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Wait and Watch vs. Radical Resection

falcon08
Posts: 5
Joined: Mar 2008

I have Stage 1 rectal cancer at age 39. To date there is no sign that the cancer has spread to my lymph nodes or other organs. I know testing is not 100% so I am at risk for the cancer coming back. Can anyone give me advice on the following? Effects of Radiation and chemo for stage 1 after an anal excision, life after a radical resection, or making the decision?

Jaime4
Posts: 21
Joined: Mar 2008

I'm 46 yrs old and had surgery 6wks ago for rectal cancer, stage 1. They removed half my rectum and 3 inches of the colon. They told me they could not give me a stage until after the pathology report came back. I did not have to have chemo or radiation. My margins and 12 nodes were clear. There are definite changes in bowel movements and it takes time to get use to. I'm still in the learning process on what I can eat and how much. My doctor said he would be aggressive with my surgery because of my age, so I chose to do the surgery. How do they know your nodes are clear without a pathology report? Did they do some sort of test? I hope this helps. I'm new to this as well and I still have many questions. I wish you the best of luck.
Christine

falcon08
Posts: 5
Joined: Mar 2008

Christine,

Sorry if my last post was confusing. My nodes look good, but because no test is 100% I am seriously considering treatment beyond my local excision. I am terrified at the thought of what surgery might do to my life (I am fully aware that cancer coming back or spreading is much worse). Can you leave the house after this type of surgery? Do you always need to be near a bathroom? I expect that they will need to take my entire rectum out. My tumor was 6 mm from the bottom. Anyway any info or websites offering support would be great. Best of luck with your recovery. Susan

Jaime4
Posts: 21
Joined: Mar 2008

Susan,
I also feared the aftermath. I chose to be aggressive due to my age to give myself and my family a better chance at removing as much of the cancer as possible. I started going out last week but I make sure I know where the bathrooms are or make sure I try and use one before I go, although I'm still very irregular. I did not need a colostomy. It is a personal decision you and your family need to make. It is a frightening path but it is a very treatable cancer and you are blessed to have caught it in such an early stage. Good luck with your decision. I have been a member of this support group for 4 weeks now and have found it very helpful. A lot of wonderful people in this group. Please keep us up to date on your progress. Christine

kirsten1's picture
kirsten1
Posts: 23
Joined: May 2007

this is just my personal opinion/experience. I am 34 with stage III with lymph involvement...I had chemo, radiation, resection, then chemo again....it was a VERY long hall to say the least...I had treatment non stop for a bit more than a year... I obviously had no choice.....given the choice, I would NEVER choose radation and chemo. the longlasting effects on my body are numerous, not just related to going to the bathroom, neuropathy in my hands and feet, night sweats, bottom pain....I am only six months out of treatment and pray that each day my symptoms go away, but no doctors can say for sure if they will or not. I personally would have a very long talk with your onc. prior to making that kind of decision....why not just continue to keep a really close watch, as the above treatment doesn't guarantee there won't be a recurrence either....Also, if you decide to do treament like radation, often times you can no longer use that option in the future if something else we occur just my thoughts, hope it's helpful.

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Hi there! If they take your entire rectum, you will have to have a permenant colostomy. I have a temporary ileostomy which is much different as far as consistancy and control of flow. I read up on everything i could as soon as i found out i was getting one because i was horrified. I read that depending on how high up the ostomy is, with practice and time, you can learn to control or predict when you're going to have flow (something you can't do with an ileostomy), and there are devices that you can wear that will allow you to go swimming, and do sports, and be as active as you want to be. Everyone i've talked to personally that have a permenant bag say you do get used to it, and can live an absolutely normal life.

The truly upside to the ostomies is that you DON'T really need to be near a bathroom! Just carry extra supplies with you. After a while you get very good at changing or emptying the bag, even in public restrooms. I can do mine in less than a few minutes, and with colostomies, they have bags that you simply snap off, and throw away. Before your surgery they will set you up with a woundostomy nurse who will teach you.

I always swore that if i had to get a permenant bag i wouldn't do it. I'd take my chances with a recurrence. But now that i've had experience with one, i would go permenant if i had to. Though this is a very treatable cancer, people are still dying from it. I am also 39, and not quite ready to go that way.

Good luck to you in your decision! Oh, try doing a google search on ostomies. You'll find tons of stuff!

Many hugs,
Krista

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Sorry to diagree, Krista...but I not only lost my entire rectum, but my sigmoid colon, too. I was given a 'new' rectum, fashioned from my descending colon....3 years later, it's like I never had anything done...just got to find a surgeon who specialized in 'J-Pouch' proceedure...of the large intestine...mine was at UCI Medical center in California...he's very well known...

I didn't even need a temporary ostomy...I was 'using' my new plumbing right after surgery...

Hugs, Kathi

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Now, if the spinchter is removed, well, then it's a guaranteed colostomy...this is muscle tissue, sort of the 'gate' that keeps things from spilling out till you reach a toilet...

Hugs again, Kathi

brn2ride's picture
brn2ride
Posts: 32
Joined: Dec 2007

I am 46 and was/am in the same spot as you. I had an excision and was told by the surgeon that my best chance for a cure was to have my rectum and spinchter removed which would mean a colostomy for the rest of my life. I spoke with another surgeon and my family doctor who all agreed that my best CHANCE for a cure was the radical surgery. Being somewhat unhappy with that diagnosis I went to an oncologist who went over the biopsy with me. He told me that the standard treatment for my conditon which was stage 1 rectal cancer with no nodes affected was to have the whole kit and kaboodle removed. Fortunately he also talked about my other option which was to wait and watch. He said it basically came down to my tolerance for risk. with the surgery there was less risk of the cancer recurring than with the wait and watch approach.
I am on the wait and watch approach.
I had the excision nov 2007 and just went in for a flexible sigmoidoscopy that showed no areas to be concerned about.
The oncologist recommeneded with the wait and watch approach to have quartely flex sigs and an annual colonoscopy. The surgeaons and the oncologist all told me that there was no need for chemo or radiation and in fact the oncolgist told me there was nothing more he could do for me.
What I did do was change my diet and exercise habits drastically.

diet very little red meat, very little sugar, very little over processed grains.
I take some herbal supplements such as ginger, flax seed, and turmeric. I eat lots of fresh veggies, greens, and fruit.
I exercise daily.
there is a lot of good nutrition info out there and I have gooten some from this list as well.
I read the book beating cancer with nutrition which has some good stuff in it and also some that I choose to ignore.
I found a new GI doctor for aftercare and actually feel better than before the excision.

One surgeon told me that even though the nodes didn't show cancer that there was like a 30% chance that it could have skipped those nodes that were tested and moved to other nodes, to me that said there was a 70% chance that it didn't spread. There are enough cases of people having surgery that didn't need it that for me the risk was worth taking.

Every case is different and for me it came down to makeing a choice and then going with it. so far I have been happy with my choice only time will tell if it was the right one.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

All I can say is this is a very personal decision. If I were you and even considering this surgery I would go to a major cancer center such as MD Anderson to do it. That being said, I would not do it at this point. I would take the risk that it possibly might come back, but rather than thinking of it that way, what if it doesn't and then you had this huge life altering operation out of fear of the unknown. I don't know what your lifestyle is like, but I would take this opportunity to do everything in my power to prevent recurrence naturally. Diet, exercise, consult a N.D. who specializes in cancer patients, etc.
JMHO,
Susan H.

TY2HC's picture
TY2HC
Posts: 49
Joined: Mar 2008

I was diagnosed at 27. My cancer was a little further up in the sigmoid colon. I had a partial resection done. Recently, I had another colonoscopy done in which they found a polyp with precancer cells in it. I decided enough I need to change something here, so I went to see a Nutritionist that works with cancer patients. I am going to put what I learned on my website (http://www.tooyoungtohavecancer.googlepages.com) if you would like to take a look. Part of what they told me is to take fish oil tablets (or eat more fish), take vitamin B-100 complex vitamins, and eat yogurt with probiotics in it.

But I do agree seeing a nutritionist and consulting your Onc is important if you are going to wait and watch. If you do go to a nutritionist, go with questions already in hand. Mine gave me a ton of resources and a diet plan. It was too much to digest in an hour.

I wish you all the best!

Sincerely,
Chris

rmap59
Posts: 266
Joined: Jun 2007

This decision is really hard but my advise is pray,pray,pray, that is how I made my decision. The surgery was pretty much a given because I had a huge rectal tumor but the treatments were recommended by my surgeon to go from a 30% chance of reoccurance to 15% so in my mind I needed to do whatever it took to be at rest with my decision which was to continue with chemo/rads. It was a hard road but luckily I have no lasting effects except bowel irregularities which are probably from the surgery more than treatments. Follow your heart and pray to your higher power.
Prayers to you, Robin

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

There's something paradoxical about the current standard of care for stage 1 rc. The recommended treatment may be more severe than what is recommended for more serious forms of the disease. I had stage 2 rectal cancer, yet there was never any talk of a colostomy. As best I understand the situation, the deal is this: someone like me has to roll the dice. I had pretty good odds, but it's still a crap shoot, and a colostomy wouldn't help my odds. But stage 1 patients don't have to play the odds at all -- for them there is a curative treatment. And that curative treatment is what doctors are obligated to recommend, even though without a colostomy, your odds of survival would be better than mine.
-greg

falcon08
Posts: 5
Joined: Mar 2008

First off I am so grateful to all of you for taking the time to respond to my question. All of your comments, information and well wishes have been helpful.

I do know that if I go ahead with the surgery they can leave my spinchter and they will do a transverse(sp) J pouch (in other words they will create a rectum with part of my colon. I have been to two top doctors in the field. It sounds like all of you who have responded have not only made peace with your decisions, but are having success with your new 'plumbing'. That gives me great comfort.

I will continue to heavily research both options. If anyone knows of a good nutritionist on the east coast let me know. I want to find someone who specializes in cancer fighting nutrition for colorectal cancer. I will be more than happy to post my findings for all to benefit from.

I will also look a little deeper in to the surgery. All information on the success, failure and workarounds are welcome. I am sure there are lots of folks out there that would love to hear your stories.

Thanks again,

Susan

wesparris
Posts: 11
Joined: Apr 2007

I had my entire colon removed except for only 7 inches of rectum. They call this procedure an IRA (they connect the small intestine to the remaining rectum), and I went to a mjor teaching institution in New York (Mt Sinai) to have it done by one of the best doctors that does a ton of these things. I had this done in September, and was back at work after 2 weeks, and after 1 month everything returned to normal, except I have 3 bowel movements a day versus the 1 I used to have before (but no urgency, so I never need to plan life around bathrooms). EVERYTHING else is like it was before surgery, and I can eat whatever I want. I don't know how "low" your problem area is in the colon, but I know this doctor has great results as long as he can save at least 6 inches.

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Susan,

You have gotten alot of good advice. Making the decision is very difficult as there is no "right" decision. You are asking alot of questions and that is good.

I was diagnosed with Stage 2 rectal cancer and it was just at the sphincter. Two surgeons advised that radical surgery and mine said no, do a local. My oncologist recommended chemo/radiation first and I did that. At the time of the local excision no cancer cells were found. However, I believe my tumor was larger than recommended for that type of procedure and my surgeon didn't excise enough and the tumor came back. Then I had the radical surgery. While it is daunting to think about the reality is that one gets used to dealing with the colostomy quite quickly and you can live a normal life.

If I were you I would be inclined to have the local excision and then close followup to include rectal ultrasound exams every 3 months. That is how my recurrance was found. I would not be inclined to have chemo/radiation with Stage 1.

Good luck in making your decision and once made, don't look back.

Dick

hopefulone
Posts: 1048
Joined: Jan 2007

Hubby , stage IV, liver mets . Colon resection no colostomy. DX in the sigmoid section. Resected in Jan 07. Currently NED after liver resection in Oct 07 . I think everyone's case is different. Having said that, I urge you to get several MEDICAL opinions . I'm all about support on this site and personal experience. (Just read all my previous posts) I'm also all about researching and being your own advocate,(It paid off big time in our case) but I really think you should also get several medical opinions on a course of action if you haven't already and then follow your gut making a decision! Once you do that, I agree with Dick, don't look back. Good Luck and God Bless
Diane

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