Question for those who know about peri mets

[NZJay]

Simple question:
Did you experience pain prior to diagnosis, and if so what kind/level?

A couple of months ago I had bad lower right abdo pain which coincided with constipation. Dr said it was likely scar tissue/adhesions and it faded after a couple weeks.

Pain is back again as of 8 days ago, but a little different in "feeling" and not as constipated this time. It's mostly been a dull ache when breathing or passing stool, but this morning I woke to some high level spreading pains which only lasted a minute.

The doctor again said he assumes scar tissue, but I just want to feel assured that I'm not being stupid by waiting for it to pass. I also lift weights and have had hernia surgery so I know there is a lot of scope for pains.

I had cea done 10 days ago but no word back yet, so I assume the previous 1 point jump has settled. The pain is also on the opposite side to where my tumour was, but I can't help worrying. Moreso as a t4b patient. I'm 32 months NED...

Any input would be great

[Redtexa5]

Well Jay good to see you're still around. While I haven't had peritoneal mets myself I have never run into anyone who has had pain associated with peri mets. That makes sense as the peritoneum is just the membrane that lines the abdominal cavity. I would imagine any pain caused by them would be associated with your other organs being squeezed by tumors and the tumors would have to be huge to do that.

Look, I like you, had my plumbing rerouted pretty substantially and I have had some sharp pain off and on for years associated with it, no cancer has ever been found and believe me they have looked. Things have calmed done a lot in the last 18 months or so and I am about 78 months out from treatment, finished chemo January 2010, so the pain might just resolve itself with time. I am not going to tell you not to worry since I would, but try to relax. I know how much waiting to see if this crap comes back truly does suck but there is every chance you will never need to sit in an infusion chair again.

Oh and FYI I just saw my Onc last month and so far so good, she doesn't want to see me for a year so there is hope.

[rp1954]

We've had to worry about peri mets recurring, along with the other sites. Peri imaging, hmmm. Pain? Well too many things going on back then, but not much in any case. So what do we do? Bloodwork.

These folks have more of a clue what lab values to monitor but don't directly establish prognostic thresholds, like "good", "maybe something else", "high suspicion to house-on-fire", for you. We do kinetics (changes) and stratification levels with various thresholds tight or loose. Markers of response, stratification and kinetics

[NZJay]

Well Jay good to see you're still around. While I haven't had peritoneal mets myself I have never run into anyone who has had pain associated with peri mets. That makes sense as the peritoneum is just the membrane that lines the abdominal cavity. I would imagine any pain caused by them would be associated with your other organs being squeezed by tumors and the tumors would have to be huge to do that.

Look, I like you, had my plumbing rerouted pretty substantially and I have had some sharp pain off and on for years associated with it, no cancer has ever been found and believe me they have looked. Things have calmed done a lot in the last 18 months or so and I am about 78 months out from treatment, finished chemo January 2010, so the pain might just resolve itself with time. I am not going to tell you not to worry since I would, but try to relax. I know how much waiting to see if this crap comes back truly does suck but there is every chance you will never need to sit in an infusion chair again.

Oh and FYI I just saw my Onc last month and so far so good, she doesn't want to see me for a year so there is hope.

Glad you're still doing well too!
Your reply makes perfect sense thanks. I guess you can't have pain without nerve endings.
I have definitely noticed my overall pain issues have reduced since surgery, but these very specifically-located ones continue to bother me mentally.
Hopefully a good final scan in January 2017 will put my mind at ease for the long term.
Thanks for the reply bro

[NZJay]

We've had to worry about peri mets recurring, along with the other sites. Peri imaging, hmmm. Pain? Well too many things going on back then, but not much in any case. So what do we do? Bloodwork.

These folks have more of a clue what lab values to monitor but don't directly establish prognostic thresholds, like "good", "maybe something else", "high suspicion to house-on-fire", for you. We do kinetics (changes) and stratification levels with various thresholds tight or loose. Markers of response, stratification and kinetics

Great information - thank you! I definitely regret not adding more tests to my monitoring from the outset. I guess I just assumed my doctors were very thorough. But in my country the monitoring seems fairly relaxed.
Example; I stupidly missed one of my 3-monthly CEA tests because of y health anxiety, and noone even bothered to nag me

[Steph20021]

Hey buddy,
I'm not writing this to scare you but since you asked, with this most recent recurrence my cea was trending up and then I had a nagging ache in my side when it showed up on CT. I hope yours is nothing serious. Cheers. Thinking of you.

[NZJay]

Hey buddy,
I'm not writing this to scare you but since you asked, with this most recent recurrence my cea was trending up and then I had a nagging ache in my side when it showed up on CT. I hope yours is nothing serious. Cheers. Thinking of you.

I wanted any relevant replies, so yours is greatly appreciated . Also I am really sorry to hear of your progression.

Can I ask - was your nagging pain constant / growing? Or did it come and go?
My first side pain was before my last CT scan, but the two more specific episodes were approximately 2-3 weeks long and associated with some moderate constipation. Then the pain went away for a couple of months, and started again recently.

In my head it seems that a cancer pain would appear and constantly grow rather than coming for a while then vanishing and reappearing weeks/months later? But I don't know; hence asking for advice.

Thank you and best wishes.

[Thetoad]

Hi fellow kiwi. I don't know about peri Mets and I'm not going to look it up! My Dr has told me to stop doing that, as I instantly think I've got it as well. 'Mild anxiety' he called it. Quite a nuisance. I just wanted to say hello again and wish you all the best as you approach the 3 year mark. My consultant said that's a good one to reach.

[CLD]

Hi NZJay, this past may, DH was having some mild pain, along with some bowel changes he had before diagnosis. He told the Dr who scanned him right away. Scan showed he was constipated, despite following the prescribed hi fiber, high protein, low carb glutton Fred diet. Perhaps that's the problem for you. Unfortunately, our minds are always going to assume cancer after dealing with the trauma of having had it.

[kandj]

DH's only symptoms were Upper right quadrant pain and constipation. He also had a very slight temp of 100.3, but they think that was pain related. I forced him to go to the doctor after 3 days of the pain, thinking it was his gallbladder or something. He passed out at the doctors and they sent him to the hospital. Had an u/s that was suspicious of the liver, then a CT that found everything. I would not ignore pain. Go in, ask for some imaging. Even a non-invasive u/s can show abnormalities with the liver. Not sure if it can spot peri mets. I know they were able to see the abscess DH had following his liver resection on an u/s.

[Tim UK]

Hi,
I had pain, upper right side. I could also feel tumours beneath the muscle & fat which felt a bit like the knuckles of one's fingers. I had some regrowth at the scar site and port site, which made the scars uncomfortable too. The docs kept reminding me that I had a load of re-routing going on (side-by-side join of colon remnant to small bowel) ... so this was likely causing discomfort too. Had some lower abdominal pain around the pelvis that they thought was neuropathic (nerves trapped in the scar tissue). In summary, there was a lot going on ... and in my mind it was all about the mets. The reality wasn't quite so bad (as the docs said) and related to the healing process, which took ages.
Best wishes,
Tim

[NZJay]

Thanks to you all for taking the time to reply to me. Based on what I've read, and the fact this has been causing me anxiety for several months now, I've decided it's time to demand closer investigation. I shall skip my GP and contact my specialist team and if necessary exaggerate the pain to make them order a scan.

Honestly I have been trying to ignore this and my post was probably aimed at enabling myself to continue doing so. Really appreciate the honest replies . Will hopefully post good results in coming weeks!

[NZJay]

Little update already:

Got my latest CEA test: 4.9
This is exactly the same as my previous one, which was taken about 6 months ago.

I have an appointment with my cancer surgeon on August 9th to discuss the pains and schedule a CT.

[Apple1291]

My dad had a recurrence in the peritoneum and a tumour at the resection site confirmed last month. Before it was discovered he was having very sharp abdominal pain that mainly occurred after he had eaten a larger meal. I think the pain was a result of the tumour on in his colon. He did have pain from scar tissue for quite awhile after his resection 5 years ago, but he said the pain felt different. It is good that you have asked for further testing and I hope your ct scan shows that you are still Ned.

[Steph20021]

Hey buddy,
I'm not writing this to scare you but since you asked, with this most recent recurrence my cea was trending up and then I had a nagging ache in my side when it showed up on CT. I hope yours is nothing serious. Cheers. Thinking of you.

I wanted any relevant replies, so yours is greatly appreciated . Also I am really sorry to hear of your progression.

Can I ask - was your nagging pain constant / growing? Or did it come and go?
My first side pain was before my last CT scan, but the two more specific episodes were approximately 2-3 weeks long and associated with some moderate constipation. Then the pain went away for a couple of months, and started again recently.

In my head it seems that a cancer pain would appear and constantly grow rather than coming for a while then vanishing and reappearing weeks/months later? But I don't know; hence asking for advice.

Thank you and best wishes.

It came and went during the day but I felt it at least a bit everyday and overtime the pain got stronger. I started with Tylenol but soon that didn't cut it. Since yours went away for a bit, it doesn't sound like what I was experiencing. Thanks for your well wishes. I'm starting folfiri again on Friday and not giving up yet.