Topic: head spinning from diagnosis

hi all,
I never ever expected to be on a support forum for CCC. A week ago I had never heard of it.

My darling husband, Ron, has had CLL for a number of years, but had no symptoms at all, and really excellent blood levels. I knew that this was a slow moving disease and that he would probably go on for years, and that eventually, many years hence, either CLL or old age would take him. I never ever dreamed of something like this.

Around Thanksgiving, he started to feel more tired, but we attributed it to high stress levels at work. After Christmas he started to feel really dreadful and went to the doctor. He had blood tests done which revealed very high liver enzymes but not much else. He had a CT scan on the 10th of January which showed nothing suspicious. We were referred to a gastroenterologist who thought it might be autoimmune hepatitis or a couple of other things, and last Monday, his belly really bloated, and became really painful. She ordered an ultrasound, and when it revealed a large amount of ascites, he was hospitalized so that all the testing could be done quickly.

The ultrasound showed blood clots in the liver, and I was really rooting for it to be Budd-Chiari syndrome, but the MRCP the next day revealed a mass around the bile duct high inside the liver which is impinging on the portal vein. They gave us a preliminary diagnosis of intrahepatic CCC and this was confirmed by the biopsy.

We saw our oncologist yesterday. He told us that the cytology reports on the fluid they drew from his abdomen revealed that the cancer has spread. The gastroenterologist wanted to perform an endoscopy but he is so weak, and so sick, he really didn't want to do it. We felt that if there was no therapeutic value for doing it, but just confirming what was known, it was just not worth it.

He told us that the disease is very advanced. My darling is so weak, and so terribly sick that he asked me just to ask all the questions and be his voice. This is not like him. He is quiet and calm but very definitely in charge of things. Not now. He is just exhausted, and his pulse is running very high all the time.

He is going to start chemo and we are both hoping that it can maybe give him some relief and possibly a little time. The doctor told me privately that given Ron's weakness, we could lose him within weeks. I feel just blindsided. How do we go from a non suspicious ct scan to stage 4 cancer in 4 weeks???

Is this normal? It feels just so crazy that I keep expecting that someone will wake me up and tell me that it's all just a dream.  I'm so glad I found this site. I am feeling terribly afraid.

Re: head spinning from diagnosis

Dear Helen G, welcome to our very elite club that no one wishes they had to join! Sadly what you are feeling is normal in our neck of the woods. We must go forward from here and usually when a game plan is set in place the fright turns to fight. Please remember that we highly believe in 2nd and 3rd opinions, what was, was and now we know what is wrong let's try to fix it. I was my husband's voice as well and please know that you have come to the right place to vent, get advise or have an attitude adjustment! We have all been in the same place at one time or another. I also know that right now this is hardly penetrating but please try to take one day at a time. Where is hubby being treated? Helen, read up as much as you can here as to be informed is the best tool for fighting this. Looking forward to hearing more from you. Be strong! We care.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: head spinning from diagnosis

Hi Helen,

Welcome to this site, but I am really sorry you had to find us. I know you are in shock at the news about Ron and I can tell you that I know what that feels like. My daughter was diagnosed with CC in Aug. 2011. We thought it was her gall bladder and then a huge tumor was found. It's like your world is turned totally upside down and the normal you once lived is gone forever. I don't think anything is normal with this disease. Everyone seems to handle it differently. Some do well for a long time and others pass in a few weeks. I have many a time said the same thing; that I want to wake up from this terrible dream and have the happy, carefree life our family once had. If I may ask, where is Ron being treated? It is important that he is treated at a major cancer center that is well versed in CC. I hope your husband can have chemo and start to feel better. I will keep both of you in my prayers.

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.

4 (edited by PCL1029 Sat, 16 Feb 2013 23:54:11)

Re: head spinning from diagnosis

Hi,
If I were you,I will question the radiologist who looked at the CT scan and written the report of finding nothing. I don 't know about size of the lesion since you didnot mentioned. But if it is > 1cm, the CT scan should pick up the image.
MRCP is a very good and non invasive tool to detect lesions in the biliary system.To my knowledge ,unless the bile ducts are blocked and jaundice has been shown ,there is no need to have ERCP done.MRCP is a much better tool for diagnosis . Did you know where're the metastasis , if not  , ask the oncologist to get a PET scan done and they will tell you where the metastasis and relatively how serious the activities of the spreads and the tumor in the liver.
I agree with you not to get the ERCP done. Get the PET scan done BEFORE starting the chemotherapy . Otherwise it will be a waste of time and money.

May I ask the age of your husband and what is his profession contribute to his high stress level. Would you be ok to travel to California to get 2nd opinions in USC.? Or at least send your husband's complete medical records including the CT scan disc and MRCP disc to USC TUMOR BOARD for evaluation ASAP. If I were you, and your husband is so weak as you described, not to start chemotherapy until you get result from USC may not be a bad idea  for him to gain back some energy as well as quality of life. i suspect the chemotherapy will get your husband sicker if his oncologist just gave him 4 weeks. And if so then what is the point to give him the chemotherapy and make him feel worse.You need to see a liver specialist, ( a GI doctor is not experienced enough to know and treat cholangiocarcinoma). You need at least a team of doctors( often call the tumor board) to make the collective decision for you and it may include doing nothing  if quality of life is called for.
To answer your last question, to get to stage VI CCA in. 4 weeks is of course NOT NORMAL. In general, CCA is a relatively a slow growing cancer, and not a fast killer. All I can say is the place where your husband  currently  get treated may not have the expertise to treat such a rare disease like cholangiocarcinoma.
Good luck and as always, I am  just like your husband,a patient and not a doctor.
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: head spinning from diagnosis

Hi Helen,
Welcome to a wonderful group of caring and knowledgeable friends. My doctor thought I had gallbladder issues till a scan was run. I hope your husband is at a hospital that has experience with CC. I would also recommend a second opinion.
Lisa

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

Re: head spinning from diagnosis

Hello Helen,

Welcome to the site and so very sorry you had reason to find us.  From my own experience and the experience of others that I have read on this site, it is fairly commonplace that this disease just sneak up on you.  I read so very often that the person with this disease is otherwise healthy, felt good up until the symptom that took them to the doctor where this disease was diagnosed. 

I myself was fine until I started to itch which brought me to the doctor thinking I was allergic to something.  Nope, turns out I had a stricture in my bile duct and 4 weeks later had major surgery to remove it and lots of other parts (Whipple surgery) where they were able to get clean margins.  I had 6 months of adjuvant chemotherapy.  That was over 3 years and I consider myself very very lucky.  But in a month my world had entirely changed.

I also got 2 other opinions about my course of care along the way.  I am a firm believer (like most on this site) in getting more then one opinion and really as many opinions as you need until you feel comfortable. 

I am so sorry you and Ron are going through this ordeal and I am hoping for the best for you both.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: head spinning from diagnosis

I am so very glad I stumbled upon this site. I wish I weren't here but now that I am your kindness and knowledge of this terrible disease are helping me calm and focus on what is the best for my husband. Thank you all.

To answer a few questions....Ron is 66, and is the chief operating officer for the prime contractor that runs an army base. The base is the main employer in town and with all the dreadful shenanigans going on in Washington DC, with the threatened sequester and all that goes with it, the army have been dithering around, withholding money, giving crossed signals (because frankly, they don't have a clue what they are doing) and this in turn leads to terrible uncertainty about what projects are coming down the line, what will be funded, what the staffing levels will be and who will lose their jobs.  My husband feels all this stuff most terribly and is so very good at calming everybody and getting the ship righted and in the right direction, but he understands that every layoff means that someone's life and plans are being seriously messed with. It has been very hard.

We live in the middle of bloody nowhere. 5 hours from Las Vegas, 2.25 hours from Reno and 2 hours from Carson City. The GI specialist we are seeing spent a year at Yale specializing in the liver. She seems good, but her office is a snake pit. Dealing with her office infrastructure has been bloody awful and I have had a couple of very straightforward conversations with them about dealing with people who are in extremis. There is a small hospital here, and our GP is good, but I know that there is simply no experience there with dealing with anything like this. The sense of isolation I feel here right now is one of the most terrifying parts of this.

Our oncologist is in Carson City, and seems to be highly qualified and has some experience with CCC. I don't know if it is enough. I just don't know anything at the moment.

We also have his mother, my beloved mother in law Becky, living here in town. She is 84, frail but feisty, and I am about worried to death about her too. I had to tell her yesterday, after she had returned from spending a few days at our daughter's place. It was one of the worst things I think I have had to do in my entire life. I called her sisters, who live in Louisiana, and they are coming up.

PCL1029, I AM going to question that radiologist. When we got the results that there was nothing suspicious cancer-wise, we were both doing jigs and raising the roof around the living room. This is one of the most gobsmacking aspects of this whole thing. The ultrasound report done on the 7th of Feb reads as follows;- "Hypoenhancing periductal tissue demonstrates mass-like confluence near the medial aspect of the right hepatic lobe and gallbladder fossa with extension into the caudate lobe. More confluent components measuring grossly 3.6 x 3.2 and 6.4 x 4.0 cm are present. There is mass effect on the adjacent hepatic veins with are secondarily narrowed. There is hupoenhancing sof tissue withing the right portal vein which may be bland or tumor thrombus". There is of course more but really???????those measurements didn't show on a CT scan? was he drunk, or blind or both???

We have the PET scan scheduled for the 27th. I WILL send his records and discs of all the scans to USC for evaluation. I cannot see him travelling there at the moment. He is so very weak. Good idea on the waiting until after the PET scans are done to start the chemo. I cannot bear to hurt him, or make him sicker if there is no good in it.

I hate this so much, I cannot express it but then I am calmed a little because all of you here understand. I am praying so hard for the strength, grace and the intelligence to look after my darling, his poor mum and our sweet daughters who are a mix of natural and step but are sisters through and through. I am meditating, eating on a schedule and exercising because I KNOW that I cannot take care of anyone else if I don't take care of myself.

Thank you all so very much

Helen

Re: head spinning from diagnosis

Dear Helen, I believe that if you were in a "good" place for Hubby half your battle would be won. I have one suggestion. I live in Phoenix area. We have an excellent Liver ONC here that another member also swears by. His name is Dr. Lawrence Koep I truly believe it is worth a trip for another opinion. I am here for you, should you need me! bEEN THERE DONE THAT! Please know you are not alone now but he must be seen by a knowledgedable ONC and Hospital. You already know in your gut he cannot be where he is and boy do we learn to listen to our guts! I feel like I graduated from gut 101! Don't want to get political but DCA aint gonna change so hubby needs to take of himself first!~ Helen, please feel free to email me or to call me.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: head spinning from diagnosis

Hi Helen,

Welcome to the site, but I am very sorry that you had to find us all. And I am sorry to hear what you both are going through. But I am glad that you've joined us all here as you are in the right place for support and help, and I know you will get tons of both from everyone here.

There is not much that I can add to what the others have said already but I wanted to stop in and welcome you here. Yes you are right in that you have to take care of yourself so that you can take care of your husband, but you are not alone in this, we are here for you as well. Please keep coming back here. We know how you feel right now and we care.

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.