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wrong about ct results

kapper48's picture
kapper48
Posts: 85
Joined: Aug 2008

First of all thank you so much for greeting my wife Carrie to this site. She is and always will be my rock, I don't know what I would do without her. I posted the other day that my ct scans came back good, Well thats what my Onc, nurse told me on the phone. Today I went to see my Onc. to find out what approuch we were going to take for the bladder cancer. While I am sitting there she tells me that she is pretty sure the cancer has also spread to my kidneys and my small bowels, she then tells me that we have tried everything she has except 1 drug I will have to get back with you with the name of it Carrie has the paper with her and she is not home right now. We have tried the flofuri and the 5 fu with all the other drugs that come with them. She then tells me that she really dosen't think this other drug will do me any good and that maybe I should go home and think about what I want to do. She then told me that I should think about quality of life. that is what I should think about right now. I asked her how much time she thought I might have and she said well I'm not god but from past exsperence I would say less than a year. Man what a blow that was to here that. I just don't understand I feel pretty good for the most part and I feel like she is just giving up on me and I don't know why. Carrie and I are going to take all 5 girls to florida in about 2 weeks, I need this vacation really bad right now. I just want to get away from all the Dr's nurses and everything and have fun with my family. When we get back were going to look for a new Dr. and hopefully someone who half *** cares. Right now I am so scared and really don't know what to do or where to go.
Pat

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Oh, that is a tough one!! So sorry! Please do get second opinion! Try and enjoy your vacation. one day at a time.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Wow, Pat

That's a real 180! This kind of news is very unsettling when you hear it in person - your brain just begins to race around.

It sounds like you have either done the Folfiri or the Folfox, both have 5fu and Leucavorin in them...Folfiri contains Ironetecan, which goes by Camptosar or CPT-11. Folfox contains Elotaxin, fondly known as Oxaliplatin. That one's got the bad neuropathy and cold sensations in it.

I had to calm down myself - after reading this my heart was racing and my blood pumping, and my brain was thinking faster than I could type.

Better now, so here are a couple of points to hang onto:

1. It is TIME to begin your search for a 2nd opinion on a new onc, perhaps at the facility
you are currently going to or perhaps another facility. It sounds like she has reached the
end of her "expertise" in the war against Cancer. There are many, many options out there
for treatment. And she did not even offer to help you find a clinical trial, or if you
would qualify. Forgive me, but staying with her will probably get you to those stats she
mentions...what you need to hear right now is the word HOPE and we can try something ELSE.
Her not feeling that there is hope will not help inspire you and you need to BELIEVE that
whatever you are doing will only give you hope with the outcome of cure. If she does not
believe that, then you must find someone who has. True victory and success will come from
this approach.

2. She should not have told you what her "prediction" is for your outcome. As many have said,
I have not found one doctor who can "accurately" predict when a person checks out of this
world - that's for Bigger Minds than ours to make this assertion.

I had a team of doctors tell me in Dec07 at Christmas that I probably would not see next year's Christmas - guess what, Pat? I saw Dec08 and just finished Dec09 - 2 years by my count. And they were all so SURE that within ONE YEAR, the cancer would return to my liver. They were almost gleeful in their "prediction" of that. Guess what, Pat? Proved them wrong again - I just love proving doctors wrong.

I respect the medical community, but you have to watch them - take what they say, but don't buy it hook, line, and sinker - be your own advocate and do your homework, and show them that you are a PROACTIVE member of your cancer team and you're not going to take this lying down, No sir, no way!!!

I believe in Quality of Life and I'd like to think that at any given point, I would know when to throw in the towel - BUT not before a good fight!!! And I just love a good fight!

And let me tell you this and I know this - my friend Pat/Kapper48 is a fighter - he's not gonna' quit - he's gonna bloody Cancer's nose - and he's gonna' hit Cancer square in the jaw, just to let Cancer know that good ol'Pat is still here - and still with US here on this board.

I've come in a short time to really like you Pat - you seem like a very gentle man and a good family man, great husband and all of that. Thanks for sharing your thoughts with us, it really helps to get to know someone like this.

And because, I like you, I am passionate in this post, 'cause your onc just lit my fuse today and it's hard to get me upset anymore.

Now, I need a favor from YOU - I want you to get MAD...get angry...and tell the Cancer, "You want some - you got some!" I said you were Nice, but you've got to get MEAN now in this stage of your journey - just be MEAN to the Cancer and let it know, "In for a Penny, In for a Pound."

And I'll close with my favorite Cancer Battle Cry: (Say it with me, Pat)

"Cancer does not define me, but HOW I live and fight Cancer DOES define me."

And by my definition, Pat is a fighter and big time warrior!

And on a lighter note, your wife Carrie, was lovely, so nice to meet her.

Pat, I'm pulling for you very, very hard now....go get that vacation you need, it's a good time. And when you come back, "Your Mind Will Be Right to Fight."

BTW...I'm 48 too, Pat :)

Your Friend
-Craig

kapper48's picture
kapper48
Posts: 85
Joined: Aug 2008

Craig, thank you so much, You just lit the fuse on this stick of dinamite. You are so right of what I need to do. I will fight this cancer with everything I have and I will beat this monster into the ground. Again Craig thanks I needed that comment from someone and I'm glad it was you.
Pt

linandtom
Posts: 67
Joined: Dec 2009

I hate to hear anytime a doctor or nurse tells someone you have blank amount of time. Who gave her the power to know this! None of us may make it home tonight - no one knows if they will have a tomorrow! Cancer pts or no cancer! You live today - you enjoy your family - you find a new doctor to give you new hope. Hang in there and please keep the fight!

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Never expected you to be posting this news. I thought the bladder cancer was bad but, ok, you can deal with that one but this new stuff, yikes. I don't know where you live but if you let us know I'm sure the board will let you know the cutting edge places to get a second opinion rather quickly and maybe even the name of some doctors. If you can get a jump on this before you leave for vacation then you will be prepared to get the ball rolling when you return. A NCI (?) facility is probably what you need.

Here in Michigan, that would be the University of Michigan, Ann Arbor, Michigan. Heard they do some wild stuff, think outside the box, stuff there.

I am so sorry for this news. I keep searching for words of comfort for you and your family but nothing seems appropriate. I, as well as others, care very deeply when one of our own receives bad news. Tina

kapper48's picture
kapper48
Posts: 85
Joined: Aug 2008

Hi Tina, Thanks for replying, I live in st louis missouri and go to siteman cancer center its one of the biggest cancer centers in town. Thought I was in the right place. If you or anybody else has any idea's where I could go let me know, Will travel anywhere I have to I mean anywhere this country or another if need be.
Pat

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dwcollette
Posts: 1
Joined: Jan 2007

I agree....

Second Opinion...that's what I did and it might have saved my life.

MDAnderson.org

Contact them today!!!!!!!

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

It's second opinion time!!!

In the meantime, enjoy the vacation!!!

Hugs, Kathi

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

well Pat that news just stinks! I feel so badly for you that you learned about all this in the way you did.

I agree with the others....do start to explore another doc and ooooh a Florida vacation...do it

hugs, mags

AnneCan
Posts: 3692
Joined: Oct 2009

Pat, I am so sorry that you had this news today. I think Craig & Tina gave you some great advice. I agree with Tina about starting the search for a 2nd opinion now, rather than after your vacation. Sometimes it takes a little time to set up appointments; maybe if you start now you can have something lined up for when you return from that lovely vacation. I don't like the term "pretty sure" when it comes to cancer, we need to know what we are dealing with & so do the doctors; however "pretty sure" leaves the chance it hasn't spread to those organs. Craig gave some great "fightin' words" & what he said about you is true; the fact that you are a wonderful family man comes through in all of your posts. I think it is awesome you are going to Florida with your family; I hope you have a wonderful time. We are all rooting for you & for you to get a 2nd opinion from a great doctor.

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

Hi Pat…I am new here and also new to Cancer…but from your post and the replies I have seen, it seems like you are a fighter.

You said you are scared and unsure of what to do or where to go…here is my advice for what it is worth
Take a deep breath or two or three to help calm yourself
Remind yourself that none of us on the planet know when we will die, so your doc is more likely wrong than right. Heck, we don’t even know that cancer will be our cause of death. All that is up to a higher authority than any of us.
It sounds like you have a wonderful family who is worth fighting to be with. Don’t let the doc’s gloom and doom take away that fighting spirit.
Get in touch with those you trust to find another doc, a clinical trial, alternative treatments. Doing something proactive will help with the feeling of being scared.
Being unable to be in control of cancer is one of the things which is the scariest…so take back control of what you can in your life…enjoying your family…making that search for someone who believes your fighting spirit makes you a candidate for additional, yet untried, treatments.

We each have to do what is best for our personal situation when it relates to doctors and treatments, but we all have one thing we must do…continue to get the best out of every day we are here.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Pat,

I'm sorry to hear the original ct scan news wasn't accurate. I am sending you a private message- please look for it- I have some info I want to share with you.

Lisa

Annabelle41415's picture
Annabelle41415
Posts: 6512
Joined: Feb 2009

That is terrible news, but I agree with the others, please seek another opinion. Your doctor shouldn't be giving up on you so easily. Not sure why the oncologists nurse gave you false or inaccurate information. Maybe she needs to stay away from that. Glad you are getting away, it will be good for you. Enjoy the time with your family.

Kim

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I am so sorry to hear about your ct results and awful oncologist appointment. I totally support your plan to find a new doctor!

Have a great trip to Florida. My folks overwinter in St. Augustine Beach and I've made many trips there over the past 10 years or so. Have a blast!

Peace and blessings... Rob; in Vancouver

“Life is short,and we do not have much time to gladden the hearts of those who travel the way with us. So let us be swift to love, and let us make haste to show kindness.”
Henri Amiel

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Hi Pat, First of all Doctors dont know S%&T!! I've worked hospice for many years and know many people who would be long gone if they listened to there doctors. Dude, I know a guy named Mark who they said "You got 1 year" and is still loving life 10 YEARS later. He told me he laughed in his doctors face and said "We'll just see about that".

You go on that vacation with your kids and have the time of your life, Go catch a fish for me!! Then when you get home you put on your fighting hat and fight like you have never have before. If your hands get too tired to punch then you kick, when your legs get tired you bite, if you teeth fall out then you scratch. You fight till you cant fight anymore.. You fight for your kids, you fight for your wife, and you fight because you can!!

That's all I have to say for now. Call your doctor and tell her "We'll just see about that"

Life is funny sometimes

Brooks

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I've read this thread several times over the last two hours and it just irks the crap out of me! Yeah.... what Craig said!

She thinks? She's pretty sure? ACK! It sounds like your onc IS giving up and homey don't play that! We're not quitters and neither are you! We'll show her!

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

That sucks, cancer sucks! but I agree with everyone else, I'd go to Sloane-Kettering or MD Anderson hospitals, they are the number one hospital with Sloane being second! If I had the funds, I would go there. I don't believe in doctors predictions of how long anyone has to live either, only God knows, we're all in his hands, and it was great of your wife to join us, she's so sweet! You have a blast on your vacation with your family, and don't give this cancer another thought while on it, just be you, and don't let it take you over. There are so many miracles that happen on this earth, and never lose the hope or faith! We love you, my brother!

Hugsss!
~Donna

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Pat,
So sorry to hear about this news. I agree with the group, get a second opinion. It is good to hear that you and your family are going to get away together. I will pray that you can enjoy your beautiful family and have some time when you are not thinking about this horrid disease.

My prayers are with you.

Aloha,
Kathleen

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

ya know, really, your ex-oncologist was really just telling you, "I can't help you anymore, if you stay with me, you have a year, so time to move on!" So I vote with everyone else, time to move on Pat! Her "expertise" and usefulness in dealing with your cancer has reached an end. I will say this, direct your anger toward the cancer, reserve your energy for the fight ahead- don't waste any more oxygen on ex-doctors!

Have a wonderful Florida vacation!

lcarper2
Posts: 638
Joined: Dec 2009

PLEASE join me in a healing prayer for Pat set your watches for 1 hour from now and at that time come to the computer and bring up this post and say a healing prayer for Pat. I have had this done for me and I claimed the healing God had for me and in about a month I know I am going to her you are still cancer free...see you in an hour.

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

So, my sister was dx with stage IV cc in 03/09 with mets to liver, ovaries and peritoneum. She has been on chemo since April, and originally the surgeon that did her emergency surgery gave her very, very short time to live. She sought a second opinion and was being treated at a TOP cancer center. They had hopes she would have a liver resection in August. Well, pre-op showed the cancer spread. She went back on chemo and the TOP onc. said, he could do nothing more for her. That did not stop her. She sought another opinion, back on chemo and fast forward to today. Her tumors have all shrunk and if all goes well, she will have liver resection in a few weeks. Do not take no for an answer. Do not give up! Seek someone that is willing to try something else. Noone knows how much time you have left, and if they think they do, then run.
Keep the HOPE alive. You are in my prayers.

Bear23's picture
Bear23
Posts: 84
Joined: Jan 2010

I do agree with the others about getting a second opinion. If not, you will always be asking "what if". But you are the only one who can make those decisions. I am so sorry for this news and it seems to me that there should be some trials to look into. I will keep you in my prayers. Have a great vacation! We all need a break once in a while.

Bear

lcarper2
Posts: 638
Joined: Dec 2009

God I pray for the healing of Pat. God we know you are the one. I ask that your hands guide the hands and minds of the doctors that will be treating him and show him your divine power in healing his condition this I claim in the name of your son Jesus amen...

kapper48's picture
kapper48
Posts: 85
Joined: Aug 2008

Thank You Icarper2, I really appreciate you praying for me like this, it really truely means alot to me. And I want everyone to know that I will get my second opinion and even a 3rd or 4th if need be. You are all so kind and I am at a loss for words right now. Craig you inspired me with your comments and I will think of them while I am going after this cancer. I would like to meet you in person some day, I think we would have alot in common.
Actually I would like to meet everyone on this board someday, We all have alot in common
Pat

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hey Pat

I'm glad that I was able to help you :)

Your words touched me this morning. I thought about you last night and how you were feeling. I re-read how your "stick of dynamite" was now lit. I was like "Yeah, go get 'em, Pat, full steam ahead and damn the torpedoes, we're ALL IN for this one. You had me inspired!

I would love to meet you as well. There's something about you that is so genuine and sincere. I thought to myself if Pat is like this "On the Board", he must be really a likeable guy in person! We probably would have alot in common. We could show each other our "battle scars", LOL :)

I'm normally EZ going and such, but yesterday, I put my war paint back on and I was ready to come where you are and kick the $HIT out of your Cancer myself. You ever need a "hand" in the battle, I'll stand beside you and fight right along with you. Us Texas boys can be mean and stubborn when the battle cry goes out.

I'm not a 1/2 way guy - "In for a penny, in for a pound."

Thanks for letting me be your friend, Pat. ALL OF US are surrounding you with love and support. We're not gonna' lose you, no way, no how!

As us Texans did at the Alamo, you and I have "Drawn" the line in the sand and Cancer has crossed that line - and now "it's on" and IT won't know what hit it by the time we are done with it, I can promise you that.

Man, I'm ready to battle with you right now!!!

Big Tex
-Craig

thready's picture
thready
Posts: 475
Joined: Sep 2009

Pat I have read so many comments on this board about people who have been told to give up, but they did not and found others who would give them threatments and they have not only survived but they have conquered. This is where you are now and where you need to go now is for the victory!

I wish we could all show up physically at your onc's office and we could all tell the Dr what we know to be true! I think the entire office will turn and run! If your dr wants to quit they should at least help you find someone who won't!

I know one thing that has been a big help is when I am in question about things or I get down I think about all the miricles that have happened since September 3rd-my diagnosis date. I know I will see more miricles, and I know you will too!

Please Pat do not quit. Holding you and your family in my prayers
Jan

lcarper2
Posts: 638
Joined: Dec 2009

Thanks for your reply I am a believer in the power of prayer I had my tumor inside me for 3 yrs before I found a doctor that could hear me. I know when they told my husband they had never seen one so close to bursting that hadn't I knew God had wraped his hand around it and I knew I had already beaten satan at the game. Think positive and get another opinion.

hugs Louann

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

I've just read this and it just is awful about how you found all this out. I agree with folks to go look for someone else and try something else. You're not alone -ever -no matter what.

lots of love, Leslie

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Oh, my goodness. I can imagine how shocked and upset you must be after hearing this news. Especially after thinking things were pretty good, relatively speaking. I'm so sorry! I do agree with everyone who has said that you should check into other medical facilities and other doctors.

Please let us know what goes on, and know that I will be praying for you and your family.

*hugs*
Gail

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

I get so mad when drs think they can play God. don't walk, but run to the second opinion and third if need be. You have so much to live for so get living!!! Enjoy your vacation and know you will fight this. Hold your head high and get mad just like Craig said!!!!
Go Fight Win!!!Jill

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

This isn't a joke? I just can't believe it...well, yes I can. You need a second opinion. And a third, fourth or fifth until you get the right answers.

The first thing you need to know is if the cancer has really spread. Did your onc tell you how she came to this conclusion? Medically documentable evidence instead of hunches? Geesh

Start your search now for that second opinion while we have you all fired up. That gives you something to keep your mind occupied until your most fabulous family vacation. A cancer vacation. Make a rule to laugh every.single.day and NO talking about cancer.

Geotina is right about u of Michigan thinking outside the box. I've had radiation to the liver and the celiac lymph nodes. There are very few places that even attempt this. I wasn't a candidate for sir spheres, cyber knife or anything else. I was out of treatment options so my radiation onc and my gastro onc made something up. These two men saved my life. I'm not being dramatic - it's true. 2009 I was totally on 'Bill & Ted's Excellent Adventure.' When it moved on to 'Bogus Journey' I opted out. LOL

Good luck with those new opinions and finding a new 'home'. Enjoy every minute of that vacation. You deserve it!

Hugs and Prayers,

Kimby

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

Oh MY!! Definitely start by getting a second opinion! We will be thinking of you every step of the way.

-Sheri

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Pat,

I agree with what a few others have said, that it's probably time for you to move onto a new oncologist. Although it wasn't the easiest thing to do, I changed oncologists a year and a half after my diagnosis. I have been with my new oncologist now since this past June. I loved the personality and approach of my first oncologist- it really did make a difference in how I felt about things because he was always so very positive. Because of that, it was even harder to make a change. But, I realized that his knowledge was limited and that I'd be getting better care with someone who was more up on the latest treatments, clinical trials, etc. My former onc made a couple of mistakes with me too that contributed, I believe, to my first recurrence.
It's time to move on, Pat. Also- I'd love to hear your reply to my PM that I sent you.

Take care,
Lisa

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

To everyone else reading this- I just got off the phone with Pat- he has new hope, as he has contacted Dr. Cantrell and will be seeing him soon. It was great talking to Pat!

Hi again Pat-

It was really great talking to you & I'm sooo glad you're excited about Dr. Cantrell and that you'll be seeing him. I'm sure you'll share your info about that with the board soon. As you also said on the phone, it will be very nice for you to go on that trip with your family to Florida and get away from the cold and of all talk about cancer. I believe you'll turn out all right. Keep in touch!

Lisa

Fb489
Posts: 69
Joined: Sep 2009

Find a new ONC, try another chemo regimen
and read the book BEATING CANCER WITH NUTRITION.

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

what a shock thats how angel and I felt when we got the news like that. Drs don't always know, I am sorry about the bad news but keep trying don't give up .

michelle

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

of this board is awesome, I know you will find the answers you seek here. They will lead you in the right direction. Hang in there..
Blessings,
Joanne

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