The worry about cancer returning never goes away.

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DarknessEmbraced
Posts: 3713
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

The worry about cancer returning never goes away.

Postby DarknessEmbraced » Wed Aug 31, 2022 8:28 am

I wish the fear of my cancer coming back wasn't always present. I'm having blood in my stool some of the time. I had a fissure on the outside but now it's from the inside. It's not inside. I accidentally missed an appointment with my GI last week. He's completely booked up. I'm unsure when I will be able to get another telephone appointment with him. I'm going to ask for a colonoscopy for piece of mind. He has told me in the past that he would do a colonoscopy if I'm concerned. I usually get a colonoscopy every 2.5 years. I had one last year while I was hospitalized with ischemic colitis. Thanks for me letting me vent about this.
Last edited by DarknessEmbraced on Sat Sep 03, 2022 7:11 am, edited 1 time in total.
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! :)

Claudine
Posts: 727
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Worrie about cancer coming back never go away!

Postby Claudine » Wed Aug 31, 2022 2:10 pm

I'm sorry you're having a hard time, and can totally understand how cancer so profoundly affects one's life that it's impossible to fully leave it behind... Getting a colonoscopy is a great idea, and it will hopefully come back clean and put your mind at rest (at least for a while!)
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 vertebrae 04/18; left adrenal gland & small lung nodules 03/19;
rectum 02/22 (pT3 pN0 stage 2A); L3 vertebrae 09/22

Surgeries: intestinal resection 05/18 (no cancer - Crohn's); adrenalectomy 02/20;
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; reversal 09/22;
L2-L3-L4-L5 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri + Avastin 03/19 - 01/20;
adjuvant chemoradiation (Xeloda) 06/22

DarknessEmbraced
Posts: 3713
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Worries about cancer coming back never goes away!

Postby DarknessEmbraced » Thu Sep 01, 2022 9:25 am

Thank you Claudine! I agree. It may take a while to get a new appointment with my GI since missing his calls last week. I turned off the setting on my phone which made it so my phone didn't ring if a number wasn't on my contact last. He's the only doctor who calls from a private number. It's a private line in his office.
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! :)

sandkeeper
Posts: 13
Joined: Tue Dec 19, 2017 4:58 am
Location: St Albans, UK

Re: Worrie about cancer coming back never go away!

Postby sandkeeper » Fri Sep 02, 2022 10:53 am

I’m so sorry to hear you’re having a rough time, DE. I’ve gone through something similar recently. Although I’m approaching my five year mark and hoping to get the all clear, I’ve been a bag of nerves due to some new and worrying pain in my tail bone… and of course the doctors want to rule out a local / pelvic recurrence.

My scan came back clear yesterday, but it’s a reminder that we’re never more than a symptom away from being in a very scary place again. Especially if the symptoms are similar to when you were diagnosed, I’m sure it’s a form of PTSD.

If it’s any consolation, I’d think you’re extremely unlikely to have a recurrence at the anastomosis this far out from your original diagnosis, which (in my understanding) is the only type of recurrence that might cause rectal bleeding. And while a new primary is always a possibility (hopefully also remote)… your monitoring should be enough to keep on top of anything before it happens.

How do the doctors treat your ischemic colitis? Seems you’ve had a flare up of that more than once and is the more likely cause of rectal bleeding. Is it considered an after effect of your surgery?
31 year old male, dx Oct 17
Staged IIA post sigmoid colectomy
T3b N0 M0
LVI-, PNI-, MSS
No chemo
Oct 18: clear CT
Oct 19: clear CT
Nov 19: became a father!
Oct 20: clear CT
Nov 20: clear colonoscopy
Nov 21: no more CTs but still being monitored and NED
Aug 22: clear MRI (tailbone pain triggers a scan)
CEA: always 1

DarknessEmbraced
Posts: 3713
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: The worry about cancer returning never goes away.

Postby DarknessEmbraced » Sat Sep 03, 2022 7:20 am

Thank you sandkeeper! I'm glad your scan is clear. This bleeding is some bright red blood on my stool some of the time. I've been dealing with constipation more often lately. I'm going back to Linzess(Constella here) daily instead of every other day to see if it helps. This bleeding isn't like the bleeding I get during an ischemic colitis attack. That bleeding is much worse, I have diarrhea, severe pain, severe nausea(sometimes vomiting), dripping sweat, severe bloating. I can become dehydrate. My GI put me on a daily low dose coated aspirin in 2018 to try to prevent an ischemic colitis attack. Unfortunately, that didn't help. I only go to the hospital for an ischemic colitis attack if I have a lot of bleeding and become severely dehydrated. I stay at home when the bleeding isn't severe or isn't present and when I don't get dehydrated. At the hospital they just give me a lot of fluids, pain relief, and I go back to a liquid diet slowly building up to a low fiber diet. I get an abdominal CT, CRP blood tests, and a colonoscopy. I haven't found any way to prevent ischemic colitis. attacks. There is no medication for it. I agree that it's unlikely a recurrence in the original anastomosis site. I had my last yearly CT in 2019. I no longer get tumor marker blood tests. I get a colonoscopy every 2.5 years. I can have one sooner if I'm concerned.
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! :)


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