Hello, My Dad had a colonoscopy in December with one large polyp removed. After biopsy, the polyp turned out to be cancerous. It was large at 2cm. The tumor is located very close to where the colon meets the rectum, so a colostomy may be necessary, even if there is no spread. He is scheduled for sigmoidoscopy to determine its exact location and then a rectal ultrasound for staging, I believe. If they do recommend a colostomy, is it always necessary or is there an alternate surgery available? What about at major cancer centers? He is near Chicago. We are so shocked and saddened by this recent news. What are the chances that there was no spread with such a large tumor? Any words of wisdom would be so appreciated. Thank you so much.

I am sorry that your dad has been dx with colo-rectal cancer but glad you have come to this board for advice and support. My husband, dx in July 2003 with Stage 111c rectal cancer was told he would definitely need a colostomy. We live in on a small island and there were really no second opinions. In spite of the fact that he had some complications during surgery, he did not need a colostomy. That was such good news to us!

However, there are several persons on this board who do have a colostomy and are coping with it very well. The most important thing is to recover from this disease...that is priority. If you feel you need a second opinion and have one available, then it might be a good idea to consult someone else....if only to give you peace of mind.

This is a difficult time for you and I hope everything goes well for your dad. When you know what staging, you will be able to research your options in more detail.

Do come back to the board whenever you want support and look after yourself too during this stressful time.

My advice is to encourage him to explore a trans-anal excision. NOT every surgeon will do it, and it does depend on how far into the wall the tumor is, but is DEFINITELY a viable option. If his surgeon says bad things about it and does not present it as an alternative, get a second opinion, or third opinion from someone who does do them. Cleveland Clinic is great for colorectal cancer, and there are the big cancer centers like NY Presbyterian, Sloan Kettering in NY City, or another GREAT place for colorectal is in Boston--the Lahey Clinic, and he can also get a consult at Dana Farber. He may need to do some traveling in the beginning for a second or third opinion, but if at all feasible, it is WELL worth it. Most colorectal cancers are pretty slow growing, meaning he DOES have time to get other opinions... don't just rush into something. And make CERTAIN he uses a board certified colorectal surgeon, not a general surgeon who does some colorectal work.

I wish more places were coming to mind in Chicago... hopefully a search on the net, or someone can chime in to give you more help if you can't travel. But, he may NOT need a complete resection... and if not, he can save himself from the liklihood of many serious side-effects.

Good Luck,
CancerDad

Thank you both for your replies. I'm wondering why a trans-anal surgery is preferable to abdominal. His surgeon commented that the trans-anal is much more difficult and complicated and is recommending abdominal, instead. This comment was made before any scans or additional tests were performed, so he had no idea of the tumor's depth. Any information you could provide would be truly appreciated! Thanks again.

Trans-anal is easier the closer it is to the anus. If your Dad's tumour is above the rectum that makes trans-anal surgery harder for the surgeon , who's main concern is getting at all of the tumour.

Trans-anal surgery avoids problems with cutting through the abdominal cavity, possible nerve damage and allows quicker recovery.
However it also has problems such as risk of perforation of the rectum which would result in emergeny abdominal surgery to repair it and possible permanent damage to the rectum.

Abdominal surgery also allows the surgeon to examine the outside wall of the colon for signs of cancer spread, and to remove lymph nodes.

Since the surgeon's priority is to ensure getting as much of the cancer as possible and taking extra tissue as well to ensure a good margin he/she will prefer abdominal surgery if there is a question about how deep the tumour has entered the interior wall of the colon.

Your Dad has to weigh the surgeon's priorities against his own.
Cancer Dad suffered nerve damage as did I. Mine much less severe than his.

I have a permanent colostomy that would be in about the same place that your Dad would have one if it becomes neccessary.

Hi again:

Ok, the trans-rectal or trans-anal approach is available for people with a T1 or T2 lesion. With either, depth is not as big an issue as is size of the tumor. With an abdominal approach resection, you need a 1 1/2-2cm distal margin (extra space to the sphincters for removal). The trans anal approach, you need to have a 1cm circumferential margin to carve out the lesion/tumor.

Literature states that for a T1 lesion, done abdominally or trans-anally, there is a 5% chance of recurrence or risk of eventual mortality. A T2 lesion is a little more tricky. The literature states that there is a 15-20% chance of recurrence with transanal versus abdominal approach has a 5-10% risk. However, when you factor in the case that surgeons who perform this on a T2 tumor also advocate radiation, you end up with virtually THE SAME long-term survival rates.

All this said, there are specific criteria for the trans anal approach...The standard criteria for a trans anal excision are lesions that are less than four centimeters in size, not ulcerated, less than one-third to one-half the circumference of the rectal wall, they have to be within reach of the anal canal. Obviously if they are too high to get instruments inside, then it can't be done. Microscopically they should be well to
moderately differentiated tumors. You should not have this procedure if the lesion is poorly differentiated or has has the presence of vascular, lymphatic, or neural
invasion. They can tell all this from CT and Trans rectal ultrasound, and PET scans. If his tumor does not meet the criteria, then he should have a radical procedure. The other criteria for trans anal excision are that it be a T1 or no more than a T2 lesion.

In response to some of JD's concerns... they can go as deep as they need to and just sew the rectum back together. If they perforate the rectum, they sew it up... worst case is they can't get the entire tumor, and then they go in--non-emergently--and resect abdominally. In fact, there is another procedure (much less commonly used because surgeons don't know what they are doing) where they go into the perineum and go BEHIND the rectum, where they can resect the tumor from behind the rectal wall and get some nodes out too from the perirectal fat pad.

The transanal approach is DEFINITELY worth looking into. But as I say, there are some surgeons who CAN'T do it, and don't know the proper criteria for it and therefore recommend or push you into a more radical abdominal resection.

There are very few possible side effects from a trans anal approach versus with abdominal where you can have, and I do/did: possible urinary or sexual side effects, leaking of stool, or frequent trips to the bathroom where it's difficult/impossible to hold in stool, pain from nerve damage, etc.

I have been well-versed in this procedure by a colorectal expert, who performs this procedure, as a result of litigation I have pending against my Primary Care Doctor. If your Dad has a T1 or T2 lesion, I would NOT discount the procedure, and NOT take what your surgeon might tell you about the procedure as gospel. Look in the literature.

As JD says, I did suffer from nerve damage and had all those problems listed above, and now have a permanent colostomy as well. JD was probably not told all the possible positives of a trans-anal approach, because like I said, there has been controversy in the literature-- and DEFINITELY would have been around the time JD had his surgery. I think more doctors are aware of it now, but like JD says, they want to get out all the cancer. Literature shows that with a skilled surgeon though, they can trans-anally if the patient meets the criteria.

I hope this helps.
Good Luck,
CancerDad

just want to let you know not to give up hope. both my parents had colon cancer, and they are both survivors. my mom had it detected really early, and just required a surgery to remove 4 inches of her colon. my dad on the other hand waited a little bit too late, and had surgery to have his entire colon removed and now has to carry a colostomy bag around the rest of his life. but the important thing is they're both alive. so colostomy or no colostomy just be happy it may save his life.

Thank you again for your replies and your candid honesty. I appreciate this forum very much. Today my Dad had sigmoidoscopy and the doctor gave him some hopeful news. He said the area where the tumor was removed appears to be 'clean' and there is a good possibility of no spread. This is wonderful to hear, although I know it isn't final until after the surgery. The doctor said the area is 10cm into the anal canal, too far for trans-anal excision. Does this sound reasonable? Also, the doctor feels he will not need a permanent colostomy, but will need a temporary one for 3 months. He said the risk of nerve damage during the abdominal resection would be approx. 25%. I live almost 600 miles from my parents and I'm wondering how much help they will be needing immediately after surgery. I'm planning on being there for the surgery, but I need to know approx. how long I should plan on staying (I have 4 children). My mother is strong and capable, but may need to return to work shortly after the surgery. What can I do to be of the best help to my Dad? The doctor has said that the surgery is 'major' and a transfusion may be necessary. This is all so scary. I'm sorry all of you have had to deal with such a brutal cancer. Any comments would be most helpful. Thank you again for all your help!

I'm a little confused. Was the gastro able to completely remove the lesion? Or was there something left behind. You say the surgeon said it looks "clean." So, what's his staging? What did the path report reveal... poorly differentiated, moderately diff, or well-diff? I'm assuming adenocarcinoma.

10 could be done trans rectally... they pull downward on the tumor to carve out that one cm circumferential resection.

He is correct... this IS major surgery, and there is a good chance that his nerves will be affected... 25%???? Lost blood is typical... I donated my own prior to surgery, and required 2 units after surgery. It is true that there should be plenty of room for a 2cm margin distally (towards the anus) without encumbering on the sphincters.

BUT, this IS major surgery. PLEASE get a second opinion from someone who performs trans-anal excision.

What about just radiation if the tumor site was "clean" to make sure that all cancer cells were killed?

~CDad

Thanks Cdad,
My dilemma lies in the fact that my Dad has 100% faith in everything his surgeon says. He doesn't even ask any questions. He doesn't have his pathology report and I highly doubt he'll ever even see it. The surgeon asked him yesterday if he had any questions and he said "no, I just want to get this over with". The doctor then proceeded to answer some FAQ. I'm beside myself with worry, because I want to help him, but when I approach the matter, he and my mother becaome somewhat defensive. As for the tumor, I have no way of knowing the staging. The surgeon said that based on the sigmoidoscopy, the area 'appeared clean'. That's really all I know. I'm so frustrated. How can I help?

D.

My surgeons first tried trans-anal removal of the tumour since it was so close to the anus and relatively easy to get at. However, after removing the visible tumour it was seen that the cancer was very possibly through the wall of the rectum. Because it was so close to the sphincter the surgeon told me that if he had removed that portion of the rectum and used minimal margins I would likely be completly incontinent. The colostomy is a better choice than that.

I was told all of this going in CD. I was told before the transanal surgery that it would take 4 hours if all went well but that if they decieded that the cancer looked like it was too deep that the surgery would be only two hours.

In post op I looked up at the clock and knew which way it had gone.

D,
It sounds as though Dad (and Mom) have already made up their minds, and despite current literature they are not going to change their minds.

(JD-- I meant no disrespect to you or your advice, but was simply pointing out that data has changed in the literature regarding the procedure, and obviously the number 1 goal is to eradicate the cancer. This CAN be accomplished in T1 and T2 lesions with the proper characteristics with a trans anal excision. But I know the jury was still out before now, and there are STILL surgeons who have not caught up with "current literature" yet. So just like anything in science, protocols change as new data is available. It doesn't mean that you received improper care, an abdominal resection was and is a viable option.)

D,
The things you can do is be supportive. They are two adults who have made this decision. Just ask your Mom what you can do for her to be supportive. Most of the support will come after surgery. If he requires chemo, or during recuperation, it might be tough on your Mom. Sometimes not pushing your way in and just being there to let them slowly ask for help is best. But, you do have your kids to worry about too. Do you have siblings who live closer?

This board is FULL of people with great advice. For caregiving as well as everything else! Maybe others will chime in and offer opinions on how you can provide support.

I wish you all the best of luck.
~CDad

FMD, did you say how old your parents are? Strong and otherwise healthy?

Going by my experience with surgery(I was 45 years old, non-smoker for ten+ years, healthy but 20 pounds overweight)

Hospital stay post-op 7 to 10 days with no complications such as infection or slow bowel recovery. He will not likely be able to drive himself home nor would it be a good idea IMHO.

The first week at home will still be very tender. He should not lift anything heavier than a coffee cup. He should try and walk for 3 to 5 minutes 3 or 4 times a day (slow is good, simply walking up and down the hall of the home is OK) this keeps the lungs clear.

Lying down and getting up should be done slowly and deliberatly, treat this as you would someone recovering froma hernia operation.

He should start feeling more strength after the second week at home and fell a lot better after about 10 weeks. Full recovery, full regaining of strength, will take longer. After the colostomy reversal expect somewhat faster recovery but all effects may not be done with for a whole year post-op.

This is if everything goes right, if he adjusts to the colostomy well, no major complications. If all that happens they might need your help only for a week or two after surgery and maybe not even that much.

Thanks to everyone who responded to my questions and concerns previously. With many thanks to this board and its special members, I can happily report that I 'bullied' my Dad into a second opinion. I Googled trans-anal excision, came across a hospital site listing their success in using Trans-anal Endoscopic Microsurgery, found that the major hospital was near my Dad's home and I pleaded with him to call. He did, they saw him the next day, he had scans there, path reports, etc with him and drum roll, please.........He does NOT need major abdominal surgery, does NOT need a colostomy and the cancer has NOT spread!!!!!Now I realize they could find cells during the excision, but the surgeon feels that is very unlikely. I can't say thank you enough to all of you who informed me when I felt so helpless. He says he feels like himself again, his depression has lifted and he seems so light now, as if all of his fears have been lifted. I will keep you posted after his surgery, but for now, all I can say is THANK YOU!

D.

Great news. Do you have a date for the trans -anal excision?

Keep us informed if you don't mind, and know that our hearts and thoughts are with you.

D:
I am ECSTATIC that this is working out for him and that he is considering other options with a thorough understanding of the risks and ESPECIALLY benefits to a non-invasive procedure. I commend you for your persistence and obvious caring for your Dad and wish him the BEST of luck. I was going to ask for path reports, staging, etc, but it sounds as though he is in VERY capable hands.

Please let us know how all works out!

Fondly,
CancerDad

My Dad had his Transanal Endoscopic Microsurgery on Monday. We waited somewhat nervously for the pathology results and they came back yesterday....NO CANCER CELLS were found!!! The specimen was clear! Yippee!!! He now will be followed every three months, although I'm not sure for how long. We are over the moon with joy! Once again, thank you for your advice and comments regarding our situation. We, but he especially, shudder at the thought that he would have had the major bowel resection on the 26th, if we had not found out about TEM. I wish all of you the very best in your fight against this horrid cancer. I will not soon forget the help I received from this board.

With many thanks,

D.

D:
Please congratulate your Dad for me and wish him my best for continued good health! Also, please stop by every once and a while to let us know how he is doing. I am SO glad everything worked out so well for ALL of you.

With Warmest Regards,
CancerDad