stubborn like a mule

[Frankman]

Hello,
I am currently in the hospital room watching my dad sleep watching his stomach contents pass through his NG tube for the second night in a row. So I of course have now read every article there is on colon cancer, but haven’t came across anything directly similar to my dad’s experience...
My dad is 64 and stubborn like a mule... for the past 8 months almost he hs had weeks where he couldn’t have a bowel movement, couldn’t eat for days and at times had to sleep on the bathroom floor because he couldn’t get back up. I live across the country and he down played this all over the phone but the rest of my family begged him to go to a doctor but he kept putting it off til his Medicare kicked in, until now.. this time he went two weeks without any sort of bowel movement and 5 days without eating before he finally consented to go to the hospital... that was 3 days ago. He has a 5 cm mass in his colon and because of how long he’s been having symptoms they couldn’t even do a colonoscopy because he has so much backed up. He’s been resting and on morphine while this tube drains out his stomach, and it’s been on a non stop flow since Sunday. He is having a hemi-colectomy tomorrow, with a colostomy bag. He had a ct scan to confirm the mass. Of course I know they can’t confirm it’s cancer til the path report comes back but all signs point to cancer and the surgeon is convinced it is too... his parents died of cancer, he’s a smoker and has had skin cancer in the past
Anyways, my point of all this overshare is the internet has me convinced this is end stage IV, so I’m just wondering has anyone else gone thru this, the several months of signs and symptoms ignored... leading to a complete blockage... and if so .. what was the prognosis?
Thanks for reading all of this

[rp1954]

A lot of people are missed or misdiagnosed for months and wind up with some degree of blockage. There are three things you might separate in your mind about the full blockage.

One, size of the blockage mass is only weakly prognostic because size doesn't really tell you much about the biology of the tumor, its biological ability to metastasize, without other information. Obviously bigger means longer exposure but evolved/evolving biology is really the big factor.

Second is whether and where he might have metastases. This is the major component of the early pathology scoring for patients.

Third, a full blockage affects survival, perhaps because many in the past were done in a rush and fully pressured up, more likely losing contents at emergency surgery, spreading infection. It sounds like they are taking their time now. Also his risks are higher because his nutritional balances have been whacked for a while.

[boxhill]

Your dad put off seeking care until Medicare covered him? Welcome to the world of the uninsured. It sounds as if he was in extreme pain, I'm sorry. Blame our screwed up medical insurance system, not him.

If it's any consolation to you, putting off surgery for several months is probably unlike to have affected the staging of his cancer. Do you have the CT scan results to read? Although you won't really know his stage until after he's had surgery, you might get some indication from the CT scan results whether anything is involved other than the colon itself: stranding, enlarged lymph nodes, suspicious signs in the liver, etc.

I had an emergency right hemicolectomy due to a blockage in March. The surgeon removed a bunch of cancerous lymph nodes and a tiny met on my liver that wasn't even visible on the pre-surgical scan. That made me stage 4. The rest of my liver is as smooth as a baby's bottom. I've recently had a full set of scans, and there are no suspicious masses or signs of cancer to be found. I'm doing adjuvant/mop-up chemo. So far so good. Your dad could quite conceivably have a similar experience. Of course, uncertainty is the name of the game with cancer, and it could always rear its ugly head again. But don't assume the worst yet.

One thing that made a difference for me, I think, is that I had a good, experienced surgeon who actually specializes in liver surgery and transplants, and he took a good, thorough look around while he was in there. That's how he found the tiny liver thing: by touch and then by feel. He said it was like a pimple. I personally thing that an open surgery done by an experienced person is more likely to find stuff than laparascopic surgery, which in my case would definitely have missed the liver met. Good luck to your dad.

BTW, I was 64 too, and it was just a couple of weeks before Medicare kicked in. Luckily, though, I have good insurance thru my husband's job. But it hasn't always been that way, and I know what it is to delay or totally avoid care for financial reasons. Although it does sound as if your dad took it to an extreme! If I hadn't been insured, we would have been looking at bills around $60K just for surgery and my hospital stay. Actually, probably far more, because the uninsured are billed at a much higher rate. It's not trivial.

[MissMolly]

Frank man:
Yout father’s delay in accessing medical care due to inafforadability of insurance is a testament of the dire straights that face many in this country.

I am sure that you are relieved that your father now has medical insurance coverage through Medicare. You will want to explore options for a secondary policy to cover the roughly 20% that Medicare Part A does not cover or look into a Medicare Advantage HMO plan.

Speaking to the copious volume of liquid contents siphoned by your father’s NG tube . . .

I suffered an extensive perforation of my intestinal tract a few years ago. The NG tube sucked out liter after liter after liter of gastric contents - even after surgery.

The digestive system secrets digestive enzymes and fluids that facilitate the passage of foodstuffs down and through the digestive tract. When the body perceives of a restriction in flow (a kink in the intestine, a mass that obstructs the opening/lumen of a segment of intestine) the body will actually produce more secretions in an attempt to “move things along” (secretions from the gall bladder, stomach, liver, pancreas). Some of what you are seeing in terms of the high volume of NG tube collection is from this heightened flow of gastric secretions.

Sending you and your father healing energy,
Karen

[Jannine]

Just adding to what others have said, I had steadily worsening symptoms for a couple of years before finally getting a colonoscopy, and found out I had a near-obstruction that turned out to be a 7.5cm tumor. My problem was the flip of your dad's; near the end I was spending a good hour and a half each day on the toilet. I find that really hard to admit, even now. Most of us weren't comfortable talking about problems with pooping until after we ended up here. I'm stage III (no metastases found) and the oncologist told me up front that what I have is definitely curable. That doesn't necessarily mean it WILL be cured, but it does mean I have a good chance at it once I'm through chemo, and I'm hopeful I'll be part of the 80% at my stage who get cured.

So I wouldn't worry so much about the size of the tumor. The main thing is getting through the surgery, finding out what the tumor staging is, and then going from there. I did not get a stoma (they had warned me that it might be necessary, but they couldn't say for sure until they opened me up in surgery and saw how bad it looked) but after reading all the information people have provided here about it, I feel confident that if I ever do need one I can totally handle it.

That stubbornness may have made things go much further than they should have, but it can also work to his advantage in recovery if he decides to use it that way. Good luck to him and to you in navigating all of this. It is a crash course, for sure.

[Frankman]

Thank you all so much for your help. I couldn’t agree more about our healthcare system, it’s infuriating. We are out of surgery now, they had to switch to an open surgery because the tumor had grown into the abdominal wall. Thanks so much for your wisdom and I wish you all the best.

[NHMike]

I'm sorry for the rough time that you and your father have gone through. But, as others have said, Stage 4 refers to remote metastasis and there's no indication of this so far. A CT scan or MRI are usually done to rule out spread. I had a 5 CM tumor in the rectum and it was rather painful too but didn't result in a complete blockage.

Cancer is something to worry about but it is often quite treatable, especially at Stage 3.