November 15, 2011 at 4:55 am #53003peggypMember
Please accept my condolences on the passing of your father. He must have been so proud to have such a loving daughter. Even in your time of grief, you are still reaching out to others. Take comfort in knowing that your father is at peace now and in a much better place. My husband was diagnosed over three years ago with Stage IV intrahepatic CC. We continue to fight this terrible disease and hope that one day there will be a cure. I will keep you and your family in my prayers, PeggyPNovember 10, 2011 at 2:02 pm #53002elsyr73Member
I am so sorry to hear about your father. My condolences to you and your family. My grandmother has just been diagnosed a week ago today and started chemo this past Tuesday. We also went through so many hurdles and red-tape as that cancer continue to spread rapidly throughout her body. I don’t understand it, why does this happen.
Hugs and prayers to going out to you and your family, may your father rest in eternal peace and free of this terrible and horrific disease…November 10, 2011 at 2:21 am #53001kmemoroParticipant
So sorry for the loss of your father.
Although it is sad to loose someone so quickly its also sad to watch those that you love and who protected you get sicker and not be able to help.
I am tired of the Dr’s not giving any answers and sending to other specialists that they know cannot possibly do anything-like a GI Dr.
KathyNovember 10, 2011 at 1:29 am #53000pamelaParticipant
I am so sorry to hear of your Dad’s passing. You did all you could to help him and he is now watching over you from Heaven. It is nice that you reach out to others when you are the one grieving. That shows how special you are. My daughter, Lauren, age 25 is fighting this horrible disease. I pray every day for a miracle. Take care and god bless you.
Love, -PamNovember 9, 2011 at 9:02 pm #52999
Hi all and again thank you for your support and ongoing prayers to you and yours. I am sorry it has been a while since I have responded. My father’s illness escalated and things unfortunately went in a not so good way. His liver completely failed and am sorry to report, began to effect his brain.. My dad quickly disappeared behind a sweet gentle very confused man. I went to spend time with my father and mother nearly daily to help give mom a break and to visit with dad and help where I could. Sadly on the morning of October 31st the angels came and took my father home while he was in my mothers arms. My heart, prayers and support goes out to each and every one of you and if I can be of any assistance.. even just a warm hug or ear to listen I am here for you all.. All my families love prayers and support to you and yours.
LynnetteSeptember 22, 2011 at 2:35 am #52998mustangmortParticipant
Hi Linda. Welcome. I just joined a week ago and I already feel I know a lot of people here. The circumstances for introductions here are sorrowful, but the friendships are true and valuable. Hope to hear more from you.
ByronSeptember 20, 2011 at 11:06 pm #52997
Thank you Katie.. I am sorry to hear that your family also has had to experience the bad bedside mannerisms and insurance difficulties.. I wish you and yours lots of love, luck and hope
~LynnetteSeptember 19, 2011 at 10:18 pm #52996katielinnMember
I just wanted to say how sorry I was to read your post and to let you know that I express some of your same frustrations daily. My mom (57 years old and otherwise healthy) has >30 tumors throughout her liver and our first doctor left abruptly without answering our Q’s because “it’s 3:00 and she was going on vacation”! I don’t even know why some people get into the healthcare industry!! Also, our insurance company has been AWFUL to deal with, and we just got notice yesterday that they rejected our appeal for treatment again, calling it “experimental”. It’s extremely frustrating!!
The best things that I’ve learned from this site are to consult the doctors with the most experience with this rare cancer, don’t listen to timelines, and come here for support and knowledge of this awful cancer. Best of luck to you and your family.
~KatieSeptember 19, 2011 at 9:54 pm #52995
Thank you all so very much.. I will definitely look into the information you have given me As for the question about his stent, My father initially had a plastic one placed. They waited a couple of days and made the decision to have him go to a larger hospital.. we live in a small timber community between Seattle Washington and Portland Oregon.. so there are some fantastic specialists in either direction of us to help. At the larger hospital they used the ultra sound wand and determined that the plastic stent seemed to be doing its job and was not blocked.. but they found other issues and the doctor referred to it as “the tumors are bursting from the liver” and there was need for them to place a metal stent.. So they placed the metal stent somehow to bridge things… from what I understand they were puzzled because the gall bladder should have been partially tucked by the liver and it appeared in all the scans as though his gall bladder has basically fused itself to his abdominal wall. … They called a number of specialists in and even brought students in on his case as I am sure it was a learning opportunity and they seem to be a teaching hospital on rare cases.
Thank you again for your kind words and the information you have shared. I am terribly sorry that we are all members of such a awful club of sorts but thankful for the peer interaction and my heart, my prayers, my sympathy and my biggest warmest most supportive hugs go out to all of you.September 19, 2011 at 8:41 pm #52994gavinModerator
Welcome to the site. So sorry that you had to find us all and I am sorry also to hear about your dad. But I’m glad that you have joined us all as you will get a ton of support and help from us all. I’m sorry also to hear what your dad and you all had to go through with the doctors when your dad was first diagnosed, that is not right and I can understand your frsutrations and anger here and also agree with you that some doctors could do with improving greatly their bedside manner.
One of the problems with this type of cancer is that it is so rare and is very tough to diagnose. In my dads case, he had the jaundice and everything that comes with that and that was our first sign that something was wrong with him. He went into hospital and it took over 3 weeks of all the tests, MRI, Ultrasound, CT etc before they could finally diagnose him with inoperable CC. What type of stents does your dad have, plastic or metal? My dad had a metal stent placed.
As Lainy says, using the search forum function here will throw up a lot of posts on Liver Flukes should you wish to look into that further. And there is a lot of research currently being done into Liver Flukes and what links they may have to CC. Yes much earlier detection methods of determing CC would be such an advantage here, and I am sure that researchers here in the UK are looking into and researching a possible urine test that hopefully will do just that. Helen knows much more about this having met with this team and hopefully she will correct me if I am wrong here.
Yes your mum is taking on a huge responsibility with home care, but from what you have said it sounds like she has a lot of medical help from home hospice. My dad was under hospice care and he got excellent care. I was my dads carer throughout his fight with CC and I know how tough this situation is for you. But please know that we are all here for you and always will be. You have done the right thing in coming here, so please, keep coming here and do not worry at all about rambling for too long. You keep rambling here as much as you want. And if you feel like shouting or screaming as well, then you go ahead and do that too. We know how you feel and what you are going through, and we care.
My best wishes to you, your mum and your dad,
GavinSeptember 19, 2011 at 8:12 pm #52993mustangmortParticipant
Hi Sparklynne and welcome. I have only been on this site for a week and I have felt right at home from the first post. I can only suppose that if you were in a smaller local type hospital that they realized they were in over their heads and did not know exactly where things stood, other than it was bad. No real excuse for that kind of behavior. When I went through my first diagnostic procedure at the cancer center, the moment I was awake and able to listen, I was told exactly what the doctor thought was going on. It is unfathomable that health care providers hold back information.
Here’s to hoping your father gets the care and comfort he rightly deserves from here on out. If not, demand it.
God bless you and your family.
ByronSeptember 19, 2011 at 5:16 pm #52992lainyParticipant
Ah, Lynn, I understand more now. My husband was in Home Hospice for 3 months and then I had to take him to their facility. Now that I know your Mom has help that is a whole different story. I honestly wish I had kept him home for his last 4 days! The ONC orders the Hospice and then they take over the care so to speak, still a lot for Mom to do but they order the RX and all that.
If you go to the top of the page to our Search Engine and type in Liver Flukes a ton of posts will come up that you may find interesting. Also type in early screening. My husband was in Korea. The reason there is not more info on CC is that it is so rare it has been an orphan. But we are slowly making some headway. The best advise I can give you was what my husband constantly told me, “Be Strong”.September 19, 2011 at 4:22 pm #52991
Thank you so much Lainy,
Per your questions, Yes, he has had a second, third, and even fourth opinion on the matter unfortunately all with the same glum outlook. As far as the home hospice.. I should clarify on this matter.. He is still getting constant current care by a regular physician, a specialist, and a oncologist. Professional home health care nurses also check in on him at least weekly at home. I too am concerned about my mother taking on such a huge responsibility mentally and physically. I know that she loves him with all that she is and she feels as long as she is doing this then she is contributing to helping him in a situation that offers little opportunities. Very true on the liver flukes issue and how many others are being diagnosed without that connection. It begs the question why? and how come there is not more information circulated to help folks? Is there anything that can be done in the form of early screening?
I am glad that there is at least online information such as this for families to locate in their times of need. Thank you again for your warm welcome and supportSeptember 19, 2011 at 3:50 pm #52990lainyParticipant
Dearest Sparklynne, welcome to our wonderful family where you will find the most courageous and caring people in the world. No words can condone the way your dad and family were treated when he first got ill. What’s done is past but I am curious if you ever sought a second opinion? It’s never too late.
As for Home Hospice, that is a lot for your Mom to take on physically and mentally. Without Hospice or a Doctor’s care how will he receive any Meds he may need?
Yes, this is a terrible disease and sadly it is usually detected when it’s almost too late. Liver Flukes is being looked at as a possible cause but that doesn’t account for how so many others get CC who have not been to Asia. Please think about another doctor (where are you located) and if needed Hospice. You have come to the right place here and you are not alone!September 19, 2011 at 3:31 pm #5669
I am new to this so please forgive me if I am not clear in my words or ramble for far too long. My father was 58 years old on July 4th of this year. A relatively healthy active man who was working full time for a local mill to support himself and my mother. On July 4th a co worker called us during our family picnic to explain that my father was close to collapse. He told us that he had called for the ambulance to check him out. We rushed him to the ER and while there they came to the conclusion that my dad’s kidneys were not functioning at 100% and not to worry they would treat him and things would be fine. A few minutes later a second doctor appeared and immediately started off the conversation with ” well you most likely have worked your last day” we were all stunned not understanding what he meant. Before we could ask he followed up with “so do we know what kind of life extending measures you would like us to take?” after a second we began to digest what he was saying and asked him what he was referring to. After all we were just told that he was needing some mild I.V. antibiotics to increase his kidney function back to 100% and we should be on our way.. He just said that he could not be sure at this moment and that he wanted us to know how sorry he was and abruptly left the room. We sat in silence for several minutes trying to digest everything. For the next 5 hours a whirlwind of nurses,phlebotomists,and at least 3 different physicians came in and out of the room each one repeating how sorry they were but not one of them telling us why. They decided to keep my father overnight. By morning they were able to do the CT scan. The surgeon came in and let us know that it was the gall bladder that was looking to have caused all the issues.. She opted to do exploratory surgery and told us that she needed to get some tissue samples if she was able. Having 3 other family members who have had gall bladder surgery we were all relieved. I waited with my mother while they did the surgery. We were then ushered to a side room for private consult with the surgeon. When she entered the room she looked immediately to the ground and began with the now all to familiar words ” I am so sorry” we were stunned .. we asked if my dad was okay.. she assured us that the surgery went fine and that there were some other things going on. She told us there appeared to be infection in the tube leading to the gall bladder. She had placed a temporary stint in place to relieve the pressure.She then said how sorry she was once more and how life changing this was going to be for our family. so I pressed the doctor and said “stop telling us your sorry please… we don’t know why folks keep saying this.. is it because he doesn’t feel well or is there something more?” She then told us that as of the initial visit to the ER that the blood test had detected cancer cells..She continued saying it was stage 4 and that the liver was fully engulfed, too many lesions to count. She told us the cells were in the upwards of over 50,000 per unit of measurement. We asked if she had or was going to disclose this information to my father.. she told us that she wanted to do so later that day when she could get other important staff in on the conference.We were left with one parting statement.. “please if you do nothing else, think of quality of life vs. quantity as this is not a fixable situation” long story short.. the hospital released my father two days later without a doctor/surgeon uttering one word to him about his condition.. on the top of his release paperwork were the words “possible cancer” my father went home and two days later developed a serious fever and was rushed to a larger hospital hours away.. they rescanned him and found that the tumors had grown in number and size and that he was very anemic. After being told that it was time for my dad to opt for a medical retirement he was advised to file with SS and also the VA as my dad served in Vietnam in the Navy. He was finally diagnosed with Cholangiocarcinoma suspected to be caused by liver flukes (parasite) and they have told us that it is intrahepatic and extra hepatic.. he has had numerous stints placed and yet still is quite jaundiced.. he has had several blood transfusions Two weeks ago he developed an acute deadly bacterial infection of his blood. Since July he was given a max life expectancy of 6 months if he chose to try chemo. They told him after the last hospitalization he should consider hospice.. my mom took a crash course in home health and he wants to leave this earth at home with her taking care of him.. As of two days ago he developed swelling in his legs.. They have found that he has acute amounts of blood clots in both legs as far up as his groin area.. So we have been told it is almost more likely that we will lose him to the blood clots now before he succumbs to the cancer.. My heart aches with the helplessness.. it seems to get harder to deal with every day not easier. If things were not already tough enough there is the constant hurdles of the insurance companies and the fact that he made too much money prior to the illness to qualify for some things and yet he is too young to qualify for others. I think it is awful that patients and their families have to go through so many rough patches of red tape with insurance companies etc. while already facing such a difficult battle.
There has got to be better ways of detecting this and much better bedside manner for patients and their families when this is discovered..
I just don’t understand why a doctor who has the information of my dad’s military history and was seeing him on a regular basis was not informed enough to screen for this. I have made it my mission to get the word out via newspaper and those that will listen to get checked.. I would not want one more family to go through the torture.
Thank you for letting me share.
My heart and prayers and healing goes out to each and every one of you and yours that are fighting this battle.
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