I'm getting worried

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Lee
Posts: 6171
Joined: Sun Apr 16, 2006 4:09 pm

Re: I'm getting worried

Postby Lee » Fri Jun 26, 2020 10:12 am

Yes, time to see the doctor. Good luck, Hope they can get the pain resolved, that is no fun.

Lee
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 - 16 years and counting!

Cured
Posts: 569
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: I'm getting worried

Postby Cured » Fri Jun 26, 2020 8:28 pm

UsmcColon, To focus on good prospect: surgical removal of diverticulitis can be a PERMANENT CURE. It has been for my wife. She finds it interesting that our colorectal-surgeon friend did resections of both do us. Too often the GI doctors never tell you of surgical options. And they seem happy to have you as a patient for life - the drug companies prefer such.

We pray that the other symptoms go away and that you fully regain your strength.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3,2.3.4.8
12 rds Folfiri
Avastin evy 2 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

Usmccolon
Posts: 39
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Fri Jun 26, 2020 9:26 pm

I went to appointment today and saw a PA. She said she talked about my case with my surgeon. She didn't feel any bulges from the laprascopic site and I haven't either.

I use the VA for healthcare and let me just say this community Care practice I've been seeing is amazing. They actually listen to me and care. The PA mentioned that the surgeon told her I was a "go getter" because when I first met him in hospital before surgery I was admitted for possible sepsis. He still remembered that the day I was released I asked for note to go back to work and he told her that. So that meant a lot to me and think I'm going to ask for a new primary at VA because I am literally ignored.

Anyways Monday I am going to get CT to rule out hernia. Another possibility is maybe an adhesion. I said I wondered if it was just a neurological issue too and again it was so reassuring to hear her say that we'll get there after we rule out other things first.

Going to try heating pad tonight and take it easy this weekend because it's been getting worse last couple days.

boxhill
Posts: 647
Joined: Fri Apr 06, 2018 11:40 am

Re: I'm getting worried

Postby boxhill » Fri Jun 26, 2020 10:12 pm

I hope they find a fixable cause!

I had pneumonia when I was about 6 yrs old, and would have adhesions occasionally thereafter for several years. It really felt like something was ripping apart inside my chest. Which I guess it was! Very painful, but eventually went away with no intervention.

I'm glad you have an appointment in the near future. Best of luck.
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 and 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
Stop Key
8/20 MRI NED

Cured
Posts: 569
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: I'm getting worried

Postby Cured » Sat Jun 27, 2020 6:56 pm

Boxhill, You’ve been through the wringer. Good to see you came through it.

UsmcColon, I wish the government would sell-off VA Healthcare System. We citizens of the US care deeply about Veterans; we tell such to our Congressmen, who keep increasing funding. The VA can accomplish its mission without the doctors being employees of the government these days. Such wasn’t so post Civil War.

We pray that you are feeling better and that the medical community will work for your cure and comfort.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 CyclDone 1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
After 8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3,2.3.4.8
12 rds Folfiri
Avastin evy 2 wks
Seizure Anti-seiz meds work-no driving for 6 mo
4-20PET: Lung spots=Chemo

Usmccolon
Posts: 39
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Sun Jun 28, 2020 2:02 pm

Thanks everyone.

I've been taking it easy this weekend and little things hurt so I'm pretty sure it is an adhesion. I had the ripping and tearing pains month or so ago intermittently. The more I pay attention it seems like yes being really active makes it worse but even if I'm taking it easy simple position changes can cause pain. I'm not looking forward to going back to work and don't know what I'm going to do if this keeps getting worse.

As far as VA goes I don't blame the providers themselves but rather VA leadership. It doesn't seem like a great place to work and they have to follow guidelines and I don't think they have a lot of autonomy. It's easy to tell who a new hire is. They are happy, smiling, and try to help. Then a few years later they seem burned out and on autopilot.

Usmccolon
Posts: 39
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Sat Jul 04, 2020 10:20 am

Had CT Last Monday. It didn't see anything that would be causing my issues. Surgeon told me to use ice and heat on painful areas and to reach out in 2 weeks if was still having issues. I sent message saying I was still having issues and I see him Tuesday for him to personally check things out. I'll have to ask him about CT report as well since it mentions "post hysterectomy" in part of report. I've never had a uterus.

Overall pain is much more manageable. I'm in pain more often though and I have to be very careful what I do in order to maintain this bearable level of pain.

DarknessEmbraced
Posts: 3528
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: I'm getting worried

Postby DarknessEmbraced » Sat Jul 04, 2020 2:20 pm

I'm sorry you're having such a hard time and I hope the surgeon will be able to give you more of an insight into your CT results. I hope you feel better soon and get answers!*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
Clear 5 year scans 11/21/19- Considered cured! :)

Usmccolon
Posts: 39
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Wed Jul 08, 2020 2:15 am

Thank you.

Update from appt today: i was told that it's possible gastritis and that when it hurts to try tums to see if it helped. If it does then I should get stomach scoped. Tums didn't help today though but I'll keep trying for this week to be sure.

Also said it could be entrapped nerve at the surgical site but that it would be highly unlikely. If it was he said maybe long term block or they could kill the nerve but then I wouldn't feel there anymore and wouldn't know if I was hurt there.

Another option if it doesn't get better is to go back in with scope to check for scarring issues. That's no guarantee and could cause more issues.

We did agree that for next month or so to try and take things easy since rest and not overdoing it helps relieves and prevent pain.

Usmccolon
Posts: 39
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Sat Aug 01, 2020 9:05 am

Update:
Reached back out to surgeon and awaiting response. Basically I can minimize pay by inactivity but I can't be as inactive as I need to be without going crazy because it basically means I would have to walk slowly and sit most of day.

Still getting pains mostly upper right and left abdomen. Wednesday night I was hurting when I got home from work so I started looking and feeling to see if I could pinpoint it. Incidentally I found a mass below left nipple and to left around rib 5 or 6. It doesn't hurt and is mobile so the next day I called VA to let them know and they got me in that day. My primary said he didn't feel it and I pointed to where it was and insisted it was there. He felt area for 2 more seconds and said he couldn't find it. So I left and went back home and I could still feel it and so could wife so I went to urgent care. Urgent care didn't have a problem finding it and did an X-ray which didn't show anything emergent. Provider there said it was about 1" x 2" and I needed follow up with primary who may want to do outpatient ultrasound.

I think I'm going to try and get new primary at this point if they let me. I've had a lot of issues for a while now . I'm in pain everyday day and I'm finally realizing that my complaints have been minimized for years and I really thought it must all be in my head but I'm realizing that's not true.

I did find out from appointment with primary though that I'm having lower left pain tenderness again as well.

Usmccolon
Posts: 39
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Mon Aug 03, 2020 11:39 am

Have another appointment now with surgeon next Monday, sounds like he is going to want to do put camera in abdomen to check for scarring.
Anyone know if that means another 6 weeks out of work?

Usmccolon
Posts: 39
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Thu Aug 27, 2020 11:52 pm

Couple updates. I asked for a new primary and my request was granted so I'll be getting new one in next week or two.

Sept 21st I'm having a colonoscopy, assuming benign results surgery is scheduled for Oct 1st to go back in laparoscopically and look for and get rid of adhesions.

That said I was able to get rid of most of my pain for a week!

So currently my entire body hurts. Even if I don't feel pain I catch myself acting like I am in pain and if I keep pushing then I really feel pain. I just don't have the endurance I'm used to having even walking. I have to get the energy up to get out of tub. I work on my feet all day so I'm sure that's not helping.

Anyways the important part I wanted to share. I've had 2 massages since surgery. This last one was by a new person I haven't seen before. She found 6 points that hurt really bad. My shoulder blades, lower back, and glutes. She spent most of time on those spots. I noticed that even though I was sore in those spots I was walking normal again and even my fast walking wasn't causing the really bad pain when I push myself. First couple days things got better. Still had abdominal pains. Not sure if it's just because of the relief but that level of pain is something I could live with unlike the pain I'm in now. 6 days after massage those 6 points really hurt again and the next day my abdomen was hurting again, I was having malabsorption issues again and just hurt all over.

I'm going back for another massage this Sunday to see if I feel better again for a week. Definitely worth trying for those of you who have chronic pain. Massage therapist didn't even touch my abdomen which had me most surprised because it helped my abdominal pain.

Usmccolon
Posts: 39
Joined: Wed Oct 30, 2019 12:45 am

Re: I'm getting worried

Postby Usmccolon » Thu Nov 19, 2020 7:48 pm

This is hopefully last update. I had a second surgery in Oct because of pain from first surgery. Saw some adhesions but nothing that would cause my pain. Pain remained.

Next step was nerve blocks or killing nerve. Decided to try PT. Long story short I've had a chronic cough for years, pretty sure it was stopping incision site from healing completely. Been wearing a wrap around abdomen in that area and pain is gone!

Koreysue
Posts: 190
Joined: Mon Apr 30, 2018 2:36 pm

Re: I'm getting worried

Postby Koreysue » Thu Nov 19, 2020 10:18 pm

Usmccolon wrote:This is hopefully last update. I had a second surgery in Oct because of pain from first surgery. Saw some adhesions but nothing that would cause my pain. Pain remained.

Next step was nerve blocks or killing nerve. Decided to try PT. Long story short I've had a chronic cough for years, pretty sure it was stopping incision site from healing completely. Been wearing a wrap around abdomen in that area and pain is gone!


I am just now reading through your story. Wow, what a rollercoaster. I’m glad you are pain free as of now.
Ksue
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6.1
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 NED
CEA 11/2018: 3.8
CEA 2/2019: 3.2
CT NED 6/18/2019 / CEA : 3.4
CEA 10/21/19: 3.2
CEA 3/9/20: 3.8
CT NED /CEA 6/17/20: 3.8
CEA 11/4/20 4.6 <——— whyyyy? (will retest in a few weeks)
CT NED 21/1/20 CEA: 3.5 (happy to see a lower number)


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