Asking for advice

[justaguy]

Hello all. I've lurked for a while, but recent events have prompted me to ask for your opinions regarding my prognosis. By way of background, I was diagnosed with stage IIIA rectal cancer in mid December during routine colonoscopy. I had neoadjuvant chemo of oxaliplatin and 5-FU for about 3 months (infusion every 2 weeks along with a 48-hour 5-FU pump). That was followed by 25 daily sessions of radiation and a 5 day 5-FU pump. Treatment was completed on 6 May. The tumor was located within 1 cm of the anorectal junction.

I am scheduled for an APR in one week. My oncologist had me get a neck to knees PET scan yesterday. We read it today. To my surprise there was no evidence of cancer. My surgeon is going to still push for me to get the APR. My oncologist said to follow my gut. I have been struggling with the concept of getting the surgery even before the PET scan.

Were any of you in a similar situation to mine. I am interested in hearing from any of you who might have some information or opinions.

Regards,
just a guy

[dogtalkerer]

well, first read up on PET scans or ask the oncologist, from my understanding you can still have cancer but its too small for the PET scanner to pick up. the surgeon gets right in there and sees first hand. what did your last biopsy say?

then talk to the surgeon more than the oncologist about the surgery. see what they say? do they do sphincter saving surgery whenever possible? apparently some don't. I was boarder line so I ended up with a bag. I think a bag is better than having leakage problems all the time.

[ot dave]

I wasn't in your situation. My tumor was obvious, and a stage III as well. From what I'm understanding from your post, it sounds like the chemo and radiation have shrunk the tumor...which is what it was supposed to do. That doesn't necessarily mean you're free of disease. If you stop chemo and radiation, does it return? When surgery is performed to remove a tumor, they want to get "good margins" around the tumor to ensure no cancer cells have migrated away from the main body of the tumor. If the tumor was near the sphincter muscles, then they will need to go, and you'll need the total APR. Definitely discuss it with your doctors.
As for having an APR, it's very doable. I've had mine for 10 years. Got it when I was 37. I'm still as active and doing all of the things I did before the surgery. My colostomy doesn't stop me or slow me down. Other things like my age, sore muscles, and torn menisci slow me down more than the colostomy! Hope this helped some.

David

[lp1964]

Agree with David. Thank god when my cancer (same location as yours) was removed there were no living cancer cells in it. But they don’t know that until they slice it up and look at it with a microscope. And even then it is not definitive. These sucker can come back. My philosophy is to use every available weapon, because if, god forbid, the cancer comes back I can say at least I tried everything. APR is hard, but ten times easier than chemo. So you are through the hard part.
Laz

[justaguy]

I opted to cancel the procedure. I return to Dr. in a few weeks.

[justaguy]

Update. So I had a follow up colonoscopy, biopsy was negative. However, I did a second scope and unfortunately that biopsy showed cancer. My APR is scheduled for Oct 15, 2019 (the day after tomorrow). My CEA numbers are still good.

For whatever reason my anxiety level is much lower than the first time I was scheduled for surgery. I guess I feel like I've done all I can to avoid this, but damn this sucks.

[nickolas]

Sorry for your recent results, but yes get the surgery. You really want to do everything you can in the beginning and not look back with regret. Are you familiar with ColonTalk?

https://coloncancersupport.colonclub.co ... um.php?f=1

If you have not, you might want o check it out. You will find a lot of knowledgeable people and a wonderful support team that will help you every step of the way on your cancer journey.

Good luck with your upcoming surgery.

Nickolas

[ot dave]

Praying for an uneventful procedure and a speedy recovery. Know that we are here to help with any ostomy questions you'll have afterwards. Keep us updated.

David

[justaguy]

Just a quick update. I seem to be amazingly fortunate so far. My APR (6 days ago) was done robotically by a board certified GI surgeon. I was sore but no real pain. I had a tylenol IV for 48 hours after surgery and nothing since. Literally nothing! The cut on my ass is the most painful, and I mean it feels like a cut, not that bad. Wafer was itchy today so I changed everthing. My first time. It went smoothly. I follow up with the surgeon next Monday. I'll probably do mop up chemo. I see oncologist in 3 days to get see what is next. Modern medicine CAN be amazing.

Fortuitously yours,
justaguy

[nickolas]

Just a quick update. I seem to be amazingly fortunate so far. My APR (6 days ago) was done robotically by a board certified GI surgeon. I was sore but no real pain. I had a tylenol IV for 48 hours after surgery and nothing since. Literally nothing! The cut on my ass is the most painful, and I mean it feels like a cut, not that bad. Wafer was itchy today so I changed everthing. My first time. It went smoothly. I follow up with the surgeon next Monday. I'll probably do mop up chemo. I see oncologist in 3 days to get see what is next. Modern medicine CAN be amazing.

Fortuitously yours,
justaguy

Okay, wafer itchy in NOT normal. The only 2 times it happened to me in over 15 yrs. 1) First time it happened after a few months out from surgery, I learned yeast infection, jock itch and athlete's foot are all caused by the same fungus. I got athlete's foot in high school. Guess that same fungus was around my stoma, Ostomy nurse recommended a powder based product, problem solved. I still use it today.

2) the next time it happened, guess I developed an allergic reaction to Convatec after 2 yrs of use. Switch to Hollister, have not had any itchies since then.

If the itchies continue, get to an Ostomy nurse ASAP, for them it usually is a simple solution.

Glad your surgery went well.

Nickolas