CD-

Have you heard much about Dr. Beart who heads up the colorectal team at USC Norris Cancer Hospital in Los Angeles, CA.? We heard he was the best and we met with him last week. He said he would do a coloanal on my husband and that his sphincter was intact and the muscle was good, and gave my husband a less than 5% chance of ending up with a permanent bag. Of course everything I shared with my husband that had happened to you, and he is still set on trying to save his rectum. To me this sounded like the same procedure you had. They are going to bring the colon down, remove the anus, and make the colon the new anus. My husband of course liked the odds that this surgeon gave him, and rightly so. But, still have fears of the things that happened to you. I DID bring most all of the "side effects" that you experienced up to the surgeon. He said to stay positive, and they never expect those things to happen, and that they would do their best to make sure they didn't happen, but yes in fact, they could happen. uggh. Oh--and I did ask about the "precious" nerves down there and he said they work very hard at preserving them? huh? And when I asked about the chance of incompetence, he said to stay positive--sorta like in a way he said let's not talk to much about that like it was taboo--he said something like to my husband that "the mind is powerful--don't think anything negative about that--only positive thoughts"

So. And on top of that, he's not covered by our insurance, were paying out of pocket. But my husband believes he is the best and if he ends up with a bag, atleast we gave it our best shot, and then there would be no regrets later.

He must be pretty good, I think I heard the other night on ET tonight that he is Farrah Fawcetts DR. ? I asked his nurse if he was the best in the United States, and she told me that people travel from all over the world to see him.

I was just wondering what your opinion was.

:) Flygirl

Flygirl:
I HAVE heard of the name, but unfortunately, can't recall much info... I never met him personally. Go with your instinct though, if your husband will listen.:rolleyes: I remember saying that people deal in different ways. It doesn't surprise me that your husband "went numb" to handle all this. We all have our coping strategies. And we all do what we need to in order to get through this.

I would just caution you, keep in mind that "the best" is NOT always the best choice for you or your husband. I really wish your husband could see that maintaing "normal bowel functioning" will NEVER be what it was (what I believe he is probably imagining it will be). Even if the surgeon is successful in reconnecting, he will likely go to the bathroom multiple times a day, have urgent bowel movements, possible incontinence issues until his body begins to adjust. BOTTOM LINE is you are asking a different part of his colon to do something it is NOT designed to do. For some people, adjustment comes easier than others.

Also, there ARE other serious, legitimate concerns regarding surgery, and I don't like the way the surgeon apparently "blew you off." It is VERY IMPORTANT to have a positive attitude and outlook when going through this... you know my motto.. "attitude is everything." It truly is. But PRETENDING, and not facing the realities of what "might be" is not always the best approach either. It sounds as though we have SO MANY similarities. Not just in placement of tumor, prognosis, etc., but in the way he is handling the situation. I wish he was able to bring himself to post to others who have been there done that, and heard and talked with SO MANY OTHERS who have as well.

In any event, you can't make him do what he's not prepared to do. It Is a VERY TOUGH decision no matter which way you look at it.

I wish you both the Best of luck. Please don't hesitate to post with ANY additional questions. :)

Fondly,
CancerDad:angel:

CD-

Thanks again. I wish and will try to tell my husband again, but at the moment this is really all he cares about, which was much like you. I forget the saying about hindsight is worth a $$$, ?? ......but here you have it, from someone JUST like my hubby (same diagnosis) giving him this type of hindsight information that is really important, and he won't listen to it. My husband is extremely stubborn and will do things his way at all costs, and most of the time learns the hard way. I know that he will give it his all to try and make this work, and if it doesn't work out, than he'll just deal with the consequences (as well as myself). He has his mind made up on this one. I know him pretty well, we've been together 18 years. Alot of the time I advise him on things and they are disregarded, only later to have been told that I was right. I hope and pray this time that his gut is right. That's all you can do at this point I suppose.

Was I correct, that this was the same procedure you had?

Thanks- :dizzy:
Tonya

Tonya:

I just re-read the following post to my wife to get her take on it, and she honestly believes that there is nothing you can say to your husband, or that I can say that will keep him from fixating and LOOK at the whole picture. For him, he will most likely think and say, "this will not happen to me." I do sincerely write to him the following in hopes of getting him to gain some perspective of all that might be lost in his quest to preserve his rectum-- a function that he needs to realize will NEVER BE THE SAME ANYWAY. I hope this helps, and I hope he chooses to accept the reality at hand and ALL THAT MAY BE LOST. :angel:


They called my procedure a modified APR too because it took them so long to do, but did not completely remove my entire rectum and anus. Had they done a true Abdominal Perineal Resection (APR), they would have made an incision around my anus and "delivered" my anus and rectum through that incision, while also doing a full belly incision to allow them to transect the colon and remove the tumor. Then they do a colostomy by bringing the colon out through the abdominal wall and close up the anus completely.

I was SO set on "saving my rectum" that my colorectal surgeon tried like heck to keep me from having a bag and did a modified APR, or APR with coloanal pull-through. His primary concern, as was mine, was to remove ALL THE CANCER. But, I SO wanted to preserve my rectum and be re-attached. What I didn't stop to think was that I would have problems having bowel movements regardless for the rest of my life. My colorectal surgeon is a friend of mine, and I knew if anyone could preserve my rectum, he could. For some reason, I was SO FIXATED on preserving functioning, as your husband seems to be. Instead I lost functioning of my ability to "poop," had damage to my nerves and lost my ability to urinate and have sexual functioning. My decision and fixation with keeping my rectum was unrealistic with such a low tumor. Your husband seems to be exactly where I was.

People with cancer or tumors/lesions higher up in the rectum or colon have a better chance at gaining SOME normalcy. "Normalcy" meaning that even if everything goes perfectly during surgery, he STILL will NEVER have another "NORMAL" bowel movement again. When you remove a section of rectum low down, you have colon brought down to take on the job of your rectum-- expecting your colon to eventually learn to do something that it was never designed to do. For some, it works out ok-- typically those who have cancer higher up. For your husband, his best case scenario will never allow him to have a "normal" bowel movement again. His surgeon is doing this for him like my surgeon did for me because I wanted things to be "normal" and didn't think it through enough to realize that it never would be again. I feel as though my surgeon used me as a guinea pig... I think your husband's surgeon is doing the same thing; your husband has to deal with this EVERY DAY, just as I had to, NOT the colorectal surgeon. I painfully dilated my strictured rectum (because they strip the mucus lining and hand sew a "cuff" to re-connect the colon and rectum, they cause damage which scars and can close up due to scar tissue and an already small lumen) that didn't work and leaked EVERY DAY for a year and a half all the while going into the hospital multiple times to be dilated also by my surgeon. I did this literally until I thought I was going to go crazy. I had to liquefy the contents of my bowel because no matter what I did, I could NEVER get the diameter to be bigger than the tip of my pinkie finger. My surgeon kept telling me to hold on a little longer and see if things improve. For him, even though he started out as a friend wanting to help me by "saving my rectum" as I was so fixated on him doing, it didn't matter because he was my surgeon too, who wanted to be able to professionally say that he was able to re-connect a patient successfully with a tumor 2-3cm from the anal verge. I can't even tell you the HELL I went through day in and out. I stopped eating, because what goes in has to come out, and it was SO PAINFUL (besides the chronic pain that I suffer from the nerve damage, etc). All this so that he could be the hero surgeon. All the while, I WAS THE ONE enduring all the side effects... spending HOURS in the bathroom every day, having incontinence issues and wearing diapers, etc. Reconnection works for some people... people who have cancer higher in their rectum or colon who can try to make it work instead of having a colostomy. Even for them though, it is rarely "normal," with multiple bowel movements a day, diarrhea, sometimes incontinence... it is liveable, and most prefer this over a bag, but it is not back to the "normal" one once experienced before cancer.... It is NEVER THE SAME.

Your husband's tumor, like mine is about 3cm from the anal opening or verge right?? So, honestly this is what he will face in a best case scenario, he will constantly have problems with bowel function, sometimes having diarrhea and possibly 20 BM's a day, sometimes having such immediate urgency that he will have accidents, and depending how he heals, he most likely will have problems with continence at least some of the time due to radiation damage and probable nerve damage. Hopefully, he won't have the sexual and urinary components from nerve damage as I do.

It originally sounded as though your husband will have an entire Abdominal Perineal Resection (APR), where they cut an incision around his anus and from just above his belly button through or around to just above his penis, and then completely remove his anus and rectum. This can't be the case though if the surgeon intends to leave your husband's sphincter's intact. He MUST BE HAVING THE SAME PROCEDURE I HAD!!

In MOST patients who have tumors a little higher up, the surgeon is able to transect the colon removing the tumor and then use a special circular stapler to reattach the two ends together--colon to rectum. This allows for a larger lumen than when hand sewing. In my, and your husband's case, the tumor is too low to do this technique using the stapler. Men tend to have VERY narrow pelvises which make it VERY difficult for a surgeon to resect and work so low in the pelvis. So, in a coloanal pull through, he will strip the mucus membranes which have nerves in them, and transect at least twice, lower in the rectum where there are MANY nerves controlling sexual and urinary functioning.

Tonya, I write all this for your husband in hopes you will print it, show him my experience, and ask him to focus on the fact that his NUMBER 1 goal should be to get rid of the cancer... not save his rectum. If they can, and it works out, great. If not, then a bag is NOT A BAD OPTION-- save your life, keep your nerves and urinary and sexual functioning intact. Don't risk losing your wife as you try to determine "who you are" when no medications or therapies work for you to be intimate with the woman you love. ALL this possible-- a very real possibility that you need to consider when deciding whether you want a surgeon to do extra things that increase your chance of nerve damage. PLEASE, just think about this before making YOUR decision about whether to have this procedure and risk all else I mentioned. Know that having a colostomy is NOT the worst thing in the world if you can keep all these other things we take for granted. :confused:

I wish you the best of luck. :)

Warm Regards,
CancerDad:angel: