I'm getting worried

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Jannine
Posts: 189
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: I'm getting worried

Postby Jannine » Thu Oct 31, 2019 7:28 pm

Just want to chime in and say that I would not be happy about all those symptoms you're having either. Here's hoping you don't have cancer, and that you do get to the bottom of whatever's going on soon. Keep at your docs and get them to keep looking for an answer. It doesn't sound to me like a situation you should just shrug and accept. If you don't feel your doc is looking into your symptoms with the attention you need, find another doc. It's something we have to do in the cancer world, too.

I hope you get answers soon.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

boxhill
Posts: 585
Joined: Fri Apr 06, 2018 11:40 am

Re: I'm getting worried

Postby boxhill » Thu Oct 31, 2019 8:18 pm

I'll chime in and say that unless you are a real hypochondriac the combination of all of those symptoms worry me also.

I hope you don't have colon cancer, but it sounds like *something* is going on. Have you been evaluated for lupus, for example? (Not a doctor, nor do I play one on the internet)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

DarknessEmbraced
Posts: 3486
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I'm getting worried

Postby DarknessEmbraced » Wed Nov 06, 2019 11:59 am

I'm sorry you're going through this and I hope you get results soon!*hugs* I know how hard it is to wait for results. I have to wait 7 to 10 days for results.
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
Clear 5 year scans 11/21/19- Considered cured! :)

Usmccolon
Posts: 34
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Thu Nov 21, 2019 1:23 am

Just wanted to update a bit.
So pathology came back good. Both polyps hyperplastic and one was inflammatory and was in a diverticular pouch that they removed as well. That's the good news.

Health wise the bad news is I was hospitalized for a couple days recently for diverticulitis which is 5th time I think I've had it since January 2017. Pretty sure 3rd time this year and confirmed to have had it this August and this November. The CT report from this November said most resembles diverticulitis but to follow up because it also looks similar to malignancy and should be ruled out. Which makes sense when when I went back to ER next morning after that CT scan for high fever and body feeling like I had flu and they assigned surgeon to me and kept asking if I have had colonoscopy before and when I said yes they wanted to know who did it. I'm hoping/assuming if it was malignancy they would of seen it during colonoscopy a few weeks prior to this CT.

So the ER doctor, surgeon who was assigned to me in hospital and my gastro are all telling me it's time to consider surgery to cut out sigmoid colon. I have a follow up with him Friday.

So being worried about cancer and the enlarged messentaric lymph nodes on right side of abdomen and diverticulitis on left side I decided to look anatomy pictures to try and see if I could figure out what could cause those enlarged lymph nodes (I do technical work and lots of troubleshooting so I like to figure things out). I saw gallbladder was in that area and recent CTs have shown possible gallstones. Then I remembered that back in 2015 I had ultrasound for elevated Liver enzymes and one of the things they found were some gallbladder polyps and largest was 0.9cm by 0.9cm. they usually recommend taking out gallbladder once they get to 1cm because of increased risk of it being cancerous. Anyways I messaged gastro if the two could be linked and she said she didn't think so but that I should have follow up ultrasound of gallbladder. I had that yesterday and tech wouldn't tell me anything so I messaged my gastro today who said it may have gotten bigger and that there are even more polyps now and that radiologist suggested consult with surgeon because of it.

So just in last couple weeks I'm being told I should have part of colon removed and gallbladder removed.

Gallbladder cancer is very rare but usually has poor prognosis. Gallbladder polyps in general are pretty rare and 5% are cancerous. That's basically 1 in 20.

What is typical recovery time from sigmoidectomy?

Jannine
Posts: 189
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: I'm getting worried

Postby Jannine » Thu Nov 21, 2019 7:41 am

I can't speak to gallbladder removal; I had 10 inches of colon including the sigmoid removed a year and a half ago in laparoscopic surgery. Perhaps my experience will be helpful, though. I was up and walking around about 24 hours after surgery, which was much later than we all would have liked. There wasn't a bed for me in a room that had both a chair and an attached bathroom, and they didn't want to take the catheter out and get me walking under those conditions. (My surgery happened after I went to the ER, rather than being pre-scheduled.) I had a bowel movement once I got moving (they won't let you go home until you've had a bowel movement) and then went home -- I think that was less than 48 hours after surgery. I only needed painkillers the first 12-or-so hours after surgery, and even then the nurses were impressed with how few doses I'd used. I might have taken a few over the counter painkillers once I got home, but I don't remember doing so. I was walking plenty but not picking up heavy things a week later. I think they tell you not to pick up anything heavier than a gallon of milk for the first month or so. I went back to work as soon as my staples came out; I probably could have gone back sooner though, since I work a desk job and don't lift anything heavy.

Open surgery may be different than laparoscopic; I"m sure there are people here who can answer that question. I have no idea if you might need open surgery.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

Usmccolon
Posts: 34
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Thu Nov 21, 2019 9:07 am

Jannine wrote:I can't speak to gallbladder removal; I had 10 inches of colon including the sigmoid removed a year and a half ago in laparoscopic surgery. Perhaps my experience will be helpful, though. I was up and walking around about 24 hours after surgery, which was much later than we all would have liked. There wasn't a bed for me in a room that had both a chair and an attached bathroom, and they didn't want to take the catheter out and get me walking under those conditions. (My surgery happened after I went to the ER, rather than being pre-scheduled.) I had a bowel movement once I got moving (they won't let you go home until you've had a bowel movement) and then went home -- I think that was less than 48 hours after surgery. I only needed painkillers the first 12-or-so hours after surgery, and even then the nurses were impressed with how few doses I'd used. I might have taken a few over the counter painkillers once I got home, but I don't remember doing so. I was walking plenty but not picking up heavy things a week later. I think they tell you not to pick up anything heavier than a gallon of milk for the first month or so. I went back to work as soon as my staples came out; I probably could have gone back sooner though, since I work a desk job and don't lift anything heavy.

Open surgery may be different than laparoscopic; I"m sure there are people here who can answer that question. I have no idea if you might need open surgery.


Thanks so much, that recovery time doesn't sound to bad. Surgeon was taking minimally invasive as well while I was in ER. My job involves standing all day and bending at the waist but no heavy lifting, most lifting is under 5lbs.

Gravelyguy
Posts: 317
Joined: Thu Jul 05, 2018 6:03 pm

Re: I'm getting worried

Postby Gravelyguy » Thu Nov 21, 2019 10:02 am

Glad they are getting to the bottom of everything. I had my gallbladder removed about a year after my combo liver/rectal surgery because of gallstones. Both surgeries were open so I have gone through it but my case was too different to really give you much help other than if they can do them laparoscopically, you should recover pretty quickly!

Hope all goes well and keep us in the loop.

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
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

Usmccolon
Posts: 34
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Thu Nov 21, 2019 12:13 pm

VA just called me to make sure I got my ultrasound results, they are separate from Gastroenterologist. They agree with the surgery as well. They gave me more specifics saying there are 5 polyps with largest 1.2cm . So I talked to them about increased cancer risk and they said I knew my stuff. Wish I didn't need to know my stuff. So basically at this point the studies say based on size and the study 33% to 88% chance of malignancy.
Thanks for sharing surgery recovery times even if they aren't the same as mine. It's definitely showing pattern of recovering faster then I thought.

AmyG
Posts: 348
Joined: Tue Dec 25, 2018 8:08 pm

Re: I'm getting worried

Postby AmyG » Thu Nov 21, 2019 1:47 pm

My primary tumor was in my sigmoid. Surgery was laparoscopic and I was up a few hours after surgery. Recovery was quite easy, very little pain.

I hope your gallbladder is just misbehaving and there's no malignancies in there!
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
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Usmccolon
Posts: 34
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Fri Nov 22, 2019 9:51 am

Talked to colorectal surgeon today. He said he will use da Vinci surgery and that gallbladder could be removed at same time and put in a referral for another surgeon to handle that using da Vinci as well. Said probably 2 or 3 days in hospital and most likely around 3 weeks out of work.

Jannine
Posts: 189
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: I'm getting worried

Postby Jannine » Fri Nov 22, 2019 6:13 pm

Sounds about right. I know they predicted I might be in the hospital another 3 or 4 days after surgery, but they sent me home a lot sooner than that.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

Usmccolon
Posts: 34
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Sat Nov 23, 2019 11:42 pm

It could be longer then 2 to 3 days if I have ilieus? Basically if my bowels are slow to start.

I found out my VA primary had sent request for consult with 2nd surgeon so it looks like I'm on the right path and to let him know if I don't here from the community Care team in a week who make final decision.

I'll be honest and maybe this will help someone else in future who reads this but not only am I impressed that I got a message from primary on weekend at 10:15pm but it also kinda plays into my fear of cancer because a government employee and even a medical professional in general took the time to reply at 1015 pm on a weekend to a message I sent about a referral for removing my gallbladder for which studies say it should be removed because of the chance of cancer.

In other words he obviously was thinking of me and felt it necessary to reply after hours. If it wasn't potentially serious in his mind I can't see why he would reply on a weekend at night.

Seriously thanks for letting me vent and talk on here even though I may not have cancer and if I do may not be colon cancer.

I'm trying my best to have the mentality of not worrying because I don't know anything yet and if it is cancer then I'll have plenty of time to worry then hopefully.

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: I'm getting worried

Postby Pyro » Sun Nov 24, 2019 8:42 pm

Usmccolon wrote:It could be longer then 2 to 3 days if I have ilieus? Basically if my bowels are slow to start.

I found out my VA primary had sent request for consult with 2nd surgeon so it looks like I'm on the right path and to let him know if I don't here from the community Care team in a week who make final decision.

I'll be honest and maybe this will help someone else in future who reads this but not only am I impressed that I got a message from primary on weekend at 10:15pm but it also kinda plays into my fear of cancer because a government employee and even a medical professional in general took the time to reply at 1015 pm on a weekend to a message I sent about a referral for removing my gallbladder for which studies say it should be removed because of the chance of cancer.

In other words he obviously was thinking of me and felt it necessary to reply after hours. If it wasn't potentially serious in his mind I can't see why he would reply on a weekend at night.

Seriously thanks for letting me vent and talk on here even though I may not have cancer and if I do may not be colon cancer.

I'm trying my best to have the mentality of not worrying because I don't know anything yet and if it is cancer then I'll have plenty of time to worry then hopefully.


Veterans Administration medical is heads and tails above the paper pusher Veterans Administration. There’s a difference, a very large one.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!

Usmccolon
Posts: 34
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Sun Nov 24, 2019 11:09 pm

Pyro wrote:
Usmccolon wrote:It could be longer then 2 to 3 days if I have ilieus? Basically if my bowels are slow to start.

I found out my VA primary had sent request for consult with 2nd surgeon so it looks like I'm on the right path and to let him know if I don't here from the community Care team in a week who make final decision.

I'll be honest and maybe this will help someone else in future who reads this but not only am I impressed that I got a message from primary on weekend at 10:15pm but it also kinda plays into my fear of cancer because a government employee and even a medical professional in general took the time to reply at 1015 pm on a weekend to a message I sent about a referral for removing my gallbladder for which studies say it should be removed because of the chance of cancer.

In other words he obviously was thinking of me and felt it necessary to reply after hours. If it wasn't potentially serious in his mind I can't see why he would reply on a weekend at night.

Seriously thanks for letting me vent and talk on here even though I may not have cancer and if I do may not be colon cancer.

I'm trying my best to have the mentality of not worrying because I don't know anything yet and if it is cancer then I'll have plenty of time to worry then hopefully.


Veterans Administration medical is heads and tails above the paper pusher Veterans Administration. There’s a difference, a very large one.

Were you pilot in military? Recently read something about pilots getting cancer at high rate from radiation in cockpit and despite that risk most would still do it but would like that risk disclosed better.

Pyro
Posts: 305
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: I'm getting worried

Postby Pyro » Tue Nov 26, 2019 5:04 am

I was a pilot, and there’s is something fishy going on in regards to aircrew and cancer. People inside and outside the VA are aware of it, I’d probably still do it.
Aug 2015- Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail
Jun 2019 - FOLFURI
Aug 2019 - No more, quality time!


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