Scared of surgery in need of wisdom...

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Mohrfamily
Posts: 188
Joined: Tue May 22, 2018 4:04 pm

Scared of surgery in need of wisdom...

Postby Mohrfamily » Wed Oct 02, 2019 5:10 pm

So some are familiar with the history so far. My wonderful husband is scared (sh*tless) about the upcoming colon resection and HAI pump placement. He's afraid because his family doesn't have a good track history with surgery, especially open surgery. Most resulting in death a few weeks after being closed up.

He feels slightly better about getting the surgery done as his CEA was another 10 points higher from 2 weeks ago from 109. That number is still low in comparison to where he started so it seems that now is the time to take a new step and surgery is that step. Please just pass along some words that might help.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery

fumaros
Posts: 270
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
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Re: Scared of surgery in need of wisdom...

Postby fumaros » Wed Oct 02, 2019 6:45 pm

I have had open surgery. Good surgeons are very invested in their patients staying alive during and after surgery. Modern science has made so many advancements especially in the area of surgery. They won't operate unless they feel confident on the patients' survival. Focus on eating well, building energy and being as healthy as possible going in. Good luck, you have my positive thoughts and prayers.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
Stage IV, Peri mets 5/2019
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5, 10/17 - 0.9, 3/19 -5.8, 4/19 -10
FOLFOX began 6/24/16 - 11/25/16, FOLFIRI - 5/10/19
10 round FOLFOX, 2 round 5-FU & Leucovorin, 1 round FOLFIRI
MRI & CT 8/16 - NED, CT 12/16 - 10/17 - NED

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SilverWedding
Posts: 71
Joined: Sat May 18, 2019 5:54 am
Facebook Username: Cynthia Harding Marshall

Re: Scared of surgery in need of wisdom...

Postby SilverWedding » Wed Oct 02, 2019 7:04 pm

My DH Is 2 weeks post-op tomorrow, and we just returned from having an ice cream cone together! When I saw him in recovery, I was crying tears of relief and joy to know that the tumor was OUT and that he was talking to me albeit doped up on morphine. It was a shocker at first to know the Ileostomy was now real, but he is doing sooooo welll. Dozens of staples outside and stitches inside by capable hands. I felt a sense of hope. And nurses and doctors were steadily watching the whole time in the hospital. Nothing could’ve been overlooked by those nurses. My best advice is to remind yourselves that the tumor is OUT and to walk as much as possible. It’s worth it. Get the pain medicine 20 minutes before walking and push through it. It will wake up the intestines and get him feeling better faster. YOU BOTH CAN DO THIS. I’ve had meltdowns so bad in the past two weeks, but I am trying to find hope. This surgery is more routine than we realize. It is an art that is saving his life and not anything less. Hang in there. Hugs.
DH, 56, Sigmoid & rectum
Adenocarcinoma 2cm
 G2: Moderately differentiated
T3N2aM0
Stage IIIb
LN 6/22
5/19 Baseline CEA value - 18.9
Lymphovascular invasion (LVI): present
Perineural invasion (PNI): not identified
Surgical margins: proximal -negative; distal - negative 1.5cm; circumferential - negative 1mm)
MSI status: Waiting‬
Lynch status: ?
KRAS/BRAF: ?
Open Restorative Proctectomy, J-Pouch Coloanal Anastomosis, Loop Ileo w/Appendectomy
Neo-adjuvant Xeloda/radiation
Adjuvant Chemo: to begin 11/19

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juliej
Posts: 3049
Joined: Thu Aug 05, 2010 12:59 pm

Re: Scared of surgery in need of wisdom...

Postby juliej » Wed Oct 02, 2019 7:05 pm

I too was scared (sh*tless) about my first surgery! I had never had any kind of surgery before, not even a simple appendectomy. It was scheduled to be 7.5 hours long, a whole day in which I'd be cut open and attended to by several different kinds of surgeons and then have an HAI pump implanted. When I told them how scared I was, my wonderful surgical team told me they'd be doing all the work so I should just relax and have a long nap! :D

One thing that helps is talking to the anesthesiologist before the surgery. He/she will come in before the surgery and introduce themselves and explain what will happen. That's the time to mention you have anxiety about the surgery because of your family history. Don't be afraid to bring up your fears, no matter how odd they sound. Anesthesiologists have been trained to listen closely to patients, so they know what to look out for and how best to take care of them. They also will give you something to calm you before the surgery.

The other thing is to remember why you are having this surgery. Focus on the positive: this is your best chance to beat cancer. Realize that many people don't get this choice. Visualize your loved ones, your favorite places, everything that you love and want to do in the future. Look at this surgery as a required step in the journey to getting those things. The sooner the tumors are gone, the sooner you can move on with your life.

Trust your doctors. Have confidence that they are there to help and protect you. All of us here will be sending our strongest thoughts and prayers to you!

Hugs to you both!
Juliej
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 9/23/2019, CEA<1

AmyG
Posts: 282
Joined: Tue Dec 25, 2018 8:08 pm

Re: Scared of surgery in need of wisdom...

Postby AmyG » Wed Oct 02, 2019 7:35 pm

I was terrified of my liver resection. I couldn't shake the thought that I wasn't going to wake up. And I don't have a poor history!!

I totally can get where he's coming from, so tell him an internet stranger understands.

I had mine done the last week of August, been NED since and I have the CEA and scans to prove it! :lol: The waiting and anticipation was crap. But once it was over I almost forgot how afraid I was in the first place.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

Lee
Posts: 5971
Joined: Sun Apr 16, 2006 4:09 pm

Re: Scared of surgery in need of wisdom...

Postby Lee » Wed Oct 02, 2019 7:55 pm

Agree with Juliej, talk to the anesthesiologist. I have this fear that I will wake up during surgery. It's never happened, butt saw an episode on a "Outer Limits" or "Twilight Zone" when I was a kid, where someone woke up during surgery. Always bothered me since. That and the episode of the earwick. Dating myself here. Anyway just expressing your concerns can help a lot.

Make sure your husband walks, walks, walks the hospital halls. That will help with the recovery.

One thing that happened to me, I was about 2-3 days out from surgery when I spiked a fever. I felt it, I was at least 101+. I remember the nurse telling me we believe your bowels are waking up, butt clearly we have to take caution just in case it's something else. He also knew i was upset, he was willing to call family. NO, let my poor family sleep. He finally said, unload on me, I promise not to take it personal. I let it out, the F-bomb many times, and many other cuss words and just the "sheer frustration"!!!! I felt so much better when I got that out. I also think I realized at some point in this rant, I was going to make it. I was not cussing at him so much as I was cussing at my life at that moment. If your husband needs to do this, let him vent! Just sit there and listen, a response is not necessary. Anyway a few hours later, fever went away, and they could hear gas passing in my bowels.

I can't remember exactly what the dream was, but about 2 weeks prior to my surgery, I woke with a cold sweat about something going bad with my surgery. In hind sight, this was probably my body preparing for my upcoming surgery, taking on my worst fear. Probably dreamed about waking up during surgery :D .

He can do this,

Lee

Make sure he has good walking slippers and a wrap around robe. That wrap around robe is easy to get in and our of when hooked up to IV's
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Gravelyguy
Posts: 251
Joined: Thu Jul 05, 2018 6:03 pm

Re: Scared of surgery in need of wisdom...

Postby Gravelyguy » Wed Oct 02, 2019 10:34 pm

I had never spent a night in a hospital before my open combo liver and rectal surgery. I really can’t say I was scared. It felt more like it was a dream and sometime I would wake up. It still feels like that sometimes.

Anyway at Mayo they have this rapid recovery protocol which apparently I was a part of. I was up walking that night and 2 days later was home. I still can’t believe it but things really have changed so much as far as surgery goes in the last decade.

Plus you get some real good pre op meds! We are praying for your husband. He’s got this!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

NHMike
Posts: 2322
Joined: Fri Jul 21, 2017 3:43 am

Re: Scared of surgery in need of wisdom...

Postby NHMike » Wed Oct 02, 2019 11:08 pm

My cancer surgery was my first (outside of getting wisdom teeth removed if you consider that surgery). It was open. I redid my will, gave my family all of my account access and passwords, and went in. I couldn't believe how wiped out I felt after the surgery and the number of things attached to my body for the first couple of days but I did do some work the next morning and walked about 70 steps the second day. I recall walking nine miles and working out in the gym about ten days later.

Surgeon's do not like to lose patients. My mother tried to get bypass surgery but she couldn't get a surgeon to operate on her because the risks were too great (mid-90s). So her condition is controlled with medication. In general, if you're younger, not overweight, fit, and in general good health, then your risks are lower. But yes, I was scared. The resident asked me if I was concerned and I said that I've heard that some people die from this surgery. But I didn't know anyone that did. He said that yes, some people die, but he didn't know any. And that they'd take good care of me. The surgeon popped in for about two minutes and said the same thing. You still worry though. This stuff really is routine for them.

A week before surgery, they had me in for preop testing and education. So they did a bunch of tests - I guess to determine if I was in good shape for surgery. I'm pretty sure that they have conditions where they will cancel or postpone your surgery if they feel that you aren't up to it.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Mohrfamily
Posts: 188
Joined: Tue May 22, 2018 4:04 pm

Re: Scared of surgery in need of wisdom...

Postby Mohrfamily » Thu Oct 03, 2019 10:23 am

I just want to thank all of you I can't wait to share this with him.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery

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ginabeewell
Posts: 359
Joined: Wed Oct 24, 2018 10:30 am

Re: Scared of surgery in need of wisdom...

Postby ginabeewell » Thu Oct 03, 2019 10:59 am

Just before my HAI pump / colon resection surgery I was scared out of my mind. My daughter had been super emotional saying goodbye the night prior and I was like, “is that a sign?” My husband gently said, “yes, a sign that she is seven.”

Right before they took me in I said, “I have a bad feeling about this, do you have a bad feeling?”

“No,” he said smiling. “Not at all.”

I think I relaxed a little then, and that’s the last thing I remember.

I think it’s totally natural to be nervous; and that’s not a sign of anything other than he’s a human going into surgery!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

radnyc
Posts: 408
Joined: Tue Apr 06, 2010 6:32 pm

Re: Scared of surgery in need of wisdom...

Postby radnyc » Thu Oct 03, 2019 1:55 pm

You’ll be fine. Makes no sense to worry, as you’ll have no control of the situation. Just keep thinking about the next day.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

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DBF
Posts: 313
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Location: New York

Re: Scared of surgery in need of wisdom...

Postby DBF » Fri Oct 04, 2019 11:15 am

I can relate to where he is coming from. I was terrified before my first surgery. I even posted here about being so scared of the general anesthesia. I did a combo surgery: first a c-section to deliver my baby (for which I was awake), then a combo colon resection and partial hysterectomy. A certain major cancer center was cautioning me against doing all that at once, and it was the first time both surgeons were involved in this kind of combo. I’m also a person who likes to have control over things. At some point, for that first surgery, I had to just let go of the fear and the lack of control. I had to trust that the doctors and the hospital were capable and that I was going to be okay. It wasn’t easy.

One thing that helped me (as others have said) was to think about how lucky I was to be a candidate for surgery.
Then, I would try to visualize a time in the future- that in a year, the surgery would seem like a distant memory.

I have to say- I was markedly less nervous before subsequent surgeries.

I hope your husband will find some calm and comfort before his surgery- and that it will lead to NED.

Best,
Donna
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Spread to liver
9/13 Liver resection
FOLFOX
CEA UP
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
2019: NED :D
Mom to 3 boys: 21, 9 & 6

DarknessEmbraced
Posts: 3369
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Scared of surgery in need of wisdom...

Postby DarknessEmbraced » Sat Oct 05, 2019 9:36 am

I hope your husband's surgery goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19

MetastaticEquilibria
Posts: 59
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Scared of surgery in need of wisdom...

Postby MetastaticEquilibria » Sun Oct 06, 2019 6:14 am

DBF wrote:One thing that helped me (as others have said) was to think about how lucky I was to be a candidate for surgery.


Yes, I would kill to be eligible for surgery.

Well, maybe not actually kill, but I would certainly be willing to write a sternly worded letter to the editor. Don’t think I wouldn’t!
M55 Stage 4 Japan
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad 60 Gy
1-7/18 FOLFOX+Vectibix
8-9/18 Liver protons 73 GyE
10-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver protons 66 GyE
4/19 3 Lung mets
4-6/19 Vectibix
7-9/19 FOLFIRI+Cyramza
9/19 Biliary stent
10/19-now Lonsurf+Avastin
CEA 1.4-223 last 2: 130 74
CA19-9 2.8-232 last 2: 232 96
RAS wild MSS MET+ TP53-
UGT1A1*28 homo

Mohrfamily
Posts: 188
Joined: Tue May 22, 2018 4:04 pm

Re: Scared of surgery in need of wisdom...

Postby Mohrfamily » Wed Oct 09, 2019 4:18 am

My husband is now letting me know a little bit more each day about what's really bothering him yesterday he mention he was worried about the surgery and when he comes out of it if hes gonna still be the same person. At least now hes talking about coming out of it. Ultimately he is our kids jungle gym very active and hes worried that this pump m is gonna limit a lot of what he does for the kids.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed no surprises in surgery


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