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Bile Duct Cancer ... feeling DOWN

piruly
Posts: 1
Joined: Jan 2011

I am 34 years old. the week of my 33rd birthday I began having different symptoms I didn' tknow were related and/or serious... at first I was told it was a bladder infection... then hepatitis, but when those tests came back negative, a scan revealed an obstruction in my bile duct. They told me at my age with my health and no family history it would most probably by residual blockage from my gallbladder surgery which I had out less than a year before. after more tests, I had the whipple surgery done, turns out the tumor was malignant AND spread to the surrounding lymph nodes and I was diagnosed with stage 2B biliary cancer. about a month after surgery I had a port installed and began chemo with gemzar, did 4 months of chemo, then 6 weeks of radiation AND chemo pump with a different medication. Scans in September appeared clear, and I have tumor markers checked every couple of months and now I know what symptoms to look for although the symptoms don't really show up until late. Today I had my first follow up with my oncologist since finishing treatment and I feel DOWN! I am a very optomistic person but I asked him to tell me straight out what the chances of this cancer comming back are, and turns out I have a 50% chance of this crap coming back!!! I have 2 young kids (who don't even know my diagnosis in the first place)... the thought of this THING coming back scares the crap out of me... and everything I read about this type of cancer just scares me further... does anyone have anything POSITIVE to share? any GOOD outcomes?? it's hard to keep a smile on your face for family and loved ones when this is constantly looming in my head! Any info would be greatly appreciated!

Loida

saskgirl2
Posts: 6
Joined: Dec 2010

I had to reply to you and tell you what an inspriation you are to me. Our stories are identical except that i am just starting chemo today for stage 2b pc. My docs gave me worse odds 70% have reoccurance 30% dont. Well we just have to pray and believe that we are in the 30 - 50% that dont have a reoccurance. I know that this is difficult and even though people are well meaning unless you had or are going through what we are going through they dont know how we feel. I have said that the scars from my surgery will heal with time but the emotional and mental scars will take longer to heal. Like i said you are an inspiration to me you made it through the whipple and chemo etc and your clear today. For me it is just live one day at a time. Enjoy your kids and every moment you have with them. From what i understand from surviours of pc i know the anxiety at each scan always comes back but it lessens with time. If you need a friend to talk to please email at leskosky@sasktel.net

Oneshot
Posts: 60
Joined: Jul 2009

Loida,
Having read your post and seeing that you said you are optimistic,but you are feeling down. I'll pass on to you what a couple of doctors told me. "When you are told you have a cancer and you have been basically "time stamped" (given so long to survive). You would not be normal if you were not scared and feeling down. From time to time." So, don't beat yourself up to much for feeling down. Also, from what I read on your post. Sounds like you like to have the facts. No matter how harsh or bad they are. With that being said I'll try to explain how I dealt and still deal with my battle with stage 3 pancreatic cancer and stay positive.

Like you, I was told strait up what my odds were when diagnosed. "Maybe 6 months to a year without the Whipple. No guarantees how long after the Whipple." This was April 2008. At that time survival rate for anyone with P.C. was a whopping 5% for any who had been diagnosed, to make it 5 years! Now how in the heck does anyone find much to be positive about when your told that? Well, after the emotional roller coaster that I'm sure all of us (and those around us) go through when told we have cancer. I started looking for positive things. The first thing I came up with was. There are some odds...Not good ones! But, better than none at all! To me that was a plus! Second. Even if this cancer wins. I still have time to make more good memories with those around me. I knew some people never get that chance. I looked at it as "I'm one of the lucky ones. I get the chance to do this!" Not that I didn't do that before,but, now it put everything in my life into a fine tuned perspective. Again this was an other positive.

Within a week of my diagnosis. I started radiation and chemo (while still working). Then I got to the point where I could not eat or hold down anything. I lost 50 pounds in one month. Believe me, I didn't have it to lose! 119 pounds is not a pretty site when your 6 feet tall. I had to have a J-Tube installed. This had a little back pack that I filled with several cans of Perative(sp). This would feed me through a tube into my small intestine. It was hooked up to me for 12 hours a day! It was at this point I started to use my sense of humor about my situation. I know those of us who have cancer see those around us trying to be strong for us and not look sad and such while with us. But I think most of us can see the helplessness in their eyes. I used humor to sort of lighten the mood for them as well as myself. This worked for me on staying positive. I would put on my "pack" and plug it into my tube in my abdomen and tell my wife that, "This works great for people who don't have time to stop and eat! Now I will admit. Sometimes, it was dark humor. I would come home after radiation treatments. My wife and others would all be in a somber mood, worried sick about me. They all would ask as cautious as they could how I was doing after my radiation and I would answer back to them "Not bad! But I do want to see if I glow in the dark tonight!" That would usually put them at ease. Now when it came to chemo. I had to work a little harder to keep positive about dealing with that. It was no fun at all! My oncologist told me I had every bad side effect, that chemo had to offer. Except total hair loss. But, like anything else,if you look, no matter how bad it might seem. You can still find something positive about it. I found out several good things about chemo. Besides fighting the cancer. A mosquito will not even land on you while you take chemo. They hover several inches away from you. Heck, they are pretty smart! They even know there is poison in your body!!! I found both humor and something positive in that! Also while taking chemo, after my Whipple, I had more bad issues! This time the chemo made me have water retention almost over night. I gained 60 pounds from it. My skin on my feet literally split. From the ribs down I was swollen. What can you find positive about this you ask? Not that I ever laughed about a woman complaining about water retention,But, you can bet. I'll never,ever, make lite of a woman complaining about water retention.

So, here I am. More than 2 years out from the Whipple. With some pains,fatigue issues and yes! Some days I feel like I was hit by a train and drug down the tracks. I was blessed enough to make it past 50 years old. Each day is a birthday to me. If I wake up hurting bad...I look at the positive side...I woke up! I get to see my wife, my children, grand-children and other family members. I have Faith,Family and Friends and have been able to keep a sense of humor through it all. And yes I still get restless before each and every scan. I know the odds all to well about it returning. But, on the positive side. When I get good scan results. The feeling cannot be described easily but it's a good feeling. To say the least!

I know I could have written something short like..."If you fall out of a tree and break a leg." The positive side would be..Be glad you didn't break both legs." So, I just touched the tip of the iceberg on what and how I have dealt with my cancer and remained positive. Each of us deal with it differently. I will keep you and your family in my prayers.

Take Care and GOD BLESS!
Oneshot

RayLogu
Posts: 19
Joined: Jul 2010

You have a 50% chance it won't come back! I had the whipple May 2010, mine was ampullary and stage 4, spread only to regional (one) lymph node. I am twice your age, I'll be 78 in March. Cancer was a huge shock to me and my family as I know it is for you and your family. I took oral chemo (xeloda) and radiation for 6 weeks and that was my only treatment by choice. I had a clear scan and tumor markers very low at conclusion of treatment in Sept 2010 and the oncologyst still sugggested gemzar as my next round of treatment "just in case" cancer cells remained. Since tests showed no evidence of cancer I did not take the gemzar. I was ready to feel good again. Is only 9 months post op and 5 months since completion of radiaton and chemo, and I feel great. I had another clean scan 3 weeks ago and tumor marker still very low. Stay positive and stay close to your doctors, always keeping them informed.
Google info on the 100 year old whipple survivor. That should boost your spirits. I pray you will beat the odds! I'll be there with you!
Regards, Ray

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