Introductions…
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Hi and we are so sorry about the DX. The MOST important criteria to look for in an Oncologist is that he has experienced CC patients. If you can let us know what city your mom is living in perhaps we have some members on Board that know of some ONCs. Please keep us posted.
Thank you all. It’s been a whirlwind week. The physicians were back and forth on the decision for a while, but it turns out she’s inoperable. The lesion lies too close to the liver and the gallbladder. I wasnt there when the surgeon spoke with my mom (my aunt was) and there are so many other questions I have.
They are a great team and are going to refer an oncologist to us. Now, what type of Onc should we see? Being in the medical field myself, I know there are many subspecialties.
Raye- I will def contact you a little later on-once we get some plan in order with the Onc-we want to fight this sucker as soon as we can. I want to weight all these options with her. Tell her about all I’ve read and suggestions I’ve heard.
You’re all amazing-thank you for giving me that daily strength I need.
Hi and Welcome.
Yes, this cancer does seem overwhelming and at times unsurmountable. Yet there is hope. Our Jeff lived 10 years after diagnosis and our Sue is still cancer free 2 and a half years after surgery and there are others who offer light in what sometimes feels a very dark hole.
If the surgon says surgery, I would go for it. I had surgery, though my cancer was rediagnosed 2 years later. But I never regretted my decision. If surgery is not an option, there are other treatments. They are not a cure, but as I look at it, I just have to stay alive long enough for one to come down the pipeline.
Kris
Ladyria,
I’m a CC liver transplant survivor. You’re in the right town for a checkup and evaluation at the Mayo clinic in Jacksonville. If you’d like a little more information please send me an e-mail or give me a call anytime at 269-598-1861 and I can give you the scoop and my story on the transplant protocol and the value of this surgery. Ashley called me several months or so ago about her mother and they’re glad they did.
Please call.
Raye
Ladyria,
I wish your mom the best. We all know how hard this is to go through – whether you are the patient or the caregiver.I just want to throw out there that transplant is also an option for some CC patients. Jacksonville- Mayo has a protocol for liver transplant with CC. You have not mentioned any mets or the size of the tumor – which are all taken into account for transplant. Again, just want you to know this in case your mom could be a candidate.
My mother is 66 and is currently going through the mayo transplant protocol in Minnesota.
I wouldn’t have even known about it if I hadn’t read a posting on this website back in July when we started our rollercoaster.
I wish your mom the best in her treatment.
Ashley from CTHi Ladyria, along with all everyone else, welcome to here.
I had surgery (bile duct resection) in May 2009, although my cc wasn’t confirmed until the histology after the op. It was suspected but the docs were uncertain if it was cc or some sort of inflammatory stricture.
Therefore I was given the choice of having the op or not.
My surgeon gave me plenty of info to go on with regarding how things may be after the op, he was correct on most! I had a largely uneventful recovery immediately after the op – high dependency ward, not ICU, although then developed a wound infection, which I am still struggling with.
Very best wishes to you & your Mum, hope the decisions become clear to you all as you receive all the relevant information You’ll find plenty of information on here plus plenty of inspirational people.
Best wishes, Val
Ladyria,
I had surgery in Jan. 2007 and I do not remember whether or not to have the surgery even going thru my mind. I never questioned it, just knew I had to do it if given the chance. So many do not have that opportunity. Definitely listen to your doctor and if you don’t hear what you want to hear, then find another doctor to run it by. I wish you both all good luck for the opportunity for surgery with great results!
Sue
Thank you all. It’s a rollercoaster of a time-and I want her to know she is NOT alone. It’s difficult to digest. I guess in time, I will accept and handle everything that is happening.
The surgeons wanted to review the ERCP/MRCP that was done last Monday-with that they will see if she is operable. I know whatever the case it is meant to be. I have faith that no matter the outcome we will get through this.
Wendy- that’s exactly what my mom feels right now- the faith you had for your surgeon. She has faith that if she is operable, that it will be succesful. I’m also glad that you are feeling better.
Thank you all again. *hugs*
Dear Ladyria,
Welcome. Like you I am new at this.I had my opperation on the 1st August this year. I do not recall making a decision, or even weighing the risks, it was what my wonderful surgeon suggested and as I have faith in him I went ahead with it. For me I sailed through with only one day in ICU, six weeks later I feel great still get a bit tired and find 4 to 5 hours is the best I can do before having a nap, still have some minor pain but not too often.
The worst thing for me was that, as I live in a remote area of Australia, I had to be taken 2,000klms from home for the opp. This, for me, means all my family and friends were far away from me.
I wish you and your mum luck.
Wendy.
Ladyria,
It is nice to make your acquaintance, so sorry it is under these circumstances. I think if it is operable then there are other questions to look at–how old is she, does she have any other health problems? My mom was 66 with heart problems and opted to go for the surgery, which gave us 8 months with her that I don’t think we would have had otherwise.
I am sorry you don’t have siblings, this is a great weight to bear. Please consider us your “sisters and brothers.” As I have said before, people affected by rare cancers need to stick together, we understand in a way no one else can.
Patty
Hello Lady Ria,
Welcome to the site, although I am sorry that you have to be here. I can relate to how you are feeling right now, my dad was diagnosed with CC last summer so I know what it’s like trying to get your head round all of this during what is a stressful time. This is a great place where you will get loads of help and support from people who have been and are going through what you are, so I hope you will stick around.
I’m afraid I can’t help you with your question on the risks about surgery as my dad was deemed inoperable, but I’m sure others will be along to help you with that. Like you, I am an only child as well so I know what you mean when you talk about having to be strong for your mum. My mum is also ill, has COPD and I am the carer for both of them. Once you get over the shock of all this then the fight will take over. It might not seem that way right now, but it will.
It sounds like you mum has a great positive attitude, and seems up for the fight and positivity will be a great help for you both. Finding out as much information as you can about CC will also help you so read and ask any and all questions you can think of here.
Take care and I wish you and your mum my best wishes.
Gavin
Welcome from me, too, Ladyria. I do so understand the shock you’re going through. It’s only been 4 days since my sister’s CC was finally formally diagnosed, but they’d been muttering about it for a couple of weeks before that. She’s my “big sister” & she’s been around all my life so it’s incomprehensible to me that she may not always be around.
I agree with Lainy that, as the shock recedes, the fear eases & the fight takes over. That’s what I’ve found has happened to me since I discovered this wonderful site & stopped feeling so alone.
Please let us know how you get on. I send my very best wishes to you & your mum.
Julia
Welcome Lady Ria, to the best club in the world that no one wishes to have to join. No need to apologize for anything, your reactions are perfectly normal and once you have “digested” it all, your fear will turn to fight. Sounds like your mom’s attitude is great and that is why it is so important for us not to let down in front of our loved ones going through this nightmare journey. It also sounds like the doctors have a hold on this. Try to do some reading of our old posts as that will help you to think of questions you want to ask the doctors. Also make sure these doctors are experienced in CC. We are so sorry you had to find us but glad you did and please keep us posted.
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