APR surgery scheduled. Need your advice

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ShooterDave
Posts: 9
Joined: Fri Aug 24, 2018 1:46 pm

APR surgery scheduled. Need your advice

Postby ShooterDave » Tue Aug 18, 2020 7:46 pm

Hi all,

I haven’t logged on in a while, but I still check in from time to time.

I’m now two years into my stage IV rectal cancer treatment ordeal. I’ve had a bunch of chemo, radiation, three surgeries, and some procedures so far. I’ve tolerated most of it very well and recovered quickly. However, my primary tumor was never resected as it was considered locally controlled and other areas required priority attention.

I was scheduled for a y90 treatment to try and get some small pesky liver mets that keep popping up, and I pushed my doctors to really get a better handle on my primary tumor area as it’s been a year and a half since my chemo/rad treatments. My concern was that if it wasn’t under control anymore, it will keep causing distant mets and eventually, I’ll run out of options. After a sigmoid scope, and a bleeding episode between appointments, it was determined that my primary tumor has grown back. I am now scheduled for APR surgery with a permanent colostomy and “Ken butt”.

I’ve always known this was coming, but was happily ignoring it for a while. It’s the best treatment option at this point, and I’m not too anxious about it anymore.

I’m hoping to get some advice from those who have had this surgery. What did you wish you knew before hand?

What items did you end up using that made recovery more comfortable? Are there any items you found to be indispensable now that you have it more figured out? I don’t want to be suffering while waiting for stuff to arrive.

Thanks in advance,

Dave
DX 8/18 at 42yo
T3aN2M1 RC with mets to lungs and liver
4 rounds FolFox and CT scans
Liver resection 12/18
8 more rounds of FolFox and 28 rounds radiation. Not visible on scans.
8 rounds Folfiri for growing lung mets. Scans 9/19 stable w/ new liver mets.
4 rounds FolFox w/ Avastin, scan shows progression in lungs and liver.
12/19 and 2/20 bi lateral VATS surgery.
3/20 and 6/20 microwave liver ablations
7/20 scans show continued disease progression

User avatar
beach sunrise
Posts: 240
Joined: Thu Mar 05, 2020 7:14 pm

Re: APR surgery scheduled. Need your advice

Postby beach sunrise » Wed Aug 19, 2020 12:22 am

Hi, recovery is a big deal for such a big surgery as APR. Infection and inflammation control are key in my opinion. Request celebrex/mobic after surgery. They might only give it for 2 weeks but trust me, you will need it for inflammation control. For preventing infection at the wound sight, I used the sitz bath with epsom salt in it 2x daily for about 1 month and sometimes instead of epsom salt I used baking soda. It was suggested that for showers to use cetaphil or similar, no fragrance or skin softeners in it, to prevent irritation/infection. They will probably send you home with pain meds. My cocktail was pain meds combined with advil and tylenol (which I had to get as we didn't already have it at home). I had an air filled square cushion with holes in it to sit on (amazon has them), they are mainly used for wheelchair seats. I would not recommend a donut or the U shaped things.
OH, and an electric recliner is the bomb :)
You will be fine and congrats for getting to the surgery goal!
If you don't have a weak stomach or anxiety, you can watch the short of APR surgery on SAGE. Many people would soon just not know how it goes but it really helped me prepare mentally. I knew exactly what I was going into and left me without wondering what the heck was really involved.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: APR surgery scheduled. Need your advice

Postby Soccermom2boys » Wed Aug 19, 2020 11:15 am

Hi Dave! I have had the surgery you are planning for and wanted to answer some of your questions.

As best as you can, plan on how the ostomy will be affected by the waistline of your clothing. You do have to consider that in general there is a limited amount of space so to speak for where they can place the ostomy so that it has the best chance for long term viability using areas with strong abdominal wall muscles. I wish mine was a little lower as it tends to always be right where the waistline of my clothing sits, but then again if it was too low then the bag itself would probably sit too low and that might annoy me so who knows. You should have an appointment with a WOC nurse prior to the surgery and they will go over the details, place an X on your skin in sharpie for placement, and hopefully give you a kit with a sample in there to see what it will look like and detail the operation and how to care for it after the surgery, etc. Wear the sample they give you for a day just to get a preview of the placement. I am assuming it is a colostomy so it will sit on the left side of your abdomen. Also—ask if they are going to remove the rectal stump. Some have it in there in the chance that they reverse their colostomy further down the road. From anyone who has had the rectal stump left, there will in all likelihood be mucous that drains from that so if yours is truly to be a permanent colostomy then make sure the rectal stump goes so you don’t have to deal with that.

I don’t recall any specific item that helped with recovery—just time really. I am not sure if you are working, but I would strongly suggest taking a full 8 weeks recovery from work if you are. You do not want to sit directly on your butt for more than 20 minutes at a time for at least those first two months so that you can let the wound heal as best as possible. The recliner as beach sunrise suggested is a definite help—I pretty much lived on mine those first two months, kind of slouched so that my butt never had direct pressure on it. I didn’t use any other cushion so I can’t recommend any, but as beach sunrise also said—do not get the donut shaped ones, they would make it worse as they would make the area pull apart rather than stay stitched together.

As for any pain meds, I just did the extra strength Tylenol for a few days after I got home from the hospital and that was enough for me so everyone is different on how they experience that post-surgery pain. Not sure of your limitations now, but do your best prior to surgery to be in as good physical shape as possible as it makes recovery easier, especially if you can keep your core in shape as that is where the surgery recovery will be most crucial. I am by no means Ms. Athletic, but I would run a few miles at least 3-4 times a week and walked tons from diagnosis to surgery which was about a 4 month window and I think that helped with my recovery as well.

It’s so hard to imagine your life with a permanent ostomy prior to it happening, but after a while (and if I am being honest I mean at least a year out from the surgery) you adapt and you realize how it’s really not the end of the world and occasionally has a perk (like colonoscopy preps! LOL). I cannot think of one single thing I haven’t been able to do post surgery that I enjoyed pre surgery. There is also the UOAA website/forum that is good to checkout and join for specific ostomy questions/support—they are a friendly bunch like this forum is. :D

Good luck with the surgery and keep us posted on your recovery!
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

ShooterDave
Posts: 9
Joined: Fri Aug 24, 2018 1:46 pm

Re: APR surgery scheduled. Need your advice

Postby ShooterDave » Wed Aug 19, 2020 4:49 pm

Thank you both for the replies.

I’m still working every day and have been for many months, so I’m not in horrible shape. I have fared very well for my past surgical recoveries. The surgeon has told me there is no saving anything back there. Full APR and “Ken butt”.

I have an appointment with the Ostomy nurse the day before my surgery, but now I’m wondering if I shouldn’t move that appointment up to get a better feel for appliance placement? I don’t think I could handle being stuck wearing sweatpants for the rest of my life.
DX 8/18 at 42yo
T3aN2M1 RC with mets to lungs and liver
4 rounds FolFox and CT scans
Liver resection 12/18
8 more rounds of FolFox and 28 rounds radiation. Not visible on scans.
8 rounds Folfiri for growing lung mets. Scans 9/19 stable w/ new liver mets.
4 rounds FolFox w/ Avastin, scan shows progression in lungs and liver.
12/19 and 2/20 bi lateral VATS surgery.
3/20 and 6/20 microwave liver ablations
7/20 scans show continued disease progression

User avatar
beach sunrise
Posts: 240
Joined: Thu Mar 05, 2020 7:14 pm

Re: APR surgery scheduled. Need your advice

Postby beach sunrise » Wed Aug 19, 2020 5:59 pm

Yes, put on your fav clothes and see where stoma should not be and mark yourself for where you would prefer it.
I measured and marked myself. Showed it to my surgeon and ostomy nurse. It was doable. I feared if I didn't discuss this with the surgeon, decide and make sure we were all on same page then I would be wearing moo-moo's the rest of my life, uhmmm no thank you on that!!!!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

ShooterDave
Posts: 9
Joined: Fri Aug 24, 2018 1:46 pm

Re: APR surgery scheduled. Need your advice

Postby ShooterDave » Wed Aug 19, 2020 6:48 pm

Then again, moo-moo’s do look awfully comfortable....

I’ll need to think on this.
DX 8/18 at 42yo
T3aN2M1 RC with mets to lungs and liver
4 rounds FolFox and CT scans
Liver resection 12/18
8 more rounds of FolFox and 28 rounds radiation. Not visible on scans.
8 rounds Folfiri for growing lung mets. Scans 9/19 stable w/ new liver mets.
4 rounds FolFox w/ Avastin, scan shows progression in lungs and liver.
12/19 and 2/20 bi lateral VATS surgery.
3/20 and 6/20 microwave liver ablations
7/20 scans show continued disease progression

User avatar
beach sunrise
Posts: 240
Joined: Thu Mar 05, 2020 7:14 pm

Re: APR surgery scheduled. Need your advice

Postby beach sunrise » Wed Aug 19, 2020 11:49 pm

LOL...you aint right!!!
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

User avatar
beach sunrise
Posts: 240
Joined: Thu Mar 05, 2020 7:14 pm

Re: APR surgery scheduled. Need your advice

Postby beach sunrise » Fri Aug 21, 2020 11:45 pm

One other mention: I lined up IV vitamin C infusions to help with wound healing, inflammation control, infection preventative. It was a very good decision for me. I still take it weekly.
8/19 RC CEA 86 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

PaulSmarinecorps
Posts: 17
Joined: Wed Nov 06, 2019 8:51 pm
Facebook Username: Paul Smith

Re: APR surgery scheduled. Need your advice

Postby PaulSmarinecorps » Sun Aug 23, 2020 9:06 pm

I just had this surgery March 19th of this year. This was by far the worst one for myself, not to scare you but I’ve had LAR surgery before this which was much easier healing wise. I spent 7 days in the hospital after surgery alone thanks to covid! The pain was very intense for the first week but bearable and when I came home I was just on a weeks worth of pill form pain killers which did the trick! For me was just the overall time it took to have the backside would to heal. My wife would pack them twice a day for the first couple weeks which just sucked! Then I developed a horrible blood infection and sepsis which put me back in the hospital for 9 days which the surgery team cut my wound back open because it was healing from the outside in and the put me on a wound vac and 24 hour IV antibiotics for 3 weeks when I got home with a nurse coming to my house once a week to change it and check my wound status. I healed just after that so about a total of at least 2 months of healing! Which for me an active younger guy was horrible. I then proceeded to get another blood infection caused by my port and spent another 5 days in the hospital and had my port removed! But here it is august and I’m completely healed physically now it’s just the mental battle with this stims and bag! Thanks for listening Paul!
37 yo male diagnosed 5-14-19
Adenacarcinoma
Stage 4 with liver met
6 rounds folfox
9-19 liver abl
9-19 lar surgery
10-19 positive margins
6 more rounds folfox

Lee
Posts: 6128
Joined: Sun Apr 16, 2006 4:09 pm

Re: APR surgery scheduled. Need your advice

Postby Lee » Mon Aug 24, 2020 2:52 pm

I had this surgery 16 yrs ago and have a Barbie Butt today. My decision. Radiation destroyed most of my rectal muscles and I was tied to toilet for hours anytime I ate.

I was hook up to a pain medicine pump. For me, presciption pain med don't do a lot of good for me. They make me sleepy, but I'm still in a lot pain. To me Motrin is the wonder drug. I was told years ago, the first 200 mg control pain and swelling. The next 200 (2 pills at same time) controls swelling only. Dr.(s) will prescribe 600 mg Motrin, my son got it once for a very bad accident. You get the swelling under control, your pain is A LOT less. While in the hospital, pain pump, but once home, surgeon and I agreed, Motrin.

Best advice, walk, walk, walk, those hospital halls. It really does help in the healing process. It's hard at first, but it pays off early on. I had my surgery on a Monday morning, and got to go home late Friday afternoon. Walking is probably the biggest reason why. I was told to expect an 7-10 hospital stay because I was going to be cut open.

Get a wrap around robe. Easier to get in and out of especially when hooked up to IV's. I was told I would not be allowed a 2nd gown to wear because it makes it harder to get in and out of hospital bed.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!


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