Recal cancer surgery options - quality of life and cure goals

steve g

steve g said:

Computer illerate
Sorry Steve, haven't any idea how to receive PM's on here..Steve

Illiterate
That's me along with slow fingers, must be the weather

Jaylo969

steve g said:

Computer illerate
Sorry Steve, haven't any idea how to receive PM's on here..Steve

How to receive PM's
Steve....

1. Go to top of page and click where it says Click here to create or update your member "About Me" page

2. go to edit & click. Scroll down and you will see Private Message Settings. Click the appropriate box(es) and make sure you click on "Save" at the very bottom.

Hope this helps.

-Pat

steve g

Jaylo969 said:

How to receive PM's
Steve....

1. Go to top of page and click where it says Click here to create or update your member "About Me" page

2. go to edit & click. Scroll down and you will see Private Message Settings. Click the appropriate box(es) and make sure you click on "Save" at the very bottom.

Hope this helps.

-Pat

Thanks Pat
I just tried it Steve

RickMurtagh

John23 said:

Rick -


Re:
"I have had pretty significant diarrhea for two full weeks now..."

Unless your doing chemo, radiation, or taking antibiotics, with an Ileo it's
usually not "diarrhea", but generally due to what's called a "dumping syndrome".

Once the re-connection is made and the ileocecal valve is restored,
the digestive process may be restored, and the stuff flowing through
will be in a more "timely fashion".

I have an "end type" ileostomy, so a reversal will take the same
major operation to reconnect it all. With a "loop type", the operation
is simple, and recovery time fairly fast.... and there's less chance of
having damage done to the prostrate, etc. from the surgery.

I wish you guys the best of luck with the reversal.... I wish I had
the courage to get mine done.

maybe
John,
I have spent days now thinking about what you said; "I wish I had the courage to get mine done." From what I have seen on this forum, you have plenty of courage, probably even more than I. Perhaps what is lacking is faith, in either your surgeon or yourself.

I am fully confident that given a reversal, you would make whatever choices where required to have a good outcome, or more specifically a good output. If it is the surgeon, get a new one, but I doubt that is the case or I believe you would have already done so.

Fighting this disease is not easy, but seeing the potential benefits of the takedown verses the ileo, I've chosen the takedown. I realize the benefits are only potential. I can live with that and even the possibility that I might have to go back to an ileo, perhaps permanently. I am glad I came to the place where I could live with my ileo prior to takedown. Sounds like you are at that place too.

If/when you come to the place you desire a takedown, you'll have plenty of support from this and other forums you frequent I am sure.

very best wishes,

Rick

Shayenne

dschreffler said:

I'll be seeing Dr Weisser on
I'll be seeing Dr Weisser on the 27th. I've heard a lot of praise for Dr. Paty, and all the staff at MSK. One of my chemo pals had his surgery done by Paty. He is in similar situation as I am, just a bit older and looking forward to reversal.

Good luck with your scans!

Hi DS!
Welcome to our lovely family! You sure do have a hard decision to make, and definitely one that may not be good for some people who wouldn't be able to handle a colonostomy mentally. I had a colonostomy done not by choice, it's great you have that choice, but you must look down the road as well, where what if something happens and you need it done anyway? how does one actually prepare themselves for one? I didn't have time to think of it, as mine was done when I admitted myself into the ER room, and my colon was perforated, my bowels were literally leaking into my belly, and this was a procedure that really saved my life. I could have died that night, had I not gone to the hospital. It was a 5 or 6 hour procedure, where they even used 11 liters of sea salt water to wash me out with.

I had about 20 minutes to think what was going to happen to me, when the surgeon came to me to tell me what needed to be done, and how it would be done, it's a temporary colonostomy, but to me, it will permanent, because there is no way I'm going through a reversal, I'm too scared also. I actually had alot alot of pain killers going through my IV, so I was a lil loopy, but I just told him, I had 4 children, and not ready to go, and to do what they had to do to keep me alive. And they said they wouldn't let me go anywhere, and that's when we rolled into surgery.

I woke up and was in ICU for a couple days, the Chief Surgeon who was there that night was the one who performed my operation, and he even spent time with my hubby talking about what he did, and how he was even able to get the thick mass in my colon out, and that I did really well, he was very positive, and I thank him for even calming my hubby, who was up and didn't go home for 2 days, till I woke up and was lucid enough to speak, but I have no regrets about it.

Sure it's not the prettiest thing to look at, but who else is going to know I have one unless my shirt too tight and I what looks like a big balloon there lol...and also I was always afraid of what if it busts in public? well, I just carry a bag anyway of supplies with me if it does bust anywhere, I am prepared, if someone saw me or saw it leaking, well, I guess I don't care enough if they're going to stand there and gossip, since I'm not into that sort of scene, I'd rather help the person with their problem, then look at them. I only care about people who actually care about me really, and that's including the lovely folks here.

Sex??? haha! I tell ya, it's painful for me, and I don't know why, but I feel like a virgin all over again when I have sex, like the hymen grew back over, and it stings then bleeds again, my hubby doesn't mind much, he's such a loving person, he's just so happy I'm still here. there could be worse then worrying about me pooping a different way from others, and actually, I find it more convenient! no more hemorrhoids, no more trying to stop and finding a bathroom when I have diarhea and holding it in, no more constipation, there are some pluses to go with the negatives. I wear oversized shirts to hide the bag, my bikini days are long over, I don't swim anymore, but that's my personal choice, there are people who do, I just am afraid of losing the bag in the water, and things getting abit unsanitary. But, I just wanted to let you know, it's ok to have a bag! I can think of worse things, and people going through worse things. I'm not disabled, it may limit me alittle, but not too much, and during sex, I wear a shirt or put a towel over me. I'm just pleased my hubby still wants me after all this crap I put him through. You seem like a strong man, and I think even a bag wouldn't stop you from doing what you want. It takes time to adjust, but they will show you in the hospital how to change it and after awhile, it'll become a "part" of you I've named mine Nagging Nelly, because the noises she makes sometimes reminds me of my mom nagging at me, a warning, when you fart, the stoma may make some noises in public, which my hubby have come to terms with if it's in public, I just point to him and say "He did it" LOL!....Life is short, you don't want years of recovering, you want to live in the now...for me personally, it really isn't that bad, in fact, it puts a little humor back in my life

Hugsss!
~Donna

dschreffler

Shayenne said:

Hi DS!
Welcome to our lovely family! You sure do have a hard decision to make, and definitely one that may not be good for some people who wouldn't be able to handle a colonostomy mentally. I had a colonostomy done not by choice, it's great you have that choice, but you must look down the road as well, where what if something happens and you need it done anyway? how does one actually prepare themselves for one? I didn't have time to think of it, as mine was done when I admitted myself into the ER room, and my colon was perforated, my bowels were literally leaking into my belly, and this was a procedure that really saved my life. I could have died that night, had I not gone to the hospital. It was a 5 or 6 hour procedure, where they even used 11 liters of sea salt water to wash me out with.

I had about 20 minutes to think what was going to happen to me, when the surgeon came to me to tell me what needed to be done, and how it would be done, it's a temporary colonostomy, but to me, it will permanent, because there is no way I'm going through a reversal, I'm too scared also. I actually had alot alot of pain killers going through my IV, so I was a lil loopy, but I just told him, I had 4 children, and not ready to go, and to do what they had to do to keep me alive. And they said they wouldn't let me go anywhere, and that's when we rolled into surgery.

I woke up and was in ICU for a couple days, the Chief Surgeon who was there that night was the one who performed my operation, and he even spent time with my hubby talking about what he did, and how he was even able to get the thick mass in my colon out, and that I did really well, he was very positive, and I thank him for even calming my hubby, who was up and didn't go home for 2 days, till I woke up and was lucid enough to speak, but I have no regrets about it.

Sure it's not the prettiest thing to look at, but who else is going to know I have one unless my shirt too tight and I what looks like a big balloon there lol...and also I was always afraid of what if it busts in public? well, I just carry a bag anyway of supplies with me if it does bust anywhere, I am prepared, if someone saw me or saw it leaking, well, I guess I don't care enough if they're going to stand there and gossip, since I'm not into that sort of scene, I'd rather help the person with their problem, then look at them. I only care about people who actually care about me really, and that's including the lovely folks here.

Sex??? haha! I tell ya, it's painful for me, and I don't know why, but I feel like a virgin all over again when I have sex, like the hymen grew back over, and it stings then bleeds again, my hubby doesn't mind much, he's such a loving person, he's just so happy I'm still here. there could be worse then worrying about me pooping a different way from others, and actually, I find it more convenient! no more hemorrhoids, no more trying to stop and finding a bathroom when I have diarhea and holding it in, no more constipation, there are some pluses to go with the negatives. I wear oversized shirts to hide the bag, my bikini days are long over, I don't swim anymore, but that's my personal choice, there are people who do, I just am afraid of losing the bag in the water, and things getting abit unsanitary. But, I just wanted to let you know, it's ok to have a bag! I can think of worse things, and people going through worse things. I'm not disabled, it may limit me alittle, but not too much, and during sex, I wear a shirt or put a towel over me. I'm just pleased my hubby still wants me after all this crap I put him through. You seem like a strong man, and I think even a bag wouldn't stop you from doing what you want. It takes time to adjust, but they will show you in the hospital how to change it and after awhile, it'll become a "part" of you I've named mine Nagging Nelly, because the noises she makes sometimes reminds me of my mom nagging at me, a warning, when you fart, the stoma may make some noises in public, which my hubby have come to terms with if it's in public, I just point to him and say "He did it" LOL!....Life is short, you don't want years of recovering, you want to live in the now...for me personally, it really isn't that bad, in fact, it puts a little humor back in my life

Hugsss!
~Donna

Fantastic reply - thank you
Fantastic reply - thank you for sharing!
I have a friend whom has had "the bag" for at least 15 years and he is only 40 now. He has been inspirational to me even before my diagnosis. It has never stopped him. When I was diagnosed and after discussions with the Dr at Hopkin's I pretty much had in my head that I would have, by choice, a permanent colostomy. It seems to be the less risky with fewer complications in the long run. I'm a control freak, enjoy an active life professionally and outdoors. To go thru an additional surgery and lessen margins to remove cancer, potential for added complications in not have control over feces, chronic rectal pain, itch, potential nerve damage that would impact urine and sex due to take-down surgery needs a compelling reason for me not to go with the bag. I want my best days to be doing something besides recovering from surgeries, running to the bathroom and thinking about my **** because its leaking or hurting ;-).

That said, I want to be sure this initial bias, fear and overly conservative approach I have does not make me blind to possibilities and rule out the of not having the bag and its associated maintenance concerns.

I have an appt with Sloan next week to help break the tie and make a decision.

I'm happy and lucky to be in a position to have this discussion ahead of my surgery.

This is a great board with great folk and thank all for the candidness.

dschreffler

RickMurtagh said:

tumors
One of my tumors was about three inches from the anus. Radiation and chemo made the tumor small enough for a jpouch to be an option. The problem with messing around so low in the abdomen is all the nerves for all kinds of stuff are there. The more they mess with things down there the more likely you will be to be part of the approximately %5 of men who end up with permanent erectile dysfunction. But as Craig said, better to be alive.

I have an ileostomy and I am scheduled for my takedown next Tuesday. I'll let you know a month or two after that if it was worth it all. I have just gotten used to my ileo in the last month or so. If I had to I could see having one for life and it would not bother me overly much. Prior to the last month or so I could only wait, hope and pray for my takedown date to arrive.

One of the things that weighs on my mind is how well I adjust to the takedown. I have had pretty significant diarrhea for two full weeks now and I can't even bare to think what that will mean post takedown. Now it means I empty and change my bag more often. Later it means...I prefer not to even go there.

I think it is all about how well you are with accepting the consequences of the decisions you make now. In fact I think how you manage those consequences is what really determines what your quality of life will really be, not the decisions, the consequences or even the results of treatment.

best wishes

How you making out?
Just wondering how you are doing. I hope the surgery went well!

dschreffler

Choice made! Surgery in June
Hi All,

Just wanted to updated and share decision on this forum as I've been posting most of my updates on this matter on colonclub forum.

Choosing LAR + TME. After having discussed with 3 doctors at 3 hospitals, this seems to be the general consensus from all - although all 3 had different recommendations as their first response.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=11804&start=45


Surgery in mid June!

dschreffler

dschreffler said:

Choice made! Surgery in June
Hi All,

Just wanted to updated and share decision on this forum as I've been posting most of my updates on this matter on colonclub forum.

Choosing LAR + TME. After having discussed with 3 doctors at 3 hospitals, this seems to be the general consensus from all - although all 3 had different recommendations as their first response.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=11804&start=45


Surgery in mid June!

New info, new decision
Life has a funny way of telling you you should do something else..
Serendipity - TAE chosen over APR and LAR - scheduling miscues and insurance hassles allowed me to continue my research and meeting again with local surgeon and oncologists; read a couple more studies, and got some more first hand accounts from folk.

This my choice, so other folk's mileage may vary ;-)

Recap on the options:
1) Transanal excision (TAE), do a pathology, and if no signs of cancer monitor closely for years (key!), else perform more radical surgery. Really attractive as TAE is outpaient, with low surgical risk or complications. Not standard of care for T3, but studies starting to show outcomes in line with other options, and chemo before/after the key. If fails, then LAR no longer an option in my case.
2) APR + TME - the standard for removal of cancerous tissue in colon. Enables larger margins for tissue removal. Very tempting given less surgeries, a little shorter recovery time, and controlled incontinece (into a bag) better then in your pants should LAR not work out. Downside is bag maintence for life.
3) LAR + TME - emerging standard as recent studies show onocological results similar to APR. Depending upon the patient, this provides a mean to remove cancer and not have to have a colostomy. Need to weigh the possibility of fecal incontinence and a longer recovery time - 6-18 months (or more). Some possibility of never being continent and need to do APR.

And my choice is: TAE + more chemo
This approach was heavily favored by both my local surgeon and oncologist given my reponse to the chemo and radiation so far, as well as my youthful age of 45.
1) cancer removal - Onocological results in line with other options provided post surgery chemo and with proper surveillance (scope/ultra sound every 3 months for 2 years. CT every 6 months.)
2) quality of life - Expecting little impact on fecal control or impact to sexual/urinary function short term and more importantly long term..
3) Balance surgery and recovery time vs benefit of surgery. The least recovery time due to surgeries or any option.

Surgery is scheduled for 6/15/10.

See this thread for more: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=11804

greybeard

RickMurtagh said:

output
I have had extremely good output for months - you could make roses if you put on a pastry bag tip. Then I had my CT scan and liquid for three days in a row (I expected that because of the barium contrast) and it has not recovered yet. My output has been so good for so long, I have been thinking of naming them.

LOL
Thx Rick your sense of humor is priceless and I always enjoy the way you cut to the chase so to speak. I have always been a fan of the short, direct, and funny approach, might have something to do with me being 5' 9" (in heels of course) and rather low on the cerebral ladder.
Chris

rchauffe

dschreffler said:

New info, new decision
Life has a funny way of telling you you should do something else..
Serendipity - TAE chosen over APR and LAR - scheduling miscues and insurance hassles allowed me to continue my research and meeting again with local surgeon and oncologists; read a couple more studies, and got some more first hand accounts from folk.

This my choice, so other folk's mileage may vary ;-)

Recap on the options:
1) Transanal excision (TAE), do a pathology, and if no signs of cancer monitor closely for years (key!), else perform more radical surgery. Really attractive as TAE is outpaient, with low surgical risk or complications. Not standard of care for T3, but studies starting to show outcomes in line with other options, and chemo before/after the key. If fails, then LAR no longer an option in my case.
2) APR + TME - the standard for removal of cancerous tissue in colon. Enables larger margins for tissue removal. Very tempting given less surgeries, a little shorter recovery time, and controlled incontinece (into a bag) better then in your pants should LAR not work out. Downside is bag maintence for life.
3) LAR + TME - emerging standard as recent studies show onocological results similar to APR. Depending upon the patient, this provides a mean to remove cancer and not have to have a colostomy. Need to weigh the possibility of fecal incontinence and a longer recovery time - 6-18 months (or more). Some possibility of never being continent and need to do APR.

And my choice is: TAE + more chemo
This approach was heavily favored by both my local surgeon and oncologist given my reponse to the chemo and radiation so far, as well as my youthful age of 45.
1) cancer removal - Onocological results in line with other options provided post surgery chemo and with proper surveillance (scope/ultra sound every 3 months for 2 years. CT every 6 months.)
2) quality of life - Expecting little impact on fecal control or impact to sexual/urinary function short term and more importantly long term..
3) Balance surgery and recovery time vs benefit of surgery. The least recovery time due to surgeries or any option.

Surgery is scheduled for 6/15/10.

See this thread for more: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=11804

Hi dschreffler,

I have been reading your past posts and find that I have a very similar and almost identical case to yours and have been dealing with the same issues. I also have been wondering why they can't just do a TAE on me. I currently have surgery scheduled for an LAR, but something just does not seem right about it and I'm desperately looking for all of the factual data I can find. I tried to send a private message to you, but it appears that I can't. I would very much appreciate it if you would contact me directly at rchauffe@centurytel.net.

Thanks,
Ron