Topic: New to the board

Hi. I found this site as I searched for more information on this disease.  My father was diagnosed (sort of) in November-- I say sort of because he went through several rounds of "you have a malignancy", "you do NOT have a malignancy" before they finally decided that he did indeed.  He underwent surgery last week and is home to finish his recovery before starting chemo--in a few weeks.  He came through the surgery amazingly well with only a few bumps in the rode (a spike in fever that was quickly dealt with; a bad reaction to the antibiotic on the last dose).

We were told that they removed his bile duct and that the biopsy they did during surgery indicated microscopic cancerous cells in the liver.  They did remove some lymph nodes but we don't have any final pathology report at this time.

Upon his release from the hospital (he was treated at University of Pittsbugh Medical Center) the doctor told him that he was very certain that chemo and radiation should kill the cancer cells. they did not "assign" a stage or grade/level to my dad's diagnosis.

As I read this board and other websites-- I am afraid that it isn't quite that simple.  Several sites indicate that most people with CC live only a year.  I want to feel good about his prognosos but worry that we should be more aggressive in pursuing other opinions.

Any insight or information would certainly be appreciated.  Thanks.

Re: New to the board

hi JoAnn,

i'm not a "frequent flyer" when it comes to posting here, but i wanted to know who did you father's surgery at UPMC.  i've become friends (although i haven't emailed him since last years l.a. marathon....:-( due to so many of my own personal issues) with an md, dr. lotze, who teaches at University of Pittsburgh School of Medicine.

and...to perhaps ease your concern a small bit, i found my own 2 pound tumor in nov of 02.  i had my first surgery in feb 03, 2nd one in feb 04, and my third one in aug 06.  it has not been a walk in the park, but i have lived to experience many glorious (and too many not so glorius) moments, events, etc.

good luck to you,
barb h

3 (edited by JeffG Fri, 01 Feb 2008 17:55:45)

Re: New to the board

Hi JoAnn,  Surgery, Chemo, Radiation and a few alternative supplements.  March 16th will be 9 Years.  I still have CC on remaining lobe of liver, mets to both lungs, bones, and soft tissuse.  I've tried many chemo regimens.  Have had my share of roller coaster rides and don't care to go to an amusement park with rides any more.  Currently on Taxotere only every three 3-4 weeks. Will yake a break after this next one on Wednesday and get ready for a vacation to Hawaii.  I do take morphine and break through pain meds as needed.  Taxotere, after 3 years of different chemos seems to be holding all stable.  It is hard on the white blood cells and have to take antibiotic and filgrastim injections days 6-11 due to immune system is practically wiped out each time.  With all that said I remain hopeful and positive and expect to push on at least for another three years.  Maybe the miracle cure will come around the corner.  Will never know if you don't stay positive and keep on trucking.  I would recommend every 3-4 months a complete CT Scan and any new pain anywhere in the body should be investigated with CT or MRI and even nuclear Bone scan.  3-D Conformal radiations is good for me when hot spot pop up.  Even though my Ct Scans look scary when ever I read them which I do get a copy for myself each and every time.  I like to watch the numbers and make sure Oncologist doesn't miss something I think is of concern.  Self Advocation goes a long ways with this disease.  I am on SSDI now and become domesticated around the home as well as remodel projects.  I do the shopping and still drive where I want to go.  I Love to cook and being able to have a meal ready for my wife makes me feel useful and I even surprize her once in a while with blueberry muffins and banana/rasin bread.  Yes we are all different with our genes/DNA etc. But your 100% right about being aggressive and staying alert.  It certainly sounds as though you are right on top of it.  I don't hesitate to be a pest at the doctors or when going for chemo.  Get to know your Oncology Nurses they can be of enormous help at times.  I( think evryone in the ER knows me now and know what to do when I show up.  First thing is they listen and do what I know has to be done or checked out.  Yes, I guess I came to grips with this disease and decided to live with it and put up a little fight at the same time.  As long as it works I'm not going to knock it. Best wishes to you and your father.  One last thing, this web site has been a main support system for me and others as well.  Feel free to post anytime we are hear to share experiences and new ideas.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: New to the board

Hello JoAnn

Jeff has given you an excellent description of what many of us have, at least partly, gone through.  He has also given you the best advice - be positive and learn as much as you can so that you can help your husband be his own advocate.  It is not easy sitting through consultations, particularly if the doctors use technical jargon.  So it is very helpful to have some knowledge concerning what they are talking about and to have prepared questions about your husband's condition and treatment.

On a positive note the doctors looking after your husband certainly seem to be on the ball.  It is very rare to hear that someone has had surgery and then is being given chemo and radiation treatment as part of the standard treatment.  It is quite natural for you to be wondering if there is better treatment available elsewhere and to have self doubt about whether you are doing your best.  My advice to you would be to try to relax and enjoy the progress your husband is making.  Learn as much as you can about his condition, primarily by talking to his doctors but also by researching the internet and of course, using this site.  Build up your strength because, like anything else, there will be difficult times ahead as well as good times and you will need to be strong mentally as well as physically.  But above all, be positive.

Re: New to the board

Thanks for the feedback.  It helps! 

Barb- My father's Dr. At UPMC is Dr. Gamblin--we were really pleased with his attentiveness and easy manner.  He was great at taking time as we needed it to ask questions and ease concerns.  The hospital was good too.  Wonderful nursing care.  It helps to have confidence in the people working on you!

Thanks to all who post-- it gives me lots of hope and good questions to ask as we move forward.
JoAnn

Re: New to the board

JoAnn,
   WE went to see DR. Gamblin a year ago basically for a second opinion as to the status of my husbands condition. We really liked him too. He told us every thing looked good and that OSU had done a good job so we are continuing the screening there. My husband just had chemo and radiation and had excellent results so your Dad should be fine too since his tumor was surgically removed. Good luck. Mary

Re: New to the board

JoAnn,
Statics are made over decades and do not reflect the current advances. Stop looking at them. (I know that is easier said than done as I am a big stastics checker!!!) You are doing everything right. I have just passed the 1 year mark and have no plans on going anywhere yet!

I hope nothing but the best for you and your father.
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: New to the board

hi JoAnn

thank you for the info on dr. gamblin.  i finally emailed dr. lotze and he was happy to hear how well dr. gamblin is doing.

also, i just want to wish you the best with your father.  as you have seen here, there is hope and an amazing amount of great info.

barb h