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Stage IV Colon Cancer, Need Info.

Posts: 2
Joined: Mar 2003

My mom, age 62, was diagnosed with Stage IV Colon Cancer, and get this...the doctor didn't tell us this. She had surgery in March to remove the tumor from her colon, she started Chemo in May, and all of this without any information. She believed that her cancer could go into remission or she could be cured. I made an appointment with her family physician instead of her oncologist, since he was remaining vague, and he printed up a copy of her oncologists notes. The man actually said in there that he thought it was better to let her believe that her cancer was curable, but all she ever asked for was the truth...Okay, so last week we get this diagnosis of Stage IV...She's on 5FU only. She had a bad reaction to the leucovorin and they took her off of it. I know from the other posts that there are other kinds of chemotherapy that may shrink her tumors enough to allow her to live a little longer. The oncologist hasn't given us any other alternatives besides the 5FU. How can we get information out of this oncologist...I'm getting really tired of myself and my mother having to fish for information. Any suggestions would be greatly appreciated.

The other concern I have is...if anyone else had a family member diagnosed with Stage IV Colon Cancer, what will her quality of life be like? What are looking forward to? How long can someone live with this type of cancer? Basically, I know nothing about this type of cancer and any help and information is greatly needed to ease my fears, the fears of my mother and of my sisters. We are so afraid of losing her, and we have so little to go on...so, thanks in advance for any responses.

Posts: 232
Joined: Apr 2003

Sorry to hear about your mother. There are other treatments if her cancer is not in remission or is progressing. I've got stage IV rectal carcinoma. It had spread to the adjacent intestine and abdominal cavity. I went on oxaliplatin, 5-FU, and leucovorin which resulted in a marked decrease in my tumor volume. Too long a history to give all the details but now after 6 mth off of chemo and progression of my tumor, I am back on oxaliplatin. Because I had been on a number of courses of chemotherapy I was not elgible for some clinical trials for EGF factor inhibitors which have recently shown some promise. Those are the drugs which received a lot of press at the end of last month. My oncologist thinks that one or more of them may become available within the next few months for compassionate use and may try one of these if I don't respond again to oxaliplatin and Xeloda (an oral drug that acts much like 5FU. There may be some other medical problems which make it difficult to give your mom such treatments but her oncologist should be able to explain that to her. Sounds like you need to find an oncologist with whom you can communicate and will be more inovative about other treatments.

StacyGleaso's picture
Posts: 1249
Joined: Mar 2003

You are very considerate and brave to be there for your mom...I'm sure she appreciates it very much.

If it's any consolation to you, I was stage IV. My surgery was 10 hours, and it was discovered then to have spread to my liver, resulting in the removal of 40%. Two lymph nodes were also affected, and removed. I had 6 months of chemo "clean up" after the surgery. That was last year. My surgery was January 2002. Today, I'm fine. I am cancer free, and have no side effects other than arthritis in a couple fingers. I'm a 35 year old female, and truly believe I was given this disease to be an example for others, that there is hope. I worked full time throughout my treatments, and only missed work to recover from the surgery.

If I were you, I would get another opinion from another oncologist. Where do you live? Check the internet for local physicians which may be able to provide you with a better action plan.

My prayers go out to you, and remember that you can always count on me if I can assist you further.

Take Care,

Posts: 2
Joined: Mar 2003

I just wanted to say thank-you. I am so glad that I found this web-site. I didn't know where to turn for support and thought that I'd walk around in a fog for the rest of my Mom's life. Being unsure is hard. Now, I see that there is hope. I will take your suggestion and seek out a second opinion. A doctor that doesn't tell the truth to people, especially people who want to know, just isn't the kind of doctor that's good for my mom. By the way, we're in Cleveland so she's being treated at the Cleveland Clinic. There are many, many great cancer specialists at that hospital and I'm sure that we can find a fit that's good. Thanks, again.

Posts: 2
Joined: Jul 2003

Hello glad to hear you are doing well. My uncle has colon cancer and I am trying to find out as much as i can. He is in NH. What hospital did you go to for your treatments? You seem happy with your oncologist. I am searching every option....Thank you

spongebob's picture
Posts: 2598
Joined: Apr 2003


First things first... My thoughts and prayers go out to you and your mom and the rest of your family.

Next things next...

1. Get another doctor
2. Get another opinion
3. Get another treatment
4. Get an attorney & consider a malpractice suit

Not telling a patient her diagnosis, witholding treatment, who knows what else? All of that is an indication of malpractice. I'm not saying to do it for financial gain, but consider it for the other people this "doctor" may be "treating" the same way. Sounds to me like Drew Carey could do a better job!

Last things last... Cleveland Rocks! I grew up on the West Side - North Olmsted. I have heard of a doctor at the Cleveland Clinic - I think his name was Dr. Fazio - from another csn person. This Doc sounds like he is willing to work to beat the "odds". I'll see if I can't confirm his name for you.

Be well and keep a good attitude!

- Sponge Bob

Posts: 232
Joined: Apr 2003

Someone in another message a while ago recommended a web site sponsered by M.D. Anderson Cancer Center as a site with good information.
www.healthtalk.com/coloncancer/index.html. I just checked it out and thought it offered a good discussion of new treatments that are being used for metastatic colon cancer. You might find it helpful to reading while you are hunting down another oncologist. SpongeBob mentioned a Dr. Fazio. I think he is a surgeon rather than a medical oncologist, but still may be able to point you in the right direction.

Even if I am not in remission and am holding my breath and hoping this new round of chemo will do the job, my side effects have been pretty mild. I just got back from a good long hike enjoying the nice weather. As you can see from the messages, there are plenty of other people living with this and enjoying life as well. So keep fighting!


Posts: 86
Joined: Dec 2002

It was me who recommended the website. I found it helpful and I'm glad you did too.

Posts: 6
Joined: Mar 2003

You have asked some tough questions about what to expect, quality of life, etc., because it varies so much from person to person. I was originally diagnosed as Stage III-IV in Aug. 2000; but the cancer recurred in Jan. of this year, making me a "full-blown" stage IV. I have had a hard time with the side-effects of chemo; whereas another person may feel great. I have met persons who were first diagnosed at Stage IV who continued taking regular chemo & felt great for years! So you have good cause for hope & I wish you and your mother all the best.

Posts: 176
Joined: Mar 2003

I am 59 and have stage IV colon cancer also, I had my surgery last june 2002, I have had 20 treatments of chemo and just finished with 5FU and radation of 30 treatments, I probably will have to have more surgery due to scar tissue, which I really don't want but I am at the point I will do anything I have to. The DR tell me I will probably have to fight this monster for a long time but I am willing. I agree with SpongeBob get another opinion, there are so many new things happening with chemo now that I belive there is something out there to help. I read an article in Cure Maginze and you have to ask questions and if the DR doesn't give you an answer it is up to you to make him, this came from a cancer DR. I don't know how long you can live with this type of cancer but I do know you can have a good quality of life, you and your sisters can be a great support team for your mom, my kids are but I found when I went back to work in Dec. 2002 my co-workers have turned out to be my best support team. Good luck and my prayers are with you.

Posts: 4
Joined: Aug 2003

my fiance has stage iv colon cancer, shes only 22, she was diagnosed in March, she had surgery to remove the tumour which reached the stomach lining she stopped chemo after 2.5 months because of side effects, she continues with a multitude of vitamins and other alternate remedies, she lives in constant fear and hope, the doctors bombarded her with info, told her the 5 year expected survival for stage d is 5 to 10%, with chemo and 6-12 months without

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