Living with Colon Cancer and a Colostomy

Hi all, I am a newbie, but I have been reading all the posts that I can, as I need to hear about others' problems so mine may not seem so bad. I had emergency surgery in 2009 for a blockage in the intestines, which turned out to be a cancerous tumor. I woke up 7 days later with severe peritonitis and a colostomy. I was living in Florida at the time, but after 8 weeks in rehab, my son wanted me to return to NJ to live with him and hope to get better medical care up here. Well, I have done all they asked of me and went through a terrible time of 6 months of chemo and lots of problems with the colostomy. Well, two years later I finally have some control over the sores and burning due to sores around the stoma, and now I just had a PET scan CT scan and I have a new tumor in the mesentery, and a spot on the liver. I will be going to the oncologist this week, but I am very worried. I was wondering if anyone out there has had this type of cancer come back? Thanks to anyone who will respond to this. Joyce hometown

Hi Joyce, and welcome to the forum. I am a colorectal cancer survivor for 12 years. I have no experience with return, but am posting this to show my support for you. My thoughts and prayers for a good report; keep the faith. Cancer can be beaten; there are many on this site who have done so. You can and will too. mmsh

Hello Hometown,

Thanks for your post.  I don't have any experience of this myself but I do know a few people who have had cancer at intermittent intervals and they are still going strong.  Keep the faith and try to get the best out of life.

Best wishes  Bill

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Hi Joyce, I have a colostomy due to rectal cancer and am currently still getting chemotherapy. I went through six weeks of chemo and radiation before my surgery and nine chemo treatments after surgery, with only two more treatments to go. I can't imagine going through six months of chemo like you have. That had to be rough. And I can't imagine having cancer come back after going through it already. But it's good that they caught your cancer. The sooner the better. Just keep a positive attitude. That's what my doctor always tells me. Let us know how you make out. And have a happy Thanksgiving

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Donna

Hi Joyce - I am a rectal cancer survivor of 9 years. I would not be here today if I had followed my oncologist's advice when he thought my cancer recurred only a few months after finishing chemoradiation and was on to the 6 months of adjuvant chemo. I had a mass throughout my pelvis that engulfed all my organs and was strangling my small and large bowels. The oncologist wanted me to go forward with the chemo with a life expectancy of a year. I'm sure glad I didn't go that route!

Instead, I opted for surgery and chemo straight into the abdomen. It is important that you investigate other treatment modalities like what I had (hyperthermic intraperitoneal chemo, or HIPEC for short), total excision of the mesentery (my understanding is that this was being done routinely now for rectal cancer), and ablation, CyberKnife, or SIR spheres for the liver mets. Living in NJ, you are close to some of the best cancer centers in the nation (Sloan-Kettering, St. Vincent's, etc).

My experience is that medical oncologists don't always offer the surgical alternatives that may be available. Mine was certainly against my surgery - saying I "would never be the same"... well, that may be true, but I am living proof of how important it is to explore ALL your options.
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Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Thank you all for your support. I am so scared at this point, as I am now waiting for the hospital to call and schedule my biopsy. I keep thinking this is the end for me and I want to fight this and hope it can be something that goes into remission. I had never heard of the mesentery having a tumor. Has anyone out there? God bless all of you for caring, as I don't have much support in my family, which is small. Have a great Thanksgiving to all. Joyce

Wow, I'm so glad to hear that the oncologist can be wrong, as I am currently going to John Theure Cancer Center, and they are supposed to have wonderful doctors here. My oncologist is a man of few words, and at times like this, I want more than a few words. If things can't be resolved, I will have to think about another alternative, as this oncologist told me this is non-operable. Thank you for all your information, Joyce
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Hi: You are very right. You think you have it really bad, and then you look around and see someone worse off than you, and you say, "This is not so bad." Back in 1998, I found out that I had gangrene in the bowel. I was in the hospital for four months and had eight surgeries during that time. The doctors told me that if I had come in one day later, I would not have made it. During that time, I had a colostomy, and for a little while, I thought that this was the end of the world. Today, if anyone asks, I just say it is a little inconvenience. It is not bad at all, considering I have a friend who beat breast cancer, ovarian cancer, and now has colon cancer and has to have a colostomy. She had surgery for this last Tuesday, 11/23/11. She did a lot of reading up on colostomy procedures and was ready when the time came. Even though I have had 74 surgeries and have both an ileostomy and colostomy, I feel that what I have is a little inconvenience compared to my friend and someone with no arms and no legs. You learn to live with it and can very easily lead a normal life with both or either of these things. The doctor came into my room before surgery and said, "You can have this done and live a normal life, or not have it done and probably you will be dead in a very short time." It was really not a hard decision to make.

Hi, I am new here and I have a lot of reading to find what interests me. I had cancer in the intestines, was operated on, and then advised to go through chemo, which I refused. I have decided to go against cancer myself. I had the operation in September 2011 and so far all works well. I believe you must give yourself a chance to go against it with diet, natural remedies, and a change in thinking.

Hi, I am new here and 4 years in remission with a colostomy from colon cancer. Just messaging to give my support. I believe it's very important to stay positive, meditate on the journey, result, and youthfulness you want. My thoughts and prayers are with you, good luck. E.J.

Of course, I realize that there are no "for sure's" in the medical field. But I am confused about the dilemma you folks are discussing. I had a colostomy and reversal one year apart and was very fortunate; the outcome was most satisfactory. I wish the same for you all. But, if they remove your colon, (in my case the whole thing was removed, leaving just enough to fix it later), how can one possibly get colon cancer? I am not being a smartass; I just can't understand.

Funny thing happened to me a few weeks ago, the doctor who did my colonoscopy called and said I was due for a re-exam. I asked him, what he was going to examine?

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  Hi Ethanjames, it's nice to get a few people online from Melbourne. Our support system is non-existent. The only one is at Preston and North Hospital, too far for me. I live in Cheltenham. So far, I have only met Mooza online; she is great and funny from Port Melbourne. I write on forums with any problems and, if I feel up to it, sometimes a blog. Generally, all the advice I get is from the US. Do look up my profile if you like, and maybe you will answer back. Cheers, Schnecke