Concerns about Total Colon Removal for Small Lump - Need Advice

About 9 months ago, I had surgery which successfully removed cancerous tissue from my colon/rectum. This left my colon temporarily disconnected, and I had a 'temporary' ileostomy with a view to future reversal.

Having recently completed 5 months of chemotherapy, I have had a CT scan and various blood tests, all of which have come back as normal.

As a precaution, my surgeon referred me for a full colonoscopy. I had this performed a couple of days ago, and a small lump was found in the transverse colon, and biopsies were taken for testing. I was taken completely by surprise and was worried enough to contact my surgeon even before I had the test results.

To cut a long story short, he told me that if the tests proved cancerous, then the only option would be to remove the ENTIRE COLON!!

I was so gob-smacked I was speechless! How can a small lump result in this? Why not perform a resection, as I'd had previously, to remove the lump and reconnect the healthy tissue?

It seems a bit drastic to even suggest this course of action for such a small lump (apparently too small to be detected by a CT scan). It has left me wondering about the competence of the surgeon, and I fear for the future. I pray the tests come back as benign. Any comments that may enlighten me would be much appreciated.

Hi Redmans, you might think it's drastic and your surgeon could be right. What if they stitch the healthy bits, then another lump? I have had 8 surgeries, it's no fun at all. I lost my whole colon because the disease ruined the rectum in 2008. I hear what you're saying, are you after a reversal when you're better? If so, I don't blame you one bit. You should get another opinion. The glorified butchers, my term for surgeons sometimes. I have Crohn's disease and got reversed a few times, but no good. I still get the feeling I need the loo sometimes and go to the loo. This is a hard one, wait and see mate. Darlz, I hope the lump isn't cancer. Good luck xx

Cancer is a sneaky darned bugger! I can see where if the lump (small as it may be) is cancerous, they may lean towards a colostomy. If there is one little one, could there be more pre-cancer cells there waiting to develop and spread? Resections are tricky in themselves.

It's a big decision, so make sure you get a second opinion from a surgeon and also from an oncologist.

You'll probably hear from those who have ostomies due to cancer ...

Make sure you ask all the questions you want and get second and third opinions if that is what it takes to help you make your decision.

Hi.... Cancer originates in cells... i.e. the rapid division and growth of cells... They then develop into tumors.... The size of the tumor is, in one sense, irrelevant.... What is relevant is if the pathology identifies the tumor as being cancerous... If it is in the colon or rectum... Don't screw with it... It can spread to other tissues or get moved around through the lymphatic system long before you physically feel symptoms..... If there is no cancer already existing otherwise in your body... Then removing the colon eliminates the chances of colon cancer, removing the rectum eliminates the possibility of rectal cancer. Rectal cancer is not nice... As I understand it, often rectal cancer can be well established before you are aware of any physical symptoms (as can colon cancer)... And if that should occur... The prognosis often is fatal.... Many in here would agree that while an ileostomy is a drag.... Many got their life back after years of multiple surgeries and much discomfort and in doing so eliminated the possibility of colon or rectal cancer.... Besides, resections and reconnect have their own inherent risks, more so as you get older... Take time to consider the alternatives... I have chosen to live with the ileostomy... Which in my view is a very minor inconvenience relative to the risks of cancer or risks of multiple future surgeries... ALL the best to you... This whole trip is hard on the head at first... But seriously evaluate the risks.... There is light at the end of the tunnel.... Enjoy the Holiday Scotiaman

Many of us are living long, healthy, and happy lives with our ostomies.

When I had cancer, it was anything but long, healthy, and happy!

I had a reversal that didn't work. I'll take my ostomies any day over the possibility of more cancer!

Yedmans,

I was in a somewhat similar situation to yours. I had a rectal tumor about 1cm from my sphincter. Radiation shrunk the tumor nicely and the surgeon was pleased about being able to get a one-inch margin when taking out the tumor. Visibly everything looked great. The plan was to have a temporary ileostomy while going through chemo and then get reversed when I was done.

Unfortunately, the pathology on the margin came back with microscopic tumor right to the edge of where they cut. They couldn't guarantee there was no microscopic tumor in any of the tissue left behind. Long story short, I decided to have a second surgery to clear out everything south of the tumor resulting in a permanent colostomy. It was a difficult decision, but it came down to wanting to be safe rather than sorry. Colorectal cancer is tenacious. As for my life with a colostomy, I'm slowly working my way back to doing the activities I used to enjoy. A lot of bumps along the way though.

As you have no doubt read from other posts, there is hope for a fun and meaningful life we can hang our hats on even if things are tough in the short run.

Absolutely, seek out a second or third opinion if this all sounds rather hasty to you. But I must say, from a total layman's perspective, if it is indeed cancer then this probably isn't something you want to mess around with too much. Cancer spreads, but I am sure you knew that already.

*Huge hugs* to you at this incredibly stressful time. I do feel like I should tell you that there are thousands upon thousands of people who live their lives with ostomies and are very happy, well-adjusted, contributing members of society. I know that it's probably more than the prospect of having an ostomy though, but everything else as well. Having your entire large bowel removed - pretty scary stuff!! However, I know that for my husband, losing his colon was the first step he took in order to gain full health and happiness.

Sometimes to gain something, we have to lose something in the process. This is just my personal way of looking at it, and I am sure there are a million different perspectives that are just as truthful and valuable as my own.

Blessings and please keep us posted!

Liz

I have had my total colon removed and have to say that it isn't the worst thing in the world. Life with a permanent ileostomy isn't what I had wanted, but hasn't been as bad as I had thought it would be. I won't be able to tell you that everything has been great all the time. I can say that the resources here on MeetAnOstomate.com can really be helpful in returning your life to whatever your new 'normal' will be.
It is also important to recognize what a relief it can be to know that you will never have to face colon or rectal cancer again. That can be a drag on your spirits that can take energy away from your recovery - the most important thing.

I think what people have said about getting second and third opinions is important, especially about asking an oncologist. My experience has been if you ask a surgeon if surgery is good you will always get a yes, that is how they are trained. If an oncologist, and also your family practitioner suggest surgery, then you should have pretty good confidence that it is the right answer. For me, it was a matter of not watching while my colon turned cancerous. It was already well on its way there and I saw what my sister went through at 32 with rectal cancer. My surgeon did try to save part of my colon, but I had so many complications following the resection that he ended up removing the entire colon in order to save my life. I don't regret that. I have gone on to have many happy days. You will also. Don't forget to use your support system, especially when you are freaked out. Good luck.

Karen Stella (my stoma's name)

As someone who has stage IV rectal cancer (spent 3 years thinking chemo, radiation, surgery, more chemo had got it all) and being in touch with several people over the last 4 years with the same cancer, I'd say a total colonoscopy would be standard if you have had multiple polyps. It's really never to do with size, it's the type of cancer and how far it penetrates. Yours sounds like a totally different sort to mine - being in your colon, not rectum. The thing is all colorectal cancers start from polyps or lumps - not all polyps turn into cancer, but if you have had more than one, you are almost guaranteed to have more.

Many people (I used to be a member of the Ileostomy Association) have full colonoscopies for FAP or other bowel diseases from very young ages, even babies. It may sound drastic, but it is, I'm sure, considered the best option to give you the best chance of no recurrence. Repeated resections every time you have a new polyp could cause so much pain from scar tissue, higher risks of blockages, and all the extra risks that go with any surgery.

I have a friend, a 30-year-old chef, who also spends any available time DJing in Spain. He's had relationships, goes out with his mates, and lives a better life than he did before cancer. He has no colon - it doesn't stop him doing anything. That may be because, like me, he has many small lung tumors and we know neither of us will make it many more years. He had over 20 polyps in his colon - it sounds like you have been caught soon enough to have an excellent chance of complete recovery, but do listen to all the options and decide what is best for you.

My post is not intended to frighten you, I hope it doesn't, but rather encourage you that if a second and third opinion also suggest the same approach, it will not be as bad as you may think.

Whatever you decide, it's your body and you have to be happy with your decision.
Doing research is the best thing to do.

Good luck.

Have had ileostomy for over 2 years, no issues compared to the non-healthy way I was before. Always get a 2nd opinion though, even a third... Best wishes. Lex

Hi Yedmans,
Get another opinion! When they finished with my ostomy, I had about 8 inches of colon left. My surgeon refused to do a reversal. Sooo, I found another surgeon. Got my reversal a year and a half ago and am doing great. The only drawback I suffered is that my feces and farts smell atrocious! Just have to be careful about where you are when you feel one coming on. However, after a year of the bag, it seemed almost pleasant, especially considering the alternative.
Again, get another opinion and good luck.

Jacksprat

I too had colon cancer and did get my ascending colon removed approximately 18 years ago. Then 4 years ago, I ended up with uterine cancer. This year, I ended up with colon and breast cancer. I now have an ileo because of the colon cancer. If you're willing to eat properly - no sugar or red meat, a lot of salads (greens) - you can definitely keep the cancer contained like I did for so many years. Also, I do believe and do miss colon hydrotherapy, which I feel kept my colon clean and kept the cancer away. You should get as many opinions as you want because you know once they take your colon, there's no going back. I do not believe in chemo, but am doing radiation and taking hormone pills since I am estrogen positive. Just remember, it's your body and if your questions are not being answered, then it's up to you to find the right doctor and which path you're going to take to heal your body. Best of luck, Butterfly48.

Yedmans,

Get on Google and learn about the J-Pouch option. Discuss it with some more surgeons if need be. Depending on your lifestyle, this could be one of the most important decisions you ever make.

Cheers,

Tim.

This to all members, I guess I sounded somewhat arrogant in my elation of my particular issue, I just was not aware of all, or many for that matter, of the complications of the procedure... I apologize.
I do wish that there was something comforting that I could say to you, but I don't have the knowledge of the nomenclature to do so. I do wish you all well and I will remain a member and bore you with some of my Georgia syrup and humor if you don't mind.

Jacksprat

Dear yedmans and everyone else,

I offer you this simple alternative to looking at the journey we all seem to find ourselves in.

If in the case of yedmans, cancer in rectum anus removed and chemo and now a possible cancer in the transverse colon and the discussion of possible removal of entire colon. I now say to yedmans that If we remove your entire colon, risk of colon cancer going forward goes to 0, you wil live a normal life expectancy and we will give you a pouch to wear on your belly front( small one) and it will be filled with 100,000,000 million bucks, Whattya say Yedmans? You in? I will leave everyone reading this to infer what each and everyones answer might be.

My next point is that Yedmans you will always find a doctor who will try and save you medicinally without the major surgery, because they think they are that good...I disagree....this is your life and your journey, be your own advocate and own it all.

The above story now becomes I now say to yedmans "that If we remove your entire colon, risk of colon cancer going forward goes to 0, you will live a normal life expectancy and we will give you a pouch to wear on your belly front( small one) and it will be filled with poop" Whattya say?

I am personally bypassing the J-Pouch journey as most doctors consider it to be the "in" surgery, as the expense of most patients quality of life and the disire to remain as normal as possible as far as where we poop out of. But since i have been down the road I am taking the liberty to dispell it as a viable quality of life alternative. If you want to hear the full story I would be more than happy to share , in the meatime I wish you well in whatever direction you chose.

YOu have to know that the pouch ( bag) i wear on my belly would have to be filled with more than 100,000,000 million bucks as that woudlnt be enough to cover how good i feel physically as a result of full removal of my rectum anus and colon.........My joureny is different than your s.....MIne was UC............

Michael

Very true!

Hi everybody, Yedmans here! I have had the test results and as I feared, although very small, the lump in the transverse colon is cancerous!! NUTS!!!!! As just about every reply to my original post suggested, I have asked for a second opinion from a colo-rectal specialist. I have just had confirmed that this will happen ASAP. My consultant confirmed that the standard procedure in the UK after a 2nd carcinoma is found is total removal of the colon and implied I should expect the same conclusion from a specialist. However, he may also suggest I may be a candidate for a J pouch, although he stressed that this is very complex and risky surgery. SOOOOOOOOO I guess I will have to see what happens next. I will keep everybody informed as things progress.

I must say that, although the subject matter is very depressing to me, I have been amazed and comforted by the response from you wonderful people on this site.

Hi - so sorry to hear that news .... Keep on asking the questions, knowledge is power!

Rach xxxx

Don't know if you remember me or not, (jacksprat) I put that in cause I don't know how they identify someone "replying". Anyway, I had a colostomy where as when done I only had about 8 inches of colon left. Found a new surgeon and he reversed it for me. I am doing great and have ever since the procedure, over a year ago. I don't know the concern about how much colon you have left, but it seems to me that if you have a few inches left to turn the corner, you should be fine. When you see your surgeon, let me know what he said and your prognosis.
Good luck

jack

Jacksprat

I hope this message finds you! Very interested in your case. Seems remarkable that you managed to have things put back together with so little colon? I have 2 questions - do you know which part of the colon was saved (ascending, transverse, descending, sigmoid etc)?
Also, how much rectum did you have remaining - complete or partial rectum?

These questions are particularly pertinent to my case. Thanks for your concern!

Yedmans

Hello Yed,
In my particular case, I had about 8" of colon left. There was no talk of cancerous growth, so your case would be different from mine, but I am not sure how. Can they simply remove it? I'm sorry, but I just am not that versed in all aspects of the procedure. Were you set for a reversal or do they still have to test? At any rate, get another opinion... that seems to be the main suggestion offered in the room and I heartily agree! I thank God for the ease and success of my procedure and pray the same for you.
God bless,

Jack

Yedmans,

You might want to do some reading here - people who have all their colon removed, but still have internal pouches.

http://www.iasupport.org/pouch_home.aspx

http://www.iasupport.org/forum/forum_topics.asp?FID=15" title="internal-pouch-success-failure-stories

There are lots of helpful posts and forums on the ia site. There are so many different options, everyone is different. Just take into account it may be 12 months of running to the bathroom before things settle into any kind of "pattern" if you have no colon left but opt for an internal pouch.

I hope you have a good surgeon who takes good margins and wish you a fast recovery, whatever your decision.

Lisa

Hi there, Yed.
I still don't have it worked out in my mind how this forum works... I get a notification that someone wants to hear from me, but when I arrive, all the messages are several days old.    But I'll stay in here and maybe    I'll figure it out.

Now,    I didn't have anything wrong with my rectum, or at least not that I was aware of.    BUT I was trying to get past congestive heart failure at the time and damn near died from the swelling and clots in my abdomen, caused by the injections administered incorrectly into my abdomen.    As a result, for most of the 3 months that I was in the hospital, I was in ICU and totally out of it.    Finally, my wife, who is a retired nurse, set up a hospital room in our house and damn near kidnapped me from the hospital.    I began therapy and had round-the-clock nurses.    The surgeon wanted to send me to a nursing home, I think due to the fact that she thought I was going to die and she did not want it on her watch.

However, I am doing very well now and didn't realize that not everyone fared as well as I.    I mistakenly took the procedure as more or less routine and only realized that was not the case after I began communicating with others in the forum.
I can't give you any advice except keep asking questions from everyone you can.
Good luck and contact me anytime.
Jacksprat

I have stage 4 colon cancer. They removed my colon. I went from cancer free to stage 4 in one year... They had only found 2 polyps the year before that could have turned to cancer. I ended up stage 4 in one year... Removed the damn colon!

Hey there Buck,
Man, I don't know how in hell you progressed (not the right word) so fast from 2 polyps to stage 4.    I am not familiar with the different stages.    But I would surely see another specialist.
Again, let me thank my lucky stars, no, let me thank God, that in spite of a year of misery, I am so much luckier than a lot of people I have met in here.
Hang in there fella and God bless.

Jacksprat