-jay-gould/

[KirisMum]

LOVE the Jay Gould article! Such a great man - one of my personal heroes. Thanks for the link. I'd misplaced it. :-))

Cool Breeze, how are you doing? Waiting for an update. <3

Steph, you are my hope and my lodestone; you can't know how many times I turn to your profile for reassurance in my darker days. I probably wasn't clear in my post - the mets in Kiri's bones are GONE. When I referred to new growth, I meant bone growth where the cancer used to be, not cancer growth. At least that's what K told me. She's a scholar not an oncologist, but I think she got that one right. ;-)

I just put my other child, K's younger brother on a flight to Europe for a month. He's never been abroad and will be part of a group at some point, but on his own a lot too. The Almighty is having a field day with me. :-/

[CoolBreeze]

Update: my 16 year old is spending the summer across the country in Stony Brook NY. He's studying on a college campus, doing a scientific research project. Only 50 kids were selected to do this so he's in an elite group, but like you, I am not happy with my kid so far away.

Healthwise hasn't been so good for me. They inserted the fiducials in prep for SBRT and I went downhill. Tuesday I have another prep appointment and we'll see if they still want to do this on me. I got really sick Saturday night and was barely conscious for the next 4 days but hey, here I am, bounced back, out of bed, even left the house today. Just not bouncing too high. :) I'm on orders to take it easy but I have my nephew and his baby coming to visit me and nobody to clean the house but me, so easy? What's that?

[KirisMum]

Oh, Ann, sorry to hear that! I was wondering why you'd been so quiet. :-(. Did the fiducials cause the trouble? Please don't overdo things! Nobody CARES what your house looks like! Your son's summer sounds incredible, like he's having the time of his life. :-). Bravo.

Did I tell you I'd watched your video interview on You-tube and LOVED it? So great to be able to have a window into your life with your wonderful family. Inspiring and so much love. That little piece alone is a great legacy. I'll try to find the link and post it here. I watched it several times and forwarded it to Kiri (who has followed your blog for years).

[LoisLane]

Always am so appreciative how wonderfully supportive and insightful all you women are on this site. Anne I have been thinking of you as well.You are a wonderful mother and I know you will just keep moving forward no matter what comes your way. One of these days ladies something will come out to give up more ammunition against these battles. Jacqueline you ALWAYS know what to say. You comments put things in such perspective and leave us with a lovely calm philosophy. best weekend to all Lois

[CoolBreeze]

My oncologist thinks it might be the fiducials. I didn't go to the ER (some things never change) so it's hard to say. I will have yet another CT this week (I think it's #25 now!) and they can look and see if anything is going on.

What happened was I had severe pain in the liver starting Saturday, took a bunch of dilaudid which did no good, and then started vomiting. I vomited for a while and did the college trick where you fall asleep on the bathroom floor with a roll of TP as your pillow. LOL. I woke up, thought I was safe and went to bed, but the vomiting started again. I keep a bucket under my bed now for that. Well I finally fell asleep....and did I ever. From Saturday night to Wednesday morning I was asleep. Occasionally woke up to take a sip of water, which was so exhausting I had to sleep for another five hours. (I am glad my youngest was not home, I hate it when he sees me like this although he's less scared as time goes by)

Wednesday I got up, shaky and weak and went to to the doctor, a regularly scheduled appointment. They gave me perjeta, herceptin, and zometa, but no chemo. I asked the doctor "Should I have gone to the ER?" And he said, "Why, so you could sit in their waiting room for ten hours and then be sent home?" LOL, I love my oncologist, we are totally on the same page. He said when this happens (and it has happened before without the severe pain and to a lessor extent) it is time for symptom management.

But he also thought the pain, a new component, could be fiducial. I will see what the radiation oncologist says on Tuesday anyway.

And, one person cares what my house looks like - me! And, they have a three month old baby, I can't have them walk into a house full of dog dust and spent tissues. :) My house was built in 1946 so is not easy to clean in the first place. Sigh, I would just love to move and live in a new house. Oh well, not now.

[Laurel]

Hey Kiri's Mom (lucky girl to have you for her mama),

Do you know what the difference between God and a doctor is?

(....wait for it......!!!!)

God knows HE'S not a doctor.....

[KirisMum]

LOL, Laurel :-)

[NEDenise]

So true!! Good one!

Especially true of surgeons!
:)Denise

[conomyself]

Laurel, that is so funny! I'll be repeating that one...

Rachael

[StephN]

That is because She is a GODESS!

Women were given Intuition and we need to learn to use it. There are exceptions to every "average" statistic and, Mum, keep that top of mind. OK?