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Metastatic Colon Cancer - The Outlook Brightens

By June 25, 2009

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For a person with metastatic colon cancer, which is colon cancer that has spread beyond the colon to other parts of the body, the situation may feel hopeless and overwhelming. But a recently published review of survival rates after metastatic colon cancer diagnosis brings new hope that this disease can be more effectively managed with newer treatment options. The results of this review, published in the Journal of Clinical Oncology online May 26, 2009, indicate that in the period from 1990 through 2006, the length of survival after metastatic colon cancer diagnosis has improved dramatically.

Between 1990 and 1997, the researchers noted that the median, overall length of survival held steady at 14.2 months. However, in the following years, median survival improved notably, to 18 months from 1998 to 2000, and then to 18.6 months from 2001 to 2003. The overall median length of survival improved most dramatically, to 29.2 months, for patients diagnosed with metastatic colon cancer from 2004 to 2006. Also encouraging is that the 5-year survival rate more than doubled from 9.1% in the early years of the study to 19.2% for patients diagnosed in 2001 to 2003. The improvements in survival are due to a combination of more effective chemotherapy medications and surgery to remove colon tumors that have spread to the liver.

Years of Life

The bottom line is that even after receiving an original diagnosis of metastatic colon cancer, good treatment can allow patients to live meaningful lives for years, rather than weeks and months. This may seem like small comfort to someone facing a diagnosis of metastatic colon cancer, but it points toward the day when metastatic colon cancer may become a chronic, manageable condition, rather than a life-shortening disease.

If you've been diagnosed with metastatic colon cancer, be sure you talk to your doctor about all of the treatment options you should consider. New research breakthroughs are being made daily and you may even want to find out if a clinical trial is right for you. Be sure to discuss the pros and cons of clinical trials with your health care team.

Comments
November 11, 2009 at 2:10 pm
(1) Mark says:

I agree that metastic colon cancer can be a chronic disease in some cases. I am living proof.

I was intially diagnosed in 2004 with colon cancer. In the spring of 2007 it metastisized to lymph nodes in the center of my body.

I’ve been on various forms of chemo and targeted drugs ever since. It will be 3 years in the spring of 2010. Chemo treatments suck but the alternative is worse … so far.

November 17, 2009 at 7:15 pm
(2) Kim says:

Rebecca,
My regards to you and your family.
My Dad has been diagnosed with stage four colon cancer and the Dr. has recommended that my dad think about quality vs quantity. So at this time he said he could go on a paliative chemo pill but has made my dad think that it will make him feel rotten. So at this time his tumour marker numbers keep raising but he feels fine. Because he is feeling ok he is not considering chemo as he is afraid to get sick (he has watched my mom go through 2 different chemo treatments which she was very ill but healthy now). If it is not too difficult could you share the symptoms and any of your experiences to help me understand what might come.

November 28, 2009 at 6:59 am
(3) Rebecca says:

Re: Kim, metastatic colon cancer
I don’t pretend to be an expert, and treatment so often varies between people & depending on their Doctor etc, but some symptoms my mother experienced after being on chemo drip and tablets were v. strong tingling in the hands, headache and lots of nausea. She was on steroids for a while but that seemed to make her worse, gave her terrible nightmares and made her think she was losing her mind. She was better off without them. Later she got perinatal disease, ascites, swollen legs and abdomen and skin infection there too. She was given antibiotics but evidently it only cleaned up the skin infection and she got worse & weaker over the next few weeks. I found a brief journal she kept and can’t imagine what it must have been like for her every day: vomiting up most of what she ate each day along with diarrhea, v swollen abdomen, treating only 4 hours sleep (max) as a rare amazing achievement. But she was so fiercely independent that she held off telling her own GP, her friends and even me, how ill she felt.
Only ~3 months ago she was expecting to go on more aggressive chemo that would cause hair loss this time, but she stopped talking about that, the date for it came and went and she said no I’d been mistaken about that date. I knew she was lying but I didn’t want to upset her by pushing it. Something tells me that she’d either turned it down or, considering her sudden low demeanor in her last couple weeks, she was giving up. She kept a LOT to herself. That frustrates me now. (But some parents are really tough buggers like that!)

She checked into Marie Curie Hospice for a “2-day trial” – so she said to me on the phone – sounding perky, coherent and ok that day. Less than 30 hours later she was dead. She warned me that sometimes it happens suddenly, sometimes gradually, etc. Everyone’s different, but in her case she had primary renal failure and was vomiting ‘coffee grounds’ which I witnessed first hand. The doc (who wasn’t there at the time) said that “nurses panic too much at that and say (coffee grounds) it’s blood, when it isn’t really”…Like hell it isn’t, considering I not only saw it with my own eyes but also read up on it: it’s caused by only a “small bleed” in the abdomen with ab fluids, but still a bleed.

Please don’t anybody treat this as a prediction/forecast for what’ll happen to themselves or their own relatives, it’s just a response to a request for sharing info from Kim.

December 20, 2009 at 5:39 pm
(4) Bruce says:

I was diagnosed with Colon (Carcinoid) Cancer with Liver Mets in 2002. I had the Primary tumour surgically removed from my colon (Size of fist with 90-95% blockage), however due to late detection the disease had moved through and past the glands to the liver. I’ve had RFA (Unsuccesfully!) and two large tumours removed surgically (Partialy succesfull). I have been on a drug called Sandostatin which is currently keeping the smaller tumours on my liver (+-30) in check.

December 20, 2009 at 6:52 pm
(5) coloncancer says:

Hi Bruce, Thank you for sharing your story here. I know it’s helpful for others to know they aren’t alone in living with cancer. Suzanne Colon Cancer Guide

December 20, 2009 at 7:40 pm
(6) Wendy says:

Some of the stories are motivating while others are not. I just found out today that my 76-year-old grandmother has colon cancer that has spread to her liver. She has a tumor mass behind her bladder and she doesn’t even know this yet. They are going to tell her tomorrow. I am so devastated and not sure where to turn. We have not seen the oncologist yet, so I don’t know what treatments will be recommended. She is diabetic and I was just wondering if any of your situations were similar to mine. In the meantime, all we can do is hope and pray. Not any of us saw this coming and I know feel guilty for not looking closer or recommending the colonoscopy to her. This was the first one she ever had and that is how they found it.

January 1, 2010 at 4:54 pm
(7) Suzanne Dixon says:

Wendy – I’m so sorry to hear about your grandmother’s colon cancer diagnosis. I agree that not all stories about colon cancer are inspirational. The truth is that colon cancer is a terrible disease and kills far too many people each year in the US. Your grandmother is very lucky to have you and your family there to support her. My heart goes out to you. I am sure that everyone who reads your comment feels the same way – your grandmother doesn’t deserve this and we all wish you well.

January 6, 2010 at 10:05 am
(8) Melanie says:

My 83 yr old grandfather was diagnosed 5 weeks ago with colon cancer with liver mets. The drs say that resection isn’t possible and he had a colostomy done last week as he was completely occluded. He is very weak (can’t stand on his own) and has a 20 yr cardiac history too. The oncologist wants him to start Folfox chemotherapy every 2 weeks forever. They say he could live for 3 yrs like this. But what quality of life would he have?

January 7, 2010 at 7:36 pm
(9) coloncancer says:

Hi Melanie,

I’m so sorry to hear about your grandfather’s tough situation. I strongly encourage you to get a second opinion on what course of action, if any, is best for him. It is always helpful to have another expert (an oncologist) weigh in on the case.

Given your grandfather’s frail physical condition, it is possible that he won’t tolerate the chemotherapy very well. It may worsen his quality of life. On the other hand, if his weakened physical state is due to the fact that the cancer itself was blocking his GI tract, preventing him from eating, then he may continue to improve over time, even with chemotherapy.

Sometimes, people who seem very frail can do OK with chemotherapy. But you are right to be concerned. You’re smart to weigh his options carefully before moving ahead with aggressive chemotherapy.

What does your grandfather want? In my mind, this is the most important point. If he wants to try chemotherapy and the doctors feel it is reasonable, he should have the option to do so. But if he does not want to do chemotherapy, that’s OK too.

Also keep in mind that you are never committed to any one course of action. For example, ask his doctor if you can wait a few weeks on the chemo. See how your grandfather is doing. If he seems to be improving and gaining strength, chemotherapy may seem like a better option at that time.

Or you could decide to try chemotherapy right away. If your grandfather receives one course of chemotherapy and does very poorly, you can make the decision not to do any additional treatment. Just because he starts chemotherapy doesn’t mean he has to finish all courses of treatment.

I believe that it’s important not to let any one person “talk you into” a course of action that you do not want to follow. Get that second opinion, weigh your options and see what feels right and what your grandfather wants for himself.
Suzanne – Colon Cancer Guide

January 9, 2010 at 7:41 pm
(10) Kerri says:

My grandfather is 80 now but had colon cancer surgery 2 years ago. They said they removed the mass and no chemo was needed. Fast forward 2 years later…a spot was found on his lung, had a biopsy and it was metastatic colon cancer, stage 4, that spread to the lung. He has one large tumor with a blood supply going to it it. He was supposed to do 6 months of chemo, once a week every 2 weeks, coming home with a pack for 2 days after wards. Well, he couldnt’ breathe worse than normal and called 911 on Monday. They told him he has blood clots in both lungs and are treating him for that. He decided then NOT to do chemo anymore, given the fact that he has been very tired, and other things. The doctor told him the chemo is not a cure, and will only give him a few extra months on top of whatever time he would normally have.

Now that he stopped chemo, I wonder how much time he will have left…we will check into visiting nurses or hospice for him at some point and we know it will get worse.

This sucks!! How much time does someone have with no chemo and already showing a decline?

January 10, 2010 at 2:38 pm
(11) Nasha says:

I was diagnosed with stage 3 colon cancer in March of 2005 at the age of 34. I had chemo, radiation and surgery to remove my tumor and a complete hysterectomy. The cancer spread to both my lungs and I had 2 more surgeries to remove the metastases and more chemo. I ended up stopping the chemo early because my body couldn’t handle it. I was then diagnosed with MS in 2007. However, I recently have been having symptoms of extended loss of feeling in my legs and feet, bowel and bladder incontinence, hand tingling and pain. All symptoms of MS, but MS tends to come and go where as mine has lasted now constant for 4 months. I am concerned that the cancer has returned and spread to my spine. Has anyone out there had there cancer metastasize to their spine? Is it worth going back in for treatments or should I just enjoy (if you can call it that!)the time I may have left? I hate going to the doctor, I am currently taking no medication. When I went through everything before it was as if I had a full time job (without pay) going for tests and treatments and I hated every second of it. The pain, the illness and the humiliation of it all. If I were in my 70′s or 80′s I wouldn’t have done any of it. Since I was first diagnosed I have known that I had a 15% chance of surviving 5 years. In March, it will 5 years.

January 12, 2010 at 4:43 am
(12) Tabby says:

My mom, 72, was diagnosed with stage 4 colon cancer in May 2009. It had metastasized to the liver and lymph nodes in her neck. The liver was deemed inoperable due to the tumors being in both lobes. The tumor in her colon had to be removed via emergency surgery due to unexpected complete blockage. This sped up the metastasization. She was put on Chemo, but the first round gave mixed results. The liver tumors shrank, but the colon tumor started to grow back, the lymph nodes in her neck nearly doubled in size and the cancer spread into other areas of her body including her spine. She is on her second round of Chemo and due for a Pet scan tomorrow to decide where to go next, if she still has options. She has been so tired and ill and in so much pain between the cancer and the Chemo, she is not sure she wants to continue treatment regardless of the results.

I can really appreciate what Suzanne said about 2nd opinions whereas the medical team my Mom had at her first choice of clinic did not seem to feel her cancer was a huge deal and spent a month talking about what they “couldn’t” do to help her. Her 2nd opinion medical team at Marshfield Clinic has been wonderful. Mom has now been alive many months beyond what any of us expected (her cancer is considered very aggressive and very advanced; her first clinic’s opinion was that there was no hurry for treatment because it was the “slow growing kind”). But, as I said, Mom is getting tired of fighting. So I also appreciate what Suzanne said about letting the patient make their own decisions. We need to respect my Mom’s decision and let her go if need be. It’s not easy to accept the treatment that our loved ones choose to receive or to deny, but it is their life and their choice. If we love them, we just need to ask God to help us lovingly accept whatever path they choose in their journey through cancer. And whatever they choose is okay, it’s what’s best for them even if it’s not what’s best for us. Hang in there everyone. Cancer is not easy for the diagnosee or the loved ones. But all suffering and loss will come to an end some day. Revelation 21:3-4 in part reads: ” …And God himself will be with them. And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”

January 18, 2010 at 2:54 pm
(13) Nicole says:

I was diagnosed with colon cancer in 2008. I had a colon resection and chemotherapy for 6 months. Firefox & 5-FU.
In 2009 they found a cyst in my right ovary during a regular CT scan so I had surgery last month and they found it was malignant and spread from the colon cancer. Luckily the surround tissues were not affected and it was contained to the right ovary. I am to have chemo again but with Avastin and Firefiri. The talk with the oncologist is a blur right now and I am think she said that it is not curable chemo…is that correct? I am going to be 50 this year and from all that I have read the prognosis is not very good. I have 3 children ranging from 6 – 17. Is there anyone who can give me some good news? It looks like 5 years is supposed to be a great with stage IV but I’m hopng for more. Any information would be greatly appreciated!

January 18, 2010 at 3:31 pm
(14) Benito says:

Yes, you do have hope, Nicole, and with a positive attitude, good nutrition, family support, your faith, and your doctors and their treatments you will overcome this cancer obstacle. Never believe otherwise or accept anything different. Look forward to watching your children grow up and become adults because you WILL WITHOUT A DOUBT survive this. (I, too, have stage 4 colon cancer, so I say this from a similar position as you.)

January 19, 2010 at 12:05 am
(15) melissa says:

A year ago in 2008, i was diagnosed with Stage 4 metastatic colon cancer that had spread to my lungs. The lung cancer and the colon cancer were surgically removed in the same month. I too went through 6 months of folfox and then folfuri (?) I was lucky, except for my hands and nails turning black, I didn’t get too sick with the Chemo. As someone wrote earlier, it felt like a job and took over my life. when my Chemo was over, it took me a little while to actually get back to my pre cancer routine. I’ve had two clear cat/scans since, 1 every 3 months and have now decided I’m no longer going to worry about finding more cancer. I used to worry quite a bit. All of a sudden I just didn’t worry about it anymore. I’m planning for a future in my everyday life . My only problem is the cost of the future cat/scans I will need for detection,as my insurance won’t pay, after $2,000, for tests that are not
related to surgery. I will pass that road when it comes. My husband is a retired attorney and he battles all the health bills. Some he gets covered after 6 months of trying to explain the procedures in questions are covered. Others, we try to get lowered. Our finances aren’t good, but I feel lucky to have a husband who has the legal knowledge to fight the
insurance companies. I always worry for patients who don’t have a legal team behind them and not the best insurance.
My heart goes out to them.

January 21, 2010 at 1:38 am
(16) Glenn says:

My wife was diagnosed with colon cancer three and a half years ago. It spread to her liver and then to her lungs. She has been on chemo therapy during this time. She has a great attitude and has had very few side effects. Tingling in hands and feet mostly. She kept her hair and has not suffered nostia most of the time. She is entering her fourth year and they are changing her therapy due to the failure to stop the spreading tumors. Her attitude and her never give up attitude keeps her going. She is determined to do what ever it takes to fight this dreaded disease. Her strong faith and prayers from many of her friends have helped. To me that is the secret. Lot’s of positive support. Always keep fighting, never give up.

January 21, 2010 at 4:53 pm
(17) wendy says:

My dad died in October 2009, he was 78. He was diagnosed with metastatic colon cancer in August 2009. He never got the chance to start chemo or have surgery. He went into a hospice 2 weeks before he died as he was suddenly in pain. The only symptom he had before this was slight indigestion, which eased with Gavescon. As a contrast, mum has been bed-ridden for 3 years after suffering side effects of chemo for chronic lymphocytic leukaemia.

January 21, 2010 at 7:55 pm
(18) Nicole says:

Thanks Benito and to those who have left positive outcomes. I will not let this dreaded disease beat me as I can’t leave my kids with their father who doesnt know what their teachers names are (god love him..he’s been great). Keep up the faith everyone and as Benito said, be positive and surround yourself with positive people! Good luck to all xo

February 27, 2010 at 5:11 am
(19) Steve says:

Hello To All, I was just diagnosed with colon cancer. I had a kidney removed when I was nine because of a birth defect. I have been very healthly up till four years ago. I suffered with severe abdominal pains and had emergency gall bladder surgery. Numerous polyps and stones were found. I still suffered periodic pain and mentioned this to my doctor numerous times but was told this was common and that I would have to learn what foods made i ate caused pain and to avoid those foods. Three years ago I ended up in the emergency room with sugar numbers in the 700 range and was diagnosid with diabetes. After that I was still experiencing pain in my abdomine area , mostly on my right side. My doctor still said it was from food that I needed to stop eating. I decided to go to another doctor for a second opinion and this doctor ran blood tests. The doctor ordered me for a colonoscopy and to see a urologist because I also had bllod in my stools and urine. It has only been a few days since I have been told that I have colon cancer and my urologist found a mass on top of my only kidney beside mt adrenal gland. At this time I don’t know how aggressive this cancer is and am scheduled to see a surgeon in a few days. I have absolutely no fear in death but do have a fear in the manner in which one dies. I do not want to drag my family nor myself through a long process that will deminish the quality of my life and cause a financial burden that my family just can’t afford. I have insurance but it isn’t very good insurance and what I have spent in doctor/hospital bills to date is more than we can afford. I am also worried about losing my employment in these economical hard times. I’ve looked on-line for any kind of assistance but, in my case, have found that SSI is my only option and that takes quite some time to receive. Does anybody know what a man is suppose to do in these circumstances, to make the best decisions for his family? I’m not so concerned about myself. I don’t want to leave my family in a mound of debt. I’m not suicidal or anything. I just know everyone owes a death. I just turned fifty years old three months ago.

March 9, 2010 at 11:43 pm
(20) coloncancer says:

Hello Steve,

My heart goes out to you. You are in a very difficult situation. Your courage and concern for your family are amazing.

Try to find out if there is a financial assistance program or financial counseling available at the cancer clinic where you are being treated. One of your cancer nurses probably can point you in the right direction.

Most clinics have a social worker or counselor on staff who specializes in helping people find every financial resource for which they are eligible. There are many programs at the local, state, and federal levels that may be able to help you out.

If you can work with someone knowledgeable in your cancer clinic, you will be able to figure out additional ways to defray the cost of your medical care. Many cancer centers even have special funds to help families in need.

Don’t give up hope. Talk to your doctor and learn about all of your options. That will help you make the best choices for you and your family.

March 11, 2010 at 4:18 am
(21) Steve says:

Thank you so very much for responding to me. I thought there for a while nobody was going to. I have found out that I have ademacarcenoma. I have surgery on the 16th of March. The surgeon said that it is malignant and that the mass is about the size of my fist. It has grown threw my large intestine. He says it is very curable but I have my doubts. With the information I have told you, can you make any kind of guess as to my outlook. Just trying to prepare myself as much as I can. Not complaining but have been in quite a bit of pain and haven’t been able to work. Don’t have very much energy it seems anymore. I don’t feel depressed but I suppose it is a possibility. I believe in God The Father, His Son Jesus Christ, and the Holy Ghost. I had great faith when I was younger but fell away from God and got caught up in “the world”. Sure wish I could take numerous things I’ve done back. But I think God has given me this time to make things right with Him. I believe once we are His…..we are ALWAYS His. I feel I was one of His sheep that got lost and fell into a ditch. He came after me to bring me back to His flock. I don’t wish to offend anyone on here and realize everyone has there own belief system. And I am not judgemental at all. Let God be the Judge. Who am I to judge? I thank you for your response and will follow your advise. For my families sake. It’s good to know someone out there cares. It’s a comfort. Steve

March 17, 2010 at 6:04 pm
(22) coloncancer says:

Hi Steve,
You are a really strong person. Having faith, whether in God or something else, is important. By the time you read this, you will have had your surgery. I hope it went well. If your surgeon feels that your disease is curable, that is good news.

I imagine your next step will be to meet with an oncologist to determine if you need chemotherapy and/or radiation therapy. Focus on the positive; it may help to remember that many cancers are curable. Keep the lines of communication open with your medical team too. This is so important at this stage, so that you can gather all of the information you need to make a good choice about what treatment is best for you.

And don’t be afraid to get a second opinion if you want one. This is a normal part of the cancer care process. Your doctor won’t be “offended” if you want another opinion. I, and I am sure many others who visit the website and message boards here, are thinking about you!

March 17, 2010 at 8:55 am
(23) Lisa says:

My grandmother is 78. My grandfather died 2 years ago this summer. They were inseparable. She has been pretty much dying of a broken heart ever since. She had had small symptoms of of cancer, probably colon, for years now. She has had blood in her stool, chronic low platelets, weight loss, etc. She has had various test at the cancer center over the years – bone marrow, colonoscopy, etc. They have never found anything. Over the last few months, she has had almost every symptom, that are listed under stage IV colon cancer. She has lost a great deal more weight and has become so weak. She has had a large wound on her leg for 7 months now, which they have treated with many anti-biotics and steroids. But it still hasn’t healed. She is in constant pain all over and especially in that leg. The Dr. has raised her pain pill from a Loratab 5 to now a 10 – the highest in that med. She is still in constant pain. She is very weak. I really feel she has advanced cancer, and I think she does too, but we don’t talk about it. She doesn’t want any more test, and we have told her that if that what she wants that’s ok. Is this the right decision? Is there anything we could do to make her quality of life better? What is the most time she would have left with these symptoms? If someone could help me please do.

March 17, 2010 at 7:13 pm
(24) coloncancer says:

Hi Lisa,
I’m so sorry to hear about your grandmother’s struggles. She is lucky to have a caring family to help out. She may be feeling that she wants no further testing because she is so discouraged. She is in pain and has a wound that won’t heal. These things would be enough to make anyone give up! If these issues could be addressed adequately, she would probably be in a better frame of mind to make the best decision about her options. It may be that the best decision is no further testing or treatment. And if that is what she truly wants, I think you and your family are wise to honor her wishes. However, her quality of life is still important.

Has she seen any other health care providers who can help manage her pain and wound issues? How is she eating? One possible reason why a wound won’t heal is poor nutrition. If she is depressed and eating poorly, this makes it hard for her body to rebuild the tissue needed to heal the wound. Have you talked to a dietitian? This might be helpful. A dietitian may be able to help your grandmother get the nutrition she needs to heal better. There are liquid supplements – kind like Ensure, only more targeted to wound healing – that might help her a bit. These supplements contain specific nutrients, like vitamin C, arginine (a type of protein), and zinc, that promote wound healing. Certainly, if she has advanced cancer, nutrition isn’t going to cure her, but if it can improve her quality of life, then it might be worth addressing. You can ask her doctor for a referral to a dietitian.

If her current pain medications are not keeping her pain under control, she (with you and your family’s help) should talk to her doctor about other options. There is no reason for someone to have intense pain all the time. Many people with advanced cancer are under-treated for pain. If this is the case for your grandmother, a different medication might be what she needs. Only her doctor can determine what medications are right for her, but I encourage you to keep pushing to get answers on how to better control her pain.

Finally, would she be open to Hospice care? This type of care is given by specially trained doctors and nurses who can address quality of life as a top priority. To learn more about this, you can check out: http://dying.about.com/od/whatishospice/a/whatishospice.htm.

March 28, 2010 at 8:09 pm
(25) dixie says:

I was diagnosed with colon cancer March 2009. I had the surgry and 12 chemo treatments. I have since had a follow up colonoscopy and ct scan. No plops or cancer and no tumors spotted on my ct. I have been having pain in my upper left stomach area and into my back my ct scan showed a mildly enlarged spleen. My blood work has all been good. I see my doctor in april but I don’t understand why I have the pain and what it means.

March 30, 2010 at 5:27 pm
(26) coloncancer says:

Hi Dixie,

There are many things that can cause an enlarged spleen and stomach pain, so you shouldn’t assume that this is cancer-related. The only way to get to the bottom of your symptoms is to see your doctor. The sooner you can get in for an appointment, the better.

If your follow-up appointment with the doctor is still a few weeks away, I recommend you call your doctor’s office or clinic and ask to speak to the nurse. You can tell the nurse about your symptoms and your concerns. If needed, the nurse can help you get in to see the doctor sooner.

Keep in mind that there’s no reason to wait to see your doctor if you have symptoms that are causing you a lot of concern now. You know your body best. Taking care of yourself by contacting your doctor is a good next step.

March 30, 2010 at 7:08 pm
(27) Kay says:

My 38 yr old sister-in-law had a mass removed from her colon on Friday(March 26), and we just found out today that it is Stage 4 and it is in her liver and aorta. Needless to say, we are in shock…any insight, hope or tips that anyone can give us would be greatly appreciated!!

March 30, 2010 at 8:55 pm
(28) Kellie says:

My boyfriend was diagnosed with stage IV colon cancer in December of 2006. He had a large tumor in his colon that had metastasized throughout the abdomen which was full of ascites. The pet scan revealed a caked omentum and many other hot spots. We selected a surgical oncologist and began chemo. During the first few weeks, the doctor removed the ascites every other day with a needle (2-3 liters each time). Eventually the chemo slowed the production of ascites (thank goodness). Anyway, after 3 months of chemo, the surgeon talked to us about Hyperthermic Chemotherapy and Cytoreduction Surgery. Basically, they went in to debulk the cancer. They took the omentum, the appendix and removed over 300 lesions in the peritoneal cavity (more than they expected to find based on the scans). Then they pumped hot chemo throughout the abdomen for 90 minutes before closing him up. This is sometimes referred to as a “belly wash”. This surgery was in April of 2007. He had chemo for 3 months after. By October of 2007, he was finally back to normal. There was no evidence of disease on the scans and he continued to have clean scans every 3 months until January 2009. This was a blessing. I wish it could have lasted longer. Anyway, the January scan showed a small tumor on the spleen only. The surgeon was not convinced. He said this cancer was not a bulky cancer, so he feared there was more than just what was on the scan. He wanted to do another “belly wash”, but first 3 months of chemo. After three months of chemo the visible tumor had shrunk to half its size, so we hesitated with this big surgery, but decided to go ahead with the plan for July 28. It worked the last time, so why not. The surgeon was correct, there was more than just the tumor on the spleen. They took the spleen, the gall bladder, and 3 small sections of the small intestine. They also removed a few spots within the peritoneal cavity and a tiny spot on the stomach. Two days after surgery, there was an internal hemorage. He lost 2 pints of blood in minutes. It was a nightmare. Apparently the pancreas swallowed a blood vessel? Anyway, he recovered but then again within two weeks, he became very ill. Sutures in the intestine came lose, and he was being poisoned. They put 2 drains in (tubes on both sides) and put him on TPN (total parental nutrition – picc line) for 70 days until the fistula closed up. This brought us to Halloween. What a rough road. Unfortunately, now that he was able to have food again, he could not eat. Nausea and vomiting throughout November every time he would eat. He restorted to a liquid diet in December because he was having so much trouble eating solid foods. In January, he became jaundice, so we knew something else was going wrong. We went back to the surgeon, and they did an ercp. They found that there was a fold (crease) in the duodenum that must have developed after surgery. This is why he could not eat. Oh and by the way, your cancer is back and that is why you are jaundice. The cancer returns this time on the outside of the bile ducts causing a stricture. The liver is congested. They put in plastic stents at first and then permanent metal since the cancer is inoperable. They recommended chemo, but he will have no more. He is tired and filled with grief. I am doing my best to keep him alive.

March 31, 2010 at 6:10 pm
(29) Joe says:

My father was diagnosed with colon cancer in July 2009. The tumor broke through the colon wall we were told by Doctors. The tumor was removed along with 18 lymphnodes which were tested. The Doctor said that 12 of the 18 lymphnodes tested were cancerous. My father was placed on chemotherapy for 6 months and all of his scans while getting the treatments showed he was clean. Two months after stopping chemotherapy my father started to feel uncomfortable. He said his stomach felt bloated. After taking him to the Doctor they tested him and informed him that he had malignant ascites and nodules in his stomach. They inform us that he has metastatic cancer and they will be treating him with Erbitux. I just don’t know what his prognosis is exactly. The Doctor’s tell us that he can expect to live two years (best case scenario). But I just have a feeling that it is less than that and that they are just trying to spare us worse news. Everything that I have read with regards to Malignant Ascites refers to a poor prognosis. Does anyone know about this?? Any information would be greatly appreciated.

April 6, 2010 at 7:08 pm
(30) coloncancer says:

Hi Joe,

My heart goes out to you and your family. I’m sorry to hear that your father’s cancer has returned.

An article on malignant ascites and survival was published in the Annals of Oncology in 2007. The researchers followed a large group of people with malignant ascites to track how long each person lived after first receiving the malignant ascites diagnosis. Survival ranged from a few months all the way up to nearly 5 years.

I am thinking that your doctor is considering your father’s personal situation to give a “best guess” of two years for the best case scenario. I wish that I, or someone, could give you a more precise answer. It stinks, but in reality, it’s nearly impossible to know with certainty how long a person with cancer that is considered incurable will live.

Do you and your family want to know his prognosis or does he want to know this information? The reason I ask is because I believe it’s important to respect the wishes of the person with cancer regarding how much information he or she hears about prognosis. My husband’s grandmother, who was in her late-seventies at the time, had a grapefruit-sized lung cancer. Due to having multiple sclerosis, her doctors recommended against treatment. She never, ever wanted to know anything about prognosis and we were never even sure she understood that she had cancer. The doctors said, “6 months.” She lived nearly 3 more years after the diagnosis. Sometimes, ignorance is bliss.

I don’t say that to joke, but only to give an example of how different people have different ways of coping with a diagnosis of incurable cancer. If your father really wants to press the doctor for more information about his prognosis, I think that’s fine and he should do what his heart guides him to do. But if he isn’t anxious to know this, I don’t believe it’s something you should press.

If you can focus on helping him feel good and live every single day exactly as he wants, you’ll be giving him an incredible gift. Again, I am so very sorry that your family has to go through this. Colon cancer really is unfair!

April 4, 2010 at 3:45 pm
(31) Petra says:

Kay and Everyone:
We know exactly what you and your family are going through. It’s like your life comes to a complete stand-still.

My husband, 53, was diagnosed in January with metastatic colon cancer that has spread to liver and lung. After the surgery of having the tumor in his colon removed he started chemo therapy in February.

He has had few side effects that we start to prevent now before they even pop up whenever he has chemo. One was that he immediately started using the Biotene products to combat possible oral problems.
He also prepares/prevents constipation etc. with OTC products, exercises (walking, playing golf) and is outdoors as much as possible, along with drinking plenty of liquids.

There is not much one can do about the cold sensitivity except to avoid touching cold or even cool items, breathing cold air, eating and drinking cold foods.
Staying warm by dressing warm and comfortable is important also. Luckily he has a good appetite and eats plenty. The protein shakes like Boost help in gaining strength and to “buff up” a bit, too. He was able to go back to work part-time and is among his friends as much as possible.

He is determined to beat the odds. “He is one of my patients that is doing well”, says his oncologist. I think it’s wrong for a doctor to put a time limit on anyone’s life and thankfully his doctors are not doing this.

He will have his first follow-up scan end of April and we are anxious.

June 3, 2010 at 9:01 am
(32) Donna says:

Good luck to all on here. Cancer is such a brutal thing. I went thru stage 3 breast cancer a few years ago and now my sister is going through colon cancer. Originally it was stage three but now has a small spot on the lung which is being operated on June 29th and then more chemo. Does anyone know if the spreading stops or is this just the start of other spots popping up somewhere. She is having a pet scan today.

June 3, 2010 at 8:10 pm
(33) coloncancer says:

Hi Donna,
I’m sorry to hear that both you and your sister have had to cope with this terrible disease. I’m sending positive energy your way.

Your sister is so lucky to have you there for support. As someone who is a cancer survivor, you can give her a level of support that no one else can. You are so kind to search and seek out answers to help her out.

Regarding stage of cancer, once cancer has spread it is considered stage 4. For most cancers, once they are classified as stage 4, they are not considered curable. But the good news is that for many cancers, the disease can be stabilized. It can be treated in a way that will keep it from progressing further.

People can live for several years with cancer being treated as a chronic disease. They will need to continue to take medication to manage it, but they can feel good and continue to “live their lives.”

For your sister, have you looked into clinical trials? I’m not sure where you are located, but there may be clinical trials in your area or in the hospital or cancer center where she is being treated. Clinical trials aren’t right for everyone, but it’s worth looking into this option for your sister. She might decide it’s not right for her, but at least you can look into it and help her make an informed decision.

If you go to the website http://www.clinicaltrials.gov and search on “colon cancer” (no quotes), you’ll find listings for 1,700 clinical trials. They range from new drugs to dietary supplements to quality of life studies.

And don’t forget about getting a second opinion. If you sister isn’t completely sure that she has heard about all options for treatment, a second opinion can help.

Suzanne (Colon Cancer Guide)

June 9, 2010 at 11:46 am
(34) Kim says:

This is a great resource for patients and families. Thank you for your time and effort.

June 13, 2010 at 7:09 pm
(35) coloncancer says:

Thanks Kim. I’m glad people are willing to participate and share their thoughts, concerns, criticisms and comments! Suzanne, Colon Cancer Guide

June 11, 2010 at 11:56 pm
(36) Karen says:

I’m wondering how things are going, Steve. (My dad was just diagnosed with Stage 3C colon cancer so was reading this forum). I wanted to reinforce your thought that God is giving you the opportunity to draw closer to Him and renew your relationship with Him. I hope that you can find a Christian friend that will help you take next steps in your faith. Best wishes!

June 13, 2010 at 7:08 pm
(37) coloncancer says:

Hi Karen & Steve,

Actually, this comment is for anyone who is seeking support for coping with cancer and who wants that support to have a Christian focus. Try Googling “Christian Cancer Support” (without quotes) and you will find a number of resources that may meet your needs. You will find prayer groups, support groups of other Christians coping with cancer, and more. The most important thing to do is find support that meets your specific needs. For some people, that might be Christian-focused support. For others, it might mean support from women specifically or men specifically, or only people with your type of cancer. There are an amazing number of support resources, so don’t be afraid to look around and get what you need. Cancer is tough and getting what you need is vital to your mental and physical health.

June 19, 2010 at 1:56 pm
(38) Pat says:

I was diagnosed with stage 4 colon cancer in 2000 at the age of 48. I won’t get into the details but to make anyone feel better I had half my colon removed and three fourths of my liver which had 4 tumors. After the surgeries I had six months of chemo. It was a long recovery. I was so scared but I’m still here writing 10 years later with no evidence of cancer. I gained a lot of weight during the chemo and was unable to lose it until I really went on a 2 hour a day exercise program I started in Jan. I’ve lost 30 lbs. and now the doctors think something is wrong. They also can’t believe I’m still here. I also know a woman who’s 18 years cancer free that had stage 3 colon cancer. So it’s not a death sentence anymore. My dad was diagnosed with stage 4 colon cancer after me and died within 2 weeks but he was in his 80′s. So everyone keep your chin up. Go to a good doctor or cancer hospital and do your own research. That’s what I did.

June 20, 2010 at 7:49 pm
(39) coloncancer says:

Hi Pat,
Thanks for sharing your inspiring story! It’s wonderful that you’ve taken the time to share your experience with us. And congratulations on losing 30 pounds. That is not easy.

I’m sure your doctor was concerned, because for some people, unintentional weight loss can signal cancer. But there’s a big difference between unintentional weight loss and what you’ve done. You clearly lost weight with a lot of effort. That is not the same as just having weight come off without trying.
Thanks again! Colon Cancer Guide Suzanne

July 29, 2010 at 4:35 pm
(40) Dawn says:

I appreciate all the comments. This really helps; like a support group. I just found out one of my family members has colon cancer, that’s why I’m here. Another relative died of colon cancer last year. She was diagnosed with it in 2007 and died in 2009. She was older and chose because of her age not to do any chemo…she wanted to live in peace and die with as less aggravation as possible. She heard about the aggressiveness of chemo and was not comfortable with undergoing the treatment. Her family supported her decision by leaving it all up to her with no pressure added… She prayed and God helped her through her illness. She often said she felt no pain but much discomfort in her body. God rest her soul.

July 30, 2010 at 4:35 pm
(41) coloncancer says:

Hi Dawn, My heart goes out to you and your family. I am certain that everyone reading your story feels the same. It sounds like your family is very supportive, which is a blessing. Your comments about your relative who opted not to receive any aggressive treatment are an important reminder that when it comes to cancer, there is no “one size fits all.” The decision to receive or not receive treatment is very personal. Nobody should be pressured into pursuing or not pursuing any particular treatment plan. Each person needs to collect as much information about options and then decide what is right for him or her. Having a supportive family who doesn’t question your decisions is a gift. We wish you well!
Colon Cancer Guide Suzanne

July 30, 2010 at 11:45 pm
(42) Susan says:

My husband was diagnosed with stage 3 colon cancer two years ago. He had surgery, followed by chemotherapy. The long lasting side effects continue to bother him. He’s always tired and cold. Two weeks ago his CEA went from 2.0 to 3.4. Two days ago he had a PET scan. When I spoke with the doctors office today to get the results I could hear the nurse typing on her computer to bring up the results. She began to stammer and told me the doctor hadn’t signed off on the test and they would call us back. They didn’t. Now it’s the weekend and my imagination is driving me crazy. I’ve worked in doctors offices before and more than once we would hold bad results over a weekend to give the patient one last weekend before we had to deliver the results. I’m anxious and nervous and found this board to have some comforting comments on it. Thanks for being here.

August 2, 2010 at 10:51 am
(43) coloncancer says:

Hi Susan,
I’m keeping you and your husband in my thoughts and sending positive energy your way. Waiting for test results can cause so much anxiety. If you suspect the test results won’t be good, it might be helpful to line up someone to talk to about it so you can get the support you need. Maybe a counselor or social worker at your cancer center or a clergy member could help. Many cancer treatment facilities have support groups that can help. Some have support groups for spouses and family members. Just knowing that others care and are there for you if you need to talk is a big help for many people. Colon Cancer Guide Suzanne

August 3, 2010 at 4:31 am
(44) bernie says:

just reading the board i have great hope for my friend who has been diagnosed with the same cancer (colon liver and lung) as glenn wife dated 21 january 2010 i would love to know how she is doing on her new treatment and what the name of it is. any help at all would be more than welcome, i have included all of the people suffering from cancer in my prayers and good wishes for the future god bless you all

August 4, 2010 at 5:50 pm
(45) coloncancer says:

Hi Bernie, Thank you for sharing your kind words with everyone. I know the other readers appreciate your prayers and good wishes. Colon Cancer Guide, Suzanne

September 10, 2010 at 11:01 am
(46) Jen says:

My father was diagnosed in 2007 after doctor’s thought he just had a bad case of the “stomach flu”. They sent him home despite the fact that he lost 25lbs in a month. Later they found total blockage of the colon and let him know that he had cancer. They didn’t discuss the stages at that time. He took a turn for the worse in March of 07, when I was told he was not “thriving” and he lost more than 50lbs. He was in Florida at the time and the docs didn’t give him much of a chance. He was jaundice and his liver was failing. They told us that they didn’t think it was cancer there….boy they were wrong! We eventually got him home in the Summer of 07 (we live in MI). He began to recover despite the doctors saying he wasnt going to make it and releasing him to a nursing home with little to no care. Shortly after his “recovery” we had another episode of illness. He was then told that the cancer spread to his liver. Again we were told to call hospice there is nothing they can do! Its was terrible as I am the baby in the family much of a daddy’s girl. So to give all hope, my story isn’t too bad considering….. Shortly (hours) after the doom and gloom doctor gave us the “nothing we can do hospice line” an oncologist came in and let us know that there was hope… My father is still with us today, albeit with knowledge that he will not be cured. He has restored his life to as much “normal” as he can. We have celebrated 3 birthday’s (as of Aug) since we were told there is “no hope” by more than one MD I guess I could say, never give up! Cherish the times that you can spend with the ones you love! Hang in there to all who have been given the terrible news. Always seek a second opinion because as you can see not everyone sees the glass half empty! I hate to imagine how I would feel if we would have listened to the two doctors who immediately gave up on my dad!

I agree with the “no pressure” comment you have to make decisions for youself. Caregivers cannot be selfish (although its hard for me). I can say that I love dad enough to let him do whatever makes him happy. I would never want him to sacrafice for me at this time. I’d say more than evern its a time for him to be selfish for once! He raised 7 kids without being selfish one bit.

September 15, 2010 at 12:27 pm
(47) coloncancer says:

Hi Jen, Thanks for sharing your dad’s story with the group. This is encouraging and helps people understand the importance of second opinions and exploring all options.

Your dad is lucky to have you there at this tough time. Sending positive energy your way!
Colon Cancer Guide Suzanne

September 17, 2010 at 8:59 pm
(48) Kaye says:

My husband a man with great strength and faith was diagnosed with Rectal Cancer in May. He had emergancy surgery to clear the blockage and has a colostomy. He has radiation and chemo and was waiting for a surgery to remove the mass when he was found to have Metastic Cancer to his Lymph Nodes. It has followed the chain all the way from his pelvic area to his sternum. Surgery was cancelled by the Chemo doc who told us he was sorry for the bad news and was not going to do the chemo, God spoke thru my husband and he said he was in for the haul. and chemo started. We then went to a follow up appt with the surgeon he was not pleased that this had taken place, he stated that it is not always the best option and wants to do the surgery, he said he has patients living for 7 years with this. After reading these posts I think he may be right. So we wait the weekend while the Dr’s converse and let us know what the next options may be. I thank you all for your comments as it has opened my eyes to the fact that my husband could live for many years to come. Thank you again.

September 22, 2010 at 12:58 pm
(49) coloncancer says:

Hi Kaye, Thanks for sharing your husband’s story. He is fortunate to have you to support him as he goes through the difficult process of figuring out what treatment route is best. Keep getting opinions – second, third, fourth, whatever you need – to make a treatment decision you’re both comfortable with.

When it comes to treating cancer, sometimes there are very clear cut treatment paths that give the best outcomes. In these cases, it’s an easy decision about how to proceed. But other times, there are many possible treatment options, each with potential benefits and risks.

When you’re in the latter situation, gathering several expert medical opinions can help you determine what you want to do. And never be afraid to ask questions. Doctors often present things in “medical speak,” and I think patients and their families should know it’s OK to ask lots and lots of questions to make sure you understand everything that’s being presented.

Good luck and know that we are all thinking about you and pulling for you and your husband!
Colon Cancer Guide Suzanne

September 28, 2010 at 7:39 pm
(50) Matti says:

Hello all. I am looking for some advice. My mother was diagnosed with colon cancer in 2002. She had surgery and chemo and did well until 2006. She then had recurrent disease and another surgery. This time had difficulty with wound healing that took months. Now she has lung mets. I don’t know what to say to her about this next phase of our journey. Are there any survivors who have any thoughts. I don’t want to say things that she may find annoying/condescending/ or unrealistic. Would appreciate any input

September 30, 2010 at 3:27 pm
(51) coloncancer says:

Hi Matti,
This is a tough situation. I’m so sorry that your mom is coping with a colon cancer recurrence. She is fortunate to have you for support. It’s obvious from your comments that you care very much about helping in a way that best meets your mom’s needs. That’s very generous of you.

Perhaps you can make an appointment to talk to a social worker or counselor at the treatment facility where your mom is receiving cancer care. I would suggest you talk to a counselor on your own, first. You can voice your concerns about how to help your mom without making the situation more stressful for her. A trained mental health professional will probably have some good ideas about how you can help out.

Do you have the kind of relationship with your mom where being direct will be appreciated? If so, you can simply ask, “I want to help you in any way I possibly can, but I don’t know what you need. Please tell me what you need from me…whether it’s to be left alone for a time, a shoulder to cry on, a “pep-talk,” help researching options and what to expect… let me know and I’ll do my best to offer the type of support you need and want.”

If you can go the direct route, I think you mom may appreciate it. But if you aren’t comfortable doing this or don’t think it’s right for your mom, try to be open to just listening and being supportive in a general way.

I think that for a lot of people, they are afraid of the silence when they are around someone who’s received a tough cancer diagnosis. In these cases, it’s common to just “talk to fill the space.” I think this is when people tend to blurt out or say things they maybe didn’t intend to say that may seem hurtful or inappropriate for the person with cancer. It’s OK to be silent together. You don’t always have to have “the right” thing to say or do. Sometimes, I think, there isn’t a right thing to say.
Colon Cancer Guide Suzanne

November 19, 2010 at 6:36 pm
(52) Carol says:

All of the stories listed are very helpful and full of insight into this terrible disease. I am 49 years old and was diagnosed with Stage 4 Colon Cancer in March 2009 with mets to the liver and bones. I haven’t found alot of information about the mets to the bones. Chemo thus far has been very successful. Emergency surgery removed all of the cancer in my colon with no return and the spots on my liver continue to get smaller with every scan. I haven’t been able to find much information about bone mets. The Dr. has told me that the mets on my bones will never go away. Does anyone know anything about any type of treatment for bone mets? I trust that God will continue to heal me but there is always that human fear.

November 24, 2010 at 2:24 pm
(53) coloncancer says:

Hi Carol,
I’m so sorry that you have to face an advanced cancer diagnosis. Nobody should have to do this, but you sound very strong and ready to take care of yourself. I’m sending positive thoughts and prayers your way.

It’s true that most types of bone metastases are not curable, but they are very treatable. The goal is to keep the bone metastases stable. They may not shrink with treatment, but they can be kept from growing for a long time, often many years.

The fact that the spots on your liver are continuing to shrink with every treatment cycle is a very good sign. This means your cancer is responding to treatment. The chemotherapy won’t typically kill cancer cells in bone, but it can slow them down. Other medications can be used to keep bone metastases stable too.

The American Cancer Society has some information to help you learn a little more about what to expect after treatment of bone metastases. You can read this at their website: http://www.cancer.org/Cancer/BoneMetastasis/DetailedGuide/bone-metastasis-after-follow-up.

Colon Cancer Guide Suzanne

December 18, 2010 at 10:04 pm
(54) Amanda says:

Hello, I sure wish I would have read this earlier. My grandfather was told October 1 2010 he had colon cancer it spread to his liver and lungs. We were devastated. We did Chemo and it made him so sick. Finally he got so week chemo was not an option. December 9 just 70 day from being told this horrible news my grandpa passed. He was 79. He fought so hard. He never had a symptom, and as long as I been alive he was healthy. It saddens me to here these stories. I wish my grandpa would have been check when he was 50 and Iam sure he would be here now.

December 21, 2010 at 4:40 pm
(55) coloncancer says:

Hi Amanda,
I’m sorry to hear about your grandfather’s death due to colon cancer. It is a terrible disease. Colon cancer screening is a very important part of catching colon cancer early, before it has spread beyond the colon. It’s important for all adults to talk to their doctors about screening. As you found out through your grandfather’s situation, doctors don’t always offer colon cancer screening to people who need it. Learn more about colon cancer screening guidelines at: http://coloncancer.about.com/od/screening/f/What-Are-Current-Colon-Cancer-Screening-Guidelines.htm

December 22, 2010 at 7:26 pm
(56) Amanda says:

Yes you are right!! I am making sure everyone I’n my family know how important it is to talk to there dr and get check.

December 23, 2010 at 12:01 am
(57) Bo says:

Hi all,
My father had a surgery for removing the portion of colon cancers (Stage C1) in Oct. He was on Xeloda-Oxaliplatin Combination (XELOX) for the past 3 weeks. Just yesterday after CT scan, doc found it starts to spread to lung and liver. I’m not sure what will be the best solution for this now. How much time do you think my father will have? He is 56 now. He has minimal adverse reaction to the Xelox regimen.

Thank you!
bo

December 27, 2010 at 6:27 pm
(58) coloncancer says:

Hi Bo,
Unfortunately, there’s no way to know how much time someone with advanced colon cancer may have to live. Many people live for several years with advanced cancer. Other people have cancer that progresses more quickly; they may live for a few months after diagnosis.

Your father’s doctor is the best person to ask about how much time your father has. Your doctor can look at your father’s full medical situation, including how his cancer responds to different types of treatment. The doctor won’t know exactly how much time your dad will live, but he or she is the best person to make an educated guess.

I would ask your father’s doctor to explain all possible treatment options for your dad. The doctor can explain the pros and cons of each option, and give you a professional medical opinion regarding how best to proceed. Also be sure to ask your father’s doctor about palliative care. Palliative care is designed to give people the best possible quality of life as they live with cancer.

Your father is fortunate to have you to help him get the best possible treatment for his situation.

Warmly, Colon Cancer Guide Suzanne

January 10, 2011 at 2:05 pm
(59) Debra says:

I had surgery for stage 3 colon cancer (one cancerous polyp) in September 2008. I have been free and clear until now my iron is very low in red blood cells so i’m going for blood test and fecal blood test. Is this a serious sign of recurrence? My doctor is being very vague.

January 20, 2011 at 10:34 pm
(60) coloncancer says:

Hi Debra,

Your doctor may be vague because he or she honestly has no idea what is causing your low iron. It’s important that you follow up and get proper testing to determine the cause. That might mean getting a colonoscopy or an endoscopy (a scope of the upper GI tract – mainly the esophagus and stomach). Your doctor may order other tests too, such as a CT scan or an MRI. The most important thing is to make sure you figure this out. The sooner you know, the sooner you can figure out a plan for any type of treatment you may need. It’s important to be your own advocate to get what you need out of your health care. Colon Cancer Guide Suzanne

January 12, 2011 at 10:40 am
(61) Tanitta says:

Hi, my name is Tanitta and I was diagnosed with Metastatic Colorectal Cancer a year ago today. 1-12-10. It was odd and unexpected for me and my family because I was in the best of health at the time. I was 40 yrs old a single mother and had just started a new life with my 13yr old daughter. So you can imagine that once I found utopia in my new surrondings I couldnt believe I was sick with cancer. My doctors said that I was the healthiest sick person that they had met. Well to make a long story short. I went into emergency with what I found out was a swollen liver from the metastatic colon cancer. About 2weeks later, My team of doctors and I and my family decided to start six mos of chemo therapy. It was hell, I’m not going to lie, but I kept telling myself it could be worse. In 3mos after starting we assessed my cancer cellswith a ctscan in the colon and liver and they had shrunk by half. So I was optimistic hoping that another 3mos the last half would shrink. My doctor had been honest with me in letting me know that this wasnt the kind of cancer that normally went in remission but I was still hopeful. After another 3mos went by I got assesed in July and they had shrunk a little more enough to take a 3mo. break until this last Oct. I have tried to step up my nutrition and build my immune system with juicing and that has helped. It gives me energy where I the chemo had made me weak. So for the 3 mos that I was Chemo free, I felt great with a few of the side affects that seem to be common. So this has all been unconscionable for me.

January 20, 2011 at 10:44 pm
(62) coloncancer says:

Hello Tanitta,

I’m so sorry that you’re facing this diagnosis and the difficult treatment. You sound like an incredibly strong person and that you are defying the odds. I’m keeping you and your family in my thoughts. Colon Cancer Guide Suzanne

January 12, 2011 at 10:43 am
(63) Tanitta says:

But I share all of this for 2 reasons and 1 is to possibly give hope to anyone approaching or going thru these circumstamces. I believe that with the right medical team, a positive attitude, a belief in a Higher Power and the support of family and friends, I have had a better quality of life. I’m currently back in chemo therapy to continue my fight with colon cancer. I praise my heavenly Father everyday. And look forward to any otherdays that I’m living longer and spending time with my soon to be 15yr old daugher next mo. My second reason for sharing is to possibly get some incite on what is baffling me the most about my cituation.
My doctors have not been able to advise me specifically as to how I developed cancer, but I feel that it was my previous living arangements. I was living with someone who was not at all supportive and who was stressing me and my daughter and was smoking cigarettes like a chimney and they were unyeilding. I’ve asked my doctors if they think thats how I develloped my disease and they say that there’s no way to tell. Is there any research or evidence that would lend credence to this because I’m concidering actions to change this cituation as I’ve had to return to these living conditions due to my illness. If there’s anyone out there who has info or could direct me honestly, please let me know, yea or nea. Thanks!

January 20, 2011 at 10:58 pm
(64) coloncancer says:

Hi Tanitta,

There are studies looking at the connection between stress and cancer. So far, nobody has proven that there is any connection between emotional stress and developing cancer. I hope this eases your mind that your living situation is NOT the cause of your colon cancer. Being exposed to second hand cigarette smoke is not proven to raise colon cancer risk either. Of course, it isn’t healthy to breathe in smoke, so if you can limit the amount of cigarette smoke you are exposed to, that’s great. But if you can’t avoid the cigarette smoke, try not to stress yourself about it. This is probably difficult (not to stress), but just focus on taking care of yourself.

Regarding what might have caused your colon cancer, I agree with your doctors – sometimes, we can never know. Cancer is a terrible disease precisely because it often has no explanation. Any one of us can get cancer at any time. Certainly there are things we do or don’t do that raise the chances of getting cancer – the best example is smoking as a cause of lung cancer. But those are just statistics. They don’t guarantee any one person will or won’t get cancer. Even among people who smoke, some don’t get lung cancer. And there are people who have never smoked a day in their life and they do get lung cancer. We often have no idea why.

With cancer, life is not fair. Cancer just plain stinks. Despite your tough situation, it sounds like you’re doing everything you need to do to manage your cancer and move forward with your life. You are an inspiration. It sounds like a cliche, but I do believe that by sharing your story and your positive attitude, you are doing more than you can know to help others. Thank you.
Colon Cancer Guide Suzanne

January 20, 2011 at 11:51 pm
(65) Debra says:

Dear Suzanne,
Thank you for your advice. I just had a colonoscopy today and it was all clear. I had a blood test at the hospital today as well and will see if my iron has improved from 2 months of iron supplements. My Dr. seems to think it’s my diet – so we’ll see. I certainly was happy to have a good result from my colonoscopy.
I agree with Suzanne – everyone must be their own advocate! Push for the best treatment available & if you notice any difference in bowel habits or you have concerns about your test results – keep asking until you’re satisfied. The medical system is there to help us!

Kim

January 22, 2011 at 8:03 pm
(66) Marie says:

My friend fired her drs & went on a macrobiotic/health food/vits/supplements and lived at least 25 years after her surgeries, chemo & lost all her teeth from the chemo. She lived long enough to raise her five children. She had pain during many of her last years. Once when i stopped by she was on her way out the door to bring a casserole to someone in her church group who was ill!!!

She died finally at about 75, although she looked very young and her 2nd husband was 57. He looked much older than her. She outlived her first husband. She was a walking tutorial on vits and nutrition and warned about red meat and sugar. Especially bad for cancer.

She would say change your diet immediately! And take nutrition seriously and no drs unless absolutely necessary.

January 26, 2011 at 3:39 pm
(67) coloncancer says:

Hello Marie,
Thank you for sharing this story about your friend. It sounds like your friend had the benefits of both conventional care – the surgery and chemotherapy that you mentioned – and good nutrition that she embraced on her own. I fully believe that nutrition is the foundation of good health and everyone should work to improve their nutrition when they can.

Once cancer is established, I do not believe that nutrition alone is the most effective way to keep the cancer from spreading. But I do believe that doing only surgery, radiation therapy, and/or chemotherapy, but not doing anything else to change health habits, is missing out on a big part of healing.

The conventional treatments often can wipe cancer out, but taking charge of health by eating well, exercising regularly, having strong social and family networks, managing stress, and more is what helps many people reclaim their lives and heal.

I encourage everyone to get as many medical opinions as they need to map out the best cancer care plan for themselves. Many doctors are happy to have patients who are motivated and who want to be an active participant in their own care. If your doctor is discouraging or doesn’t want you to help out with your own care, find another doctor.

There are many wonderful oncologists who are very open to having people use nutrition, supplements, prayer, acupuncture, massage, meditation, and many other things along with conventional treatment.

Just be sure you share with your medical team anything you plan to do in addition to regular care to manage your cancer. Some things, such as certain dietary supplements, can interfere with treatments or make them more toxic or less effective. To avoid those pitfalls, keep everyone, including your doctor, in the loop.
Colon Cancer Guide Suzanne

January 31, 2011 at 5:16 am
(68) debbie says:

My Dad had rectal cancer seven years ago. He had radiation, surgery with resection (permanent colostomy) and mild chemo (didn’t lose his hair) He did not follow up after that. Now seven years later he was having back problems and an MRI showed a blocked ureter, which upon further investigation showed a tumor on the bladder blocking the ureter and they said his left kidney has been non-functional for about a year. His PET scan shows no other spreading of cancer. The bladder tumor is metastasized colon cancer and is 5cm. The Doctor said his cancer is not cureable and wants to start chemo to extend his life or if Dad decides not to have chemo the Doctor said they would make him comfortable and we could call hospice. I don’t understand why this is looking so fatal. Why can’t they remove the tumor? They said because he had radiation in this area they can’t give it again. He had a colonoscopy and they removed 4 polyps which the Doctor said didn’t look cancerous but the biopsy is not complete, all else looked fine in the colon. They want to do chemo every two weeks for 6 months. 4 hours receiving it and then some kind of two day take home drip. HELP!!!!!!!!!!!!!!!!

February 8, 2011 at 5:40 pm
(69) coloncancer says:

Hi Debbie,
I’m so sorry that your dad is dealing with a recurrence of cancer. Regarding surgery, it is possible that the tumor is in a location that makes it impossible to remove. Regarding radiation, there are lifetime limits as to how much radiation any one person can receive. When we go beyond these limits, the harms of more radiation begin to outweigh the benefits. For example, tissue damage can become so great that it endangers a person’s life to give them more radiation. Because your dad already received radiation in this area of his body, he may not be able to have any more.

You should ask his doctors to explain to you (in terms you understand), why surgery isn’t an option and why radiation isn’t a good idea. I don’t think it’s a good idea to try to make treatment decisions without understanding what your doctors are thinking. If they can explain to you why they feel chemotherapy is the best option for your dad, you’ll feel better about making treatment decisions. Also, I urge you to get a second opinion for your dad’s case. This will help you make sure all treatment options have been explored.
I’m keeping you and your family in my thoughts.
Colon Cancer Guide Suzanne

February 3, 2011 at 6:52 pm
(70) Reenie says:

My 33 year old son was diagnosed with signet ring cell cancer in his colon and stomach this summer. He was placed on three different chemos and his tumor count fell rapidly. The doctors took him off chemo to let his body rest and the cancer came back stronger than ever in just 6 weeks. He had to have emergency surgery to remove 4 foot of small bowel right before Christmas and his now back in the hospital unable to urinate and has a urinary tract infection. If any of you has this type of colorectal cancer and your doctor has found a chemo combination that has been effective will you please email me at albertwickard@aol.com Please keep him in your prayers.

February 8, 2011 at 5:23 pm
(71) coloncancer says:

Hello Reenie,
I’m so sorry that your son has been diagnosed with cancer. I’m keeping you and your family in my thoughts and prayers. The best way to determine what other options might be available for your son’s treatment is to get a second opinion. If possible, have another colon cancer specialist review your son’s case. This will help you determine if there are any other treatment options that may be better for your son’s case.
Colon Cancer Guide, Suzanne

February 8, 2011 at 6:04 pm
(72) Allyson says:

Hi there, my Dad has recently been diagnosed with Colon cancer. He had been away on holiday, he felt slightly unwell then was extremely sick and in lots of pain. He was rushed into hospital with a perforated bowel, due to colon cancer. He had no previous symptoms and, had even had screening via the NHS (in the UK) 6 weeks earlier, with a negative result. By the time he was flown home, saw a consultant, was scanned and then saw a consultant again, he was feeling too weak for chemo and has now decided not to have chemo as the consultant said that it would not significantly affect his lifespan and could make him feel worse. I am horrified that my previously very healthy Dad has been affected so much by this horrible disease in the last 8 weeks. We are now having to face up to the prospect of losing him. A few weeks ago, his oncologist gave him about 2 months, although this could be less depending on the complications encountered. When will a cure be found for this awful disease?

February 10, 2011 at 5:54 pm
(73) coloncancer says:

Hi Allyson,
My heart goes out to you, your dad, and your entire family. I am so sorry that he has received such a difficult diagnosis. A cure for colon cancer is sorely needed, there is no doubt about that.

Thank you for sharing your story. Despite how terrible your situation is, by sharing it, you have let others who are affected by colon cancer know that they are not alone.
Colon Cancer Guide Suzanne

February 8, 2011 at 7:22 pm
(74) Liz says:

Dear Suzanne,
My lovely mum has been diagnosed with large liver mets and lymph node involvement, and is starting her chemo next week. She had a colon resection following a peritonitis in oct last year. I hope that the liver mets can be reduced sufficiently so that surgery is possible, but the lymph nodes really worry me as I have read that it is linked to a poor prognosis. Have you got any info on this? My mum is only 66 and has no signs of the disease so far apart from diarrhoea. I so wish I could do something to make her feel more positive about the future. I love her dearly but live far away with my family, so I don’t see her often but call her as often as I can.
Cancer is a horrible, horrible disease, and my heart goes out to all the people who suffer from it.
Liz

February 10, 2011 at 6:21 pm
(75) coloncancer says:

Hello Liz,
I am so sorry about your mom’s colon cancer diagnosis. Giving her your support over the phone and/or email will mean a lot to her, I’m sure. Even if you can’t be there, she will know you are thinking about her all the time.

There is no way to know what your mom’s prognosis is until she begins treatment and the doctors can see how her cancer responds. Even cancer that has spread to the lymph nodes can respond well to treatment, so be sure to stay in the loop with your mom and her doctors so you know how things are going. If you want to read more about colon cancer staging and survival rates, try the following link:
http://coloncancer.about.com/od/coloncancerbasics/a/SurvivalRatesbyStageofDisease.htm

It’s normal for someone to feel hopeless and overwhelmed when receiving a cancer diagnosis, but there is help available. Would your mom be open to attending a support group or seeing a counselor? Even if she just goes for a session or two, it can help a lot to get support from either a professional or from other patients who are going through the same thing and can truly understand how she feels.
Colon Cancer Guide Suzanne

February 9, 2011 at 12:09 am
(76) Bern says:

Does anyone here have any experience using the new Proton Therapy radiation for inoperable colon cancer ?(it has metastisized to the tail bone)
If so, please share. Thank you!

February 10, 2011 at 6:33 pm
(77) coloncancer says:

Hello Bern,
The MD Anderson website has some basic information about proton therapy that may be helpful to you. You can read this at:
http://www2.mdanderson.org/cancerwise/2010/03/is-proton-therapy-right-for-you.html
Colon Cancer Guide Suzanne

February 9, 2011 at 10:33 pm
(78) Myra says:

My husband was diagnosed Stage IV (colon, liver, lymph nodes, omentum) in 2006. He has had 82 rounds of chemo! XELOX + Avastin gave him 3.5 years. We managed his side effects with B6, glutamine, milk thistle, probiotics, papaya enzymes, Biotene mouthwash. He’s been on FOLFIRI + Erbitux for another year… we’re now looking for clinical trials as his cancer has continued to progress to lung, more liver mets.

Pretty soon, it will be five years since his diagnosis. Stay positive.. he has a good attitude and says every day is a good day and he is lucky to be alive. We are hopeful that we will find a good trial (or maybe several).

February 10, 2011 at 6:27 pm
(79) coloncancer says:

Hi Myra,
Thank you, thank you for sharing your message of staying positive and having hope. Advanced colon cancer is a terrible disease, but you have shown that it can be managed and that people can have a good quality of life even while receiving cancer treatment. Your husband sounds like a strong and special person. You do too. Your attitudes are amazing.
Colon Cancer Guide Suzanne

February 13, 2011 at 8:43 pm
(80) Jennifer says:

I was very happy to read all the comments here about colon cancer. My mother at age 64 was diagnosed with Stage 4 small intestine cancer in November 2010. She had a bowel resection done and then also had to have stents put into her liver so she would not have to wear a liver bag. She also has had 4 treatments of chemotherapy. She is very weak at this time but soooo optimistic about getting better. The doctor said that at this time the cancer is stable. I was struggling with finding a balance between being realistic about her situation or giving her false hope, but after reading this, I think that there is real hope for her to live longer then just a few months if it is managed properly. The human body is an amazing thing!Thank you so much to all those who took time to post.

February 23, 2011 at 4:14 pm
(81) coloncancer says:

Hi Jennifer, I am sending positive energy to you and your mom. I know that everyone participating in this forum wishes only the best for your mom and hopes and prays that she has a good response to treatment. Your mom is lucky to have such a caring, supportive, and compassionate daughter.
Colon Cancer Guide Suzanne

March 1, 2011 at 4:40 am
(82) Debbie says:

Dear Suzanne
Thank you for responding to my post regarding my father with metastasized colon cancer on his bladder.
He has had one chemo treatment so far and unfortunately his pain is getting worse. They are having a difficult time controlling pain due to the fact that Dad gets blockages from opiates and that the tumor is also pressing on the large intestine. They are having him take small doses of opiates along with Milk of Magnesia. Every time he eats,the movement in the large intestine causes extreme pain. The mass is on the bladder AND the large intestine next to the colostomy stoma. The Doctor did say that if the tumor shrinks enough from the chemo, that they may be able to remove it. I am praying that it does shrink and that Dad will endure and make it through the 6 months of chemo. Praying for all of you out there.
Postive energy, love and prayers to all of you!

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