Seeking Honest Feedback

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chixter
Posts: 121
Joined: Wed Jun 25, 2014 5:31 pm

Seeking Honest Feedback

Postby chixter » Tue Aug 19, 2014 5:32 pm

Dear Friends. I've been here long enough to feel confident with opinions from many of you. I know who are those that genuinely will consider putting yourself in my place, as you are all veterans and know the drill. So here it goes:

I've mentioned that there is no CRC history in my family, or Wifeys family. So I was beyond shocked when my 25 yr old daughter presented with advanced cancer. As I have posted it is very atypical; on the outside of her colon at the cecum and we are awaiting Tumor genetic study results due this week.

In the meantime {meanwhile back at the ranch....} my primary care doc is bugging the crap out of me to get the colonoscopy he set up for me with a local GI. I am 55 never had a scope, and he 'was going to get one for me this year anyway' but when he found out about Katie he seemed to push the panic button, and STAT scheduled me with this GI guy back in late May. I put it on hold as we were in the initial phases of Katies plan. Now, I don't have any issues with the scope itself. What worries me the most is if I have something there, what to do about it? I know I sound crazy and so many of you are pulling out the stops but please, please look at it from my perspective. If something is there I'm of the frame of mind to just let sleeping dogs lie and keep going as long as I can. I know it would eventually mean my life but 1. How would I be able to now have Carole have to care for 2 of us? 2. I am the only one working now. Katie cant work, Carole had to leave her job to take care of Katie....there is no way even the max SDI payments would cover all of our expenses. This is the thing that keeps me up at night. Is ignorance bliss?

I don't have symptoms like stool blood, or things of that nature. But I have learned here and in our own experience that many times there are no symptoms. I have had diverticulitis in the past usually kept under control with diet and exercise. Lately I have had some bloating/cramping (minor) but this may be more due to nervousness and stress with Katies situation. The reason why I bring it up here is that my docs office called me today to verify my early September bi-annual check up. I know these folks well and she asked my if I got the scope as they did not get results. I told her I put it off for a bit. 15 minutes later my doc calls and gives me this big speech how important it is that I get it blah blah....he sounded a little mad.

The devil you dont know is the same as the devil you do know. But which is easier to deal with? All you caregivers out there, I need you to chime in too.

PS...Worse case scenario if something big was wrong and I end up checking out within a year or so because of treatment refusal...Carole and (I pray) Katie will have to slog on without me, but sans financial pressures due to good life insurance. So they wouldn't be in the same situation as if I just couldn't work anymore.
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: Seeking Honest Feedback

Postby KWT » Tue Aug 19, 2014 5:43 pm

You need a colonoscopy, that's the simple answer. And the only one you should receive. I don't think anyone here would suggest not. I hope I'm not wrong.

shade
Posts: 157
Joined: Thu Feb 20, 2014 7:08 pm

Re: Seeking Honest Feedback

Postby shade » Tue Aug 19, 2014 5:48 pm

Concur with Kenny...get one. They aren't too bad. You'll be out for a day.
Stage IV rectal
10/12 Cancerous polyp removed
1/14 Local recurrence
3/14 Chemorad
6/14 LAR and resected liver met, temp ilio
12/14 finished FOLFOX / Avastin
1/15 ilio reversed, LARS
57 y/o dad

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: Seeking Honest Feedback

Postby Stanfordmom » Tue Aug 19, 2014 5:58 pm

Agree with Kenny and Shade. You and your wife should get scoped soon!
Look at it this way, even if there is something, you might be lucky to find it at earlier stages. That way, it will save your life and allow you to be a better caretaker for your girl.

Sending you positive energy and pray for you having a clean scan!
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

User avatar
juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Seeking Honest Feedback

Postby juliej » Tue Aug 19, 2014 5:58 pm

I totally understand where you're coming from. You're afraid if the colonoscopy shows something it will be the straw that broke the camel's back. But I look at like I would if you were my dad. I would feel incredibly guilty if you avoided the colonoscopy because of me and it turned out you had a curable stage of colon cancer that wasn't treated until it metastasized.

Plus, there's no guarantee if you have undiagnosed colon cancer, it's going to lie dormant and just leave you alone. It could get bad, very bad, very suddenly, and then what would you do? You couldn't stay working then so you'd be in the situation that you fear. The big hope is that the colonoscopy will find nothing. The second hope is that if it finds something, it's a lower stage and doesn't take you out of commission. I worked full-time with a stage IV diagnosis and arranged my chemo treatments around my work schedule. Don't let your fear of the results keep you from getting scoped. Believe me, speaking as a daughter, it's what I want my dad to do in the same situation.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

orcasres
Posts: 836
Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: Seeking Honest Feedback

Postby orcasres » Tue Aug 19, 2014 6:00 pm

Please get a colonoscopy. I am a stage IIA and am NED so far. No one can say how it would have turned out if I had waited till my next regular scope (I was not due for three years). My husband has a number of chronic problems (UC for 40 years, High BP, Type II diabetes) and as far as I concerned, the best thing I could do for him was catch it early and even do FOLFOX which is controversial with stage IIA. Good luck with your decision and I wish only the best for your daughter and wife.

Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

JAZZToo
Posts: 509
Joined: Sun Oct 01, 2006 10:46 am
Location: New York City

Re: Seeking Honest Feedback

Postby JAZZToo » Tue Aug 19, 2014 6:05 pm

Please get that colonoscopy ASAP! If your daughter's colon cancer turns out to be genetic, it could well be what's called a "de novo" mutation, meaning that she would be the first one affected and you would not have a genetic colon cancer. Don't waste worrying until you have something about yourself to worry about. Your test may turn out to be perfectly normal, and even if it isn't you would be doing your family a terrible disservice to sacrifice yourself and leave them with a lifetime of guilt. My brother and i both have Lynch Syndrome. I am currently fighting my third cancer, yet my 65 year old brother has never had any cancers.. also, there are many on this board who have been able to continue working while receiving treatment. You are irreplaceable. Treat yourself well and you will be able to handle situations as they arise and cope with them
Leslie
2014 pancreatic cancer
2003 colon cancer
1995 endometrial cancer

stars9979
Posts: 135
Joined: Fri May 02, 2014 11:06 pm

Re: Seeking Honest Feedback

Postby stars9979 » Tue Aug 19, 2014 6:12 pm

chixter wrote:Dear Friends. I've been here long enough to feel confident with opinions from many of you. I know who are those that genuinely will consider putting yourself in my place, as you are all veterans and know the drill. So here it goes:

I've mentioned that there is no CRC history in my family, or Wifeys family. So I was beyond shocked when my 25 yr old daughter presented with advanced cancer. As I have posted it is very atypical; on the outside of her colon at the cecum and we are awaiting Tumor genetic study results due this week.

In the meantime {meanwhile back at the ranch....} my primary care doc is bugging the crap out of me to get the colonoscopy he set up for me with a local GI. I am 55 never had a scope, and he 'was going to get one for me this year anyway' but when he found out about Katie he seemed to push the panic button, and STAT scheduled me with this GI guy back in late May. I put it on hold as we were in the initial phases of Katies plan. Now, I don't have any issues with the scope itself. What worries me the most is if I have something there, what to do about it? I know I sound crazy and so many of you are pulling out the stops but please, please look at it from my perspective. If something is there I'm of the frame of mind to just let sleeping dogs lie and keep going as long as I can. I know it would eventually mean my life but 1. How would I be able to now have Carole have to care for 2 of us? 2. I am the only one working now. Katie cant work, Carole had to leave her job to take care of Katie....there is no way even the max SDI payments would cover all of our expenses. This is the thing that keeps me up at night. Is ignorance bliss?

I don't have symptoms like stool blood, or things of that nature. But I have learned here and in our own experience that many times there are no symptoms. I have had diverticulitis in the past usually kept under control with diet and exercise. Lately I have had some bloating/cramping (minor) but this may be more due to nervousness and stress with Katies situation. The reason why I bring it up here is that my docs office called me today to verify my early September bi-annual check up. I know these folks well and she asked my if I got the scope as they did not get results. I told her I put it off for a bit. 15 minutes later my doc calls and gives me this big speech how important it is that I get it blah blah....he sounded a little mad.

The devil you dont know is the same as the devil you do know. But which is easier to deal with? All you caregivers out there, I need you to chime in too.

PS...Worse case scenario if something big was wrong and I end up checking out within a year or so because of treatment refusal...Carole and (I pray) Katie will have to slog on without me, but sans financial pressures due to good life insurance. So they wouldn't be in the same situation as if I just couldn't work anymore.



Get checked. Period.

My mom was so concerned about me and that was my concern as well, all of your concerns..... and the bottom line is, is you will figure out a way, IF it was worst case scenario. Everyone always does find ways to manage and get by.

I have my coloscopy and endoscopy at 25 very very recently, no cancer, but they found H Pylori in my stomach which causes bleeding ulcers and stomach cancer.

Its highly important, and you know Katie would want you to get checked as well. I wish you the best, and please please go get checked, its really no sweat, not bad at all.
Caregiver to 54 y/o mom
Dx April 4 2014
Stage IV CC w mets to liver
Illeostomy (temp) 05/05/2014
6 rounds FOLFOX 05/14-08/14
Primary tumor/colon resection/I'll take down 10/27/14

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Seeking Honest Feedback

Postby justin case » Tue Aug 19, 2014 6:15 pm

I put off the colonoscopy at 53, 54, and got one at 55. I've told this story before, so for those who have heard it, tell a friend. I bought a new house in Feb. 2011, and did what I needed to do and said hi to a neighbor once or twice. Well my neighbor next door, a Deacon in the church, ( I don't go to church) saw me in the driveway, and proceeded to tell me how He, and his wife, went for colonoscopy's. It was June, and I said to myself, people you don't even know are talking to you about a colonoscopy. My doctor had been recommending it, so I said I think I'm being talked to by someone much more savvy than I. I scheduled the colonoscopy, had cancer, did my chemo, radiation, surgery, and chemo again, paid my bills, had my birthdays, and intend to have another one again. I had 4 polyps, I would have ignored, if this weird guy, I live next to, hadn't given me a message from his Master to Me. I'm doing alright, and as Big Mike would say, "I'm still not out of the fight"
Get your colonoscopy, and know where you stand, because you really don't want to fight a monster blind.
Warm regards,
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Cb75
Posts: 1216
Joined: Sun Apr 22, 2012 3:52 pm
Location: Ontario, Canada

Re: Seeking Honest Feedback

Postby Cb75 » Tue Aug 19, 2014 6:16 pm

You need to get checked. The human spirit is resilient and you will find a way to cope either way. Anything is possible with this disease. I went in for a scope merely due to a recent family history of crc when NO ONE within my immediate and extended family has ever been diagnosed with ANY type of cancer. Within five years, three immediate family members (including myself) have gotten this horrid disease. I had NO symptoms and have stage IV. The others had symptoms and were stage II and stage III a. Both are cancer free. We have come together as a family and supported each other through this. Other than cancer, we have a great life. Please get checked, have the rest of your family checked....

cb
39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

lauragb
Posts: 899
Joined: Sun Aug 28, 2011 5:25 pm

Re: Seeking Honest Feedback

Postby lauragb » Tue Aug 19, 2014 6:21 pm

I agree with everyone else for the same reasons. Best case, it will be clear and you won't even have it in the back of your mind, then.

Keep us posted!
RC 3B 7/2011 @ 53
Chemoradiation 5 weeks 8/11
LAR-Hysterect-temp ileo
pCR, 0/23 nodes
Folfox 1/12, Xeloda 2/12 to 5/12
Reversal 5/12
SBO,lysis of adhesions 12/12
NED 11/12, 11/13, 6/16

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: Seeking Honest Feedback

Postby JJ2212 » Tue Aug 19, 2014 6:35 pm

I agree with the obvious answer and general consensus, i.e just get it done. I don't believe that in this case 'ignorance is bliss'. You already seem to have anxiety about the situation and you say it's keeping you up at night, so why not find out exactly what you are facing? Best case scenario is you have nothing and are that much stronger to help Katie with her struggle. Worst case scenario, well, let's not go there until we have to. It makes no sense to prepare for the worst at this point.

My 3 sisters and 78 year old father had colonoscopies about 6 months after my diagnosis. My Dad was stressed about it and almost put it off because the appointment was scheduled the same week he was leaving to spend winter in the south. He was stressed for months prior to the test, and after the 10-minute procedure, was stress free. Speaking as the one with cancer, I was also very relieved after the colonoscopies were done. I'm sure Katie would be too.

Take care. Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

jdepp
Posts: 488
Joined: Sun Sep 28, 2008 7:53 pm

Re: Seeking Honest Feedback

Postby jdepp » Tue Aug 19, 2014 7:04 pm

My honest feedback: get the scope immediately.

The chance that a scope will put you in a situation where Carole has to "take care of you" is tiny. The chance that you could catch something early, easy, & fixable is much greater. Get the scope.
Colon dx 08 @ 41 Poorly diff. 12+ liver mets, 19/28 LN
Colon rsx /14 x Folfox-Erbitux 08-09
PVE / Liver rsx 09
Lung & LN mets 10
Folfiri, Xeloda, Avastin 10-13
Xelox, Erbitux, UFUR, TS-1, Oxi, Lonsurf 14-16
Stivarga & TIL trial 16
Brain lesion, RO688 trial 18

User avatar
Patience
Posts: 834
Joined: Fri Dec 09, 2011 10:26 am

Re: Seeking Honest Feedback

Postby Patience » Tue Aug 19, 2014 7:36 pm

chixter wrote: If something is there I'm of the frame of mind to just let sleeping dogs lie and keep going as long as I can. I know it would eventually mean my life but 1. How would I be able to now have Carole have to care for 2 of us? 2. I am the only one working now. Katie cant work, Carole had to leave her job to take care of Katie....there is no way even the max SDI payments would cover all of our expenses. This is the thing that keeps me up at night. Is ignorance bliss?

In this case, ignorance is not bliss. I can tell you that my experience as a caretaker is that it was much easier to take care of a stage I cc patient than it was to take care of a stage IV cc patient. If your concern is about the caretaker, then the sooner a problem is caught, the better.

Best of luck. Get the colonoscopy, and hopefully all will be fine, and you can take one of your family worries off your plate.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."

User avatar
Rob in PA
Posts: 2005
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Seeking Honest Feedback

Postby Rob in PA » Tue Aug 19, 2014 7:42 pm

Get r' done! Best scenario...it comes back clean and you've got one less BIG thing to worry about.

Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED


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