Topic: Found Out About 4 Weeks Ago/Portal Vein Embolization?

Hello, I was diagnosed about 4 weeks ago, and my surgical oncologist only "suspects" this is what I have.  So far I have had CAT Scans, PET Scans, a liver biopsy.  I just had a port a cath implanted and last Friday I had a portal vein embolization.  I will go on chemotherapy for about 3 months, and the plan is to give one part of my liver time to regenerate and then have a liver resection.  I am going to City of Hope in Duarte, CA.  I'm a wreck emotionally.  I have seen so many doctors, and nobody really gives me straight answers.  Any kind words would help.  In the meantime, my best wishes and prayers to all of you with this disease and to your families. 
Sophie

Re: Found Out About 4 Weeks Ago/Portal Vein Embolization?

Dear Sophie,
Welcome - I'm sure you'll be able to find answers to many of your questions here.

I'm not that knowledgeable, but I know that the fact that they're looking at resection for you means there is probably a very good prognosis for you. They won't even consider resection for most people, or sometimes it takes 2nd or 3rd opinions before the docs will consider it. Resection is definitely the best way of beating this disease, and if you're a candidate for that, the ever-wary doctors must see a lot of hope for you. Don't give up hope, don't get toooo discouraged (though it's hard at times) - there are people on this board who were given a terrible prognosis and they're still going five or ten years later.

Best of luck to you,
Joyce

Re: Found Out About 4 Weeks Ago/Portal Vein Embolization?

Sophie,

I know how you feel.  My fiance was diagnosed Oct. 2006 at 29 years old.  We felt like our lives fell apart within about a week.  We were told from one surgical team that the 8.5 cm tumor was too large and in a very difficult spot to remove.  They told us to go home and enjoy the rest of his time with family and friends.  Ha on them.  We found a doctor who performed the surgery and removed the entire tumor. It has now been 1 year 6 months since diagnosis and currently has no sign of cancer.  Pray hard and trust God.  He will pull you through.  It's those time when you feel like you are giving up and have nothing left that he gives you a little ray of hope and BOOM! You realize how much in your life he really is.  I wish you the best and will pray for you Sophie that you stay strong and see hope in your condition.  With love and lots of prayers.

Christina

Re: Found Out About 4 Weeks Ago/Portal Vein Embolization?

Thank you, Chrissie.  What a wonderful, wonderful outcome for your fiance.  I do pray all the time, but so far I seem to spend my days crying when I should be more positive and trusting.  Responses like yours can't help but ease one's heart.  Thank you, Chrissie.  My prayers and wishes for your fiance's continued good health.

Sophie

Re: Found Out About 4 Weeks Ago/Portal Vein Embolization?

Hi Sophie,

sorry you had reason to find this board, but it is a wonderful place for support and information.  What were your symptoms that led you to the doctors?  My brother was diagnosed at the beginning of the year after same multitude of tests.  Only true diagnosis came during surgery where they resected part of his liver, gall bladder and ducts.  Before that, the first doctor gave us dismal prognosis although he was willing to consider surgery.  We went to a different doctor, who went boom, boom, boom with some tests and had him in surgery within a short time.  Big surgery but now he's got only tiny cancer cells left and is undergoing a 6 week chemo-radiation and the doctors seem pretty optimistic. 
My brother was very, very sick before they put a tube in to help liver drain better.  We were really scared.  After the liver started getting cleared, he did fine and was good for the surgery and came through with flying colors.
Keep praying and keep researching.  Knowing as much as you can is really important.  If you don't feel able to (any info you find on this dreadful cancer is tough to read), have someone who's close to you do the research and planning. 
Candy

6 (edited by Sophie Thu, 17 Apr 2008 19:31:50)

Re: Found Out About 4 Weeks Ago/Portal Vein Embolization?

Hello Candy,  which chemo drug did they use?  Did they do radiation at the same time?




mid December I was sick with what I thought was strep throat.  I went to the doctor, and they thought beginning of pneumonia which also explained my shortness of breath and fatigue.  The doctor gave me Biaxin for an antibiotic, and I thought it was that that was making me nauseous, bloated and so exhausted.  I hung in there about two months and then went to the doctor who had a CAT scan ordered.  I got the news about March 5th.  I'm a teacher, and sometime after I showered in the morning I'd get back in bed for a few minutes before I could get dressed I was that fatigued.    I was nauseous all the time, short of breath, couldn't eat anything and have lost 30 pounds since about early March.  I didn't show any outward jaundice but my urine was definitely way too dark...minimal pain but discomfort in my abdomen. 

Candy, all the tests they have given me say I have metastasized cancer of the liver, but they can't find the primary.  The blood tests were all normal except for the alpha feron protein (spelling).  It was extremely high.  They are only "speculating" it's cholangiocarcinoma.  I don't feel so nauseous because I am eating only raw fruits, drinking a wheat grass shot each day, 12 ounces of freshly juiced carrots and eating no sugar whatsoever.  This has cut my nauseousness down, but I still can't seem to get over 1,000 calories in me a day.  This is a long post, and I don't even know if I answered your questions.  I'll go back and check.  My prayers to your loved one and your family.

Sophie