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Doctor gave a timeline-what would you do

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

Hi,
As many of you may know, my sister was dx with stage IV cc in 03/09 with mets to liver, peritoneum. She has been on chemo since, and underwent a liver resection a few weeks ago that was aborted because they found the cancer had spread and the liver was not resectable. During the operation, they did find another blockage and she had her upper colon resected. She was in the hospital for 8 days and has recovered slowly. She went back to the onc. (the same one Lisa42 saw on Thursday) and he gave her a "timeline" of 2-3 years. (this same doctor did not visit her or come to see her the 8 days she was in the hospital and she had to travel two hours to see him on Thursday). Would you switch?
During the consultation, he thought she may be able to have HIPEC and even told her that may be a "cure" for her, but that he would have to consult the radiologist regarding her liver tumors. So, while she waited with much hope and anticipation, he consulted with the radiologist to only later say no, she was not a candidate.
I also wonder why he was offering HIPEC when he could have offered it in conjunction with the liver resection. Somehow, it seems the "team" approach is not working there. This process makes me sooo angry!
Thanks for listening.
Marie

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

Hi Marie, I'm sorry your sister is having to go through all of this. Personally I have never been fond of the "time-line" approach with doctors. It's a guessing game and I think while there may be times when things are dire and one may need to get things in order so to speak, a time-line like 2-3 years seems out of place since so much can happen as far as new treatments go. I do not know if I would switch or not, I would possibly consider bringing some new faces into the discussion though.
It is infuriating at times. I'm sure others will have some insight to offer you.
-phil

AnneCan
Posts: 3693
Joined: Oct 2009

Hello Marie,

I am so sorry for what you + your sister + the rest of your family is going through. My surgeon once told me "I don't have a crystal ball" + I am really glad he doesn't. I truly don't believe anyone can accurately tell someone else they "have" 2-3 years left - everyone is different, their cancer is different + in that 2-3 years who knows what procedures/chemo/surgeries etc. are going to be found to be more effective than something that was being used even 5 years ago. I personally know people who were "given" cancer prognoses (i.e. 3 months or 1 year) + are still cancer survivors 15 + 20 years later. Please tell your sister I am thinking of both of you + hope she will be one of those people who totally proves their onc. incorrect.

You are an amazing sister + I am sure that is making a difficult time a little easier.

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

Hi Marie,

I'm not much for timelines either. Fortunately my oncologist hasn't offered any. And I haven't asked. Some folks do like to know the prognosis in timeline terms though.

What your sister's "timeline" says is that "this is serious". You have both already known that so nothing has changed. Get out there and get the best treatment option going from the best cancer team you can muster. If that means changing doctors, so be it! Find a team that can offer some hope!

Your sister is very lucky to have such a caring companion as yourself on this journey.

Peace and blessings... Rob; in Vancouver

"Hope is the most indispensable virtue inherent in the state of being alive. If life is to be sustained hope must remain, even where confidence is wounded, trust impaired."
Erik H. Erikson

zigswife
Posts: 62
Joined: Jul 2009

Marie-
I have been thinking about you and your family. If your sister is feeling like this person is not a good match for her, it may be time to continue looking. We have seen several different doctors/surgeons and ask them all to serve as consultants when needed. That way, we are not obligated to use them as our first line person but let them know that they will be hearing from us again down the road. I hope your sister continues to heal and feel better.

scottwynter's picture
scottwynter
Posts: 3
Joined: Jan 2003

Marie,

July 2007 I was diagnosed with terminal colon cancer (stage IV). My situation was very similar to your sister's. Does she have the option of taking Avastin? I am now without any evidence of disease, and I believe it was Avastin that saved me.

Good luck,

Scott

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

You are an inspiration! Thank you for posting and giving us all hope.

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

If HIPEC is not feasible, and liver resection is not feasible, perhaps different chemotherapy agents might work better than what she has tried previously.

--Greg

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

Marie,

What is your sister's goal? Is it to meet the stats out there? Is it to exceed them? Is it cure? I'd say most of us are working towards a cure even though it defies the odds. How can you reach a cure if your onc team has a goal of 2-3 yrs?

I had a scary week and almost didn't make it. My onc was clear where he wanted me because he doesn't want hospice called in and we aren't ready for pallative care. If it weren't for him and the rest of my team, I'd be stuck fighting alone. I can't have doctors that are ready to give up before I am. JMHO YMMV

Outwit. Outplay. Outlast.

Kimby

AnneCan
Posts: 3693
Joined: Oct 2009

Hi Kimby,

You offered good perspectve here. I am sorry to hear you had a tough week; I hope this week is better!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Its my opinion that when an opinion like that is given then no matter how brilliant the Drs you have are they have run their personal gambit. They are simply out of options with their abilities or simply with what they have to work with. If that's what you feel and can get her in somewhere else for other opinions then that's what I would do. I would certainly ask her if she wanted to go somewhere else for possibly the same answers or maybe hope for a different option, one that maybe the other Drs couldn't supply her. That is a tough choice but one that she needs to decide for herself....Good luck and Love and Hope for you all...Buzz

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

Your advice and wisdom is always appreciated. I would love to meet everyone here someday. That would be awesome.

jams67's picture
jams67
Posts: 927
Joined: May 2006

Many of us will be in Fort Worth at CP8 scheduled for October 13 at the beautiful Worthington Hotel. Rates have been worked out for $139 per night. We will be posting more as soon as Don(my husband) gets the contract and signs it. We are very excited about the rate as the hotel's normal rack rate is over 2 hundred dollars. We look forward...as survivors and discuss where we have been. Mostly, we laugh and make merry and get to know each other.
Jo Ann

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

Thank you, You are sooo right. You need a team that is going to be with you for the fight, not quote some statistic. I too believe in having a team that believes in you. Makes it hard hearing a timeline from an "expert".

Love the outwit, outplay, outlast. I am a huge fan of the reality show "Survivor". And clearly, you are in your own game and out there to win the prize.

Marie

Lovekitties's picture
Lovekitties
Posts: 2884
Joined: Jan 2010

Sounds like your sister's current docs have used up their expertise, so I would opt for another opinion. Timelines are just a guess regardless of who gives them. Every day is a new day in treatments and cures so dates mean little.

Many doctors are unthinking in their talks with their patients. I am a firm beleiver in knowing the truth from doctors, not being given 'sugar coating' for the moment. The let down is always harder than the truth.

Hopefully you can find a set of docs who will offer other options and will recognize your sister as a person as well as a patient.

Marie

eric38's picture
eric38
Posts: 588
Joined: May 2009

I say kick the timeline to the curb. Solid timelines don`t exhist. They are all opinions. Your sisters body might have a totally different opinion. If you compare it to an estimate. Estimates are always lower than the real amount. Take that timeline and punt it into oblivion. The only one that knows how long your sister has is God.

Eric

eric38's picture
eric38
Posts: 588
Joined: May 2009

Kick colon cancer in the butt. That punk already took the whole right side of my colon and invaded my bloodstream, not to mention taken up residence in my liver. I say we take it out back and beat the crap out of it!

Eric

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

That would be awesome to make some huge colon cancer thing and have everyone meet to watch it burn; kindalike burning man only burning cancer.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Let's go, colon cancer needs a good kick in the behind and i am pretty sure a bunch of us will be lined up to take our turn at it! Hey wait, that's where we already are, in line to kick it's behind! woo hoo!!!!!
mary

eric38's picture
eric38
Posts: 588
Joined: May 2009

That would be cool. To get a whole group of cancer patients together with some kind of symbol representing cancer made out of flammable parts and have a big old celebration and bon fire out in the middle of a huge field. So many people would love watching cancer burn.

Eric

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

in october 2005 I was diagnosed stage IV
and given three months to live.
I am no ghostwriter.

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

Thank you!

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