CSN Login
Members Online: 19

partial vs. total removal of rectum?

otis2012
Posts: 4
Joined: Aug 2012

I was diagnosed with rectal cancer in early July. I had a malignant polyp removed and the pathology report indicated that the cells are poorly differentiated. The subsequent PETCT and ultrasound showed no further traces of the cancer. I have met with two surgeons. One wants to remove my entire rectum and do a J-Pouch. The other thinks the cancer site is far enough up to do a partial removal so that I could rely on the remaining portion of the rectum to do the work of the whole. Anyone have any thoughts on this? Of course I'd prefer the partial removal, but I can't understand why the first surgeon didn't offer to do the same.

Lovekitties's picture
Lovekitties
Posts: 2934
Joined: Jan 2010

It is good that you got a second opinion.

Was your cancer found by a colonoscopy and the polyp removed at that time? Did they tell you what type of cancer it was?

It sounds to me as if the polyp was too large to remove since both doctors feel surgery is necessary.

If both surgeons are of equal reputation and experience, I would go back to the first and ask why he did not recommend the J-Pouch.

Wishing you the best as you make your determination as to best course of action.

Marie who loves kitties

John23
Posts: 1832
Joined: Jan 2007

You might want to ask the same question here: UOAA

The United Ostomy Association's forum is like this one, and you'll
find people there that have had to make decisions like the one
you're trying to make.

Hoping for your better health.

John

Coppercent
Posts: 142
Joined: Jan 2012

I would go back and ask both their reasoning of why they are thinking the way they are thinking. Or maybe get a third opinion. I do know some surgeons like to remove a larger area to ensure they get all of the remaining cancer cells if any. That may be the reason. Good luck on your decision. The decision you make will be the correct one for you.

RobinKaye
Posts: 93
Joined: Nov 2011

My husbands first surgeon informed him after chemorad that he would be removing everything and he would have a permanent colostomy. He didn't do an exam, just told us this was the way to go.
After a week or so we figured a second opinion was warranted. We found another surgeon at a different hospital - found out that the first surgeon trained under him so we expected to hear the same thing from him.

The second surgeon examined my husband, looked at all the scans and said he could do a LAR and save the spinchter. His tumor was a T3, 3cm from the anal verge. We went with the new surgeon, he removed the tumor and got clean margins. Reversal is next week.

During the first visit we asked how the other surgeon could arrive so easily at his decision for complete removal. The surgeon basically said he was lazy. He did tell us that while he was in there he would make the final decision and it all depended on margins but he was going in with the intent to leave him intact.

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

Please make sure you are speaking with a colorectal oncologic surgeon - a specialist. You may have to travel to go to a specialized cancer center, but I would want this decision made by someone whose entire focus is colorectal cancers/surgery. A specialist may be able to accomplish something that a generalist may not.

Outside of major cancer centers, surgeries may be performed by surgical oncologists, but unless they have an adequate case load, they will not be specialized. A similar statement applies to the medical oncologists. My local medical oncologist, from a major medical college, is a generalist. I go to Memorial Sloan Kettering where I have both medical and surgical oncologists who only do colorectal cancers overseeing my treatment.

Further, I think about a recent post I made about treatment options. If the benefit is questionable or unknown, do you want to take the more aggressive approach, knowing that there is a higher likelihood of it affecting your lifestyle, or do you want to take a questionable risk, and have a better chance of returning to the "old normal?" Just some things to think about....

Minnesotagirl
Posts: 141
Joined: Sep 2011

Hi,

I am a Stage 3 Rectal cancer with lymph node involvement survivor. I did not have my entire rectum removed. I would make sure that your surgeon is associated with a National Cancer Hospital who specializes in this type of surgery. Don't be afraid to ask questions and always seek out the best. I chose Mayo Clinic in Rochester, MN for my surgery and follow-up care.

They started me on Radiation and Chemo prior to surgery. Surgery removed my tumor along with part of my rectum and 29 lymph nodes as well. My Oncologist followed up with another 4 months of chemo post surgery because of my lymph node involvement as well.

Speak up...ask questions...demand answers. You must be your own advocate and remember this is your body... Best of luck to you my friend and be kind to yourself and body with good food, exercise and positive thoughts. You too can be a survivor!

"Minnesotagirl"

fatbob2010's picture
fatbob2010
Posts: 385
Joined: May 2012

There is a lot of information coming at you very fast with options and possibilities that are both hopeful land scary. Is a third opinion an option? Is there a doctor in practice near you that specializes in this type of cancer? Is your hospital a national center? What ever you decide it will be right for you and your family; try to trust yourself. Hugs of hope and understanding to you and your family.

Coppercent
Posts: 142
Joined: Jan 2012

Don't stress if you do not live near a national cancer center. There are some really great colorectal surgeons that are associated with local hospitals that are awesome! I personally went to an awesome colorectal surgeon at a local hospital and he did a great job. He has a high success rate for saving anal sphincters so that patients do not end up with a permanent ostomy. Although he was pretty honest with me and said he would not know for sure until he opened me up. He does a lot of Da Vinci Robotic surgery but unfortunatley for me I had some side difficulties and ended up with a nice slice down my stomach. He removed my entire rectum and I don't have a permanent bag. And he did such a great job I was off pain meds the second day after surgery. Maybe I am giving him too much credit for the pain but I see so many people on these boards that go home with pain meds and are on them for weeks after a LAR. He must do something right to send his patients home with no pain meds. And I have talked to many of his patients that he has done a reversal on and they are up and running and back to work in two weeks.

So if it makes you more comfortable to go to a national cancer do so. But if that is not available to you don't let it stress you! There are many awesome surgeons out there that do a great job.

otis2012
Posts: 4
Joined: Aug 2012

Thank you so much for your thoughtful responses. I'm blown away! I've never participated in a health-related discussion group before and I'm so impressed. I'm lucky enough to live in LA where there are several major cancer centers. Both surgeons I've spoken to are specialists and highly regarded, trained, recognized. I will go back to the first one and ask why he recommended total removal. I may get a third opinion but I'm starting to feel stressed out about waiting any longer. Thanks again.

RobinKaye
Posts: 93
Joined: Nov 2011

Otis, don't panic, you've got some time to make the right decision. Nothing's going to happen in the next couple of weeks. Relax, this is a big decision. All things being equal among doctors (except their opinion) I would opt for a doctor who is open-minded who has the goal of saving the spinchter but is honest in that it's removal may be unavoidable.

danker
Posts: 736
Joined: Apr 2012

I asked my surgeon how much of my rectum did she take. The answer was 2/3 rds or 10 cm. With the remaning 5 cm of my rectum
I am Ned two years out from the resection and living a normal life. Hope this is what you wanted to know. Good luck>

Helen321's picture
Helen321
Posts: 750
Joined: May 2012

90% of people only need to have the partial surgery. 10% usually have chemo and/or radiation with the second surgery being the entire removal. It's a roullete game. I opted to do partial at the first surgeon (which wasn't very difficult, just some discomfort for a short period of time, couldn't sit for several weeks, using daily stool softeners and drinking a lot of water - 64 ozs. a day) and my luck, I was the 10%. I'm now doing the chemo/rad and will have the full removal with an illeostomy (temporary hole in the abs with a bag that can be reversed with a second surgery to reverse the ileostomy). When I came to this new surgeon, he told me because the growth was very "elastic" (it bounced when he pressed it which means it was "trying to grow roots" - He used technical terms too but those are the laymans terms), he never would have done the partial. The second guy was a top guy at a cancer center, the first was a top guy at the local hospital specializing in oncology. Of course the second guy had an advantage. He knew the surgery didn't work so he can say that's what he would have done. I'll never know. I can't look back, just forward. You need to know specifically why each is choosing what they are and best to get a third opinion from a completely different cancer center and not tell the third guy what either of the other two said. You want his opinion, not something he says based on the other guys. Someone has to be the 90% and someone has to be the 10%. It all depends on what patterns normal or abnormal your cells are following. I'm guessing that the guy who wants to do the whole removal is saying he's not willing to take a chance based on the grade of your differentiated cells. And the first guy is saying well I think you stand a good chance of a simple sectional and that will solve this. They're pretty much both guessing based on their own experiences and what they know. They can't predict what your body will do. My fist doctor said, I think you will be the 90% based on my experiences. I thought okay, well 90% are pretty good odds. I rolled the dice. It's one of those hard choices. If you choose the partial, it is very important that you do all follow up visits and don't slack off on them, period! Go to your 6 week checkup, come back for the 3 month checkups like clockwork, you can't skip. Stick to it because it matters a lot! I followed up for the checkup and I was the 10%. Imagine I hadn't. If you choose the whole, don't look back and make sure you know what happens if . . . .think of every single question you can to ask. If the cells did come back (knock on wood) would there be permanent consequences of any kind. Would you have to get a permanent colostomy (bag in you abs in which to use the bathroom). This is your body. Do the research. Do research on both surgeries, make sure you ask all of the what happens ifs you can think of (have someone who is good at asking questions go with you, my sister is just phenomenol, I wish I would have brought her the first time) . . . . Do research on what others do based on your grade of differentiation. Check out what protocol the majority of cancer hospitals use in your case, you can finds this info online most times.

otis2012
Posts: 4
Joined: Aug 2012

Thanks, once again for these responses. The polyp was removed from the mesorectum. I have one surgeon who never does a partial removal when the mid or lower section is involved, believing that a TME is the only answer - mainly because he believes it's essential to remove as many lymph nodes as possible. The other surgeon says that he thinks he can do the partial removal and believes that only the lymph nodes that the tumor drains into are relevant and sees no need to remove the rest. He also warned me that since the site is relatively low, he may need to do a TME anyway. I'm 43 years old with a 2 1/2 year old daughter and I want to do the best I can to ensure this doesn't come back. At the same time, it seems my quality of life will be better with the less radical surgery. Still, the TME surgeon thinks the J-pouch is preferable to a compromised rectum, and the surgeon who would like to try to remove less thinks the partial rectum would function better. I'm going for a third opinion tomorrow.

Any thoughts?

John23
Posts: 1832
Joined: Jan 2007

There are a lot less problems with an ostomy than with a "J-Pouch".

You can learn a lot at the UOAA website! Research it all before
you make a choice.

Best hopes!

John

KathiM's picture
KathiM
Posts: 7878
Joined: Aug 2005

2cm tumor, first rectal fold.

I live in LA area, as well...found a specialist in oncological bowel surgery...specifically, low bowel resections. Dr. Stamos at UCI med center in Orange county. He was my second opinion, after first said total removal and ostomy. He lectures world-wide on his procedures...VERY well respected man "Famous Stamos" we call him *smile*.

Dr. Stamos gave me a choice. I responded VERY well to chemo/rads pre-surgery. But, based on my age (49) and my kids (2 developmentally disabled kids), he recomended a J-Pouch. I was just relieved to not have an external appliance. My choice was to have the J-pouch, with a 3% chance of permanent ostomy, or do nothing more than watch and see if all was taken care of by the chemo/rads. I chose the surgery.

I am sharing this to say that this surgery takes alot of recovery time. Because your bowel is now redirected, and, at least for me, I also lost my 'pusher' (sigmoid colon), it takes patience to learn how to use your 'new equipment'. That said, if I had it to do again (even after finding that there was no sign of cancer left in all of the removed organs), I would still opt for the J-pouch...It was a success for me, and I am not good at 'wait and see'...I also wanted to avoid a lifetime of ostomy challenges...with all the equipment, and the care necessary with the external appliance.

Good that you have more than one opinion. Either option has it's risks and challenges...sigh...I HATE this monster!!!

Hugs, Kathi

(8 1/2 years post dx, stage 3 squamous cell carcinoma, first rectal fold, stage 2 breast cancer subsequently found on a PET scan for rectal...NED on both)

otis2012
Posts: 4
Joined: Aug 2012

I'm not being offered pre-operative chemorad because there is no longer any detectable cancer. I had a PET CT and an endoscopic ultrasound and both were clear. However, the 3 cm polyp that was removed from my mid-rectum had invasive carcinoma, poorly differentiated extending to the margins. I have one doctor who believes it's essential to remove as many lymph nodes as possible and another who says it's only necessary to remove the relevant ones - ones that the tumor would be draining into. It's very confusing to hear such different positions but I recognize this is the norm in cancer treatment. Thanks for mentioning Dr. Stamos. I'll try to get an appt.

steved
Posts: 836
Joined: Apr 2004

Often people come here with similar dilemmas and ultimately it is down to finding a team of professionals you trust the opinion of. You will never gain enough knowledge to have a greater expertise than your team so don't necessarily aim to know enough to be able to make the decision yourself. More base your knowledge acquisition around being able to know enough to judge which professionals are best placed to make that decision for you ie your knowledge will help you know who has the right expertise to make the best recommmendations for you. It sometimes worries me that people try to learn enough in a few weeks about these situations to make the decision themselves, when you are seeing specialists who have been training for years. Knowledge is power in this situation but it should not be aimed to replace the knowledge of the experts but more to help you work with them.

The bottom line is that in this field there are different opinions as to the best treatments and none are wrong- they simply represent different appropriate ways of treating the same illness. Ultimately you need to place your trust in one of the teams that you feel are best placed to help you- your knowledge will help you make that decision. After that you need to accept whatever outcomes occur- good and bad and believe you made the right decision at this time.

There is a lot of good advise above about opinions and options and I don't have a lot to add beyond them. I wondered if you are going to have preop chemoradiation which is comon in rectal cancer and improves long term prognosis as well- not sure if you have seen oncologists as well as surgeons.

It is ia long journey you are enbarking on and decisions you make now will affect things in your future so you are doing the right thing in gaining knowledge and understandig now. HOwever, at some point soon it is going to be a matter of placing your faith in the hands of one of the people you have seen and going for it.

I hope things go well for you and do let us know how it all pans out,

steve

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network