Topic: Dad just diagnosed, feel like i'm having a nightmare

As stated above, my dad was just diagnosed this week and our family feels like we are in a nightmare that we can't wake up from.  It  all began about 3 months ago when my very healthy, active 74 year old father got this pain in the right shoulder blade. He went to Dr. who diagnosed Shingles. He was put on shingle meds and anti-inflamatories and sent home. We thought it odd that he didn't have tell tale rash but were told sometimes shingles is like that. He also did receive the shingles shot years ago so were surprised at this diagnoses. Anyway the pain seemed to be getting worse and earlier this month he started thinking that maybe it was a pinched nerve as the pain started radiating down his arm. He is a retired dentist and has arthritis in his neck...occupational hazzard. He went back to Dr. and they did an x-ray of the area of pain. x-ray showed weird looking mass so they decided to do an MRI to get a better look. MRI showed definite mass and decided to do bone scan. Bone scan revealed tumor and here begins our nightmare... We are fortunate to have doctor friends and radiologists who expedited all these tests as we were able to get these results all in a matter of one week. Meantime my dads pain became relentless to the point of taking him to ER Saturday before last. They hooked him up to iv game him morphine for pain and after doing more cts, and pets discovered that he has very small nodules (metasticies) in both lungs, the tumor on his T-1 which is pressing on the nerve causing all the pain and lesions around his bile ducts. He was admitted to hospital and underwent endoscopy last Tuesday where they were able to get good lab swabs as well as insert 2 plastic stents.  He came home Wednesday still in pain but on lots of meds but for 2 nights had terrible shakes and would wake up freezing and shaking. Friday morning my mom called me frantic that dad could not stop shaking and his temperature was up to 102. Fortunately I live 5 mins away so I ran over to help her, we called Dr. who said to take dad back to ER as they were concerned that he may be having an infection due to the stents. We were told this is a possibility before they were put in. They readmitted in to ICU and gave him heavy duty antibiotics through IV. His kidneys were working overtime and showing distress as well as possible liver abscess. They are now trying to decide whether to go back and put a couple of metal stents in but wanted to make sure his infection is under control first. Heres the thing, to look at dad you would think he is healthy, fit etc. Color is great, no jaundice in face or eyes. No pains in stomach area, normal bowls. Only symptoms are excruciating pain in shoulder/arm and a bit dehydration from saline in IV. His liver functions are now all great and his kidneys are back to normal. They had him fast last night in prep for another endoscopy/stent placement but this morning decided to  put it off since his symptoms are stabilizing and why risk infection right? His biliruben was up to 3.9 but has now dropped to 3.2, everything for now seems to be going in right direction. He has received 4 treatments of radiation for the tumor in neck and met with radiologist who suggested waiting 3 weeks to start chemo when he is done with radiation and completely infection free. We are just at such a loss now and don't know if this is all good news, or is he a waiting time bomb. He and my mom are very close, best friends have done everything together. They have 2 big trips this summer already paid and planned , one to Europe, will this still be able to happen? Are we deluding ourselves? Sorry this is so long, my husband and I have spent countless nights researching this cancer on the internet and everything we've read seems so grim. Of course my mom still hangs on to hopes and cures, but she doesn't go on line to research all this info. I have 3 kids ages 22, 20 and 16 all very close to their grandpa, he has been so involved in their lives, we take many vacations together etc. Oldest just graduated college and is applying to Med School, dads only wish is to be there for his med school graduation. Daughter is a junior in college out of state and feels so helpless being away from all this... do we fly her down now? wait till absolutely necessary? She is coming home for spring break in March, we live in CA and she goes to school in WA, so not far. I feel like i'm just rambling now, so sorry, lots of thoughts and concerns going through my head as this is all so new... we always said we are so lucky because "cancer doesn't run in our family" that is until now. How are we supposed to act and feel around dad, trying to be strong but theres this big elephant in the room now sad

Re: Dad just diagnosed, feel like i'm having a nightmare

Hi Honeez1,

You are not rambling.  You have come to the best place as you will get so much support and advice here.  I like you am very new to this as it was only 3 months ago my sister was diagnosed with cancer in the bile duct.  There is so much information to take in, on top of the fact that you are dealing with cancer.  To add to all the tests and diagnosing of the cancer your dad has also been ill with infection which complicates everything. 

Someone wiser than me will be along very soon but my advice at the moment would be that now your dad is over the infection, sit down with his doctor and find out what the plan of attack is. Discuss all the options and see what is available and go from there.  Ask everything that is your head and if you feel you need further opinions ask for it.  You will find your own way of how to be around your Dad - it's amazing the strength that you can draw upon.

Clare

In the stars now . . . .

Re: Dad just diagnosed, feel like i'm having a nightmare

Hi Honeez1,
Welcome to this site, but as we say here, so sorry you had to find us. Boy, do you sound like me when I first found out my then 25 year old daughter was diagnosed with CC. it is such a shock and you feel as if your world has collapsed. Although things never go back to how they were before cancer, you get stronger and are more able to cope. I remember the first time we even walked into the Cancer Center for Lauren's appointment before she was diagnosed, I felt like we were in the wrong place. Nobody in my family could have cancer. We have no cancer in our family and then POW!! This smacks us right between the eyes. I used to think I was a very weak person and could never face illness of a family member. But, when you have to, you can't imagine how strong you can be. That poor, sick person is  depending on you to help. And that is what you do as an advocate and caretaker. Once a game plan is made for your Dad, you will feel better. Make sure you have a doctor that specializes in biliary cancers in a major cancer center. Ask many questions, and if you don't understand something, ask that it be explained better.  I'm sorry your Dad has had a rough start in handling this disease, but hopefully he will improve. I am wishing your family all the best. Please come back and visit often. Ask lots of questions. We are all here to help.

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Dad just diagnosed, feel like i'm having a nightmare

Hi,
To answer your question, I think it is not necessary to fly her down now, it can wait till March spring break. I am not a doctor, but at this point, if anything is stable, do not change to metal stents.  The most important thing to do for you dad now is to get a 2nd opinion by a GI specialist like liver surgeon to see whether surgery is possible. RFAby radiologist can take care of the mets in the lungs, surgeons like Dr. Kato in New york or Dr. Chapman in St. Louise are a few you should consult with,ESP. Dr. Kato.  HOWEVER Dr. Marsh in UCSF may not be the choice base on what his interest is on laparotomy suggested by other board members here. The big trips can wait if you get ok from the surgeons since surgery is the only possible cure. Your message is very limited to let me understand fully about your dad's case. My guess is  you dad has extra hepatic cholangiocarcinoma with mets to lungs and bones,if so it will be stage IV which surgery may not be possible. I think only Dr. Kato would be the best choice on surgical consult.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Dad just diagnosed, feel like i'm having a nightmare

I would like to follow Pam and Clarem to welcome to our very special place, the one no one wants to belong to, but is happy to have found. 
Seems that your Dad’s physicians are addressing the most urgent issue that of controlling the pain caused by the bone tumor - that is the good news.  Several of our members had good responses to radiation treatments for bone metastases and I wish for your Dad to fare equally as well.  Once this is pressing problem is resolved then all other things will fall in to place, and as long as all precautions are taken, travelling may not be out of the question.  Therefore, hang in there.  Stay positive and remember that no one has an expiration date stamped on their feet.  Please stay in touch; we are in this together.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

6 (edited by jathy1125 Tue, 29 Jan 2013 21:47:46)

Re: Dad just diagnosed, feel like i'm having a nightmare

Dear Honeez1-Welcome and sorry you had to find us. I am a CC survivor! There is HOPE! I have an amazing story to share so please read it at www.catherinedunnagan.com under the telegraph link.
I know your world has suddenly spun out of control and you are so overwhelmed but you have come to the right place for understanding and knowledge. We all start our stories with "I was never sick"! I was 52 and perfectly healthy, (and getting healthier, diet excersice LOL!!), a daughter in college, a cruise in fall life was good... and I was just itchy. We own a small lawn care company so I just thought it was sun or allergies... I only went to the doctor because somebody asked me if I had been in a car accident because I has so many sores from itching!! I went in for an ERCP on a thursday, with weekend plans and came out of a simple surgical procedure to be told that I had 6-8 months to live, that was 4 years ago!! There is HOPE!!
It has not been an easy 4 years, chemo radiation, 2 liver transplant, a ruptured hepatic artery, septic twice, CMV.... there is HOPE!! I am alive because of God, 2 strangers, and Dr. William Chapman.
My best advice and the one lesson cancer has taught me is "to keep making memories"
Lots of prayers and HOPE-Cathy

Re: Dad just diagnosed, feel like i'm having a nightmare

So we met with oncologist GI specialist & radiologist. The best scenario for dad would have been a liver transplant but he is not a candidate for that due to the mets on his T-1 and in his lungs. The cancer in his bile ducts is also very high up & evidently hard to access . He is staged 4 at this point. They want to continue the radiation on the tumor in the t-1. He has had 5 treatments & will receive 6 more. He then will see the oncologist in about 3 weeks where they will administer a cocktail of 2 different chemosynthesis via IV then the following week administer just one of the chemo then evaluate the following week after that to see how he's reacting. The good news is that he may be able to come home from hospital now that his infection seems under control. They are waiting on doing the other stent procedure until really necessary sine his labs are looking much better....bilirubin now down to 2.6 from 3.3 yesterday & liver labs way lower than when he came into hospital on jan 23. White blood cell count lower too smile There's some cracks of light at the end of this tunnel!!