New diagnosis
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Laurie…..I would like to echo everyone else in welcoming you. Much information has been shared with you already however; I would like to emphasize the importance of numerous professional opinions. It is my opinion that you would want to have your scans and other reports evaluated by a center treating a high volume of CC patients. I am glad that you have found us. Be prepared for much information and support coming your way from our great members.
All my best wishes,
MarionHi Laurie,
Welcome to this wonderful site. I am fairly new here too and have felt very welcome and comforted by all the wealth of knowledge that can be gleaned from the people here. Please grab all that you can use.
I just turned 53 and was diagnosed in March 09 with CC. I thought I was fortunate that my cancer was in the bile duct and mostly in the left lobe of the liver. I had very little symptoms or discomfort and had surgery in April, followed by chemo. I also had a smaller tumor in the right lobe that was burned. After chemo, all CT scans showed no cancer. My subsequent scans in Feb this year, showed the burned tumor had come back with another very small new one.
I am on chemo again, Oxaliplatin IV with Xeloda pills and then the waiting again to see if it will shrink the tumors enough for surgery again. What I will say is this. I’ve read very terrific success stories here with people that had chemo allowing them to have surgery, and people that just had chemo. What is important is that you are comfortable with your decisions.
In my case, I’m not afraid for myself, but for my family and my 5-year old son. Therefore, I would do what I can to prolong the inevitable to be there for them longer and until I feel I’ve done all I can for them, meaning my work is done here on earth. If you can get those feelings and are there for your family until they can also feel more comfort, then do what you can. You will know.
I have decided to record and leave a video diary of things that I wanted my son and rest of my family to know (that maybe I haven’t or won’t be able to tell them). So, my goal is to do what I can to complete that task. Maybe I’ll feel better about the illness when that is done, and give them more comfort and something to hold on to for a while after I have gone.
I don’t get the impression that CC is completely beatable. It may be a number of years down the road, but it appears to keep coming back. Maybe I’m wrong, but has anyone out there beat it completely for more than 6-8 years?
Take what you need from this site to make your very personal decision. I made decisions before seeing anything from here and wish that I had known more before. Good luck and best wishes here.
Linda Z.
Hi Laurie:
So sorry to hear of your diagnosis. Frankly, I’ve learned recently how quickly cholangiocarcinoma grows, so it’s not surprising to hear that physicians so frequently tack on such an ugly prognosis. I’m much like you, diagnosed with a large liver tumor, but largely asymptomatic.
There are so many people on this board that have outlived the prognosis given, and there’s no reason why you can’t either. Statistics do not take into account the human factor and the power of God. They’re always changing, and by the time new statistics are published, the data is already outdated. Therefore, I have come up with this most scientific of conclusions: statistics are stupid. Ignore them.
There are so many different chemo combinations out there now, and I honestly don’t know why some physicians choose one over another. I’m on a combo of Gemsar and Cisplatin, but there are so many other drugs out there. Some combos work for some and not for others, and it seems sometimes there’s no rhyme or reason to why. Cancer, he’s a crazy little turd.
Deciding your treatment plan is such a personal decision, but I second the recommendation of those that say when you feel like your oncologist is gloom and doom and doesn’t seem to offer you a whole lot of either options or hope, go get yourself another one. Act like a consumer. You are spending money on healthcare, so get the most bang for your buck. Find a physician that is fighting right alongside you.
Hi Laurie,
I really don’t have much more to offer than you have already been given, but do want to welcome you to the site and let you know I am thinking of you and hoping for the best. Take care and keep in touch. There are a lot of good people here who understand and care and all are willing to share information, support or just an ear when you need to vent.
Love & Hugs,
DarlaIbellemurphy, of course everyone is devastated but have hope and courage and attitude. You just never know, none of ever know. The Whipple is for CC in the Bile duct system but that has not gone in to the liver yet. Get your other opinions and then make that very personal decision as to how you want to proceed. I am sending prayers your way and good thoughts and please keep us informed.
Hello all thanks for the welcome.
I live in Upstate NY. I am a mental health nurse, I am 54. I am trying to get a second opinion in In Rochester Ny at Strong Hospital.
I was told it is unresectable and I am not a candidate for a transplant. The liver tumor is very large 8 x 4 inches and aggressive. My LFT’s are not bad yet. I have had scans, a biopsy and MRI’s. Bilirubin is normal at this time. The biopsy stated it has come from another source not seen anywhere.
I was told I have 2-3 mos with no treatment maybe and 6-8 months with chemo maybe. I just don’t know if I really want to postpone the inevitable.
My adult children are frantic. My husband is so sad. I am on Oxycontin and dilaudid so I am feeling no pain. I can eat right now. I am really tired and getting weaker. But I am not afraid.
I was happy to talk with others that are facing the same thing.
can anyone give me more info on the Whipple. Don’t know if I qualify or not. Strong is a big cancer center so they may see something else don’t know. I will talk with you all.
laurieHello, IBELLMURPHY and welcome to our wonderful family. Yes, it is a shock to hear someone has this. Read up as much as you can as to be educated on this is the best thing for making informed decisions and becoming your greatest advocate. Do you have someone to help you along this path? We will need a little more information from you as well. What area do you live in? Where is the CC located? I echo the others in recommending a second opinion.
It is very scary but I promise once you know more about what you are fighting
and your game plan starts, the fight will take over the fright. Please let us know more and you will receive lots of good support from our Site.Hi Ibellmurphy,
Welcome to the site although I am sorry that you had to come here. Please keep coming back often as you will get so much support and help from all of us here. And please feel free to ask any and all questions that you will have and I know that you will get answers from someone if they can answer.
I can’t help you with your chemo questions as my dad never had chemo. He was diagnosed in summer 2008 with inoperable CC and his treatment was Phtotodynaimc Therapy with the possibility of chemo at a later date. As it turned out though, he never got the chemo.
If you want to search other posts regarding chemo and whether to have it or not and there are lots of them, then you can use the search forum function at the top of the page on the site. Hopefully this will throw up some dusicussions for you to read and I am sure that others will be along soon who can share their experiences of chemo etc. Yes this is a shocking diagnosis to hear and I know what I felt like when my dad was diagnosed. It was not easy to hear that and have to start looking into treatment and all the information that comes with all of this. But once we got a treatment plan in place for my dad we felt a bit calmer about it all and I hope the same for you.
Stay strong and my best wishes to you,
Gavin
Hi,
I have an inoperable tumor (too large for liver transplant). I did have radiation and chemo at Mayo in Rochester last fall. It did stop growth. They tell me I have too great a risk for infection to do other procedures so chemo is now my only option, too. Haven’t started that yet as it needs to be correlated with my next stent replacement.
Please tell us more about your diagnosis. I haven’t been on this site long, but here you will find very caring people with first hand knowledge, going through the same things you are.
Kathy
lbellmurphy:
So sorry to hear that you have been diagnosed with CC. Welcome to the best CC site for infomation and real life stories. You will find a lot of information on this site.
Why is Chemo your only option? Have you sought other opinoins? Where are you seeking care? Do you have family to support you through this? How old are you? Multiple tumors or only one? Confined to the bile ducts or do you have mets? Is it considered inoperable? What about a resection or a whipple? What is your bilirubin level? What is your alk phosphate level? What chemo are they offering?
Sorry to fire so many questions at you, but without more information it’s hard to offer advice without knowing some of the particulars.
My husband Tom was diagnosed in March ’08 and had a successul liver resection, but presented with a new inoperable tumor in Nov ’09, has undergone radiation treatments and is now on chemo, Xleoda. You can read about his journey under “My husband and Cholangiocarcinoma”
I am adding you to my prayer list.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
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