February 1, 2009 at 2:42 am #25926saraMember
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.January 31, 2009 at 12:30 pm #25925jcleggMember
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.January 30, 2009 at 7:11 pm #25924
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.
DarlaJanuary 30, 2009 at 6:37 pm #25923
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.January 30, 2009 at 6:31 am #25922marionsModerator
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
Hepatobiliar & Pancreatic Surgery
University Health Network
Toronto General Hospital, Toronto Western Hospital, Princess Margaret HospitalJanuary 30, 2009 at 4:32 am #25921tiapattyMember
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?
PattyJanuary 29, 2009 at 9:19 pm #25920
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?January 29, 2009 at 8:09 pm #25919jobemeMember
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.
LaurieJanuary 29, 2009 at 5:19 pm #25918
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,
DarlaJanuary 29, 2009 at 4:58 pm #25917
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 10×11 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,
AshleaJanuary 29, 2009 at 2:02 pm #25916lainyParticipant
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.January 29, 2009 at 1:56 pm #25915
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.
DarlaJanuary 29, 2009 at 12:59 pm #25914cherbourgParticipant
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!
PamJanuary 29, 2009 at 6:45 am #25913marionsModerator
Hello AshleaJanuary 29, 2009 at 5:23 am #25912tiapattyMember
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?
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