Urgent Advise Needed

My dad has been diagnosed with rectal cancel stage 1 (3cm from anus), CT scan and MRI showed no other areas affected but the surgeon mentione that since the tumor is so low and there is a possiblilty that it might spread to the lymp nodes at the groin areas as they have swelled.

 The treament options are

1) Remove the whole rectum with permanent colostomy

2) Remove the affected area (2cm tumor) follow by radio and chemo    therapy by saving the anus without colostomy. However this would not guarantee bowel control as the tumor is so close to the anus and some of the sphincter muscle might need to be removed.

We have opted treatment option 1. Would appreciate your advise if this is the correct decision and what are the chances of my dad? Thanks! 

In my case, the tumor was about 5-6cm inside the anus.  I was diagnosed with Stage III Rectal cancer in Oct. 2001.  I followed Option 2 in your scenario.  I had the radiation and chemo before the surgery to shrink the tumor.  With more chemo after the surgery.  The "bottom" line is that it has been pretty much a constant battle for me to maintain bowel control.  After several years, I finally realized that if I only ate two meals a day, minimized my fiber intake, and took Metamucil capsules with each meal, then I have about 75% normal bowel control.  I'm sure that having a colostomy brings its own set of problems, but I've often wondered if I would have been better off with a colostomy myself.

Good luck!  Since your dad's cancer is stage one, then he will have a very good chance for a full recovery.  Fell free to contact me if you have any questions.

SurvivorLou

On 3/12/2008 miserable wrote:

My dad has been diagnosed with rectal cancel stage 1 (3cm from anus), CT scan and MRI showed no other areas affected but the surgeon mentione that since the tumor is so low and there is a possiblilty that it might spread to the lymp nodes at the groin areas as they have swelled.

 The treament options are

1) Remove the whole rectum with permanent colostomy

2) Remove the affected area (2cm tumor) follow by radio and chemo    therapy by saving the anus without colostomy. However this would not guarantee bowel control as the tumor is so close to the anus and some of the sphincter muscle might need to be removed.

We have opted treatment option 1. Would appreciate your advise if this is the correct decision and what are the chances of my dad? Thanks! 

I had a similar experience-mine was slightly higher up and I opted for scenario 2.  I am assuming that the doc is speaking of a transanal excision.  I had my chemoradiation first, however which if he chooses that option, I would suggest is done in that order.  If the chemoradiation is done FIRST, then the tumor can shrink, kill off most or all cancer cells, have a better chance of getting any potential groin swollen lymph nodes and having a better outcome for the surgery and sparing the sphincter muscles.   Obviously that would TOTALLY depend on how well he responds to the chemoradiation, but MOST people respond quite well.  Should the pathology report show a negative result, then your father could always opt for the more extreme surgery.  I know of another woman whose tumor was also that low, opted for surgery option #2 and is having no issues with control.  I also have absolutely no control issues and had my surgery now just about one year ago.  While the chemoradiation can be done after the surgery, in your dad's case, with everything being so low, I would ask the surgeon about switching the order around.

 Another big question to ask of you is this.  Is the surgeon that you are dealing with a colorectal specialist?  VERY important as operating in the rectal area is a more difficult surgery, particularly for a male.  It's a tight space and everything down there (nerves, tendons, ligaments, other organs, etc) are in close proximity to one another.  A general surgeon who might be good and who maybe can do this surgery is NOT the same as a colorectal specialist. 

Personally, I have a big problem with stage I (although there always is the risk of the unknown lymph nodes) surgeries being so drastic.  The chemoradiation combined with transanal excisions, done under the care of a specialist has shown excellent results rivaling option #1.  However, remember that the chemoradiation is a MUST!!!  Without is, it is like comparing apples to oranges-I wouldn't even consider it!  As for the chemoradiation, it isn't all that terrible.  Not  that bad if you are proactive from day one.  In your dad's case, I would guess he would take the oral form of chemo so no port would be necessary, etc.

As for sphincter control, it is not an issue with any of us (there are four in our 'group' who have had this procedure.  Personally, I can tell you that my bowel habits have greately improved since the surgery, and I usually go anywhere from 1-3 times a day.  If you send me a private message, I will give you my direct email address and can put you in contact with the other people that I know of.

Personally, I wanted to avoid any possibility of a colostomy.  I realize that there are people out there who successfully live with them and honestly, I give them soooo much respect.  I don't know how difficult it would have been for me to adjust to one, but that is me.  Obviously, many people do and learn to live with one. 

With an early stage (mind you, if it was a later stage the scenario would be entirely different) you DO have the option.  I would ask about switching the order of the treatments for scenario #2 and see what the doc says.  If the order switch is agreeable, I would go with that scenario hands down.  Even if not, it would be my opinion, being in the exact same position to do it that way again.  Stage 1 is very early and while no one can guarantee you anything with cancer, I would go with the option that allowed me to remove the cancer with good results and keep things intact-that's my opinion and it has worked for me.

Jaynee

Hi,

 I'm sorry to hear about your dad.  I will tell you my experience and perhaps it will help with your dads decision on what to do.  I was diagnosed with stage II mucinous adenocarcinoma 7/3/07.  I was sent to a general surgeon and he said I had to have an APR but first he wanted me to have radiation and chemo.  I then went to the onc. and he started me on continuous infusion 5FU and sent me over to the radiation dept. to get started there.  I ended up with 8 wks of chemo and 28 sessions of radiation.  Anyway, while I was going through that I met Jaynee on this board and she told me about the transanal excision.  I did some research of my own, found a colorectal specialist and went to see him.  He told me that the excisions was not the "standard of care" but said he would do it.  He said with that surgery and the chemo and radiation my chances of it NOT coming back were about 88%.  I thought those were pretty good odds.  He also wanted me to have 6 mos. of Folfox after my surgery.  On 11/13/07 he did my transanal excision.  The surgery took about 3 hrs. and I was released to go home after.  The pathology report showed that the radiation and chemo had shrunk the tumor to a stage I and the margins were clear (cancer can't jump so that's a good thing, the best!).  He and my oncologist spoke and decided I did not need to have the additional 6 mos. of chemo since it was downstaged to a one.  Now for the after effects of the surgery.  It was a pain in the but:)  Literally:)  But now after almost 4 mos. I am pretty much as good as new.  For a while I had multiple bowel movements but that has gotten pretty much back to normal.  Actually, most of the problems I have now are from the radiation and not the surgery.  I did have to stay close to a bathroom right after the surgery but that works it's way out.  I think I forgot to tell you where my tumor was.  It was 2.5 cm and it was right at the sphincter muscle.  If they did an APR I would have had to have a permanent colostomy because it was so close to the sphincter.  I hope this helps your dad in his decision.  I know it's a hard one, I struggled with the decision until after I made it.  Did I make the right one, etc....etc....   I feel I absolutely did.

Good LUck and God Bless you and your family!

Terry

Hi, I am sorry you and your Dad are going through this. I am sure your Dad is grateful for your support and your desire to help with this decision.This is my story. After a routine Colonoscopy I was found to have a rectal tumor. My surgeon sent me to a colorectal surgeon and   I underwent the usual preoperative stageing and transanal ultrasound which found the tumor to be T2, Stage 1.  My surgeon them explained  the two types of surgery I could have 1. The apr, which I may or may not have to have a colostomy, and was considered the standard of care for rectal tumors . or 2. a Transanal excision. He felt that because my tumor was so low that he could do the Transanal Excision.. Knowing nothing about rectal cancer If he had not given me the 2nd option, I probabally would have let him do the first. I am so thankful that he was up on all current info . He did a transanal wide excision on Oct.11 and I stayed in the hospital for 3 days. As Terri says It was a real pain in the Butt. I did develop a minor infection during the healing process which was taken care of with antibiotics. At that time I came in contact with Jaynee. I was trying to make the decision of whether to have chemo/radiation. After talking to her the whole process didn't seem so scary anymore. 6 weeks after surgery I had chemo/ radiation for 6 weeks. It has been 2 months since I finished the treatment. I feel great. I honestly believe I have made the right decision. It probablly would have been better to have the chemo/radiation before, but they don't do that with Stage 1, sometimes they don't even do chemo/radiation after. I have talked with numerous others who have had the APR and a lot of them have had many problems.

I hope this helps you. If you need anything or want to talk let me know. I don't know what I would have done with out Jaynee as a friend and advisor of many areas of treatment. I think my treatment went so well because I was better informed and proactive. God Bless you both.

Hi again,

 I wanted to ask Survivor Lou a question.  She said that she went with option #2, but I can't help but wonder if she had an LAR, not a transanal excision.  I have never heard of them doing a transanal excision for a higher stage tumor and I would suspect she has an abdominal  or laproscopic incision(s).  If so, then she had an LAR which is not even one of your options. 

LAR surgery is where either laproscopically or abdominally the surgeon takes the entire (or a large portion of the) rectum out and reconnects you.  You do have bowel issues after that surgery.  If reconnection was a viable solution, then your dad's surgeon would have suggested it in the first place.  I am surmising that option #2 is the transanal excision - the surgery takes place via the rectum so no incision.  It is entirely different from the LAR and almost always has very positive results with regards to bowel functions.

There are other issues to consider with the first option.  Most everyone that I know of that has one has had to alter some of their food intake.  Certain foods do not sit well with a colostomy-why I am not exactly sure but I have been told that more than once so there must be some merit to it.  A colostomy can be (but is certainly not always) an issue for some patients-body image, psychological, etc.

The first thing that I would do is make sure what option #2 is.  I HIGHLY doubt that is is an LAR where the entire (or most of the) rectum is removed and then the intestine is brought down and connected to the anus.  It wouldn't make sense as then there would be no reason for a colostomy in the first place.  If a surgeon can reconnect you, then they go for that option first before they would do a colostomy.

As far as my recovery from the excision, I was able to go home that evening (day procedure) however, I chose to spend the night.  Many years back, I had broken my tailbone during childbirth and the retractors that pressed against my tailbone for the hour or so of surgery caused me a LOT of pain and I just felt better for the night being in the hospital on painkillers.  I had a fairly quick recovery from mine, however, I did have a heaviness-a fullness in my pelvic region (front) for about two weeks which progressively got better.  The surgeon explained that all the nerves, ligaments, etc got bruised, pushed around, stretched, and traumatized during the procedure, hence the pain.  I wouldn't say it was horrible and I could do just about anything I wanted.  Sitting for long periods of time in the first week was uncomfortable but things rapidly improved.  You must remember that with option #1 you are talking about MAJOR surgery-about a week in the hospital, a careful and gradual reintroduction of liquids and food (usually without anything for anywhere from 1 -3 days in the hospital) and weeks of recovery.

There is no right or wrong here.  Each person has to decide for his/herself which path to take with regards to surgery and any other treatment options because, ultimately, you are the person living with that decision.  The odds with either (PROVIDING - and this is a HUGE stipulation - that you have the chemoradation) are excellent for cancer free survival.  Basically, the difference amounts to how an individual perceives the quality of life after surgery and no one can make that decision for your father except him.  Again, please verify that option #2 is a transanal excision (might be called local excision or trananal endoscopic microsurgery) that is done via the rectum. 

Your father will ultimately have to weigh all the pros and cons and make his decision from there. 

Jaynee

Hi again,

I wanted to tell you one other thing.  If you opted for #2 (with either chemoradiation before or after - again assuming this is a transanal excision) and after surgery you decided that this didn't work, you can always go with option #1.  However, remember that it doesn't work the other way around.

Why not try the least invasive way first, particularly since the surgeon gave you that option.  Once your rectum is taken out (with #1) you can't put it back.  However, you can go the other way around.

Just a thought to exhaust all possibilities first.  Again, I don't think that at 3 cm up, particularly if the chemoradiation is done FIRST that your father should have bowel issues if the surgery is done in the hands of a colorectal surgeon.

Jaynee

I also want to mention to you that I am a registered nurse and therefore did ALOT of research before I made this decision.  It was a hard decision but after reviewing research documents and speaking with doctors that I have worked with and my own specialist who said he would have the transanal exision I decided to do the excision.   I just want you to let your dad know that I and I'm sure none of us that did the excision make the decision lightly.  We're hoping that some day soon the excision will be the new "standard of care" for early colorectal cancer.  If you google    

colorectal cancer + transanal excision

you will get some of the research articles and you can see that the overall cure rate (especially for stage I) is really high.  As a nurse I've dealt with colostomys and I could live with it but I'd rather not if the chances of survival are only a couple of percentage points different.

Let us know what happens either way.

Many thanks for your advises Jaynee and Terry. It was really a tough decision to make. My family has finally choosen option 1

1) no chemo or radiation for my dad as it can be tough on my dad

2) lower risk of recurrance (perhaps??????)

3) no 100% sure from the surgeon on healthy BM after surgery (as to control BM since he might remove part of the sphincter muscle)

 My dad has perfomed his surgery on the 14/3 and was discharged on29/3

He is now on his recovery period.

Good luck and God bless both of you.