newly diagnosed
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Hi JC,
I somehow missed this post, but please accept a belated warm welcome from me as well. I hope that your mums meeting with her onc goes well next week. Please keep us up to date with everything.
My best wishes to you and your mum,
Gavin
JC:
Let me join the others in welcoming you to this board. So sorry to hear about your mom. My husband Tom had two external drains after his liver resection for CC due to a bile leak. He carried those drains around for 7 1/2 months before the bile leak healed. In Nov he presented with a new tumor and they were unable to place an internal stent. He has now had his new external drain for almost 7 months and although the external drains are a nuiscance, they do a wonderful job of keeping the bilirubin levels near or at normal range.The external drain is not the most ideal situation, but they do serve a purpose. Hang in there and ask a lot of questions if you go to the doctor visits with your mom. My husband was given a 6 month prognosis and when I checked his behind, I did not see an expiration date stamped there. So no one really ‘knows’ what this disease will bring. The power of prayer and faith and attitude goes a VERY long way, and we do have success stories on this site.
Go with God, and KEEP KICKIN’ THAT cancer.
Margaret
thank you all for your wishes, it has been a trying time, we are using the doctors at the university of chicago and at present to get her better with the bile issue. 2 external drains have been installed and seem to be doing the trick, it is the first time in weeks that she is feeling better and eating. seems the bile is not going down as the doctors would have wanted and were told that medically they cannot do any more for the drains, and waiting for the results of the liver biopsy. will be meeting with the oncologist next week to see what our options. we are hopeful but being in the hospital was really taking its toll. I hope that we are seeing the results of her getting stronger with being at home. i will be asking the pertant questions suggested posted thank you. thank you. thank you. for the imput.
Doctors have ruled that the best bet is to treat the cancer rather than surgery. we believe we have the best at the U of C .
will advise once we get more info from doctors.
as you know the pile of bricks is getting a little lighter and seeing clearer.
thanks……
Welcome Jc,
Welcome to one of the best (if not the best) discussion boards you will find. Sorry for your mom’s diagnosis, but you are in the right place here for information. And information is what you will need. I really advocate getting a second (or more) opinion and educate yourself on this cancer. The more you know, the more you will be able to figure out if the doctors actually know what they are doing, or if they are just going through the motions.
Keep us posted and come back and tell us your mom’s diagnosis background. We may be able to add a little more if we know where she’s been.
Best wishes to all,
Linda Z.
Hi JC,
Welcome to the board. You will find we all pretty much agree with Marion. Get second and third opinions. You will know the right doctor when you find him.Dont fall into the trap that chemo or surgery are your mothers only options. Depending on the tumor size and placement, other treatments may be available. Read up on Photodynamic Light Therapy, cyberknife, sirt, TACE, proton beam radiation and radio frequency ablation. Then ask the doctors if these are options for your mother. Dont forget to ask about drug trials as well. Thinking outside the box can be important.
Take care.
KrisJC,
I’m sorry to hear about your mother.
A small percentage of CC patients are able to be transplanted. There are strict criteria for the protocol ( age, tumor under 3CM, no mets, good health otherwise), and having a newly diagnosed family member, I encourage you to see if this is an option. My mother is a CC survivor because of the Mayo transplant protocol and I was made aware of it on this website. Best of luck to you and your family.
Ashley from CTHi JC and Welcome to our Family but sorry to hear about your Mom. I so agree about another opinion. I know this has all hit you like a ton of bricks, but try to read up a little on our Posts to familiarize yourself with this Cancer as it is very important to be informed. That will also help you to ask good questions of the Oncologist. Go to our Search button at the top of the page and type in a word and you will get posts relating to that subject. Do you mind telling us where she is being treated and how old she is? I know more “welcomes” are going to be headed your way and please feel free to come here to vent, advise and hang out with the BEST in the World.
Hello jc and welcome to the club no one wants to belong to. The good news is that the bile is draining. This in turn will alleviate the jaundice and possible itching associated with non-drainage of bile.
Much is now a waiting game. The CT scans need to be evaluated and your Mom’s cancer most likely will be staged.
I am a strong believer in second or third medical opinions. Experts vary in their approaches to this cancer and you would want to search out those physicians very familiar with this cancer. This disease has a tendency to sneak up on us, taking us by surprise and leaving us very confused. I assume that this is what happened to you also.
You will be able to make decisions after a picture of the true extent of this disease emerges.
I am glad that you have found us. The members on this board are caring, kind, understanding and will support you along the way. We are with you.
I hope that you can get some rest and find a few minutes to relax.
I am looking forward to hearing from you real soon.
Best wishes,
Marionhello, so much has happened in the last 2 weeks, just that my mother was diagnosed with CC. It seems to be pretty bad, the bile will just not drain. we now have 2 external drains that after the attempts of the stints did not work, we are hopeful. So from here It seems pretty bleak the doctors took a biopsy of her liver today to hopefully be able to see what is going on. the bile numbers seem to be at a platue. We have been advised that surgery is not an option. She is still suffering from jaundice but not as bad as when we first started.
So where do we go from here?
just looking for thoughts and experiences from others to some what navigate as to what is ahead?
my thoughts are not so clear but hope prevails.
thanks,
jc
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