Low rectal tumor surgical options - LAR vs. APR

[weisssoccermom]

dschreffler,

The docs won't restage you. They may tell you if your tumor has shrunk but you will always be the clinical stage (and your treatment will go by that inital staging) that you were given before your chemorad treatments. What was your clinical stage???

A cancer that is treated in the neoadjuvant setting with chemoradiation can't be restaged as it wouldn't give an accurate staging. If, however, a patient is clinically staged at, for example, a stage II but the pathology report comes back with a positive node, then yes, that patient would be restaged to a stage III as that would indicate a higher stage, not something lower. The whole idea behind chemoradiation for rectal cancer is to shrink the tumor and hopefully sterilize the nodal field. Many people, myself included, have had my tumor totally disappear from the chemorad treatments but it doesn't follow that I didn't have cancer or that my stage disappeared just because my tumor responded so well. Regardless of how well your tumor responds you will always be classified as the stage you were prior to the beginning of the treatments. Your tumor size, depth, etc may be reassessed but you won't be restaged.

Jaynee

[dschreffler]

Hi Jaynee,

Thanks for the info. I'm stage 3 rectal - 3 cm tumor. CT, PET, MRI show only in rectum with 2 nodes questionable. Very close proximity to rectum. Blood test - CEA was 7.3 .

I'm just using the words the Dr have been using - that surgical options would be explored after noeadjuctive chemorad to shrink tumor and then would "restage".

So despite the terminology, are you saying the original staging would determine the surgical options? or are those options determined after another look following the initial chemorad to shrink the tumor?

Any insight on how you made your decision of what surgery and how has it faired in terms of quality of life - bowel control, complications, etc. I'm looking at LAR vs APR for my surgery in the next couple months.

Regards,

Dan

[kimmercans]

I had a LAR with TME (insist on TME...total mesenteric excision ) it dramatically reduces risk of recurrence and can be performed with LAR or APR. My tumor was at the rectal/sigmoid junction but my surgeon removed entire rectum sparing 2 cm above internal anal sphincters. So, I am a classic case for recommending LAR vs APR. I was not prepared for the retraining of bowel habits! I felt somewhat a prisoner to my home or office for months. The only way I could go shopping or out to eat was by taking Lomotil. It's better now....but there was a short period of time (say 4 to 6 weeks post op that I wished I had a bag). All is good now...I have complete control, but I have a bowel movement almost every time I go to the bathroom. Better than being constipated:)

Best wishes!
Kim

[rickker20]

My surgeon did a pull thru surgery to save me from a bag for the rest of my life. If you have the chance to avoid the bag go for it. I was stage 2A . I had 38 lymph nodes remove all cancer free. The pull thru surgery is when they remove your rectum and then pull the colon thru to the anus. This surgery is not done very often. I will get my reversal surgery in May.

[dschreffler]

Kim thanks for the reply!

Right now Sloan says I would lose the internal sphincter if they did LAR given how low my tumor is. Keeping the internal seems like it makes a difference in terms of control.
If you don't mind me asking, how long have you been since your operation until you felt comfortable and not slave to the potty?

Regards,

Dan

[Gaelen]

I'm just using the words the Dr have been using - that surgical options would be explored after noeadjuctive chemorad to shrink tumor and then would "restage".

Yeah, it makes it tough when the professionals - in their attempts to put things in layman's terms - use the language incorrectly. But Jaynee is correct. My MSKCC board-certified CRC surgeon sits on the AJCC staging review committee, and he's been very direct that patients aren't restaged except when they need to be UPstaged (changed by clinical, surgical or patholody data from stage I, II or III to a higher stage.)

So despite the terminology, are you saying the original staging would determine the surgical options? or are those options determined after another look following the initial chemorad to shrink the tumor?

It depends, but yeah - original staging often determines or guides the surgical recommendations.

I am content with the decision that I made to do an APR with permanent colostomy. It likely saved my life. It took about a month to learn how to manage my colostomy, versus 18-24 months (or longer) to learn to manage a reconnected bowel, especially with the complications of post-op chemo. When I had Xeloda and radiation for a recurrence more than two years after my original surgery, I reached a point half-way through where the diarrhea was constant and uncontrolled. I literally couldn't make it from my house a half-hour down the road to the treatment center without having a bowel movement. Without my ostomy bag, I'd have never been able to make it through treatments - heck, I wouldn't have been able to leave the house.

I can't speak for anyone else, but there are plenty of threads on this board about problems with unpredictable or unexpected or uncontrollable fecal incontinence. As someone else said in this thread - if I'm going to have an uncontrollable bowel movement, I'd rather it be confined and hidden to an easily cleanable or changeable ostomy bag. My emergency ostomy kit is smaller than a smart phone and fits easily into a purse, backpack or briefcase. I'd rather carry that than have to carry with me a complete change of clothes at all times - just in case. YMMV.

[kimmercans]

Dan,
I think the whole key to not being a slave to the potty is to consistently have soft FORMED stool. This is a hard goal to obtain when you are going through chemo/radiation (I did not have chemo/radiation before surgery, only after). Both treatments potentiate diarrhea. Through trial and error of just about everything, I found that using Benefiber twice a day and a probiotic twice a day WORKS MIRACLES. No problems whatsoever on that regimine. Now, keep in mind that I am no longer taking chemotherapy and my radiation was completed in January of this year. While I was in treatment, I needed Lomotil every 4 hours the entire time. It gave me the liberty to take short road trips, shop, dine...etc.

Honestly though, if your internal anal sphincters cannot be spared....and you decide on LAR....have a temporay ileostomy until you are finished with treatment.

Best wishes!
Kim

[dschreffler]

Thanks Kim - yep - plan would be temp ileostomy to get thru chemo and allow LAR to heal before actually using it. Glad to hear you are doing well. If you don't mind me asking, did you have simialr low tumor in rectum? How are you doing now with control, etc?

Thanks Galen - appreciate the perspective. I met with Dr Weiser at MSKCC a few days ago and discussed both options.
Control is my main concern, especially after reading this study: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2561075/
30% will have fecal incontinence and that % increases over time.

So far, from reading posts on this board and others, I have seen the following pattern:

1) Those who chose the bag wanted the control and greater margin for cancer removal.
2) Those choosing not to have the bag felt the effort to retrain, manage effects thru med/diet, and the longer recovery/complications were worth not having bag, but I have not heard why that is yet beyond an emotional stigma against the bag(?)

I've made both of these conclusions very simplistic and my intent is not judgmental, but to seek understanding on this big decision for me... hence why I'm asking folk for more insight on why they choose what they did.

Am I making life with the bag too rosy and missing some great burden for maintenance?

[Gaelen]

Thanks Galen - appreciate the perspective. I met with Dr Weiser at MSKCC a few days ago and discussed both options.

Weiser is my CRC surgeon as well. If he does your surgery, you're in pretty great hands. Dr. Sparkly Eyes specializes in minimally invasive surgery, and he hasn't (with me) overestimated his skills. So if he says he can successfully do a sphincter-sparing surgery, he means it. At the same time, if he recommends (as he did for me) that an APR is your best choice for beating recurrence, then he's not kidding around.

So far, from reading posts on this board and others, I have seen the following pattern:
1) Those who chose the bag wanted the control and greater margin for cancer removal.
2) Those choosing not to have the bag felt the effort to retrain, manage effects thru med/diet, and the longer recovery/complications were worth not having bag, but I have not heard why that is yet beyond an emotional stigma against the bag(?)
I've made both of these conclusions very simplistic and my intent is not judgmental, but to seek understanding on this big decision for me... hence why I'm asking folk for more insight on why they choose what they did.

No judgementalism implied nor taken. But that said, I guess it would be clearer to say that I didn't 'choose the bag,' as you put it. I chose an APR, which meant a permanent colostomy, which involves an ostomy bag. Distilling all of that down to 'choosing the bag' is more than an oversimplification. That afternoon, Dr. Sparkly Eyes was telling me that, because of where my rectal tumor was located and how seriously my cancer had progressed with NO symptoms until my liver was almost in failure, he didn't see much point in proceeding with my hopefully curative liver resection if I wasn't willing to take the precautions of an APR to reduce my recurrence chances as far as possible.

To be honest and fair, potential fecal incontinence never even came up and it wasn't a consideration in my decision. I was trying to figure out the most effective surgery to keep me alive.

Am I making life with the bag too rosy and missing some great burden for maintenance?

I don't think so. My 'maintenance' of my ostomy takes me about 5 minutes each time I use a bathroom, which I only need to do 3 or 4 times/day (depending more on how much water I drink, less or nothing on how much or what I eat...) Changing my appliance (applying a new wafer and bag) takes me 10 minutes about every 5 days. I can and have changed my ostomy appliance in an Amtrak bathroom while the train was moving, in a public restroom at a campground, and even in a porta-potty at a dog agility trial. It took me about two months to get that good at changing it quickly. My emergency supplies fit in a zipper bag about the size of an iPhone. When I travel, I make sure to carry enough supplies to get me through the trip, with some extras, because you can't really walk into a regular drugstore and buy extra ostomy stuff in most places. So I have the equivalent of an extra 3-1-1 ziploc bag to pack when I travel. It's just not a big deal at all.

Is it a mental adjustment? An emotional adjustment? A self-image adjustment? Yeah. I'm a woman, and there are moments when I don't feel beautiful, or whole. But a huge part of that is about the cancer, not the ostomy. And those moments only come on once in awhile. We all have them - ostomy or not - but I'm working on mine. I'm not beauty queen ostomate or mountain climber ostomate or surfer girl ostomate - but I'm doing ok, and the amount of stress my ostomy causes me on a daily basis is minimal to none.

The main ostomy drawback I've experienced, Dan, is that because of my posts about ostomies on this board, I've apparently earned me a blog spammer (who knew?!?) My spammer is pretty troubled about her own ostomy, was permitted to post a few anti-ostomy posts here as a guest, and now makes filthy, insulting anti-ostomy comments on my blog after I answer any ostomy-related post on this board. Ah well - that's why blogs have spam filters and who-is service lookups allow bloggers to report individuals to their internet service providers. Other than that, Dan, no drawbacks and no over-rosying of the options.

Hope that helps. Tell Dr. Weiser that I said hello.

[weisssoccermom]

Dan,

I'm sorry I missed your post but Gaelen did a great job of explaining my point. To put everything in a nutshell, yes, your clinical staging almost always determines how you are treated - surgically and in the adjuvant setting. Think of it this way.

Suppose you presented with a T3N1M0 rectal tumor. That would put you at a stage IIIB in the clinical setting. Fast forward and you have the standard course of chemoradiation. Your tumor responds very well and surgery is performed. The surgical pathology report shows the tumor to be a T1 and no nodes are postive. Now that would place you as the following pT1pN0M0. This pathology report, all by itself, would indicate that the patient is a stage I. Here is the big difference. A stage I rectal cancer patient almost always has no further treatment (unless there are some negative prognositic factors). The patient is done and goes about his/her business and hopefully keeps his/her followups. However, herein lies the problem. This patient (hypothetically you) presented with a tumor that had gone through the muscle layer of the rectum and extended into the perirectal fat and you had at least one suspicious node. Now, the radiation did it's job - it shrunk the tumor and sterilized the immediate lymph node area. Great! However, your clinical staging indicated a positive node and even though you had radiation to the pelvic area and it appears that the radiation did it's job sterilizing those nodes, there is still the significant chance that some cancer cells 'escaped' the pelvic radiation field, via the lymphatic system, and could be traveling to other parts of your body. I'm not saying that they are - just that the chances are there. The doctor is already fairly positive that the cancer was in the lymph system (based on your clinical staging) and once the cancer is there, you must assume that it could be somewhere else in your body - waiting to find a place to settle. This is precisely why adjuvant chemotherapy is undertaken for a stage III.

My point is this. While chemoradiation does a fantastic job of shrinking tumors and sterilizing the nodal field, it also can give a patient a false sense of 'security' that everything is gone. Chemoradiation only kills the cells within the radiated field and if one microscopic cell either left the area prior to treatments or 'survived' the treatments, those cancerous cells won't go away without further help - in this case adjuvant chemotherapy.

Gaelean is quite correct. A person can be upstaged (ask NWGirl - it happened to her) from the clinical setting and it can happen where a patient is truly 'restaged' downwards, however, I've only heard it happen when there are differences of opinions with the clinical ultrasounds and then usually an addendum is added to the patient chart. I've heard it happen twice and they were both with very early stage patients where: no nodes were present and where the minutest of millimeters made the difference between a T2 and a T3 tumor (stage I/stage II). Even in my case, where two docs feel that I was a T2 from the clinical ultrasounds, but the original doc who did the test said he 'erred on the side of caution" and charted me as a T3 - my stage has remained in my chart as a stage IIA. As my surgeon stated, 'it's not worth rocking the boat over'. Formally changing my stage in my medical records could open a pandora's box - for example, the insurance company could come back and state that chemoradiation and/or adjuvant chemo wasn't warranted for a stage I.

As for help in your decision, unfortunately I can't help you with either as I had a different type of surgery. You're going to have to go with what others on the board have to say about the control issues, LAR v APR, etc. Good luck though.

Jaynee

[James65]

D--

I was 40 when diagnosed with a stage2/3 rectal tumor about three centimeters from the anus. I did not really go through very much introspection as to whether I should have a bag or not. I have two young kids and I told my doctors that my goal was to see them graduate school and however I go there it didn't really matter.

I did the chemorad and then prepared for surgery not really knowing what would happen. I was told that most likely I would end up with a bag, but that didn't bother me as much as being told I would likely have erectile dysfunction. I was also single at the time so it all was tough, but my goal was life and one where I could still be the person that I am.

As it turned out I now have a permanent colostomy. It was a difficult adjustment, but I still have my life and I can go anywhere as long as I have a bag (easier to carry around than a whole bathroom). I swim, jog, hike, play golf, make love and pretty much do everything I used to do. I even met a woman and got married.

So in the end, if the decision is up to you and not the cancer (e.g. location and stage) then there are up and down sides to both. I would focus on what will enable a full cure (no recurrence) and a full life. For me, that meant ensuring the margins were clear (they were) and ensuring the surgery was done well and follow up therpy (chemo included) helped me recover and reduce further the risk of recurrence.

It has now been nearly 5 years since my surgery. I do have some minimal erectile issues, constipation is a real issue (due to chemo), and I continually have to adjust to having a bag. But I have my life and am in my kids' lives and despite the recession taking my work and money away, my life is good even with a bag.

I hope this helps.

Best,
James

[Jen]

Mine was rectal IIIC 4/33 nodes ..but mine was 10cm from the anal verge so there was an argument about colon vs rectal. They decided it was rectal and treated it as such. I had a LAR laprascopically mesorectal excision then followed by chemo then radiation --not standard or in the right order due to fertility choices. But regarding the surgery as you know, the goal is good margins, and lots of nodes and surrounding tissue to get out and examine.

I don't know much about APR but I read later that mesorectal excision has yielded better survival ...but that may just be a medical procedure term and they can do the same with APR....

My rectal muscles are very messed up, but it is manageable and as each year passes it gets better. I actually noticed I hadn't been packing immodium and diaper cream in my purse for a while

[wombat]

Dan,

Thanks for jump starting interest in this post. I've now finished up my neoadjuvant treatment and meet with my doctor on Monday to see how things went. As I mentioned at the outset, my tumor was sitting low - it was extending into the anal verge. If the tumor has not shrunk sufficiently, I will not have a choice - I'll be getting an APR. Now, it the tumor *has* shrunk enough ... then I have the same difficult choice. I've been holding off on digging through more literature until I know that there is a choice to be hand, but mentally, I've prepared myself that I'll be having an APR and a bag. After visiting the Mayo Clinic and having everyone there say flat out, without hesitation, to get an APR no matter what happens with the tumor, has put me in the position where my local surgeon has to talk me out of getting an APR. For me, the biggest concern has been local recurrence rate. If the CA comes back locally, I understand it's not a good situation and it's something that I would to avoid. The incontenince concerns are important to me as well, but I don't want my life having been cut short because I had hang-ups about a bag. From everything I've read and heard, there's an adjustment period with having a bag and that most of that is mental/emtoinally, but that you can pretty much live life as you did before cancer. Now, would I love to never have cancer recur AND not have a bag - YOU BET!

Interesting that you've heard from your docs at Sloan that the recurrence rates for APR/LAR are similar. Who's your doc? Could you point me to any studies that you may have read about this?

Thanks ...

Doug

[dschreffler]

I'm cross positng this from the UOAAA site.. but it applies here unequivocally!

You folk are incredible. I've always been positive and believe people alway do the right thing, but the courage to tell a complete stranger your intimate stories is over the top. Wow - thank you!!!!! Anytime I hear someone says "the world is going to hell in a hand basket" - I'll dope slap em for missing out not knowing you all!

Some follow up - the word "restage", I learned is mean in reference to the tumor - the Tx, and not the entire cancer, so as pointed out, cancer stage never down graded. But is an appropriate term as seen in study published by MSKCC. I just needed to put it in the right context.

I've also learned there are very little studies on longer term quality of life with these choices, so your experience sharing has huge value to me. I'm one of those people who researches consumer reports and 10 other sources before I buy a toaster oven, so I appreciate the patience and sharing you have all provided. Once I make a decision I won't look back and understand each situation is different, no guide book/right answer. I'm in data gathering mode so appreciate what you have provided to me.

[dschreffler]

Interesting that you've heard from your docs at Sloan that the recurrence rates for APR/LAR are similar. Who's your doc? Could you point me to any studies that you may have read about this?
Doug

Doug: Thank you for starting the post and "allowing" me to hijack! Here is the study: http://www.ncbi.nlm.nih.gov/pubmed/19212176
The Dr I spoke to at Sloan was Dr Weiser.

Gaelen: He does have some pretty blue eyes - as my wife pointed out too! I have a co-worker whom I known for 18 years now and he has had an ostomy. Never stopped him, hence why I think the idea of having one was not as scary as other issues potential with LAR and did over simplify my phrasing of this issue. I hope I didn't appear too insensitive to anyone. Nice blog btw!