1 (edited by Asher47 Sat, 31 Jan 2009 09:24:35)

Topic: Am I in the right place?

Hello there, my name is Ashlea. I just came across this site a couple of days ago. My father (50 years) was just recently diagnosed with liver cancer. They tried to operate, do a resection and remove the 10 cm tumor, but when they opened up, the cancer had "exploded." They said he had 2 to 12 months to live. This was in October. But just a couple weeks ago I went to a doc's appt. with him and the doc said so you're the one with gall bladder cancer. Well, after questioning him about it, even though I realize the close proximity of the gall bladder, bile duct in he liver, we were informed it is a cancer that originates in the bile duct of the liver. But that was the first we had heard of this CC. We were told Adenocarcinom for the longest time. So I wanted to look into it and I came across this website. I have felt a lot of comfort knowing I'm not alone. I am pretty scared and my nature mostly is this curiosity to know 2 months or 12? But I still have so many questions about his case, I just feel the doctors are so unclear. Any guidance would be really appreciated! He was feeling a lot of abdominal pain a couple weeks ago, but now it has disappeared. Which is wonderful! I hear of cases where the person doesn't feel much pain at all and this is our prayer for him! He has suffered already so much. But, I was reading a post that said the absence of pain can almost be more dangerous. He is quite tired, but I find he is eating enough, wakes up soaked in sweat, and feels some nausea. The doctor said things wouldn't get much worse than they are now. I just cannot comprehend how someone can be up walking and fine one day and gone the next. It's just not fair I guess, he is so young.

Re: Am I in the right place?

Ashlea,

If you are looking for help, then you are definitely in the right place. May I ask, where is your father being treated? Is he receiving radiation or chemo or any other treatment?

Patty

Re: Am I in the right place?

Hello Ashlea

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: Am I in the right place?

Hi  Ashlea,

One thing that may help clear up the term "adenocarcinoma".  Adenocarcinoma means that it develops in the columnar type cells as opposed to squamous cells.  Since the bile ducts are lined with columnar type epithelial cells a cancer there is "technically" an adenocarcinoma.

There are all types of adenocarcinomas.  They can be types of breast, lung, colon, kidney or lots of other types of cancers. 

I'm sorry you've had to find this site but we are glad you are here.  You will find lots of information and the most caring, compassionate, intelligent and wonderful people that are eager to help. 

I'm glad you pursued your questions with the doctor.  You will find quickly that it is a good thing to be proactive and continue to ask questions until you are satisfied and understand the answers.  You are about to learn more than you ever thought possible about medical issues!  *grin*

My mom (77) was not diagnosed until she was stage IV with mets to the Lungs and pericardium.  She was feeling fine, still working full time at a demanding job and the cancer was only found when she was having a CT to r/o a blood clot after a bout with pleurisy.

Let us know if we can help with questions or direct you to the place to find some answers.  We are all here for you!

Hugs to you and your family!

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Am I in the right place?

Ashlea,

Welcome. I am so glad you have found us, but so sorry you find it necessary to be here. You have found the best site to be on when dealing with this type of cancer. You have already gotten some great advice & will find that there is so much information here that it will be hard to comprehend and process a lot of it at first.  The people here are the best in the world & no matter what you need they are here to help. Unfortunately this cancer is very unpredictable & treats everyone differently. It is hard to find, diagnois & treat. My husband was 62 and perfectly fine until 7 weeks before he passed away. Others here have had success with different types of treatment.  The symptoms you have mentioned are "normal" for CC. It is a slow growing silent cancer that in most cases by the time there are symptoms and it is diagnoised it is already very advanced. As Marion suggested, getting more opnions would be a good idea. I am sure others will be offering help and information shortly. Search the site & ask all the questions you want both here & of the doctors. The more informed you are the better off you will be when fighting this terrible unpredictable disease.  The fact that you are curious & asking questions is a very postive step in the right direction.

I will be hoping for the best outcome for your father, yourself & your family.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Am I in the right place?

Hi Ashlea and welcome to the best little club in the world that no one wishes to join. I echo what everyone said above and want to stress getting a second opinion. It would help us to know where you are and who you have seen. You have a big right to be scared as we all have been. After the scare, you will begin to feel the fight come out and that is normal as well as that is when you become strong enough to rule this cancer.  It is also scary because there is not much known about it. The only thing we know for sure is that we don't know much! So get in that strong mode and read on this site, lots. You have come to the right place to vent and ask as we have the most caring people in the world all right here.

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.

7 (edited by Asher47 Sat, 31 Jan 2009 09:22:15)

Re: Am I in the right place?

Hello All!

Wow I was surprised to find a couple replies already. Thank you! Just to give you some more information, I am from the great North of y'all!! In cold Canada. So you may not know the doctors here, the specialists. My dad lives in Kingston, Ontario, Canada and is working with Dr. Biagi at the Cancer Centre there. And I from Thunder Bay, Ontario, Canada. Similar to Pam, my dad was in the hospital for a completely separate knee replacement surgery. They then noticed his white blood cell count was through the roof. They did some scans and saw a perforation in his bowel. To avoid the abscess popping they did an immediate surgery to remove the abscess that would leave him with a colostomy. They then found what looked to be a secondary liver cancer while poking away in there. But they did tests on the part of the large intestine and no cancer cells were found. Rather it was diverticulitis. Now, this was in august 2008. Then the resection was supposed to occur October 30th 2008, when they said it was inoperable. That is when they gave us 2-12 months survival expectancy. Then while in another appointment my father asked what stage? The Doctor said "it's difficult to say. But stage 2" I thought the reason they couldn't operate was because it was too advanced? The original team of doctors that gave us the 2-12 suggested we opt for "quality of life at this point and not do chemo or radiation because it really wouldn't make a difference" since my dad is a "special" case. My dad, and our family are okay with this. We believe God has a plan here and He will take my dad when He chooses. All my dad wants is to start to go for regular CT scans to see how large the tumor is getting and all that. Since August the tumor has grown from 5x6cm to 10x11 and of course we know it has metastasized to the other lobe in 2-3cm pieces.I did look into some side effects, and symptoms of this. They recently put my dad on this steroid Dexamethasone, but we later found it was killing his leg that is already mangled. Also, it was making him really jittery and anxious!! Considering before the steroid he was very tired and would rest, he has now painted his entire home in a matter of a couple weeks. He won't sit down! It's really kind of cute and I think he has this need to keep his mind occupied and make his home pretty to live in, since this is where he wants to lay his head down.

Thank you for all the advice and support already! Blessings,
Ashlea

Re: Am I in the right place?

Ashlea,

Thanks for filling us in and remember that we are all here for you & your family, to help & support you on your journey with this very confusing & unpredictable disease. We are all only a key stroke away.

Love & Best Wishes,

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Am I in the right place?

Dear Ashlea,
My mother just passed away on Friday and we were able to bring her home on Wed with Hospice care.  Those people are so amazing.  My mom should have been with Hospice a month ago....but her fighting spirit didn't want to give up.  The care team you get is there for you 24/7.  Unbelievable.
My heart goes out to you and your family. This site is truly a godsend. I was not an active poster, but a daily reader.  Use them as you need them.  They are truly the experts.
My prayers are with you.
Laurie

10 (edited by Asher47 Thu, 29 Jan 2009 21:25:49)

Re: Am I in the right place?

Thank you Laurie. I am so terribly sorry to hear of your loss. Did you find any peace having read and been a part of this website before your mom's passing? What sort of things can you do to prepare, though I've read posts that say there is no preparation?

He is on the list for hospice, but I don't know at what point they will bring him there. I hear hospice care really is lovely, but he is stubborn. I am assuming you have to be in pretty bad shape to get a bed, at least that is the health care system in Kingston, Ontario where he lives. Women from St. Elizabeth's Homecare come in every day so that has been nice!

I had a quetion though: to say that the cancer has metastasized to the other lobe, does that mean his lymph nodes are infected? Would the cancer have to travel through these to mets?

Re: Am I in the right place?

Ashlea,

What other health problems does your father have? I guess it just seems to me like he is so young and maybe the doctors he is seeing don't have a lot of experience with this cancer, why do they say his is a "special"case?

Patty

Re: Am I in the right place?

Ashlea.....I am wondering if it is possible for another surgeon to take a look at your Dad's records and scans.  The doctor I am thinking of is:

Sean R. Cleary, MD
General Surgery
Hepatobiliar & Pancreatic Surgery

tel 416.340.5331
University Health Network
Toronto General Hospital, Toronto Western Hospital, Princess Margaret Hospital

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

13 (edited by Asher47 Thu, 05 Feb 2009 15:39:17)

Re: Am I in the right place?

Well Patty,

I am not sure now. Thinking back it is all a blur as to what the doctors said. When first diagnosed we were told it was secondary liver cancer. They spent 3 months doing MRI, CT scans etc to locate this primary source. None was found. As far as other health problems, he battles arthritis, he has mangled left leg that has never healed since he broke literally every bone in it (this of course being the reason we found out about the caner, because of his knee replacement surgery, which he vows he should have never done because it gives him more pain than the cancer), also he had a bowel resection and is left with a colostomy which gives him constant grief. He has talked to the doctors about reversing the colostomy, but they don't believe he is strong enough. When they said "special" case I think they were referring to the fact that no other options will work. They said radiation could shrink it, but since there is the metastasis it wouldn't be worth it in the long run. The stage 2 thing concerns me, although this doctor was not the one who opened him up and saw the progression of it. He did say it was difficult to say, and that in my dads case they couldnt really go by stages? Umm, he then went on to say "you're going to be around for a long time!" This felt like false hope to me, but perhaps the doctor didn't want to scare my dad. Although I know just have this fight back and I would regret not looking into this further and having someone else look at his records! I will be honest though, it does scare me. And what if my dad doesn't want it? That is what I am scared of. Dad is FINALLY accepting this...But it would be better to know for sure.

Re: Am I in the right place?

Ashlea,

You are  right. You have so many unanswered questions right now. This disease is impossible to second guess, but it appears that you have been given so much conflicting and confusing information that at this point I think I would get a few more opinions before making any major decisions.  Keep us updated when you can. I will be hoping for the best and will keep you & your family in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Am I in the right place?

Ashlea,
   I have nothing new to add, I just want to  say that 2nd opinions are SO impotant, especially with this cancer. CC is rare enough that doctors often don't know much about it, and it is important to get a doctor that DOES have some experience with it. I believe that is why Marion is recommending the Doctor in Toronto. Best of luck to your dad - and you.  What a caring, loving daughter you seem to be - your Dad must love you so much.


Joyce C.

Re: Am I in the right place?

Ashlea,

This isn't a cancer that all doctors know about.  It sounds like they may be somewhat indecisive on the actual type of cancer your dad has.  I agree with some of the other suggestions of going out to get a second opinion.  Marion has an excellent recommendation - there are a couple of specialists at Princess Margaret in Toronto.  I would see if you can have your dad's slides and tumor blocks forwarded to them and confirm diagnosis.

All my good thoughts heading your way.

30-something caregiver

Re: Am I in the right place?

Okay, I will definitely look into doing that. I would hate to sit on this and find that I could have helped...Thank you for all the great feedback!

Re: Am I in the right place?

Just a little update: Dad came down with a nasty cold last week, his GP sent him for a CT scan of his chest. Is a cough/cold reason enough to think that the CC could have spread to the lungs? got a CT scan done which shows the initial mass on the liver to have grown to 12x12 cms. They also found 5 new pulmonary nodules on the lungs, 2 which are 7mm and 3 which are 5mm on the other lung. So it is clear that it has mets to the lung. Guess we didn't expect this so soon. What should we expect next? Also, I am not sure why he is gaining weight? There is definitely evidence of fluid in his abdomen but it's not that substantial. Why else could this be? They sent him home with nothing but a written report of the progression of his current situation. I have made sense of some of it, but it is Dr. language.

Re: Am I in the right place?

Asher....on this board we have seen several people with CC progression to the lungs.  In fact,  our Jeff had the fluid drained from his lungs I believe, more then once.  You may read up on several discussion by entering the word "lung metastases"  and "ascities" in the "Search Function".  The fluid retention around your Dad's abdomen may very well be ascities and this would explain the weight gain, which, from what I have learned, can be quite substantial.  This also can be drained.  Has the physician prescribed any diuretics?

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: Am I in the right place?

Asher, yes, I too had a tumor that burst in October.  I am 60 and on chemo since Nov and don't have any pain or side effects from the chemo so far.  With 5 infusion treatments my main liver tumor has shruk by 50% and the same is true for the small spots that ended up in the abdominal cavity due to the bursting of the tumor.  There was a lot of liquid then and I don't understand how it is now solid.  I just heard from Dr. Giap who reviewed my scans and he suggests I stick with chemo for now since it is working.  I have an appt in March at the Scottsdale Mayo clinic.  I agree, get a few opinions.

21 (edited by raye Fri, 06 Feb 2009 20:51:15)

Re: Am I in the right place?

Ashlea,

On Marion's suggestion I've sent you an e-mail. Please have a look at your e-mail or if you're here first give me a call at my home number, 519-351-4406.

We have much to discuss about your father and the mysteries of how the Ministry of Health works in Ontario. You need help now!

Marion gave you a name of a specialist in Toronto and I know a specialist at University Hospital in London Ontario that can set you straight, as well as an oncologist that's now a believer that CC can be treated a lot more effectively than previously thought.

What you and your dad are going through is typical of our medical system. ( are any of my American friends listening to this?? )

Give me a call as soon as you can.

Raye Field       1-519-351-4406  or raye.field@yahoo.com

Thanks for the referral Marion.

I'm a passenger on planet Earth and God is driving.

Re: Am I in the right place?

Thank you all for your opinions! However, at this time my father does not want a second opinion. Although there was some confusion about stage 2 diagnosis by his oncologist, the surgeon who initially opened him up to do the operation and then saw that it had metastasized has been quite clear about my dad's current situation. There is not much they can do, my dad has accepted that fact. Thus, as his daughter, his fighter, I need to respect his decisions. He is rather coherent and able-minded to do so. At this point it is about making him as comfortable as possible. Thank you for the referral and your advice to seek a second opinion, but I doubt that another surgeon would see anything different, after all, they opened him up, and mets don't lie. In part, finding this website has not been a good thing for myself. Though I see that it may be a source of support, it also has caused me to worry way too much at my young age. I am far away from my father and that makes it difficult so this is the only control I have. I find myself looking for any symptoms of impending death, wondering if he is going to be okay because I do feel the end is near. But, I know I can't worry...just as I wrote to him in a recent letter, it is not my choice when he leaves this world. It would be selfish of me to be angry about this poor prognosis. All I can do is make the best of the time I do have left with him. I can't imagine how overwhelmed he must feel. I can see that a large part of him has given up. That is what hurts the most. If there is one thing you all could pray for, it is that he can find some peace in all of this chaos. Blessings and thank you for your kindness.

Re: Am I in the right place?

Asher....You are honoring and respecting your Dad's decisions, which to me seems to be the greatest gift you can give him this, and lovng and supporting him along the way.  You are wonderful daughter.  This is a precious time for him and you. 
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

Re: Am I in the right place?

Asher,

You are young in age but mature in love and compassion.  Sometimes the hardest thing is to let go and let God.  You have done and given your Dad the most wonderful gift of acceptance.  I know it's hard to do but spend this remaining time by being supportive of your Dad and respect his wishes.  You are a remarkable legacy that he will leave behind. 

One resource I would suggest is to call or google your local hospice facility.  They have some wonderful things to read online or you could pick up pamphets on palliative care.  The most important thing is that he be kept as pain free and comfortable as possible.

Take good care of yourself and be kind to yourself.  I know how hard it is to be far away.  Keep in touch with your Dad as much as possible.  He knows how very much you love him.

Consider yourself hugged tightly!

I'll keep you and your Dad and family in my thoughts and prayers.

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Am I in the right place?

Hi Asher,
I am on this site everyday, twice a day, but lately havent been too active posting.  My father was diagnosed July 08,  and  we have had a rough fall and winter with this brutal Cancer, and I haven't had it in me to comment, but this site had been a Godsend, not just for information, but for creating an inviroment that has made me realize I am not alone.  I just need to tell you, you are an amazing young lady with an incredible outlook.  My father is 74, and I have 20 years on you.  I know this must be such a difficult time for you, but you seem like you have such an inner peace.  You could easily be so angry, and you are not.  Your father is very lucky to have your support.  I wish you courage in the time to come.
Barbara

The  Lord is my shephard