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Terrified of reading online materials - Fiance with Colon Cancer Stage IV

l_spencer
Posts: 2
Joined: Jul 2013

Hi all,

This is my first time posting here and my first time actually coming online to any information site regarding cancer since my fiance was diagnosed with stage 4 colon cancer. 

I don't even know how to phrase or explain what I want your opinion on, so please bear with me. As I said, my fiance was diagnosed with a stage 4 colon cancer at the age of 33. He had a mass on the colon and metastases in the liver. This was 2 months ago.

He's already undergone surgery to remove the infected part of the colon - everything seems fine - and now he's getting chemo through both hepatic pump and systemic. I'm just about to go meet him now.

He's being seen at Sloan Kettering and the doctors seem very optimistic. He's gone back to work, he's working out and eating healthy (really good apetite), he's starting acupuncture and his spirits are very positive (with his downturns, which are to be expected). But we both believe we will win this fight and that all will work out fine.

I'm reaching out because I don't know how to deal with online information - I've been avoiding reading anything cancer related as I'm terrified of the sad stories out there. I've tried to only see positive stories. This is causing me some anxiety because, partially, I've wanted to go online and get more informed. But I feel getting more informed is going to make me break down as I can't deal or face with the possible outcome. Just writting this makes me want to vomit and my heart races to a point of an anxiety attack. 

How have you dealt with this? I'm sure my problem isn't unique. How did you cope with wanting to get information but not being able to deal with what was available online?

Thank you.

jen2012
Posts: 1186
Joined: Aug 2012

I'm sorry about your fiance...it is a terrifying diagnosis. My husband was diagnosed with stage 4 crc last August. Be careful about what you read..but I would suggest you visit the colorectal board here for some hopeful stories and great advice from folks who have been dealing with this for some time. Hes getting treatment at one of the best places and if they are optimistic that is a great thing! Hang in there!

l_spencer
Posts: 2
Joined: Jul 2013

Thanks for your reply. It's nice to hear from other people going through similar situations. I'm trying to read items in the Colorectal forum but trying to manage it the best way possible. I do hope your husband is feeling well and I wish the swifest of recoveries to him.

cinnamonsmile
Posts: 1049
Joined: Dec 2010

I guess I have found that when I read for information online (and only from reputable websites) is that I just look at it for informational purposes only. I don't assume that because of x, then I will have x or treatment y.

I know it is very hard for some to read for info and get all worked up about it. 

grandmafay's picture
grandmafay
Posts: 1611
Joined: Aug 2009

I hesitated commenting because you stated that you wanted to read only positive stories. Although I consider my story a positive one, you may not see it as I do. My husband was dx with stage 4 colon cancer with mets to the liver in 2003. At the time the literature from reputable sources showed a very low 5 year survival rate with an average survival of 22 months. Scary? You bet!. Devastating would probably be a better word. Our dr offered this prognosis, "Treatable, not curable, and life shortening. " Yes, I remember those exact words. When I told our pastor that we were just buying time, he pointed out that that was what all of us were doing. A friend reminded me that none of us get out of this life alive. With those things in mind, we tried to just live the best lives we could in the now. We learned to cherish our time and tried not to waste it. One of my husbands's favorite sayings was, "Let it go dear; just let it go." He was better at that than I was, but I tried. I did do the research. I read, googled, and read some more. I looked up every treatment, and asked questions. Since my husband wasn't into doing that, he relied on me to let him know the side effects and new things that might help. He went through numerous surgeries, chemo, and radiation. In the end and yes, it did end, we were blessed with 6 wonderful years. They weren't perfect, and there were some very tough times. We were married a total of 42 years when I lost him, but some of my best memories come from those last 6 years. Our family, including children, grandchildren, and in-laws grew closer. Friendships became more important. Our faith and church family sustained us.

What I would like you to take from this? First, nobody knows the future. We each may have few or many days. I'm sure you and your fiancé have many. It's important that we recognize that each day is important, though, and live each day the best we can. Two, it doesn't matter what the literature says, each person is an individual and will react to the disease and treatments in individual ways. Also, it has been almost 4 years since I lost my husband. New treatments and protocols are here. Whatever is in the literature is probably dated at best because of the leaps and bounds forward that research is taking us in the fight against cancer. Your fiancé is going to one of the best colon cancer centers in the world. His age is on his side, and somebody has to beat the odds. Why not him? Don't be afraid of staying informed. Just remember that statistics don't tell his story. Tale care, Fay

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