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mikew42
Posts: 113
Joined: Mar 2004

Here's a quick history. Had typical symptoms of blood in stools and told Dr. about it in a routine physical in January. He did a sig and found a tumor that was confirmed cancer by a colonoscopy in early February. I had a CT scan done and it showed no signs of spreading, so my wife and I felt pretty good going into surgery for a resection, done February 20th. Unfortuantely, when they did the surgery, they found three small (1cm) tumors on the liver. My wife and I were devestated because the on duty oncologist at the hospital said that average survival time is 1.5-2 years, with virtually no chance of survival of 5 years. I have visited many sites with discussion groups, but can only find a few with survivor stories. I am 41 with a wonderful supportive wife and three young boys (5,8 & 10). I would like to know if there are long term survivors to give me hope that upcoming chemo may actually work.

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Welcome Mike: you will find survivors here, and the
glass is half-full, therefore we concentrate on filling it up..what is exciting is that there are new treatments being discovered every day, so we must survive to take advantage of them. A good read for a newly diagnosed patient is Lance Armstrong's story "It's Not The Bike" ..stay tuned
for some pretty wonderful and supportive people..
Bud

4mykids
Posts: 33
Joined: Mar 2004

First, let me say that I was immediately hooked up with an organization called CanCare (another survivor network), and my mentor is a 30-year survivor of colon cancer with mets to the liver. And this was 30 years ago!! She was treated with 5FU when it was only in the experimental stage, and she has never had a recurrence. I am always thrilled to hear about her 2 days a week that she babysits her granddaughter!!

You said this was the on-duty oncologist? Have you spoken to your oncologist? Do not give up hope!!

I was diagnosed with colon cancer with mets to the liver on June 26, 2003. I have two children (6 and 2 1/2) and a very loving and supportive husband, and they give me all the motivation and inspiration I need to have hope. I have every reaason to believe that I will be a long-term survivor.

Your story strikes a cord with me because I have a similar one. I live in the suburbs of Houston and was diagnosed in a hospital near home. Once the diagnosis was made, the obvious next move was to be transferred to the downtown Medical Center in Houston. My doctor out here whom I trust very much made a referral but my transfer was on a Friday p.m. so I was not set to meet my doctor until Monday a.m. since it was not his on-call weekend. Instead I met one of his partners who was very nice but not very informative. That Saturday night at around 11:30 p.m. the resident came into my room with my CT scans and asked me if I would like to review them with him. (A resident doing his 1-month oncology rotation, I later learned!) He showed me my films, said there was "a lot of junk in there" and that I would probably just have "palliative care" for a few months. As if I was not already in a state of shock from the cancer diagnosis, this devastated me! Well to make a long story short, by the time I met my new doc on Monday a.m. he was already well informed of the incident and assured my husband that this doctor would not come near me again! It is 9 months later and I still have tumors in my liver that we are aggressively fighting!! We have a long way to go, but we have also made a lot of progress. Thank goodness I did not listen to that resident.

Every person's situation is different. Everyone reacts to treatments differently. There is no definitive answer to survival. I am certainly no expert and I am learning new things about this horrible disease every day, but from what you have written, I would think you have a great chance at long-term survival. At least with a wife and 3 kids, I sure would have a LOT of hope if I were you.

I have not actually spent much time on CanCare's website. I have my mentor and we talk on the phone frequently. She has been a great source of inspiration for me because of who she is (a 30-year survivor) and because of how helpful she has been to me. They try to connect you to someone with a similar situation as yours. She was also a young mother with the same diagnosis. In case you are interested, there website is www.cancare.org. I just recently found this network and became a member, and I am really glad to have discovered another place to come and talk to other people in my situation. I hope you can find the inspiration you need to fight and win the battle against this disease!! I wish you well and you are my prayers!

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

Hey Mike...

Not to sound rude, but tell your doc to take a hike. My story is SO similar to yours, only nobody gave me a timeline in which to complete this life.

I had a small tumor, with pre-surgery chemo & radiation. During the 10 hr surgery, found to spread to my liver as well. They took 40% of my liver, but heck, I still had 60%...no big deal. I was diagnosed Oct 3, 2001...still perfectly healthy today. In fact, I just had a CT scan on March 6th, and that reinforced everything is fine. DO NOT LISTEN TO EXPIRATION DATES (except for milk and dairy products!). Keep your attitude positive, and you'll be amazed at what you'll be able to accomplish.

Read the web pages by people in this category, and you will be inspired, not frightened, by what lies ahead for you.

Let me know if I can help you further, or if your wife has any questions lingering in her mind.

Take care,

Stacy

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Mike,
I have to agree with Stacey....the on call doctor sounds like he enjoys playing God. Hope you never have to see him again. The suggestion to search the personal web pages is a good one. I had my surgery in Dec 03, so I'm just a bit ahead of you in this fight. I keep in mind that survival rates are just numbers, but someone has to make it on the positive side, so we each might as well go for it.
One of the books I read included a story of an oncologist who developed an agressive stomach cancer with virtually 99 percent mortality. He did rigorous chemo against all his colleagues recommendations, and is continuing to survive years later.
Have you discussed your worries with your regular onc? He may have other information that counters Dr Doom. There are also new meds available, and some may be indicated for your cancer.
FYI, support groups have been found to increase survival rates, and I consider the people that I've met on this board and those I stay in touch with through individual e-mails to be my support group. Hang in there and keep us posted.
Wishing you hope, Judy

KrisS
Posts: 232
Joined: Apr 2003

I am sorry to hear your story, but don't give up hope! The 5 yr survival rate is not zero, and someone has to be in that group! The week I was diagnosed with rectal carcinoma, I had a client come in to my workplace. Somehow in chatting with my technician, she mentioned that she had had colon cancer with liver metastasis. She said that she had more surgery to remove them, followed by chemotherapy for a year.. 10 years previously. I just wanted to run over and hug her. I was devestated by my recent diagnosis, and she was a god send.

It is my impression that surgical removal or perhaps radiofrequency ablation to eliminate the liver nodules is the ideal. However, newer chemotherapeutic and other drugs are improving tumor control for many people.

You have lots to fight for. My suggestion is to gather all the knowledge that you can, see what the regular oncologist has to say, and consider visiting a major cancer center for a second opinion.

Best wishes,

Kris (diagnosed Stage 4 with peritoneal metastasis 9/02. Lymph node and liver metastasis controlled with chemotherapy)

vcavanagh
Posts: 86
Joined: Dec 2002

Hello Mikew42, Don't forget that this is the cancer SURVIVORS Network and there are plenty of us here. Statistics are just numbers,important maybe, but they are not people. Listen to us all and especially Stacy, one of the stars.( I can feel her blushing!!)
Hang in there.
Blessings,
Vincent.

wildcat's picture
wildcat
Posts: 40
Joined: Apr 2002

First of all you have the power of the family and that increases survival rates. Your age is another factor. Nobody said some of the treatments aren't going to be tough but many have over come these odds. Another thing is just to keep going. New treatments and techniques are coming out monthly to increase the life span. Follow a doctor you trust and if you don't have one start looking. I am amazed how many friends we hear from in this forum that have found the Dr. that makes the difference. Take care and my families prayers are with you.

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