The Colon Club

Hi,
I am a 41 year old male with a wife and two children.

I was diagnosed with T3N0M0 rectal cancer on 3/23/17. T3 tumor of 4.5 cm, non circumferential in distal rectum, 2.5cm from anal verge. I am starting chemo and radiation next week after which the surgeons I am seeing are recommending a permanent colostomy because of the location of tumor. They say that they can't be sure if the cancer is cured unless they take out the entire affected area (resect the entire rectum) leaving me with a bag.

If the tumor disappears after chemo and radiation, should I necessarily go into surgery? Or should I adopt a wait and watch approach? Are there survivors who just did chemo and radiation and refused surgery? Colostomy seems very drastic and I am worried.

----
Dx 3/23/17
Stage 2 Distal Rectal rumor, T3N0M0
Chemo/Radiation with Xeloda/IMRT starting 4/18
in line for permanent colostomy- trying to avoid

Colostomies are not as bad a thing as you probably imagine. Once you get used to it theya rent that bad at all.

And a colostomy is certainly better than cancer coming back and future health problems or death.

I would go for surgery.

You could try for a very close watch-and-wait, but that's pretty risky. Colostomies are not that big a deal, after an adjustment period it's just one more part of one's hygiene routine.

Hi,

I might be wrong, but I think surgery is the best chance for cure. I know radiation in some people totally destroy the tumour, but I believe total removal is the way too go.

I had a bag for nine months, and they are very easy to manage etc etc but in my line of work, mechanic they are not viable. A lot of bag splits, leaks conducting repairs.

You are relative early stage same as me so your survival aspects are very good. You are also young.

Don't take this decision lightly as in the future if your cancer progresses it could mean a lot more surgeries and spread and the whole process even longer and more complicated. It's not an easy process at stage 2 either.

Tough decision.

Have you gotten a second opinion on the surgery? There are many surgeons who specialize in sphincter sparing surgery. My tumor was very low but the surgeon had no issue removing it without the need for a colostomy. That being said, I didn't find the temporary ileostomy that bad, but I knew it was temporary.

Almost 11 years ago, I was diagnosed with rectal cancer....T3N0M0. I saw so many different surgeons....the first, a board certified colorectal surgeon was (no pun intended) an assh**e! He told me that I had an 80% chance of a colostomy and that I had no choice in the matter. HE would decide what was 'best' for me. Needless to say, I didn't like the guy AT ALL! I then went to see another surgeon affiliated with Fred Hutch (Seattle) who I assumed was a board certified colorectal specialist...she wasn't. She gave me an 80% chance of NOT having a colostomy BUT warned me of the problems with the LAR surgery. I'll be honest with you.....I didn't want a colostomy, and I REALLY didn't want to go into surgery not knowing one way or another what to expect. I opted for a different path....one that would avoid BOTH surgeries. I have to warn you that REFUSING a surgery isn't as easy as it seems. Yes, you have every right to do it BUT....the doctor will likely NOT want to take care of you if you do. It was a roller coaster ride for me to find a doctor who was willing to do the older version of the Habr-Gama W&W protocol.

First of all, finding a surgeon who will 'work' with you isn't as easy as it seems. Secondly, you need to have an onc who is on board with the 'non-standard of care' procedure that you may want to do. I did a TON of research, contacted Dr. Habr-Gama and Dr. David Medich in Pittsburgh, researched any studies that I could find and THEN presented MY case to the surgeon. Here's what I ultimately did and I have to tell you....IT IS NOT FOR EVERYONE.

1. I went through the requisite chemoradiation treatments
2. I went through 5 more months of chemotherapy
3. At this time, my tumor was 'clinically' gone so I underwent a transanal excision. Still I had a 'plan'
(a) If, after the excision, the pathology showed that the tumor was still staged as a T3 (remember it's about tumor depth not just what the surgeon can see on
exam) I would undergo the 'standard of care' surgery
(b) If, after the excision, the pathology showed that the tumor had shrunk but was still a T2....I would decide but would likely do the standard of care surgery.
(C) If, after the excision, the pathology showed that the tumor had shrunk but was still a T1....likely would just proceed with more chemo
(d) Anything less than a T1....i.e. microscopic cells.....would mean more chemo
4. I agreed that IF I stopped after the excision, I would undergo at least THREE years of meticulous and tedious follow ups....which would include CT scans, rectal
ultrasounds, blood work and flex sigs....usually every three months. (I would alternate the ultrasounds and the flex sigs).
5. I was flat out told that it was highly unlikely that there would be NO cancer cells detected and I understood that lymph nodes are not taken out (sometimes, as in my
case, a few were gathered up in the specimen). I was also told that likely more chemo afterwards.

It wasn't an easy decision but one that I felt was best for ME.....and I fully recognize that it ISN'T the best decision for everyone. I will tell you this, though. Unless you have people who will agree with this...surgeons and onc....it isn't the best way to go. You don't want to alienate a surgeon who you may need down the road. Talk to a surgeon that you feel might be amenable to working with you but if the one you have isn't that person....please, don't just refuse surgery.

Again, MY decision was the best one for ME....it isn't necessarily the right decision for everyone. I had my surgery 10 years ago on the 20th of this month....my last treatment and I have been fine. The followups certainly were not easy but it was what I had agreed to. My best advice ....TALK TO THE SURGEON AND BRING UP YOUR IDEAS. Then go from there. Good luck.

Go one step at time, see how you respond to chemo/rad, have ct, mri and scope couple of months after, re-stage it, than go from there.
Your stage is considered curable with surgery.
W&W approach is risky, but every thing is risky in life, you have to be able to live with it.
25% of people respond as ccr to chemo/rad, and if you get into that group, consider yourself lucky, get second opinion, but you will have to make dessicion, it will not be easy.

Initially when I started chemo/rad, my hope was to be in that group, but when it came down to dessiccion time, I was stressed that week, not easy week at all.

Right now focus on how to get most out of it. People that are active during chemo/rad time have better chance of survivall, some 12, 13% more than people sitting in front of tv.
Dont over kill it, I walked every day 4-5 km/day, rain or shine, in the begining went to gym, over killed it, felt it for couple days, learned my lesson.

The only thing that I took before chemo/rad was beta glucan, stopped it one week before therapy, was told to avoid anti oxidants during therapy, did that.
Was told to drink a lots of water, did that, you will have initial swelling with radiation, thats normal, I was afraid that I will have obstruction, bowel movment was like a pencill, drinking water helped me.

Made my dessiccion, going for W&W, it is not for every one, my surgeon said that he will check me every 3 months , ifanything, surgery will follow.
Folfox therapy should take care of any small cells, if any, but there is always posibilitty, but right now my focus is how to make the most out of folfox.
After that will focus how to prevent cancer from ever coming back.

Good luck to you!

I have been on this site for almost 4 years and I have not seen any watch and wait that are NED for over 5 years. It's a fairly new approach.

The people who tried it and died. like Ezra Caldwell, aren't here to weigh in their opinions.

http://ezracaldwell.com

(His cancer blog is no longer active, unfortunately... he described watch and wait as a "clear mistake.")

I, too, was bargaining when I was first diagnosed. It's hard to wrap your head around this. I kept talking to my surgeon about my chances of avoiding a colostomy. One day he said, "This is about saving your life." The fact that you are describing standard procedure as "drastic" shows that you are still in denial about your risk of dying from this. Read some of these posters on here that are battling for their lives and really let it sink in. I think you are better off looking for a surgeon that can avoid a permanent colostomy than thinking about avoiding surgery altogether. I don't regret my decision at all, but I am a IIIc which is a much worse prognosis. I was told I had a 15% chance of avoiding a colostomy, but once it really sank in that I could die, I told my surgeon right before the surgery to do everything he could to give me the best chance of a cure. That's what you should be thinking about. Give it time to really sink in.

If you had a 4 out of 100 chance of catching Ebola by getting on an airplane, would you only be talking to the people who didn't get it? Would it be enough that there was a pretty good chance you won't catch it? Would someone telling you they didn't catch it be reassuring? Would it seem drastic to not get on the airplane altogether? You only need to leave behind one cancer cell to die. It isn't drastic to eliminate that risk by every means possible.

You wrote: "A colostomy seems drastic."

I comment on this site about living with an ostomy - having a permanent ileostomy myself and giving perspective on living with an ostomy out of respect, friendship, and beloved memory of Belle (NWGirl), a beloved former member of this forum.

You can research Belle's personal blog about coming to her decision to elect a permanent colostomy here on this forum. Belle wrote a compelling and heart-rendering narrative, a 3 Part series, titled "The Colosotmy Collundrum." Belle wrote this 3 part narrative with the hope that her words would reduce the stigma associated with a stoma and an ostomy. I highly recommend its reading. Just search for her blog using the search feature.

The world lost a bright light with Belle's passing.

I have a permanent ostomy due to a severe intestinal perforation owing the years of prednisone. My intestine unzipped like the zipper of a rain jacket. My hospital stay was 46 days. The recovery was grueling.

Living with an ostomy, for me, is no big deal. I rarely give it notice in a day. I wear a small pouch by Coloplast that is composed of an elastic polymer. The result is a pouch that is thin and low profile, flexible and moves with my body. I practice yoga every day and my ostomy pouch does not hinder me in the slightest. Of the many health challenges I deal with, the ileostomy is the least of my concerns or troubles.

A colostomy is much the easier to care for as compared to an end ileostomy or a loop ileostomy. With a colostomy, you can expect that your bowel routine would be essentially the same as it is now. That is, is you have a bowel movement once a day now, you will likely have the same frequency post surgery. With a colostomy, you have the option of wearing single use, disposable ostomy pouches. When you have a bowel movement, you simply remove the pouch, toss it into a plastic bag, and place into the trash. You then place a new pouch. Easy peezy. No mess. No fuss. You never carry a pouch with feces on your abdomen.

Colostomates also have the option of irrigation. This involves flushing the lower colon with warm water once a day similar to an enema. Irrigation allows individuals with an ostomy to be pouch free or near pouch free.

People have ostomies for a variety of reasons. Chron's disease and ulcerative colitis are two conditions that can result in an ostomy. People of young ages with Chron's and ulcerative colitis have ostomies in their 20s. An ostomy is not reserved for the frail and elderly. Ostomy pouches do not make noise or crinkle. Ostomy pouches are odor free and amazingly secure. You can swim and water ski with an ostomy; you can bike ride and play racket ball; you can wear your normal clothing, including jeans and fitted shirts. There is a good life to be lived with an ostomy.

Come to the United Ostomy Association of America (UOAA) forum and visit with individuals with ostomies. We have several regular posters in the UOAA forum who underwent APR resections and ultra low LAR resections and who are currently NED. I think they will tell you that deciding on surgery was the right choice for them.

In particular, seek OTDave. He is a 37 year old rectal cancer survivor, 7 years NED, post APR. He had two young children at the time of diagnosis. He is an avid outdoorsman. Having an ostomy has not changed who he is.

www.uoaa.org

- Karen -

I was dx in July 2007 as Stage T3. I faced the same decision. I asked my doctors what would happen if I refused surgery. They responded:

Surgeon "you will die!"
Rad oncologist "I won't be part of a treatment plan like that. You'd need a different radiation oncologist."
Chemo oncologist "Wouldn't be good."

I had chemo preceding surgery in Nov 2007. I had the most terrible side effect I've ever seen described on here. My chemo oncologist commented: "if it whacks you this hard, that's good. That means its effective on the tumor as well." I had surgery in Nov 2007 with clear margins. The chemo/rad did not completely eradicate or kill the tumor. My tumor was so close to the anal verge that I didn't have an option for a transanal excision.

Recently, I had a followup with the chemo oncologist. I asked what has changed with treatment plans over ten years. He said: "we are not as quick to jump to APR surgery as we used to be. Sometimes we give it a little time and see how things are going."

After being released and going home, I was downtrodden about dealing with a colostomy. It's new, and weird, and of course a private experience. Initially I wondered if dealing with that was going to be worth it for the rest of my life. But those thoughts were overblown. Within a short time, I was doing daily "irrigation," which is a morning flush of all the contents of my colon. Then, for 24 hours, my world is just like it used to be, a little better here and there and a little worse here and there. I don't have many "poop issues" like I did before dx, but I have an occasional goof or slip here and there. All in all, not bad.

If I had to do it all over, I'd use the same process. Cancer is something inside you that is deadly, and there is a constant risk it will spread somewhere else. For me, I couldn't get the tumor out fast enough. Looking back, I'm skeptical that W&W would have worked or been beneficial for me, and it would have given the cancer more time to spread. If you feel that the concern about having a colostomy is affecting an otherwise objective decision, I'd reach out to some of us that have experience. The "stigma" about this procedure still exists, but it's important to understand that stigma grew over time when much less effective pouching decisions existed. My view is I transitioned from a rectum made of tissue to one made of plastic.

I would do whatever it takes to get the best chance at a cure. I would not want to deal with cancer again and the fear of death. You are lucky there is a surgery option and a possibility at cure. I had a temporary stoma and i would take a permanent one if i had to. I had a double mastectomy mostly for prevention since i am so prone to cancer (gene mutation). I understand your dilemma, i do. It's terrible we are faced with such awful options. What i believe though is that we get used to most things and a stoma isn't the end of the world.

Hi,

I am wishing you well as you process all this information. I know there is a lot of opinions, but really looks for evidence and studies. Cancer treatment has come a long way from cutting out as much as possible. Suggest getting multiple opinions on surgery approaches. You have time, and will really come down to how tumor reacts to radiation and chemo, when you will be restaged.

In 2010, I had transanal excision surgery for my T3,Nx,M0 RC, after a great response to neoadjuctive chemo/radiation. Procedure was an outpatient, was relatively easy recovery. It was followed by 12 rounds of FOLFOX.

No evidence of disease since 1/26/11. I avoided colostomy. Post treatment surveillance was frequent to ensure cancer removed - quarterly scopes, annual CAT's for 1st 3 years.

I am happy to report I am in good physical health, any side affects have been chemo ("cancer brain") issues. Otherwise, surgery was largely a non issue and no real impact as pre or post surgery on quality of life much the same.

You can get full back story at: http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=53560

What is the neoadjuctive (pre surgery) protocol Dr's suggesting? The clinical study I was in data shows that radiation and Xeloda was effective for pre surgery, no need for Oxaliplatin. I'll dig up the link.

Wishing you the best.

This thread reminds me

viewtopic.php?f=1&t=56594&p=447507#p447507

See this thread on Watch and Wait:

viewtopic.php?f=1&t=53498

muskokamike wrote:This thread reminds me

viewtopic.php?f=1&t=56594&p=447507#p447507

I never liked when I was making my decision back in 2010 when folk simply presented the option as one of 2 extremes.

What I found is that it depends - what is the individual's responsiveness to pre surgery chemo and radiation, where is location of tumor, type of cancer. The studies support this.

I had 3 different opinions from Dr's from Sloan Kettering, John's Hopkin's and my local hospital. Sloan and Hopkins were driving the 'gold standard", more evasive options, while my local Dr said, let us see how you respond to neo adjuctive, and then make a decision. I was accused of shopping for an outcome I wanted according to a poster in 2010.

In my case (and everyones results will vary), the chemo and rad did their job, the TAE worked, and there was no cancer found in the removed portion - "good margins".

So so me, to have more radical surgery for no gain would not have been the best choice. Post cancer quality of life matters, and I am not saying that your can not have a great quality of life with a colostomy - and I was willing to do that if needed - but why go the route if not needed. Similar to breast conserving surgery and radiation vs total mastectomies.

The other advice I got back in 2010, was a reminder that surgery is also not the only thing that will help to ensure a cancer free life, and overall good quality of life --- change of life style that includes eating right (food, more plants, less meat), not smoking, and getting exercise is also part of the package.

Hope this helps,

Dan