Very Low RC experiences

[cmewrrie]

How low is too low to reconnect?

Anyone have success with reconnection with a mass 3cm or less above the anal verge?

Anyone make the attempt and regret not just going for the APR? (hoping I have the terminology right!)

With this latest development, a whole slew of new questions are swirling...I know for sure we now need to be extra diligent in getting additional surgical opinions/consults.

Just not sure if we are grasping at something that is not likely to work out.

a permanent colostomy would affect DH's ability to maintain his current line of work, so I am trying to make sure we do everything possible.

[teacher49]

CMe,

Here's my experience. RC tumor was anterior rectum about 4 cm at diagnosis and almost sitting on sphincter muscle. Pre-chemorad shrunk it by 50% but not complete response. My surgeon was a CRC specialist and a Fellow in the American College of Surgeons. He had a serious talk with me...and asked me if I wanted him to try and save my plumbing. He told me that with the radiated tissue and needing to get margins around the excision, he would be into the sphincter muscle and that might mean diapers. I told him, I'd like to still be here in 5 years and he then said that he would decide once he was in there for the resection.

I ended up with APR and it has not impacted my life at all. I still work full time and I can sit through a long board meeting or do a presentation in front of students without any emergencies. That is my story.

But if your DH has CRC Specialist who thinks they can get a connection with good margins I would have definitely gone that way first. I think that the standard of care is 2cm cancer free margin around the tumor and not into the muscle.

Best wishes for a good reconnection if possible.

[cathy123]

My surgeon said that they now consider 1 cm to be an adequate margin (which is what I got). And agree with teacher that from what I have been told if they have to touch the muscle you may likely be better off with a permanent bag. As I said in a different note, mine was 3cm and I saw 3 surgeons all of whom thought I could be reconnected. Two of the three surgeons did reccommend radiation first to shrink the tumor which is what I ended up doing.

I would make sure you have a certified colorectal surgeon as this is a tricky surgery. They had to hand sew me closed as there was not room for staples, and my surgery was over 8 hours long. My surgeon also had one of his partners assist him which made me feel better.

So, unless the drs are telling you it isn't possible I think you will likely be ok. However, I know that when they get in to operate you dont know exactly what they will find so it doesn't hurt to be prepared. My surgeon really never said a permanent colostomy was at all likely, but I did tell him that my number one concern is to be around to raise my kids whatever it takes.

[jjlist]

I had a reconnect for a 9cm sized rectal tumor 5cm’s above anal verge. I always wear a pad for leakage. I can not hold a bowel movement. My colon is being tasked to act like a rectum. It is not doing that. Storage is minimal, and doesn't trigger a bm, until things start to backup into my colon. A meal will then trigger the bm , which depending on my diet can either end up as a major accident or a multiple bm event that can go on for an hour with clustered bm's minutes apart. Some of the factors that affect success I believe are dependant on the surgeons skill, radiotion damage, tumour size and individual anatomy.

[lauragb]

My tumor was at the dentate line so very low. I had shrinkage from chemoradiation as viewed on an MRI. My surgeon is very skilled and did do a straight reconnect. My entire rectum and sigmoid colon were removed. My main issue following the ileostomy takedown was multiple BMs with very little output each time so it went on for hours. I did not have loose bowels or incontinence. But since I was spending several hours each day in the bathroom, I opted to start doing daily enemas. Since doing them, I think my colon is more sluggish so I have to drink a lot of water, eat raw fruits and vegetables and walk a lot. (Good things for over-all health) . So for now, this is what works for me. I can go about my day without thinking about the bathroom.

There are other people who have had low tumors removed that do end up having decent bowel functioning, and others who opt for permanent colostomies who have good quality of life. It is definitely an individual decision. It is of utmost importance to have a very skilled colorectal surgeon do this type of surgery, whether for sphincter preservation or for creating a good functioning stoma.

[justin case]

I believe I ended up at 2 CM above the anal verge, after temporary illiostomy, and radiation. When I need to get things done (work), or pleasure, I'm not able to eat before noon. It's doable.
Justin

[shade]

My RC was quite low too, and 3 mos after takedown I am still not sure whether I made the right decision. I really can't fully return to work yet, and I have a desk job with ready access to a bathroom. But it is still early. My surgeon told me I can get an elective colostomy later if my quality of life doesn't improve. Maybe I'll eventually learn how to manage as others above have done. There are many who chose to get a colostomy and do not regret their choice. The only thing I can suggest is to take a look at your lifestyle and your personality to decide what is best for you. How successful your adjustment will be post takedown is inevitably a crap shoot (pun intended) but many have satisfactory outcomes. I am still hoping...

[ticktock10]

My tumour was very low and my surgeon said that anything other than an APR was not a 'proper job' and would only lead to complications in future.

However, I ended up not having surgery at all. This may not be an option for you but if you have neo-adjuvant chemo-radiation to shrink the tumour, there is a chance that it will disappear completely. I chose to have scans 6 weeks after completing the radiation and both MRI and PET came back clear. I then had a sigmoidoscopy and this also came back clear (ie. there was no visible tumour anymore, just a bit of scarring from the radiation).

As a result of all those scans coming back clear, I had a choice between the 'safe' option of APR and the 'unknown risk' option of watch and wait. I chose to watch and wait, that was about 1 year ago and everything has been fine since then so far. It may not be for everyone but I am comfortable with my choice.

As I said, I'm not sure if this is applicable in your situation, I am just mentioning it in case you had not thought of it or had not been made aware that it was a possibility.

[PainInTheAss]

How low is too low to reconnect?

Anyone have success with reconnection with a mass 3cm or less above the anal verge?

Anyone make the attempt and regret not just going for the APR? (hoping I have the terminology right!)

With this latest development, a whole slew of new questions are swirling...I know for sure we now need to be extra diligent in getting additional surgical opinions/consults.

Just not sure if we are grasping at something that is not likely to work out.

a permanent colostomy would affect DH's ability to maintain his current line of work, so I am trying to make sure we do everything possible.

Unless he is a swim wear model, I can't imagine a line of work where a colostomy would prevent him from working. What does he do, exactly?

Many patients with colostomies irrigate so they don't even need to wear a bag. There really shouldn't be anything you can't do with a colostomy that you couldn't do before besides poop from your butt.

I can't remember what my margin was exactly, but I was told I only had a 15% chance at saving my sphincter. It seems like the tumor was right by the sphincter. I remember really wanting to save it at first, but later, I just really wanted my life to be saved. I told my surgeon before surgery to do whatever gave me the best chance at a cure.

[PainInTheAss]

My tumour was very low and my surgeon said that anything other than an APR was not a 'proper job' and would only lead to complications in future.

However, I ended up not having surgery at all. This may not be an option for you but if you have neo-adjuvant chemo-radiation to shrink the tumour, there is a chance that it will disappear completely. I chose to have scans 6 weeks after completing the radiation and both MRI and PET came back clear. I then had a sigmoidoscopy and this also came back clear (ie. there was no visible tumour anymore, just a bit of scarring from the radiation).

As a result of all those scans coming back clear, I had a choice between the 'safe' option of APR and the 'unknown risk' option of watch and wait. I chose to watch and wait, that was about 1 year ago and everything has been fine since then so far. It may not be for everyone but I am comfortable with my choice.

As I said, I'm not sure if this is applicable in your situation, I am just mentioning it in case you had not thought of it or had not been made aware that it was a possibility.

It should be clarified that this is an option for a complete response (no living cancer cells left in the tissue), not just tumor shrinkage. Most patients experience some tumor shrinkage. Mine shrank but there was a mass of dead tissue so it didn't disappear. Biopsy showed trace cancer cells so it was not a complete response.

[ticktock10]

It should be clarified that this is an option for a complete response (no living cancer cells left in the tissue), not just tumor shrinkage. Most patients experience some tumor shrinkage. Mine shrank but there was a mass of dead tissue so it didn't disappear. Biopsy showed trace cancer cells so it was not a complete response.

Absolutely agree. And even a 'complete clinical response' (as you describe above) is no guarantee of a 'complete pathological response' where there are no cancer cells in the section of bowel which is removed during surgery, including lymph nodes etc.

It's important to be aware of all the options and make choices that you are comfortable with.

[Daisymae]

I had a 9cm mass which ended up being 2cm in. It was stage 0 or precancerous, which we didn't know until it was completely removed. Because the biopsies did not show Cancer my doctor did not want to do radiation. I ended up with a straight connect, hand sewn coloanal anastamosis. I had a temporary ostomy which was later reversed. Everyone experience is different but I am so thankful and happy not to have a bag. I am 3 years out and for the most part have good bowel function. On occasion I get constipated which I find very painful but this can usually be prevented by daily metamucil and prune juice. Sometimes if it gets really dicey I have to do an enema. It's not perfect but it is certainly manageable. I run, do triathlons and keep up with my 2 small kids no problem. I had my surgery at sloan Kettering by an ace surgeon who specializes in sphincter preservation. Not sure where you live but maybe it's worth a second opinion from someone who specializes in this area if a bag is something you really want to avoid. Good luck -

[hart2hart]

Hi -

First and foremost the surgeon MUST be Board Certifed In Colon/Rectal! (A MUST!)

Pete Had Very, Very Low RC ---We sought-out 4 opinions. Two said colostomy and two said 90/10
we can reverse you! We went with the younger of the two surgeons. He not only saved Pete's
sphincters but -----he hand-sewed his connection which took him almost 4 hours. We have since
referred two Colon Club PTS to him. One he saved his sphincters and one has a consult with him the
end of May! Please PM me if you would like more information on Doc McClane! BTY, Pete's new normal
is pretty good - not like mine but pretty darn good!!!

Where do you live? Are you able to travel for surgery? Keep positive and go get more opinions!


Julie and Pete
Stamford, CT

[cmewrrie]

Thanks everyone. I look forward to hearing more. It's a dilemma for me because as the spouse my primary concern is survival. The bag doesn't worry me and IF it means a carer change (it may or may not I guess) so be it. But that's much easier for me to say when it's not my body or my career. I find myself walking a fine line when talking about it

Since I obviously can't do anything to change or predict the outcome, I'm hoping to gather as much information as possible to help guide and support.

The internet is filled with information on techniques and risks and benefits of them all but hearing from those who have lived it is very helpful when assessing the options and for preparing me, as the spouse/caregiver to support whatever decision he makes. So thank you all.

[hart2hart]

Hi Once again ---

Please get more opinions than just one for your DH --- I'm so glad we got 4 opinions ---
Every surgeon has their own ideas as to what they will or won't do.
Some think-out-of the-box more than others!! JMHO!!

Good luck to you and your DH!



Julie and Pete
Stamford, CT