Rectal Cancer Surgery?
I was told throughout the diagnostic phase that a colostomy would be necessary and likely be permanent. I want to avoid this. I am looking for new surgical techniques to best my chances.
Any input is greatly appreciated. I have begun my internet research and will be having a pre-surgery consultation in the coming weeks.
Thanks in advance for any advise or information.
Mike
Comments
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Mike
I had 25 rad/chemo treatments then 5 weeks later (giving the radiation time to do all it could do) it was time for surgery. I was told that there was a 30% chance of saving my anus if the rad/chemo shrank the tumor enough to get clear margins. It didn't happen and to get clear margins he said I would have to have a permanent colostomy. It pretty much depends on how close it is to your anus. VickiCO thought she would have to have a bag but soon found after surgery that she didn't . You might talk with her and maybe consider a change in surgery locale. She is however having difficulty in her bowel operation but she was very happy that there was no ostomy when she woke up.
In all sincerity, I have no problem at all with mine and other than the mechanics of it it does not pose a problem with me. I have become use to it and it is no more problem than the other way and irt seems as though there is less trouble with the ostomy than trying to recoup with a simple resection. Your choice but thats my take on it.....0 -
Hi Mike
Buzzard is right...I had the best surgeon known - Dr Nelson Mozia in Wheatridge (Denver) CO. If anyone can help you, he can. I was told I had a 90% chance of ostomy. Two other surgeons told me they wouldn't even try to save function. I told Dr Mozia that I wanted quality of life, so if I had an ostomy to get that, I was OK. He was able to resect me and not do the ostomy. I'll be honest...I am struggling to regain control, but they did tell me it could be 3 or 4 months before things are more regular. Some days I wish we had just gone ahead with the ostomy. I am starting to see hope now, after 3 weeks. I know that I will eventually get there. I am just so damn impatient!
If you are dead set against an ostomy, I seriously suggest you consult with Dr Mozia. he is also a very kind man. That was important to me. And his staff, particularly Jane & Kelly, are the best!
Good Luck! Vicki0 -
Mike
I truely believe you
Mike
I truely believe you need to get a second and maybe even a third opinion.
I think a major cancer center is also a big factor in finding the best colorectal surgeons.
My husbands tumor was very low in the rectal area, his local doctors told him most likely he would need a colostomy. We went to Dana Farber in Boston for a second opinion and the surgeon
said he would be able to do the surgeryand no colostomy was needed. My husband is doing great today after 3 years. Please do your homework, we also had a friend with colon cancer and the local surgeon told him
after surgery he would have a permanet colostomy. His friends all told him to go to Boston for a second opinion. It turned out he never needed the colostomy and was fine.
Good Luck
Val0 -
Hi Mike: I'm so sorry
Hi Mike: I'm so sorry to hear of your cancer and the possibility of a colostomy. I seem to be going through pretty much what you are going through.
I found out on December 1 that I have cancer and would have surgery to remove it. Went to the surgeon on December 11 and told I would be having a permanent colostomy - a WHAT!!! My tumor is very low in the rectum. I must be really naive because a colostomy never ever entered my mind. I was told surgery - I assumed just that and nothing more. I was in a state of shock. Not only the big "C" but another big "C". I started crying right then and there.
The next day I started looking on the ostomy boards and found a wealth of information. I have attended one meeting already and another one will be on Sunday.
I just finished my 28 sessions of radiation/chemo on February 13. I previously asked my radiation oncologist for a surgeon he would recommend and I felt very confident with him (not that the first one was bad), but this one gave me a 50/50 chance of it not being permanent but that is much better odds. Plus he has been a surgeon for 21 years vs. less than 10.
Get a second opinion, or third if you want. Sometimes we are searching for the answer we want to have, but it would not be in the best interest of yourself. I am going to leave that up to the doctor as I told him first and foremost, I want to be cancer free, no matter how I have to get there.
I have only told two of my eight kids. The youngest who is in the army far away and is going to go to nursing school, and the other who is an ultrasound technician who would know that I would possibly be having one with that type of surgery anyway. I'm still not sure when and if I will tell my other kids. Maybe they will be as naive as me and not even think about it, but I won't be embarrassed if I have to have one. The ostomy message boards have been such a comfort and just lets you know that it is just getting used to another way of "normal."
Let us know how the search is going.
Kim0 -
VickiCoVickiCO said:Hi Mike
Buzzard is right...I had the best surgeon known - Dr Nelson Mozia in Wheatridge (Denver) CO. If anyone can help you, he can. I was told I had a 90% chance of ostomy. Two other surgeons told me they wouldn't even try to save function. I told Dr Mozia that I wanted quality of life, so if I had an ostomy to get that, I was OK. He was able to resect me and not do the ostomy. I'll be honest...I am struggling to regain control, but they did tell me it could be 3 or 4 months before things are more regular. Some days I wish we had just gone ahead with the ostomy. I am starting to see hope now, after 3 weeks. I know that I will eventually get there. I am just so damn impatient!
If you are dead set against an ostomy, I seriously suggest you consult with Dr Mozia. he is also a very kind man. That was important to me. And his staff, particularly Jane & Kelly, are the best!
Good Luck! Vicki
Quick question for Vicki - where was your tumor located? Mine apparently has embedded in the muscle so they say to be safe a colostomy is what I will need. I have had 2 surgeons say that now. Just wondering if yours was embedded deep in the tissue?0 -
sphincter saving surgery
Hi Mike,
There are several colorectal surgeons who specialize in sphincter saving surgery where a permanent colostomy would not be neccessary. I'm not sure where you live, so not sure where to recommend, but I know there are many out there at major cancer centers. The only one I know of personally is at Moores Cancer Center/UCSD in San Diego just because that's closest to me. Check to see if they use the Da Vinci robotic arm during surgery or something equivalent, which is more precise and has a higher incidence of not needing permanent colostomies.
Best wishes to you-
Lisa0 -
VickiCOlmliess said:VickiCo
Quick question for Vicki - where was your tumor located? Mine apparently has embedded in the muscle so they say to be safe a colostomy is what I will need. I have had 2 surgeons say that now. Just wondering if yours was embedded deep in the tissue?
My tumor was in the rectal wall, but missed the sphincter muscle by a couple of cm's. That is why he could resect. My 28 radiations and 6 1/2 weeks of chemo shrunk it and gave him clear margins.0 -
Out of the 'lurk'.....
I had a 2" tumor in the first rectal fold. I was given less than a 50% chance of saving my spinchter with my first surgeon. My second opinion, a world-known surgeon who works out of UC Irvine Medical center (Dr. Michael Stamos), said I had less than a 3% chance of even having a temporary ostomy. I came out of surgery missing my rectum, sig colon, and uterus. BUT, I had a new rectum made from descending colon, and was using it that night (gas...lol).
I am now 4 years post surgery in May. I would put my plumbing up against anyone's.
Keep searching...these miracle workers do exist!
Kathi0 -
Good luck!
I wish you all the best in your search for sphincter-saving surgery, and that the surgery is successful. That is what we all hope for (including our surgeons). That was the goal of my surgeon but in the end I did have to have APR (abdominal perineal resection) and a permanent colostomy (my tumour was VERY low). I hope this isn't what happens to you but I just want to say that if it is, it will be OK. A permanent colostomy is not what anyone hopes for, but it doesn't have to be so bad. I lead a very active life and do/wear anything I want (almost -- no bikinis - ha ha I'm 50 and woudn't anyway). Swimming, hiking, jacuzzi, travelling. It can be fine.
All the best to you
Tara0 -
TarataraHK said:Good luck!
I wish you all the best in your search for sphincter-saving surgery, and that the surgery is successful. That is what we all hope for (including our surgeons). That was the goal of my surgeon but in the end I did have to have APR (abdominal perineal resection) and a permanent colostomy (my tumour was VERY low). I hope this isn't what happens to you but I just want to say that if it is, it will be OK. A permanent colostomy is not what anyone hopes for, but it doesn't have to be so bad. I lead a very active life and do/wear anything I want (almost -- no bikinis - ha ha I'm 50 and woudn't anyway). Swimming, hiking, jacuzzi, travelling. It can be fine.
All the best to you
Tara
Thanks for the encouraging post. My tumor is very low too and it is not a matter if the surgeon is apt to doing without a colostomy it is whether he can because there might not be enough to attach the colon too. I will find out when I wake up from surgery on the 26th of March. You're post was encouraging for us 50 year olds
Kim0 -
wishing for the bestAnnabelle41415 said:Tara
Thanks for the encouraging post. My tumor is very low too and it is not a matter if the surgeon is apt to doing without a colostomy it is whether he can because there might not be enough to attach the colon too. I will find out when I wake up from surgery on the 26th of March. You're post was encouraging for us 50 year olds
Kim
Wishing for the best for you (and all others facing this). If it does turn out you end up with a permanent colostomy (and of course I hope you don't) please do feel free to contact me anytime. (And of course there are many others on this board with a wonderful wealth of experience). It is an adjustment (!) but I can honestly say not a big deal now -- . Like the song says 'Everything's gonna be alright".
Tara0 -
I am having the same surgery March 10 - mine is very low also and in the muscle. In all honesty, it still hurts to have a bowel movement that I think I am ready for the surgery. And I want the cancer out! I am just curious about recovery time. How long were you in the hospital? I know everyone is different - I am just trying to get an idea. And what was it like at home? Pain for weeks or did you manage to get around pretty quickly.taraHK said:Good luck!
I wish you all the best in your search for sphincter-saving surgery, and that the surgery is successful. That is what we all hope for (including our surgeons). That was the goal of my surgeon but in the end I did have to have APR (abdominal perineal resection) and a permanent colostomy (my tumour was VERY low). I hope this isn't what happens to you but I just want to say that if it is, it will be OK. A permanent colostomy is not what anyone hopes for, but it doesn't have to be so bad. I lead a very active life and do/wear anything I want (almost -- no bikinis - ha ha I'm 50 and woudn't anyway). Swimming, hiking, jacuzzi, travelling. It can be fine.
All the best to you
Tara
Thanks!0 -
strengthtootsie1 said:Hi, Mike
Hey, Mike.
My situation was different than yours, so I can't offer any advice. Just want to say that I hope your surgery goes well, and that you are ultimately comfortable with however it goes.
*hugs*
Gail
I have colon cancer and can only send support, I am thinking of you and wish you well, we started this fight at about the same time and I often wonder how your doing. Good luck and strength.
Mike0 -
More InfoCarolyn2 said:Colostomy Options
There is another procedure, the Barnett Continent Internal Reservoir (BCIR) which is an inside pouch. Check it out on the internet for a local location.
So there is all sorts of advice flowing around the internet.
Here is what I found out going through the same angst that you are going through. I did not want a bag...at all..even though I knew it meant life over death...
My tumor was found to be about 8CM from the exit on its outer margin pre surgery. After multiple surgical consults and a lot of research, what I found was that anything lower than 6cm to the exit is almost impossible to maintain bowel function and to get clean margins. So with a lot of prayer and acceptance of what might be, I went into surgery with only hopes of a no bag outcome. The unknowns were clean margin and scar tissue from radiation - which are both big factors.
Luckily the surgeon was able to work as planned. and with rectum removed and my colon making a nice new "J Pouch", there was no permanent bag. Only a temp ileostomy to allow for healing time. the new j pouch has returned relatively normal function.
hope this helps.0 -
And my storyfunnyguy said:More Info
So there is all sorts of advice flowing around the internet.
Here is what I found out going through the same angst that you are going through. I did not want a bag...at all..even though I knew it meant life over death...
My tumor was found to be about 8CM from the exit on its outer margin pre surgery. After multiple surgical consults and a lot of research, what I found was that anything lower than 6cm to the exit is almost impossible to maintain bowel function and to get clean margins. So with a lot of prayer and acceptance of what might be, I went into surgery with only hopes of a no bag outcome. The unknowns were clean margin and scar tissue from radiation - which are both big factors.
Luckily the surgeon was able to work as planned. and with rectum removed and my colon making a nice new "J Pouch", there was no permanent bag. Only a temp ileostomy to allow for healing time. the new j pouch has returned relatively normal function.
hope this helps.
My tumor was 4cm or maybe slightly less inside - I had a complete resection, clear margins and am regaining total bowel function. It IS possible...statistics be damned!
Vicki0
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