35 Year old Father of 3 and scared to death
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Hang in there until you know for sure. Once you know for sure (and we all know that doctors can be wrong) this is the best site to come to for opinoins, experiences, finding out what to expect, what questions to ask your doctors, where to go, what doctors you could work with and the BEST site – even if you only post to vent!
I’m hoping that they are wrong and it turns out to be something minor. With my husband Tom we waited almost a month and his VA doctors were doing dumb things like changing his diet, etc. and just doing blood work every week. I took him in to see his family doctor and he had his first ERCP in 2 days, and we had a definite answer that day, and pathology confirmed it.
Go with God!
Hugs,
MargaretOf course you´re scared. It´s a shock and it´s a threat.
It´s difficult to wait and see, but some times there is no other option.
Anyway, no matter the diagnosis, there is no way knowing how this will affect you. 20 months ago I was the one, and I could NEVER have imagined that I would be in the position I am today; still a cancerpatient but absolutely no signs of disease. Side-effects of medicin, yes, but not as hard as I thought it would be.
When you pass the shock-phase and IF you get a difficult diagnosis, decide whether you´re a fighter or a victim. I guess that your kids, if not anything else, will make you the fighter. Then you sharpen your sword, learn how to fight and just do it. It´s possible!!!!!! It doesn´t have to be as harsh as found with google!
Lots of energy to you.Please keep us posted. Sending prayers and hope your way. I believe in miracles and hope lives here. Don’t ever loose hope.
-Elsy
Thinking of you, keep us posted on your test results!
Sending tons of love your way.
-roni
ronidinkes@yahoo.comDear CNichols- I am a CC survivor, cancer free 2 years!! So there is HOPE!! Jim was right about getting to a major cancer center! My first test to diagnose symptons was scheduled for a week later, but I called doctor and cried!! I got in the next day! Do what ever you have to do to get your results, time is not our friend.
The most important thing is to be diagnosed by someone who knows about CC. Keep posting and put your locations and you will get lots of real life expierences to help you. My miracle was at Barnes-Jewish Hospital St. Louis MO (listed as a cholnagiocarcinoma center) with Dr. William Chapman.
Lots of prayers and HOPE-CathyIf your diagnosis is still not clear, I would suggest getting to one of the major cancer centers ASAP. See the “Hospitals” thread for us patient’s take on different facilities and doctors. Hospitals w/o substantial cholangiocarcinoma often have difficulty nailing the diagnosis.
I landed at NY Presbyterian Hospital pretty soon into the diagnostic process, which was a very good thing for me. I had a resection 4/09, and so far, am clean. The diagnosis once I got there went very quickly (CT scan, ERCP, schedule surgery) i.e. less than two weeks total. The doctor who did the ERCP knew immediately it was cc, just wasn’t absolutely sure of the extent. He had seen enough cc to not even do any sort of biopsy. As with any cancer, time is not your friend. My doctors all assumed my cc was the most aggressive variety.
Good luck.
Dear CNICHOLLS, I am not welcoming you to the family yet because we are not sure you have CC. I know that to hear those horrible words would shake up anyone’s world but I say lets not get ahead here until you are positive. I would definitely stop googling and reading here as it is upsetting you too much before you even know. Thursday is only 2 days away. What ever the outcome you will find strength through your children as small as they are. They are pretty smart, you know. Please keep in mind that there is always hope. And there are second opinions that we heavily believe in. Good luck, I am wishing you the best and pleas let us know what happens as we really do care.
Dear cnicholls, My family was in the same place as you are about a month ago. My daughter, who is 25, was diagnosed with cholangiocarcinoma. We had never heard of this or ever dreamed one of us would get cancer. For awhile, we all walked around in shock and disbelief. We all cried constantly. Except for Lauren, my daughter with this terrible cancer. She cried a little. She has been so strong. She is the one that comforts all of us. I don’t know where she gets her strength. I’m sure with whatever you are diagnosed with, you will be the same for your family. I understand exactly how you feel. It is so scary. I found, other than this website, anything else I read about cholangiocarcinoma was very disheartening. So I don’t read them anymore. My daughter refuses to read anything negative. She says even if she has 1/2 of a percent to get better, she will fight to be in that percentage. She has already had two rounds of chemo and feels better. Keep a positive outlook, love your children every day as much as you can, and enjoy life. Our family was always super close, but now you could never break us apart. Just know that you are not alone. God bless you and good luck. -Pam
cnichols…..welcome to our site. Honestly, I must say that at this point it is too early to worry. I know that this is not easy to do however; you need to know that many others have come to our place only to find out later that the suspicion of cholangiocarcinoma proved to be false. Suspicions have to be substantiated and until this happens please, read no further on this site; know that we care, that early detections have the utmost best of outcome and that my fingers are crossed for a clarification with the most positive of news.
Hugs to you and your lovely children,
All my best wishes,
Marioncnicholls, you are absolutely not overreacting. Those feelings are totally normal. I would worry more if you didn’t have those feelings. I was told the ugly “C” word 6 weeks ago and for a while I was devastated, mortified, and truly sick to my stomach. I confirm wholly that I was not worried the least bit about my personal situation or health. My only worry was for my wife, children, grandchildren, etc. I knew my absence would devastate them. So then, after staring at my granddaughter and lying on the bed and crying, I decided I was going to be the strongest me I could be. I was going to move heaven and “heck” to become informed, learn everything I could, and thoroughly knock this beast on it’s backside. The road has been a lot smoother for me ever since. Finding this website has also played a tremendous roll in smoothing things as well.
I truly feel your pain and anguish and am glad you are here. Welcome, my friend, and stay with us. Let us know how we may help or how we may direct you. There are so many on this site who are so knowledgeable. I remember doing the google search thing, seeing the stats and being totally frightened. Then I realized, those state are 5 or 6 years old, and even if the percentage was 1, I was going to be in that 1 percent. Many here will tell you that the numbers don’t count.Let’s take this journey together. We can do it.
Hello,
I was just told I have a “developmental biliaiy ductal anomaly” a “focal biliary ductal dilatation from a peiipheral obstiucting lesion ” that was found on a CT scan with contrast. I should note, I had a MRI done 2 years ago and there was no anomaly then. My doctor believes it could be Caroli’s disease or cholangiocarcinoma.I took the above information off of the test results and I started goggling. Either diagnosis appears hopeless. I went in for blood work, however the soonest they can get me in for a MRCP and MRI is 4 days away.
I am trying to remain positive, however, with 4, 6 and 9 year old children all counting on me. I fear the worst. Emotionally I am a wreck. I absolutely know I need to wait for all the test to come in, but waiting makes me read more and the more i read the more I am scared.
Is there hope? Am I overreacting? Any advice?
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