March 12, 2010 at 6:42 pm #35077
Thank you all so much for your post and good advice. I am hoping to get more opinions from other doctors, and to get my father and his wife on board with all his options.
We had surgery at Shands Hospital in Gainseville Fl.
Cinnamin…do you mind me asking where you guys had surgery? I am sorry you are going through this journey, but if you ever have questions or updates or answers or anything, please feel free to share…my email address is cjemi215@msn. com
Have a nice weekend!
CMarch 12, 2010 at 4:02 am #35076cinnaminParticipant
Hello and welcome to the group!Sounds like our Dads are in about the same spot. My Dad’s surgery was on Feb 3rd. He also has clean margins and clean lymph nodes. Chemo and/or radiation is being set up for my Dad. We asked his surgeon what HE would do, and he flat out told us that if it were him, he would go through chemo. As he said, IF the cancer came back there is nothing left to work on surgically. We feel extremely lucky that Dad was able to get through surgery, and we had already decided that chemo/radiation would be our next step after surgery. We had a check up today, and will meet with the oncologist next week to start whatever treatment they think best.
Best of luck to you and your family! Not an easy choice, but I know whatever you decide will be rightMarch 12, 2010 at 2:52 am #35075devoncatParticipant
There is alot of debate over chemo after surgery. Some studies show it helps, some studies show it doesnt. That is why you are getting different opinions. I tend to think the way not approach. I want to know that I have done everything possible to beat this disease. My doctor said that I would not have chemo after my surgery if they got it all since there was no evidence it would help but I am going to push for it if I get it all out in surgery.
KrisMarch 12, 2010 at 2:09 am #35074mlepp0416Participant
By the way, I have a grand-daughter with the same name! As to your question about chemo….my husband Tom was told by his oncology team at the Milwaukee Veterans Hospital in Milwaukee, after his liver resection, that there was no need for chemo as his margins were ‘clean’.
In retrospect, I wish we had pushed for chemo just to be on the safe side. His new oncologist here in Green Bay are now saying that if he’d had chemo after his liver resection that he may not have presented 18 months later with a new tumor. The oncologist at the Vince Lombardi cancer center where he now goes state that they ‘ALWAYS’ have their patients go through chemo for at least two or three sessions to catch any stray cancer cells that may be lurking around inside, and they have had very good successes with that protocol.
My thought process is such that I’m thinking ‘what can it hurt?’ In your dad’s case, it he has insurance and the insurance will cover the chemo, then I would think that he would want to listen to the doctors….but as always, it should be his decision as he knows what is right for himself.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)March 11, 2010 at 5:47 pm #35073darlaParticipant
Good to hear from you. I think another opinion would be a good idea, too, since there is so much confusion. I do know how you feeling about the remark that if insurance covers it do it. My parents are both 83 and although their health issues are unrelated to CC, there have been a few times when things were recommended and they had already checked if insurance would cover it before they recommended it. Valid or not, my sisters and I wondered if it was about the money. In one case a second opinion proved that what was recommended was not necessary as my Mom didn’t even have what the first doctor claim she had! So, yes get another opinion and if you are still confused get another. They more information you get, willl help you to make a more educated decision. Hoping for the best for your Dad, you and your family.
DarlaMarch 11, 2010 at 4:30 pm #35072lainyParticipant
Hi Courtney. We are so glad that your dad is doing well. It is all so confusing, that is for sure. I am thinking that even though you have great doctors and are pleased, if I was confused over chemo or not to chemo I would send dad’s records to Mayo or MD Anderson and get a consult by phone as to what they might suggest. Another opinion never hurts. Since you are the advocate and care giver for your dad, please treat yourself kindly and take care of yourself as well. There has been a lot of discussion on our board whether to chemo or not and you might want to use our search engine at the top to see what others feel. But, then again it is a decision you and dad have to make. Good luck and keep us posted.March 11, 2010 at 3:28 pm #35071
I am back after a little over a month of down time trying to get back to whatever normal is. My father has been home post surgery for almost 2 months now. He was back and forth to the hospital after surgery because he was trying to do too much and is legs started to swell pretty bad.
I was told his last trip to the hospital was a good one and that he did not have to come back for 4 months.
I am so confused about what is next. He has been told by his surgical doctor that radiation and chemo will not help him, but they do reccommend doing it??? Also, he finally went to the oncologist yesterday, and they are saying insurance covers it all and he should do it all??? Do they just want his money, or should he have the radiation and chemo???
I know it has taken him this long to even go to the oncologist because he is having a hard time dealing with his prognosis.
I do not want to upset him…he can be very fragile for he does not rely on faith to help him through this.
Faith is the main tool I have in my toolbox to help me through life!
Anyway, I would love any help, advice, experience anyone has to share!
Thanks so much,
hope2010January 26, 2010 at 1:52 pm #35070cherbourgParticipant
Hi Courtney and welcome to the family!
I would like to echo what Marion said about talking to his attending or primary nurse. It’s very good advice.
I would also like to mention that most hospitals have a patient advocate person that you can also contact. It’s tough not to be there but you’ll find it possible to get the answers and information you need. I would suggest that you get listed on your Dad’s ‘HIPPA” forms at the hospital. It will make getting information easier. I also had my Mom’s “medical power of attorney”.
I’m sending you lots of prayers and good wishes! You sound like a remarkable daughter and a credit to your Dad. He’s lucky to have you!
PamJanuary 26, 2010 at 1:49 am #35069gavinModerator
Welcome to the site, although I am sorry that you have to be here. Please come back often as you will get a ton of support and help from us all. Ask all and any questions that you have and I am sure that you will get answers here.
I can’t help you with your specific questions about your dad post surgery, as my dad never had surgery. But I was my dads carer throughout his fight with CC so I can relate to what you are going through. Stay strong and stay positive.
My best wishes to you and your dad,
GavinJanuary 26, 2010 at 1:38 am #35068marionsModerator
Courtney….hello and welcome to our very special group. I am so glad that you have found us although; all of us wish it were for different reasons. Nevertheless, here we are all connected in a special way due to this cancer and all too glad to have found each other. Definitely, be a strong advocate for your Dad. Generally, various physicians are involved in the treatment of a patient and that can lead to confusion and contradicting answers. A good place to start is the attending nurse. You might want to ask for the primary nurse in charge of your Dad. Hopefully, many of your answers will be answered. You may also want to ask to speak personally with the physicians. This may happen by appointment or, you might be able to speak with him/her after they make their rounds. Definitely, you have the right to be informed and you should be. I have found that by being nice and persistent my request was always met by all. I am wishing for you Dad to conquer his infection real soon and that he is able to go home in no time.
MarionJanuary 26, 2010 at 1:31 am #35067
THANK YOU so much Margaret! It is so incredible to have the support from this site. Your response means so much to me and I am sorry you are fighting this battle too.
I am 38 years old with three young children 5, 7 and 9 and buried my brother 10 years ago at the young age of 25, so I am going solo with this journey.
Thankfully my faith is strong and has carried me through this so far. It is hard not knowing when the rollercoaster is going to change, but I am praying that it will slow down a little.
I have a wonderful husband who has helped me so much through all of this. Unfortunately I live in Georgia and my father is in Florida. I cannot be there in person right now, and that also makes it hard to communicate with the doctors.
Thank you for your information and encouragment.
CourtneyJanuary 26, 2010 at 1:13 am #35066mlepp0416Participant
So sorry that you have had occasion to join this site. It’s the site where no one wants to join, myself included. But having said that you will find many wonderful caring people on here, as I did.
My husband Tom had 3/4 of his liver removed in June 2008. Until this past November he was considered ‘cancer free’. He had a new tumor re-occurance with and inoperable tumor. Currently undergoing radiation. You can read about his journey under mlepp0416 on this site.
Tom too, developed infections after his surgery and was in the hospital for three weeks, then on long term antibotics at home for another 6 weeks. He also had a drain tube for 7 1/2 months.
Each person can be so different with the outcome of surgery.
Ask all the questions that you can. There are no dumb questions. Ask his doctors to explain (in words you can understand what is happening) Focus on making your Dad’s stay in the hospital as comfortable as it can be.
Be his advocate if he can’t/won’t speak for himself. Do all the research that you can, find out what the next steps are.
Each journey is unique and can be vastly different.
Prayers from Wisconsin coming your way.
Go with God, and KEEP KICKIN’ THAT cancer.
MargaretJanuary 26, 2010 at 12:57 am #3124
First I want to say thank you so much for creating this wonderful site! I have been searching for help…
My father is currently in Shands hospital in Gainesville Florida 16 days post surgery to remove 2/3rds of his liver and his gall bladder after becoming very jaundice (29) and losing his appetite among other things. He was diagnosed with klatsins bile duct cancer in november. We have been very pleased with the hospital and the doctor, just confused by the different daily reports. One of the doctors from the team tells us he is now septic, then the next day the pa from the parctice says that is not true and he does not know why the doctor told us that.
I spent the first week after surgery in the hospital with him, and things looked great…we thought he would be home by now, but there was an infection in his incison, which delayed him going home.The doctors told us it is typically a two week stay after surgery. Now that we are on day 16, I am just worried that I need to be more proactive with the doctors or nurses???
I am just not sure how to find the “right” answers and was hoping that someone may have some insight for me???
Thank you so much,
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