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Stage IV Colon Cancer

deneenb
Posts: 130
Joined: Jun 2004

Hello. This is my first time doing something like this and I'm not really sre how to go about it but here goes. My father, age 59, has just been diagnosed with stage IV colon cancer. The pathology report has not come back yet but the surgeon (who I am no longer impressed with) says in his opinion it is stage IV. No proof that it is in the lymph nodes but it has spread to his abdomen in what the Dr. called a sand speckle way. He said it doesn't look good but there is always hope. I'm desperate to find something to help him beat the odds. Can anyone offer advice or support or stories of others in a similar situation beating the odds ? Thanks so much.

bsrules
Posts: 296
Joined: Mar 2004

Hello! You have done the right thing coming here!! The people here are very helpful and supportive!! They have all help me alot dealing with my husband cancer. Everyone is different as to odds. But there is always hope!!! A positive attitude and stronge will to survive are the best meds. How is you father doing? My husband also 59 has stage IV with 60% liver involvement. He was diag. in Sept. 2004 and only given 6 months well he is doing ok. He has has up and down days due to chemo. But he is fighting it with everything he has and that is what has gotten him through this so far. I hope that your father has gotten a 2nd opinion. Also if he isn't happy or feels unconfortable with the surgeon find another one!!! Ask alot of questions and take lots of notes!!!! As they will throw alot at you guys all at once and there is no way that you can remember all of it!! I thought that my head was going to spin off when everything was being thrown at us. You need supportive Drs. that you feel good about!! Hang in there!! If you ever need some answers or the vent just come here and your new friends will be there for you and your father!! Best Wishes!! Sue

KrisS
Posts: 232
Joined: Apr 2003

I am so sorry to hear about your father. I am sure both of you are very scared. You came to a good place. There are lots of great people here. Don't give up hope. There have been several new drugs that have become available within the last 2 years, and more in the pipeline that may offer additional means of control. I would recommend finding a good oncologist preferably at a major cancer center where they are more likely to have more experience with newer treatments and sometimes offer clinical trials of drugs being developed that are not available by any other means. Knowledge is power, and reading up on the generalities of treatment is very helpful, so that you have some understanding of the disease when it comes to deciding about treatment options.

I am 48 and was diagnosed with stage 4 disease 2 yrs ago. Although I have not beaten it by any means, I am living with it and enjoying life. I was thought to have Stage 3 rectal carcinoma 5/02 until they opened me up at surgery 9/02 after radiation and chemotherapy only to find innumerable small tumor nodules throughout my lower abdomen attached to the peritoneum- the tissue paper thin smooth layer of tissue that covers the adbdominal wall and abdominal organs. (This type of metastatic pattern is called peritoneal carcinomatosis.) They did not remove my tumor, but instead did an ileostomy on me to bypass a radiation strictured piece of intestine and put me on 5-FU/leucovorin as well as oxaliplatin, a chemotherapeutic drug that had received FDA approval a couple of weeks before I started on it.

Because my metastases seemed to be limited to local lymph nodes and the peritoneum I chose to go back to surgery 4 mths for a major and somewhat controversial (although receiving more acceptance recently) surgery to attempt to go for a cure. They found just about no peritoneal nodules left, although I still had active tumor in lymph nodes and in the rectal mass itself as well as in an ovary. Unfortunately, I developed additional metastatic disease to other more distant lymph nodes after surgery.

I was feeling very sick and there was debate as to whether I might respond any more to oxaliplatin. I went back on oxaliplatin/Xeloda 6/04 and my lymph nodes and liver nodules shrank to almost normal within a month or two. I am still on it and feeling pretty well. I get tired more easily and I have lost some sensation in the tips of my fingers and feet. I have had some trouble keeping my weight up as well, and my oncologist wants to take me off of oxaliplatin for a few months for a rest. Fortunately, just this March both Erbitux and Avastin have been approved by the FDA and so are available for use. My oncologist is going to try to switch me to Avastin which reduces the ability of tumors to grow new blood vessels.

I did quit my job last June, but by September started going back part time, something that I am still doing. All and all, it has been a good year.

Here is hoping that your father is able to find a sucessful treatment.

Best wishes,

Kris

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hullo--welcome to the board.As you can se there is a wealth of info here.You can also see that both Kris and Sue/Bob have been battling this for some time!
Kris and Bob are an inpiration to all of us here--they are fighting the battle--AND WINNING!!!
Your father has your support and now by coming here you will have others to support you both.
Although my cancer was not as far advanced as many on this board it was still a very great shockto Jen and I.I am now 4 months in remission and pass on to you an urge to return to us for any help you may need---the guys here sure helped me!
Our very best to you and your dad--this horrid thing can be beaten!!!
Kanga n Jen

deneenb
Posts: 130
Joined: Jun 2004

Thank you all for responding so quickly and for your encouraging words. My mother just called and said the pathology report came back and it was positive for cancer in the lymph nodes and the abdomen. They didn't give any technical terms. Don't they usually tell you how many lymph nodes show cancer out of the number of lymph nodes they remove? The Doctor said that on a scale from A-D my father is a C/D, leaning more towards the D. He told my father that he has a 20% chance of 5 year survival. Fortunately the owner of the company that I work for has a brother who had a very similar situation to my father 15 years ago. He was told by the first doctor that he had 2 years to live. He went to Sloan Kettering in Manhattan, NY where they did the type of surgery that I believe Kris may have referred to and here he is 15 years later. He has placed a call to his oncologist in Sloan and has the ball rolling to get my father in there quickly. I'm very discouraged that the doctor we have never even mentioned that possibly a cancer center could offer more advanced treatment. He just left it at "there's really nothing you can do". Would Doctors rather lose a patient than lose face and say "your needs are outside of our area of expertise but perhaps at Sloan or Johns Hopkins they can offer more". I know I'm just venting now but it's frustrating as I'm sure you all know. Thank you for your support.

carmen07
Posts: 120
Joined: Apr 2004

I'm happy to hear that your going for a second opinion and Sloane is a good place to start.
My hubby had Colon surgery in october 03 and had two small lesions on his liver which we did not know if they were cancer. The surgeon recommended a oncologist at our local hospital. We were not happy with his fist doctor and went to a larger cancer center. The experience was totally different and we went with a larger Cancer Center.

You will have to get all of your records from the hospital including pathology, films etc. An error was found on my husband's pathology diagnose. He had one lymph invaded, and our local reported none. Not that it would have made a difference in his diagnose.
Sloane will explain to you.
Also they have oncology specialist that treat his same type of colon spread.

They have come up with two new drugs in 2004. My husband has not been treated with the new drugs yet, but was treated on a drug approved in 2002, that killed the cancer in his liver. He now had his right lobe of the liver removed.
So your on the right path, and it's very important to find a doctor that your Dad will be comfortale with. Having a supportive family to do the research for him is very helpful.
I wish you all the best.

KrisS
Posts: 232
Joined: Apr 2003

I guess I like to think the best of people, but I suspect that your father's surgeon was less likely trying to "save face" than truely worried that the risks of aggressive treatment may outweigh the benefits. That truely is a concern, and that is where getting the opinion of a number of people with a great deal of experience is helpful. I don't think my original surgeon was at all enthused about me going for the peritonectomy surgery. However, because the surgeon who did this surgery worked at the same hospital, he knew about it, and called my second surgeon into the operating room for a consult when he found out what I had. My oncologist was also not in favor of the surgery, but did additional PET scans and CTs to make certain that I was still a candidate for such a surgery and sent me for a second opinion from a surgeon he knew personally. When that surgeon said I was a reasonable candidate, he changed his mind.

I am glad to hear that you are going for a second opinion. In the meantime gathering as much basic knowledge as you can, and writing down questions will be helpful to make the best of the opportunity.

As for your question about the pathology report, usually there is a more detailed description of the microscopic appearance of the tumor they remove, followed by a briefe summary statement. I suspect that the doctor just read your mother the summary statement. The fact that there are nodules elsewhere in the abdomen makes the number of lymph nodes that are positive less likely to change treatment recommendations.

Best wishes,

Kris

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hi deneenb...

I was 33 when I was diagnosed with stage 4. 40% of my liver was affected, and also removed. That was January 2002...today, I am all clear, and have been ever since the surgery. I had chemo and radiation prior to surgery to shrink the tumor, and chemo afterwards to attack any microscopic little nippers.

As far as odds go...I personally think it's a joke. If physicians can pinpoint the date we will expire, then have them throw in a couple of winning lottery numbers as well. Attitude is your main defense, reinforced by terrific doctors who work WITH you and not AGAINST you.

As a caregiver to your dad, you are the official cheerleader to help him and your mom through this. Sure, it's ok to feel overwhelmed, but don't let it consume you or your family.

Anytime you need to vent, need advice, or need a good laugh, I'm sure stopping in here once-in-awhile will do the trick.

Please keep us posted,

Stacy

cheer3's picture
cheer3
Posts: 106
Joined: May 2003

I am so sorry you had to come here! It is great you found out about it so soon,you will read very informative and kind post here.For the most part I have only read and.
I was stage IV. I had Rt. colectomy, two months later I had liver resection, 60% removed and a hepatic pump placement,to be use for chemo later.
Six weeks later I had a PortAcath placement and chemo,5fu/leuc was started in PAC that day. I had FUDR in the hepatic pump.This was the most agressive treatment for me.I completed my chemo. Aug 2003. I have been in clinical remission since completion.
I tried to stay focused on the moment.I did not wonder what I would do tomorrow. This helped me more than I could say.I read and made sure I knew what to expect with each procedure. I did not know about this net until June 2003, I was diagnosed March 2002.I had no friends or family who had cancer. I try not to think about the numbers, I am still here, feeling good.
You and your parents will be in my prayers.
Jean

RMGill
Posts: 20
Joined: Apr 2004

I was diagnosed 3 or 4 months ago with stage IV, mets to the liver and a couple suspect spots on the lungs. Almost gave up, but I went ahead thanks to the encouragement I got here and started treatment with 5FCU w/ Leucovoran, Campostar, and Avastin. All people are different, but so far I've had very few negative side effects and positive results. My CEA level at the last exam was down to 5, versus the 98 I started at. My oncologist is very encouraged by the results and scheduled a CAT scan next week. Not out of the woods by any means, the CEA levels can be a bit deceptive, but the point is there is hope and people can respond to the chemo and beat this. I'm fighting to be in that rare group and hoping with all the new chemo agents and treatments more and more people can beat this too. Hang in there, my oncologist in no way expected the results he's getting so far and gave me 6 months. Now he's talking about possible remmission and being able to recept my liver, so I now have hope again.

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