APR surgery one week away for hubby-HELP!

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mamalea333
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Joined: Mon May 14, 2012 2:30 pm

APR surgery one week away for hubby-HELP!

Postby mamalea333 » Wed May 16, 2012 3:40 pm

Hi everyone, I am a newbie here, but I' ve been reading posts for a while. My wonderful, 47 year old hubby, was DX w/ stage 3 rectal cancer in Jan.2012. He underwent 6 weeks of chemo/radiation 5fu pump, & 28 rad. treatments & did exceedingly well thru this. He had the usual skin irritations from rad.& handled it well. he will have APR surgery on may23. He tested negative for Lynch Syndrome. He is young, thin and in excellent shape, except for the dog-gone tumor. We have done our research on the surgery & the perm.colostomy that comes with it. We have an "ace" of a surgeon, who is the known in our parts as "THE" doctor and also the doctor that doctors would have do their surgery if necessary. We have had exc. onc's & a wonderful ostomy nurse, who will mark the spot 2 days prior to surg. Also, our Dr. is a man of great faith, as we are, and we know God has assigned him to our case. No doubt about it...Now...I just need to hear your stories, words of encouragement, or anything you can offer regarding the surgery. We are ready to take it on. Yesterday, our surgeon found that he could not do an acurate exam in his office, without hurting my hubby, so he will do a colonscope the day prior to surgery, so he will know exactly what he is dealing with before he goes in (using robotics and laproscopy and normal inscision below navel). this means 2 days of liquid diet before surgery, instead of one :(..any way. My husbands tumor was very low, so he will have rectum & anus removed and sphyncter (sp?) . He is not afraid..but I am..so any words would be appreciated. God Bless you all in advance and I pray for you all each day.
Mamalea

sheilahincy
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Joined: Sat Mar 10, 2012 8:59 pm
Facebook Username: Sheila

Re: APR surgery one week away for hubby-HELP!

Postby sheilahincy » Wed May 16, 2012 9:13 pm

Just wanted to say that my prayers and thoughts will be with you both. My husband colon cancer was very low in his colon. it was successful removed but it had spread to his lung. liver, and a rib hes stage 4. He has a very positive attitude and believes God will help us through this crises.


May God keep you both

Sheila
12-20-2011 diag Stg 4 Colon with one spot on both lungs
12-20-2011 Surgery to remove cancer from colon
02-1-2012 Started Chemo witva/Ox/5-Fl
03-26-2012 new Ct liver leasons
05-14-2012 rib leasons found
05-24-2012 folfri/ava

jeanette57
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Joined: Sun Mar 04, 2012 11:40 am

Re: APR surgery one week away for hubby-HELP!

Postby jeanette57 » Wed May 16, 2012 10:04 pm

Let me know how it goes- mine is May 29th- I went to Ostomy meeting-wore fake bag to see best placement- bring street cloths so nurse has best chance. I watched the video but was to tramatized to watch all of the APRs surgery-I was told to eat light 4 days then c lear 3 days and 2 fleets before- said clean so super important to prevent infections- cleaner than the coloscope.

God bless!
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

misfit80
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Joined: Sun Jan 22, 2012 10:44 am

Re: APR surgery one week away for hubby-HELP!

Postby misfit80 » Thu May 17, 2012 7:24 am

I had my APR about 6 weeks ago. I did 28 rad treatments with xeloda. I held it together pretty well thru the radiation, i guess. I had the weeping buns and that. To be honest, the worst thing about radiation and after is the bowel movements. To prep for my APR I had to do the usual colon blow that you would do for a colonoscopy. My biggest piece of advice, prior to surgery, would be to stay hydrated. You think that wouldn't be so hard with all the water you have to drink with the colon blow, but I will tell you I was pretty dehydrated when I showed up for surgery. They actually had to get an ultrasound machine out to find a vein they could use for an IV.

My surgery went rather well. I didn't have a lot of radiation damage, I think partly because my rad/onc did basically a mini CT on me each day and did the best to target the radiation to a specific location. Regardless, my butt hurt for weeks. I heard the doc say that depending on the location (which I knew was low) that I would end up with an APR and colostomy. Somehow I missed that my butt cheeks were basically going to be sewn together. Sitting was uncomfortable. I felt and sometimes still feel like a cat who turns around two or three times analyzing where the seat is and how I want to sit in it. It will take a few weeks before sitting becomes less stressful. Driving again was the hardest for me just because of the way you have to sit.

As for the colostomy portion, it sounds like you have a solid ostomy nurse...something I didn't have. I had two great ostomy nurses who marked me, but that was all. They are going to show you how to change the bag in the hospital, but to be honest hospital stays are such a blur, especially for the patient. Your husband may have a few questions when he's there, but most likely the questions on caring and LIVING with a colostomy are going to come once you are at home. Get a good number for the ostomy nurse or schedule some type of outpatient visit or home care with them to discuss any questions or concerns you might have. It has only been 6 weeks for me and I'm still not comfortable with my colostomy yet, but I will get there.
DX Dec '11 @ 31
Rectal Cancer Stage III
6 weeks radiation with Xeloda FINISHED
APR April '12
Colostomy named Pita
Folfox started 14 May 2012

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RayGirl
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Location: Texas

Re: APR surgery one week away for hubby-HELP!

Postby RayGirl » Thu May 17, 2012 12:43 pm

Amazing how doctors never pre-warn about the Ken and Barbie butts. Going into surgery, a permanent colostomy was the most likely scenario and no one warned me. I ended up with a temp and adjusted to it rather quickly. Definitely schedule some at home nurse visits. Someone changing the bag at home feels different than in the hospital. Also as my stomach healed, stoma shranks, the geometry of the operation changed, so it is nice to have someone with experience help you figure out what product work now.

Good luck with surgery. You can search the forum for list of things that people found helpful to pack. slipper, robes, ipod, power strips, etc...
Stage III Rectal: T3, 3/21 Nodes
dxn:Feb-10
Radiation&Xeloda
7.5 hr surgery
12th FOLFOX Nov-10
Takedown:Jan-11

"Life is not about waiting for the storm to pass, it's about learning how to dance in the rain."

jeanette57
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Joined: Sun Mar 04, 2012 11:40 am

Re: APR surgery one week away for hubby-HELP!

Postby jeanette57 » Thu May 17, 2012 12:46 pm

thanks- I have enought pain sitting now- hum may request not all butt sewn up! thanks about driving!
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

robinkaye
Posts: 374
Joined: Fri Nov 11, 2011 10:03 am

Re: APR surgery one week away for hubby-HELP!

Postby robinkaye » Thu May 17, 2012 4:26 pm

How close is the tumor from the anal verge? My husbands's was 3 cm - the first surgeon (top doc in Chicago) said they had to remove the anus, rectum, and spinchter muscles as he couldn't get
clean margins. Went to another top doc and he said that he could do the surgery, remove the rectum only and reconnect. He is due for his reversal surgery this summer. All margins were clean...

As for dealing with an ostomy, you'll get used to it but the first few weeks can be a bit of a challenge until you get it all figured out. In my husbands case he had frequent leaking and needed to change
wafers often. Threw out all the extras (powder, paste, lotions) and just made sure his skin was dry (hair dryer) before placing the wafer. Now he changes every seven to nine days and hasn't had a leak since.
Husband has RC Stage IIIC
Chemorad 9/28-11/07
2 rounds FOLFOX to get rid of iliac LN
LAR Surgery 1/17 ileostomy
presacral abscess 2/1 - 3/27
FOLFOX began 4/5 - 6/15
another presacral abscess 6/30-8/10
Reversal 9/11
10/15 fistula with drain

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: APR surgery one week away for hubby-HELP!

Postby jeanette57 » Thu May 17, 2012 10:15 pm

thanks about the hair dryer tip! what is barbie butt? I seen it in posts but have not looked up yet-

today was able to hold off pain pills till almost 6 pm. but ouchie now. I am in a fear induced cleaning spree- my brother mentioned he thinks my house is containated with all the dead cells from chemo and radiation- I clean, but thinking to go out and buy a Shark steam cleaner-I noticed my family want to be on the patio- so have to figure out deep cleaning.

I am sooo nervous thinking about surgery.
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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Gaelen
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Re: APR surgery one week away for hubby-HELP!

Postby Gaelen » Thu May 17, 2012 11:36 pm

Jeanette, please stop making yourself crazy about cleaning. Your brother is incorrect (he's also a few other things, but I'm trying to use polite language.) I posted my cleaning and family management suggestions in your other thread, but for those who only read this one, your house is NOT contaminated, and nobody is at any risk from any dead skin cells you may have shed in the past, or will shed in the future.

The only things that can potentially contaminate anyone are your family's unfounded fears.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

jeanette57
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Joined: Sun Mar 04, 2012 11:40 am

Re: APR surgery one week away for hubby-HELP!

Postby jeanette57 » Fri May 18, 2012 12:42 am

Gaelan-
if this is posted twice it is the bug working on my computer??
Any way- you are a sweetie- thanks for the cleaning- will stick to natural cleaners-
I am so nervous about surgery- so doing a million things- SSI- paper work-getting rid of 4x-3x-2x outfits- I want to keep this weight loss and eaat better- no to fast greasy foods or no value foods/

thanks- how are you doing- hope you are doing it day by day! smile at fish for me!
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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CaliforniaBagMan
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Location: California

Re: APR surgery one week away for hubby-HELP!

Postby CaliforniaBagMan » Fri May 18, 2012 9:02 am

I had nearly the identical diagnosis, same location, and same treatments leading up to APR surgery. That all started mid-2007. The only difference is that the chemo and rad hit me HARD like a ton of bricks.

Now I am working into Year 5 since the experience and all is well. I do any activity I care to do other than lifting really heavy items.

My best advice is to recognize that there will be things, initially, that are much different once you get home from the hospital. Take the long term view that there IS a learning curve involved, and mistakes and accidents are part of the process of learning. After that reasonably short period, life settles into a routine which is just about as close to normal as it was before everything happened.
CT guided biopsy on mass - still NED !!!
CT scan finds new 2x3cm mass on 10/09
APR surgery 11/07; NED thereafter
Folfox/radiation 9/07-10/07
DX Stage III rectal cancer 7/07

Badass
Posts: 1171
Joined: Sun Jan 15, 2012 11:42 am

Re: APR surgery one week away for hubby-HELP!

Postby Badass » Fri May 18, 2012 9:29 am

Hi Mamalea,

Glad to hear the chemo/rad went smoothly. I hope you find my own experience with surgery encouraging. I had LAR two weeks ago for rectal cancer (similar to you husband's but my sphincters and a tiny bit of rectum were left in place and I have a temporary ileostomy). My surgery was robotic and laparoscopic. Here I am two weeks later, have been off pain meds-- including over the counter ones-- for days and am contemplating a three mile walk today. The worst complaint was incision itch this week but that seems to be lifting too.
I made sure to walk as much as my nurses would allow while I was in the hospital, stayed well hydrated (64 oz minimum daily) and made sure to get up and dressed everyday. The first five days were the worst in terms of pain but it was tolerable. I hope your husband as just as easy a time of it!

Jane
R.C. 12/23/11 at age 52 T3N0M0
3/1/12 completed Xeloda and radiation
5/4/12 LAR & Ileostomy
6/7/12-10/4/12 6 rounds Xelox
11/27/12 Reversal
7/13/13 1 liver met
8/13 Met resection /hai pump
4/14 Chemo completed (Irinotecan/5fu/fudr in pump)

Cured
Posts: 581
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: APR surgery one week away for hubby-HELP!

Postby Cured » Fri May 18, 2012 1:22 pm

Mamalea, You get used to the ostomy. I followed the directions which had me changing the seal part every 3 or 4 days; then I had no leaks. It is important to clean well, and in the case of a man with chest hair, to shave the area so the glue is sticking tight. Further, people with roll-over belly fat have can have a harder time than those without. I do not know how often this has been stated here, as we all want to be polite.

We have to trust the Surgeons, but it is clear that some are much more experienced and more expert than others. My surgeon has cried when he sees people who had others preform the surgeries resulting in permanent colostomies which could have been avoided. And it is too late to change. So I have no opinion on your husbands situation as I am not the MD. However, Better to lose the use of the butt than to lose your life.

Best of luck.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:32
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: APR surgery one week away for hubby-HELP!

Postby jeanette57 » Sat May 19, 2012 2:45 pm

Help- any ladies who had this- will I wake up or have to walk with a cather/bladder in??
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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Gaelen
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Re: APR surgery one week away for hubby-HELP!

Postby Gaelen » Sat May 19, 2012 2:54 pm

Likely yes - but it will probably only be in for a couple of days.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment


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