Topic: My dad just diagnosed

My dad (69) was just diagnosed with intrahepatic cholangiocarcinoma.  We learned at Mayo Clinic Tuesday that the entire left lobe of his liver is taken over by a multinodal mass, and there are 5-6 masses in his right lobe.  There is some evidence of lymph node involvement, and there are masses on his adrenal gland that may or may not be cancer also.  The surgeon at Mayo (Dr. Nagorney) told us it is inoperable, and that chemo in 7 of 10 cases would not have any positive effect.   I've been readintg a lot of the family blogs here, and I don't think my dad is emotionally or mentally capable of handling chemo.  He is not in any pain, but is very fatigued at times.  His appetite is down, and he has lost about 30 pounds over the past 4 months or so, although he also had pluersy and food poisoning during that period.    The doctor said he has between 6 and 12 months left.  He also has Type II diabetes.

My mom and I don't know what to do next.  My dad has decided not to do any chemo, which we think is the right decision for him.  He still has a relatively normal life right now - he can drive around town, take care of himself, and even goes to the gym.   He doesn't want to spend the last year of his life sick from the chemo.

This site has been such an enormous help to me - I am so grateful to all of you for it.  My mom and I are wondering, since my dad is not going to do chemo, what to do next.   Should he see his regular doctor to monitor the cancer, or a gastroenterologist, or an oncologist?  Should he have more tests/scans done periodically even with no chemo?  Is there anything else we can do to make sure he is pain-free and living a relatively normal life as long as possible?  What is the progression of this cancer like?  Are there any family blogs for people who have chosen not to do the chemo?  Any insight you all could give us would be enormously helpful.   Thank you.

Re: My dad just diagnosed

Dear Rae -- My heart aches for you and your family. It is a tough decision for your Dad to decline getting chemo, but from my husband's experience, it was a wise one for him. He had a large tumor in the right lobe of his liver (inoperable) He felt well and enjoyed life for at least six months without having to suffer the ill effects of having chemo. He lived life to the fullest, so to speak. Soon he lost his appetite and some foods (especially meat) did not taste good to him anymore. He was still able to enjoy foods that did appeal to him otherwise. His system obviously started weakening (he developed blood pressure problems) but he still did not feel horribly bad. He entered the hospital to be rehydrated and suddenly did have one evening of intense pain, which was alleviated with drugs. Sad to say, within a week he passed away, but when I look back, he was blessed at least with many good days that he might not have had if he suffered through the effects of chemo during that precious time.
Blessings to your Dad and you, his family!!!
Love & hugs,  Jean

Re: My dad just diagnosed

Dear Rae -- I'm sorry I didn't answer another question you had. We did see an oncologist who monitored my husband, sending him for Cat Scans and then MRI's to check for changes in the size of my husband's tumor. It remained about the same for awhile, and he didn't have any significant weight loss, so an alarm didn't sound, calling for chemo.
My husband elected not to have it if the subject was brought up. I know his quality of life was better without it.   ~~  Jean

Re: My dad just diagnosed

Dear Jean -- Thank you so much for your reply.   I'm so sorry to hear about your husband.   The words seem so inadequate, but your reply is a great comfort to me, so I hope mine is the same for you in a small way, at least.

It is a hard decision not to go with chemo.  I feel guilty not telling my Dad to fight, but I DO think it is the right decision.

I am relieved to read that your husband was, for the most part, pain-free.   My Dad has lost some his appetite, especially for chicken and other meats.  He does still enjoy pasta, peanut butter, eggs.  I'm thinking protein shakes are a good idea for him.  He has lost so much muscle tone so quickly.

My Dad has two granddaughters (my daughters, 9 and 7 years old.)  He said his one regret is not being able to see them grow up.  I'm hoping he will at least have lots more good visits with them before he leaves us. 

Love to you and your family,
Rae

Re: My dad just diagnosed

Rae,
Patty was diagnosed Feb 2, 2007.  Unresectable  CC.  From the very beginning, she was against chemo or radiation.  Stents were placed in march and since that time,  Patty has not been to a doctor nor had any scans or even talked to  any medical professionals about her CC.  She does not want to know what is happening.  She takes lots of supplements including AHCC and IP-6 and lots of carrot juice.  She is a vegan vegetarian.  She has regained all of her weight and feels well and has a good quality of life.  We depend heavily on God for our strength for we do not know what may lie around the next bend in the cancer road.  I am a lab tech and I run lab tests on her once a month.  They all seem to be improving.  Where there is life there is hope.  Each person that is fighting this terrible desease must make their own decision as to go with chemo or not.  I believe Patty has made the right choice.  WE ARE ENJOYING Life and that is what matters.  Our prayers are with you. 
Ted and Patty

Re: My dad just diagnosed

Dear Rae,
I think you will see that a lot of people on this board opt NOT to have chemo -- it's something I agonized over with my mother, and in hindsight, I would never have allowed her to do chemo at all - we just said we'd give it a try for a bit and if it was too much, we'd stop. Everyone is different and there is no right answer - I know I felt guilty advising my mother against chemo, like we had given up, and we were pressured by doctors to try it, but after her 2nd round of it, I just flat-out told her she was NOT going to have any more chemo, and she agreed. I couldn't stand seeing what it did to her, mentally and physically, and I believe it actually hastened her death by weakening her. Not to mention that she had to be dragged to the oncologist and made to wait for hours in a waiting room when she wasn't feeling well -- it was so dehumanizing and she wanted to be in charge of her own destiny and her own death.  I greatly admire the fight my mother put up, especially at the end when she had given up chemo, and I also admire those who continue different chemo regimens and keep fighting in that way. Some people tolerate side effects better than others. I would say that my mother's history of autoimmune problems made her a very poor candidate for chemo, and the same could probably be said for someone with diabetes - it complicates everything.
I'm just rambling on and on when what I really mean to say is please, don't feel guilty! It's your father's decision and you're doing the right thing by respecting his wishes. The guilt still gnaws at ME but I know in my heart that no one knows the right thing to do in these cases, and you have to make sure you have good quality of life for as long as possible. I know your father is making the right decision for his particular case, and as long as he's at peace with that, all you can do is support him and show your love every precious minute that he has left.

I feel for you and wish you and your family the best - I know there are miracles out there and I hoped for one for my mother, but maybe your father will be the next miracle - who knows? The only thing I would advise is that you make sure your father has accepted the possibility of his own death -- my own mother became very depressed near the end and it helped her immensely when she saw a hospice counselor and then a clergy member. Sometimes it's hard for parents to discuss these things with their children and/or family and it helps to have a disinterested party to talk to.

Again, all the best going your way,
- Joyce

Re: My dad just diagnosed

Dear Ted and Patty - Thank you so much for your prayers and helpful information.  I have dug the juicer out of the back of my kitchen cupboards, and am going to experiment with making some carrot juice.  I have read that if you add apple juice to it, it makes it taste better.  I am also going to look for a vegan cookbook, and the supplements you've listed.  I'm trying to take as much of the burden of all this off my mother as much as I can.  I live 6 hours away, and if I can do the research and legwork, maybe she can persuade my dad to do some of these things.

I'm happy to read that Patty is doing so well with this approach and enjoying life - my prayers are with you both for her continued strength.
Rae

Re: My dad just diagnosed

Dear Joyce - Thank you for your reply - it helps enormously to have your support for my Dad's decision, and the affirmation that my mother and I are doing the right thing in not urging him to do the chemo.   I'm so sorry about your mother.   My prayers go out to you.

I completely agree - everyone has to make their own decisions, and there is no right answer.   It takes enormous courage to battle this disease with or without the chemo.  My Dad has already amazed me with his strength and ability to make this hard decision.

Our main focus right now is trying to preserve the quality of Dad's life and keep things as normal as possible for as long as possible.   Even with the weight loss and increasing fatigue, I think we are still in a bit of a state of disbelief and shock.  I'm worried about what will happen to his mental state once the disbelief wears off and if he continues to physically decline.  I think it is an excellent idea about the hospice counselor - that had not even occured to me.

My dad has gained two pounds this weekend.  We have persauded him to cut back on the treadmill at the gym - I found out he was burning 500 calories doing this (!!), which is a lot to make up if he's trying to maintain/gain weight.  Not to mention that he was exhausting himself.

My prayers best wishes to you and your family,
Rae

Re: My dad just diagnosed

Rae,
It sounds like you and your family are doing all the right things (well, except for the treadmill!) and working together as one unit, which is so great. I wish you continued success in this battle - your father sounds like an amazing person!
- Joyce

Re: My dad just diagnosed

Rae,

My wife, Kathleen, was also seen at Mayo Clinic by Dr. Nagorney and he performed a second resection of her liver 3 years ago.  The cancer came back again and she has been through chemo and other treatments since then.   She is scheduled to begin another round of chemo (sorafenib) any day but she is dreading it.  Since Kathleen was diagnosed 5 years ago, I think is is safe to say that the chemo periods have been the toughest on her.  She has been very courageous during this struggle and if she ever said "no more chemo" that would be a brave decision also.

My only question after reading your initial post was whether your father had seen any other oncologists about this.  My wife has had excellent care at Mayo and we like their technical expertise.  But her primary relationship is with an oncologist in Mpls that not only provides a second opinion but is also a very compassionate human being.  Another physician's opinion may or may not be of value to your father.

The other thing Kathleen has done is see a cancer counselor a few times a year.  This is someone who sees a lot of cancer patients and has many helpful comments and suggestions based on what she has seen with her other patients.   It's often more difficult to get us guys to go for something like this but your father and/or family may get some benefit.  Kathleen and I sure did.

It appears to me your father and your family are really taking control of this rather than letting it control you.   I wish the best for you, your father and your family.

Bill

Re: My dad just diagnosed

Dear Bill,

Thank you for your reply.  My parents plan to talk to their regular doctor this week to get some recommendations for an oncologist for pallative care in our home town.   Unfortunately, they live in a small town in Iowa, and the nearest "major" medical center is 45 minutes away.  This doesn't sound like much, but my mom still works and she is down to one vacation day left for the year, with all the travel already for the diagnosis, etc.  And, she doesn't dare retire, becuase they are relying on her health insurance for my dad.  We are hoping their regular doctor has some good suggestions about someone in their hometown to see.  They live in Clinton, Iowa.

I'm glad we sound like we're on top of this situation, because I certainly don't feel that way.   I think because my dad feels basically ok right now, they are not in a great rush to see another doctor.   I desperately want to take all this off my mom's shoulders, and do all the work, go with my dad to every appointment, etc.  But I live 6 hours away, and with two children that just started the school year, etc., I can't be away from home and job for weeks at a time.  I'm afraid to use all my vacation time now, becuase I may need to be there later too.  So I'm sitting here in Missouri, not being able to do a thing, other than talk to them on the phone.   As a Type A person, it is hard to feel so helpless. 

We too were very impressed with Dr. Nagorney and the Mayo Clinic.  Although he said there was nothing that could be done surgically, he really took a lot of time with us, and answered all our questions with honesty and compassion.
 
Kathleen sounds like a very courageous person.   I wish you both the best, and my prayers are with you both as she starts another round of chemo.
Rae