Introduction-any help appreciated
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Debbie,
When Mom was first diagnosed, I read so many stories on this board and the journal articles that Gavin posts looking for patients who were surviving longer. More recently, Marion has encouraged those on the board to put their stories under the Survivor Stories chain so some are now easier to find Also, Matt Reidy ‘s story gives much hope too. Although he had surgery, the disease came back and progressed, but keytruda so far is working wonders.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
Tell your Dad we hope for his to be another good news story.
Take care,
CatherineCatherine
That is awesome!!!! I needed to hear that, 2 years is such a blessing with no evidence of disease. I love to share these stories with my Dad. First we need a negative PET scan before we really know his options. The Dr described your mothers scenario exactly and said that was one of the most common reasons to abort. Appreciate your insights. Thanks so much for sharing.Thanks again for your support!
Debbie
Caligirl,
Good luck and I hope the consult goes well. For my mother, they opened her up and because of the location of her tumor and how it extended, they closed her back up and did not proceed further. Instead, we went through chemo and then Y-90 radiation. In hindsight, what made the chemo more difficult was that she was not fully recovered from the surgery when it started. Also, although they didn’t remove the tumor, the aborted surgery still left her with adhesions that can be very painful at times. Although surgery is the words all CC strive to hear, she would have had it easier if we went straight to chemo and radiation. The good news, is that its been over 2 years since her last treatment and she has No Evidence of Disease.
Best Wishes,
CatherineCaligirl….Your Dad is doing everything right and he has the perfect support team by his side (you and your Mom.)
Good luck with Dr. Selby’s consultation. He has operated on many cholangiocarcinoma patients and I would trust him wholeheartedly.
Whenever your Dad is done with your kitchen cabinets can I be next in line?
Hugs,
MarionYes Marion we are going to USC Monday to see Dr Selby. My Dad really wants surgery. He knows how huge it is and that the complication rate is high, even higher in his age group. So I’ll keep you posted on our visit with Dr Selby.
Positivity-I advised my Dad, and he knows, we will all support him of any option he decides on and really none of us, including my Mom, has influenced him in anyway. He’s pretty determined. Now if PET scan monday shows anything these options may change. Dr. Difronzo said they do bile duct biopsies through out the surgery and stop taking out bile duct when they get clear margins. So my guess is, like many cancers, we wont know until they know extent of cancer. Positive nodes etc. I assume that will dictate chemo options? And this site has help educate me on whipple aborts and the various reasons they cannot continue. As they say, life happens while we are making other plans. So we are literally taking it one day at a time. Each day his stint stays in, he’s not jaundiced, and has only minor pain, is a good day. Three long hospitalizations in last 8 weeks. Reading these posts have helped me understand what a rollercoaster this disease puts the one affected and their loved ones on.
Dr Difronzo told him to work each day as much as possible and take long walks. He wants him in best shape possible in case he has surgery. Since he is staying with me until this is resolved I asked “can he redo my kitchen cabinets” Yes he said, keep him busy. Music to my ears.
Appreciate each of your caring and support!! We do believe in the end he is in God’s loving arms,
Debbie
Caligirl,
That is great you are getting a few opinions. My mom cannot have surgery, confirmed by two surgeons. I decided if we get a third option from a surgeon , then they are pushing it and maybe too risky. Get ask much information as possible, and take into consideration everything about your father’s health apart from the CC. Would he still need chemo after surgery? There are patients that need both.Update- went to the Kaiser Los Angeles clinic and met with Dr. DiFronzo. My parents and I were so impressed! He took a great deal of time explaining things to my father. Even at age 84 he said he would do the Whipple surgery as long as the PET scan comes back negative. Although he still has not had a positive cancer biopsy, as the doctor said, with a blocked bile duct, abnormal cells on a few brushings and a couple of biopsies, elevated CEA and CA19 marker tests and evidence of a tumor on EUS that was enough indication for surgery. What I found interesting are the other two options are chemotherapy, and just live with it and treat the symptoms. He said the doctors would not give chemo therapy without a positive biopsy. We will get another opinion from USC and pray the pet scan doesn’t give us any surprises. Post again in the next 10 days or so when we hopefully have an answer on the PET scan. It sounds like that Whipple procedure can have a great deal of complications the first 7 days post op In my dad’s case he said to expect a six hour surgery. Of course that’s with no complications.
Welcome to our group. I hope for others to chime in on your question, but thought to share my thoughts as well.
The tumor markers CEA and CA 19-9 can be elevated for numerous reasons. On it’s own they don’t have much value but for diagnostic purpose physicians take it in account. Most often though these values are watched during treatment, a rise may indicate a positive response whereas a drop may mean non-response. At this point, I would not focus too much on these markers.
As mentioned by you, the bigger issue is the question of tumor removal and if your Dad’s health status allows for such an aggressive surgery. Should your Dad be healthy enough, prior to proceeding to open surgery, the physician would first examine the area with a procedure called laparoscopy.
Hang in there, you are a great advocate.Hugs
MarionSorry if I am not posting this in the correct area. Thanks to all of you who have shared your story and those who have given advice and support. This site has been invaluable in helping me understand this terrible cancer. My story: my dad age 84 and extremly active became jaundiced the first part of January 2017. A stint put in but brushings negative. Four weeks later stint migrated, another EUCP and EUS done. Brushings from EUCP negative but biopsy from EUS came back “atypical cells”. Three weeks later jaundiced again, stint migrated again. This time EUS showed a focal mass in the mid to distal bile duct, 18 X 15 mm and surrounding the bile duct. Dr. Stated “likely malignant”. The biopsy not conclusive for malignancy so Dr suggest another EUS with biopsy in 2 weeks. CEA 4.8 and CA 19-9 is 100. Question; how often should CEA and CA 19-9 be repeated? Going to surgical oncologist for consult in 11 days. Not sure if they will do a whipple on an 84 year old. Especially without a positive biopsy. Any insights? Advice on questions I should be asking? Thanks in advance. Your stories have been extremely helpful in understanding this disease and helping understand the frustration that goes along with diagnosis.
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