To many decisions

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Terry
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Location: Silver Cliff, Wisconsin

To many decisions

Postby Terry » Wed Oct 06, 2010 1:14 pm

So I had my PET scan last week. I called yesterday and they said it will be at least a week. I usually get them in about 3 days. My husband said enjoy the indian summer and don't think about cancer for a week. That's exactly what I decided. If it's bad news I don't need to hear it until next week, if it's good, then I'll be really happy next week.

I saw my surgeon yesterday and he suggests (depending on the scan) that I have the cardiothoracic surgeon go in and take out the lymph node that keeps coming back and whatever else he finds. Recover from this surgery and then he wants to go in and take out whatever he finds and give me a permanent colostomy. I have one lymph node in the sacrum that is half necrotic. It was gone for about 9 months and then showed up this past May along with one in the chest. He said this is the only way to be sure that the cancer doesn't spread to the tailbone (very, VERY painful). This really scares me. If I knew this was my best chance for survival, I'd do it, but HOW do I know this. My other option is (depending on the PET) to have some type of radiation, tomotherapy, steriotactic radiation, etc.

I really hate all these decisions!

Please pray that the Lord leads me into the right direction.
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

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BrownBagger
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Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: To many decisions

Postby BrownBagger » Wed Oct 06, 2010 1:24 pm

Sounds like second opinion territory to me, Terry.

Best of luck on the PET results. I don't even have any scans scheduled, and already I'm sweating out the results. Freaking cancer....
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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starbuck30
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Joined: Mon Apr 12, 2010 2:21 pm
Location: Milwaukee, WI

Re: To many decisions

Postby starbuck30 » Wed Oct 06, 2010 1:36 pm

You've been in my prayers since I started this board, Terry. You were one of the first and sweetest welcomers when I arrived (new word? "Welcomers"?). I'm sorry you have such hard choices to make and will continue to keep you in my prayers. I agree with Eric. Second opinion sounds like a good idea, just to be sure about your options.

Much love to you,
Starbuck
2/26/10 Dx'd colon cancer
3/12 complete colerectomy, temporary ileostomy
3/19 pathology came back Stage IIIC CC
4/2 started FOLFOX
Chemo "precautionary", last CT showed NED PLEASE God let's keep it that way
9/16/10 FOLFOX finished! Woo hah!

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Ashlee H.
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Location: Southern California

Re: To many decisions

Postby Ashlee H. » Wed Oct 06, 2010 1:38 pm

Terry - I just hate this frickin cancer! I hate all the decisions we have to make. Our doctors can only give us the facts and their opinions, but they have no clue how the cancer will react. I try very hard to remember I can take my time in making decisions. I know you have Faith, and I have seen so often God's hands on my journey. I've been filled with anxiety lately now that the cancer has come back. I feel like I'm on a train that is going to crash and I will be killed...and there is nothing I can do about it. But, I don't know when that will happen. I'm along for the ride. Sometimes I see beautiful landscapes, and other times black tunnels. I've met all of you (although most of you are able to get off at one of the train stops), and that has been a treasure. Your hubby is right - enjoy the next week. Breathe. Ignore the damn Cancer for now.

Ashlee
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

clarabelle64
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Facebook Username: claire beaumont

Re: To many decisions

Postby clarabelle64 » Wed Oct 06, 2010 1:45 pm

Terry
I am sorry you have this unavoidable decision to make and I too hate this filthy evil disease more than I can say...I have no advice except to reiterate the advice of the others...getting a second opinion seems logical. I will pray for you at my daily Mass Terry.
Clarabelle
Clarabelle, Mother of Deborah who has CC with mets to liver + lungs.
Has been on Folfiri then 5FU + Oxi
Lung Mets progressed
Currently on Intravenous Vit C + diet + supplements
My darling girl passed away 18.8.2011

dj2158
Posts: 461
Joined: Sun Oct 12, 2008 6:42 pm
Location: New York

Re: To many decisions

Postby dj2158 » Wed Oct 06, 2010 2:06 pm

terry,

i was wondering when you were going to post. i would also get a second opinion or third. hopefully, the scan will bring you good results. i have faith that you will make the right decision for you. you are in my thought and prayers. keep us updated.

donna
Donna
Dx 10/'07 age 54 3CC Sigmoid 1/25 nodes lap
Folfox 11/'07-4/'08
Vats Lung 7/'09 met
Vats Lung 7/'10 two mets, Irinotecan/Xeloda 9/'10-2/'11
Lung Resec, 3 1/2 rt ribs 4/'12
10-15 spots both lungs & 1.4cm nodule, 7/'12
xeloda & avastin 9/'12

SkiFletch
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Location: Buffalo, NY

Re: To many decisions

Postby SkiFletch » Wed Oct 06, 2010 2:07 pm

Tough decisions for sure, so much of which depends on the pictures. You know me Terry, I'm aggressive and always favor the knife, but you have to make this tough decision yourself. Eric is right, multiplte oppinions might need to be sought here.

Either way, I'll say a special prayer for you that you can come to the proper decision and be at peace with it :)
11/13/09 5cm Stage IV 9/25 lymph nodes w/2cm peritoneal met at 29 YoA
12/15/09 LA right hemi-colectomy
6/16/10 Folfox FINISHED
8/10/10 Prophylactic HIPEC
10/9/10 got Married :D
Still NED and living life to the fullest

"Can any one of you by worrying add a single hour to your life."

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skipperx
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Location: Sao PAulo, Brasil

Re: To many decisions

Postby skipperx » Wed Oct 06, 2010 2:09 pm

Here's to you being REALLY happy next week! I'll be happy for you as well.

One step at a time; first the PET scan results. Do not live now, what you do not know will happen in the future ( does that make sense..lol?)


Cheers, Skip
Age - 51
Recal Cancer Stage 4 - multiple mets in liver
DX 11/05/10 - non operable - KRASS mutant
Chemo - 12 x Folfox + Avastin
05 - 11
Folfox stopped working after round #10
Started FOLFIRI 11/22

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jmarie
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Facebook Username: Jessica Ramos Smith
Location: Jacksonville, FL
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Re: To many decisions

Postby jmarie » Wed Oct 06, 2010 2:33 pm

Well I am still holding out for a clear scan that would make this question mute :wink: I would definately get a second opinion.

Saying a few extra prayers

Ashlee- I love the train analogy. I think my train rides along a cliff :shock:
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

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joeyooser
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Re: To many decisions

Postby joeyooser » Wed Oct 06, 2010 3:46 pm

I take it as great news that he's willing to cut away... So much better than refusing to cut, IMHO! Let's hope it's unnecessary...
Tim
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care

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jmarie
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Re: To many decisions

Postby jmarie » Wed Oct 06, 2010 4:43 pm

joeyooser wrote:I take it as great news that he's willing to cut away... So much better than refusing to cut, IMHO! Let's hope it's unnecessary...


Very true, I wish they would cut away on me! Get rid of all this damn cancer!
DX Stage IV 11/25/08
mets liver lung, kras mutant
Baby 2yrs old! I am 32yrs
Too many chemo txs to count
trying to find a clinical trial
"You can't stop the waves, but you can learn to surf"

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cptmac
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Facebook Username: Dorothy McGrath

Re: To many decisions

Postby cptmac » Wed Oct 06, 2010 4:48 pm

I'm soo sorry to hear this.... And it's the waiting that's the hardest part. I'm praying that it is just the waiting.

I wouldn't tell you not to think about it, because if it were me, that is all I would do.

Just know that you have us wishing you the best in your journey.
cptmac
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

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KarMel
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Location: Indiana

Re: To many decisions

Postby KarMel » Wed Oct 06, 2010 6:00 pm

My onc tells me that , sometimes, cancer patients are sailing in uncharter waters and it's a crap shoot either way ( I know, I stuck some mixed metaphors in that sentence.)
Right now, my local oncologist knows me the best. Regardless of what the Big University Medical center oncologist or BUMC Radiation oncologist , or even a surgeon would say, I trust my local onc the most. It is his opinion I value the most, so that tends to sway me a great deal.

Yes, surgeons like to cut.
"To cut is to cure "
"When in doubt, cut it out"

Praying that either way, God guides you in the right direction and you can put your faith and trust completely in him.

Peace
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: To many decisions

Postby chrissyrice » Wed Oct 06, 2010 6:40 pm

Ashlee:
I like your train analogy too. Reading the posts on this site really help me stay in the present moment.

It helps to see my very thoughts posted in writing and know I have some company on the journey.

Terry, I am praying for you too. Thank you husband for his good advice -- let's just forget this cancer stuff for the coming week.
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months

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Terry
Posts: 5536
Joined: Wed Oct 03, 2007 10:36 pm
Facebook Username: Terry Minor
Location: Silver Cliff, Wisconsin

Re: To many decisions

Postby Terry » Wed Oct 06, 2010 6:53 pm

Thank you all for your words of wisdom :)

First I have to finish getting my first opinions. The idea about the radiation is actually mine that I ran by my onc. and he agreed with, so I have to see the rad. onc. first and see what he says. I have to meet with the card. thoracic surgeon and see if he would do surgery at the end of the month. He has all my records and my last scan and said he would consider it (he's out of Froederdt starbuck). Soooo, a lot is riding on the scan. Damn people taking their time, don't they know we have decisions to make :lol: That's alright I'm fine with it, waiting for the scan that is. The thing I hate the most is having to meet with all these doctors, I'm so sick of seeing doctors. Your right Ashlee this is a train ride and I want to get off please, although I know the chance of that is very slim. No, I take it back, what I hate about this the most is how it effects my family. My husband has really had enough of it.
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!


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