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Cancer: Rectal & Anal Message Board

Pain 6 weeks after removal of rectal tumour


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Old 07-13-2015, 09:23 AM   #1
Sadtosay
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Pain 6 weeks after removal of rectal tumour

My partner had a stage III rectal tumour removed and an ileostomy installed 6 weeks ago and still has constant pain.

I keep telling him it is just his body healing, but he keeps panicking and is convinced he has an abscess or worse.

His surgery was not an unqualified success. The radiation and chemo before the surgery did not shrink the tumour much, and so it had to literally be scraped off the pelvic bone. He bled a lot, and the surgery was 5 hours. I have no doubt that his pain is just the body healing, but I thought I should ask, just in case: is constant pain 6 weeks after rectal surgery normal and to be expected?

 
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Old 07-13-2015, 01:27 PM   #2
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Re: Pain 6 weeks after removal of rectal tumour

Hi my hubby had stage 3/4 colored tal in 03. Size of softball. He's still here.

He had pain for at least 9 months I guess. First he had surgery, he was almost blocked. Then he had chemo and rad. It takes a lot of time for inflammation to calm down.

Is it more like pressure? When is his next checkup? Is he taking his softners and fiber, drinking water?

Radiation REALLY does a number on surrounding tissue as well. They scrapped his bone as well.

He fid 2 months of IV chemo 6 months of pills. 42 days of rad.

Good luck

 
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Old 07-13-2015, 08:20 PM   #3
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Re: Pain 6 weeks after removal of rectal tumour

Thank you! Our situation is very similar, except that he had 5 weeks of oral chemo as well as radiation prior to surgery, and he will be getting 6 months of oral and intermittent IV chemo starting in about a month.

It's always good to hear the survival stories. Stage III is scary.

 
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Old 01-21-2017, 03:24 PM   #4
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Re: Pain 6 weeks after removal of rectal tumour

Unfortunately the pain was not from the surgery. It went on and on, with repeated visits to the doctor with no resolution until finally the original surgeon ordered a PET scan.

Guess what? That pain everyone was dismissing was....drumroll...a tumour that got missed during the initial diagnostic stage (it was apparently visible on the first PET scan way back in January 2015. And worse yet, it's in the sacrum, the bone at the bottom of the spine. So now we are dealing with a stage IV terminal case.

Last edited by Sadtosay; 01-21-2017 at 03:24 PM.

 
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Old 01-21-2017, 08:41 PM   #5
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Re: Pain 6 weeks after removal of rectal tumour

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Originally Posted by Sadtosay View Post
Unfortunately the pain was not from the surgery. It went on and on, with repeated visits to the doctor with no resolution until finally the original surgeon ordered a PET scan.

Guess what? That pain everyone was dismissing was....drumroll...a tumour that got missed during the initial diagnostic stage (it was apparently visible on the first PET scan way back in January 2015. And worse yet, it's in the sacrum, the bone at the bottom of the spine. So now we are dealing with a stage IV terminal case.
I am so so sorry to read this. I cannot imagine what you are going thru. To have the radiologist miss a reading like that! I don't know the process for reading PET scans but it sure sounds broken!
I pray his pain is at least being manged as much as possible. Is he under pain mgt dr care?

Cathy

 
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Old 01-22-2017, 08:15 AM   #6
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Re: Pain 6 weeks after removal of rectal tumour

Yes, he has pain meds.

There is surgery for this, and it can be curative in a small number of cases. This is the only met in his body; the original tumour is still gone. Oddly, the original tumour biopsy showed that there was no lymph involvement and it really seemed as though the cancer had been contained to the one site. It somehow directly went from the rectal tumour straight to the bone, bypassing the usual liver/lung involvement.

The surgery might buy us years of time. However, because it's such a rare situation, and such an uncommon surgery, there isn't a lot of data on outcomes. It's a nasty surgery that will kill of many nerves, but it's the best option for us.

Last edited by Sadtosay; 01-22-2017 at 08:16 AM.

 
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Old 01-23-2017, 07:55 AM   #7
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Re: Pain 6 weeks after removal of rectal tumour

Yes my hubby has nerve damage from his surgery, they said he may. Kind of killed his manhood if ya know what I mean. When he has to go poo he has to go NOW too. So say if we have an appt the next day he is real careful as to what he eats. He won't take his fiber either ugh.

Btw have you read about proton beam rad? Pretty new. Just an FYI.

You know having the surgery may buy your partner enough time, you never know about new medications or procedures they could develop in future.

I have bad back problems I am avoiding invasive procedures for now, knowing research is an evolving process to hopefully less pain in near future. Now if we could just get insurance to pay for everything mine is terrible. 😆

Cathy

 
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Old 01-23-2017, 08:15 AM   #8
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Re: Pain 6 weeks after removal of rectal tumour

We've read about the new radiation, but the doctors are loathe to use any more radiation on him - apparently there is a maximum and he has reached it already -- seems to be a Canadian thing. It seems odd to be reluctant in a terminal case, but who knows?

Anyway, the surgery will actually remove the entire tumour, which is a good thing, even with all of the complications. They'll also switch him from an ileostomy to a colostomy, which requires far less daily maintenance.

Sometimes we're angry the tumour was missed, but we had a great summer thinking he was cured. It gave us a bit of time to have fun.

 
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Old 01-23-2017, 10:11 AM   #9
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Re: Pain 6 weeks after removal of rectal tumour

I didn't know they were two different things duh me.

Yall made lemonade!

Yea hadn't heard of Max rad dose. Seems like over time it would ok to do again. I'm sure there's been studies though. Plz lmk about surgery. Keeping you guys in my thoughts and prayers.

 
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Old 01-23-2017, 03:18 PM   #10
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Re: Pain 6 weeks after removal of rectal tumour

Well, we just had a shock. Turns out that someone in the bone surgeon's office didn't forward the file to the neurosurgeon's office. This, after 4 months of waiting for a surgery that was supposed to take place in January, Fat chance of that now! In many ways our Canadian medical system is great -- our cancer treatments are free -- but there are also obvious problems, too.

 
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Old 01-23-2017, 09:32 PM   #11
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Re: Pain 6 weeks after removal of rectal tumour

Omg I can't believe that. It is such a let down when a procedure gets rescheduled/cancelled at last minute but this? Can't imagine how you guys are feeling, angry, sad all the emotions! Yea free if you can get it done, right?

 
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Old 01-25-2017, 11:19 AM   #12
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Re: Pain 6 weeks after removal of rectal tumour

Someone messed up badly. After contacting the neurosurgeon, we received an immediate response. Clearly we fell between the cracks because of some clerical error. The problem is that this kind of delay can mean the difference between life and death.

I'm very angry. Doctors have let my partner down for YEARS; telling him that his bleeding and extreme pain during rectal exams was just bleeding piles (that went on and on), then not telling him for three months that his stool test almost certainly indicated cancer, and even then he had to ask what the results were. Then he was going to have to wait for another three or four months to get in to see a specialist. At that point I insisted we go private, and that's when we started to get some quick action. But all of these incompetencies and delays mean that instead of having stage 1 or 2 cancer and living for another 25 years, we now may have three or four left together, and that's if if we're lucky. My impression of most family doctors is that they are lazy and incompetent (my own life has been damaged in the same way, but that's another story).

 
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Old 01-27-2017, 03:07 AM   #13
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Re: Pain 6 weeks after removal of rectal tumour

Yes that is a HUGE error. It can bring on so many emotions. My mom was in a nursing home in 2015. I kept a close eye on things. I had a few nurses/aids I could depend on but they are stretched so far. Medicare only requires the design to visit 2 a month, they had 2 assigned to facility. I had already switched her to 2nd 6 myths prior due to issues.

She was not eating, she told me she would get choked. I had their speech therapy team asses her swollowing and they said it was fine. 2 weeks later I could tell on the phone shecwas having some confusion. At 98 she was sharp as a tack, had her own cell phone and such.

Anyway, when her confusion started I immediately as for them to check for UTI, very common when wearing diapers. They checked found nothing.

2 days later she was worse. I called at 1:30 an asking floor mGr to please take her to ER.

It took a week for them to finally get a Dr to ck her and they finally sent her to ER.

By this time she was in acute kidney failure AND she had been aspirating for over 2 weeks had fluid in her lungs. She passed next day.

Only a couple people know this. Everyone was hurting so badly from her death, she was family matriarch.

I myself had a terrible time with guilt, anger, I was actually sick with vomiting from it all for over a month.

I debated suiing, I had the documentation. But I knew it would drag out grieving process even more I could not physically take ut, I was 58 at the time.

So I did not sue. I let her rest peacefully.

Even though I know they are hurting others. But usually us working on a bill to have nursing homes fined twice as much for being understaffed now. I helped get it started, I feel good about that.

I suppose you want to do something I know yall are angry. It's a tough decision I know. I wouldn't blame you.

I am so truly sorry this happened. Maybe God has a better plan, who knows.

Hope you get to make the most of life now as you can. 😍❤❤❤

Cathy

 
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Old 01-27-2017, 09:05 AM   #14
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Re: Pain 6 weeks after removal of rectal tumour

How awful for your mother. You hear these same stories over and over, and yet nothing seems to change. I worry about what will happen to me when I'm very old -- we have no children and now I'll be alone, too. Scary.

I wouldn't bother trying to sue. It's too late to go after the doctors I would want to sue, anyway - the incompetent family doctors who never bothered to order what would have been logical tests given the pain and bleeding. I mean, it's blindingly obvious even to a layperson that something was drastically wrong.

The current doctors at the BC cancer agency have been wonderful. It's the clerical staff member I'm angry with.

 
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Old 01-27-2017, 05:52 PM   #15
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Re: Pain 6 weeks after removal of rectal tumour

Hi, wondered, does the clerical staff even know? And you know sometimes they will blame support folks for their mistakes.

Cathy

 
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