scragots
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Jeff and Marc,
Everyone has given you great ideas for furthering your research. I, too, definitely think second and third opinions are excellent ideas.
Now for my two cents: My tumor was approx. 6 cm X 6 cm and I was very fortunate in that I was able to have surgery. I am not saying that your circumstances are the same, but please do get another opinion. I have heard of others with much larger tumors having resections. Of course, I am certainly not a doctor, and have no idea what the exact situation is, but where some doctors immediately say NO, others will, at a minimum, attempt to resect the tumor.
Just don’t give up. I am three years out from my resection and doing very well.
Hugs,
SueLainy and Teddy: OHHHH YEAAAA, BABY!!!! That is such super good news!!! Keep right on dancin’!!!
Hugs to both of you,
Sue2reasons2fight:
Hello! This is Sue. I am so glad you found us, but so sad that you had to.
Here is a link to my very first post:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=608
You can also search “scragots” in the forum search to find all posts by me. Please, please ask me anything you want. I will answer any questions you have. I try to come on here every now and then to remind people that there ARE miracles, even when it comes to CC. Stay strong and stay on top of the doctors etc. Try not to dwell on the bad stuff too much (yea, right…) and know that you can ALWAYS come here for support.
You can also email me personally by clicking on “e-mail” on the left side under my name. And please do! I look forward to hearing from you.
Hugs,
SueDear ejhern,
This is Sue. Yes, tomorrow is my third anniversary from my resection. As far as I know, I remain cancer free, so there IS hope. I was actually Stage 2, but had clean margins and no chemo or radiation. I have always wondered if I should have insisted on it, but the doc was adamant that there was simply nothing to hit with the chemo. So far, I am happy with that decision. Ask me again next year. Just stay on top of things and try not to worry too much until there is really something to worry about. And yes, I KNOW how stupid that sounds. Just try to think about how lucky you have been finding it early. Hopefully it’s just leftover from the surgery…scar tissue or something like that.
Ask all of your questions…people here are wonderful and try to answer anything. And believe me, there have been many things asked that can only be answered by us!!!
Hugs,
SueDear Chris,
I also wanted to tell YOU how thrilled I am for you! Some days, I feel guilty when I come here and “flaunt” my success, but I really truly feel that people need to know that there really are survivors and I am so happy to hear from another one!!! May good health continue to be yours!!!
Hugs,
SueDear 2reasons2fight:
My cancer buddy Kris said you needed some reassurance about this cancer. Well, here I am!!! I don’t write on the boards very often, but I check in EVERY DAY to see how everyone is. I didn’t have a whipple, “ONLY” a liver resection. They removed 2/3 of my liver and my gallbaldder. In fact, this Friday, 01/29/10, will be my third anniversary!!! I am feeling great and hope to be around for many years to bug these wonderful people and provide a little ray of hope. Surgery was tough…9 days in the hospital, 3 months off work…and it took a year or so to really feel better, but you get thru it and move on.
I didn’t have any chemo or radiation before or after. My surgeon said she was confident that she got it all and there was no reason for further treatment. Obviously this is a decision that you and your doctor will need to plan out. I still, deep inside, wish I had had one or the other, but I didn’t, and so far, so good.
I have scans every 6-9 months (she wants me to wait a year, but I am NOT ready for that) and bloodwork every 3 months. I feel better than I have in years and plan to celebrate on Friday!!!
I know this is on your mind every minute of the day as it was with me. It does eventually get a little easier, you will find other things taking the place of the worry, but some days, when I let my brain go, it consumes me and I’m not sure anyone understands how I feel. (Except the wonderful people on this site, of course!!!)
I am sure you can find my story on here if you care to read it. Just know…YES, there is hope. And good wishes are being sent your way from many of us. Feel free to write and/or ask ANY questions, no matter how trivial.
Hugs,
SueI just wanted to say that I actually had TWO needle biopsies, three weeks apart. The first time the doctor (who I immediately FIRED) didn’t even tell the radiologist that I had a tumor and when he saw it, he went to my husband and said “Do you realize that your wife has a tumor???” My husband told him “Yes, that’s why we are here” but since he had not been told about it, he did everything he could to AVOID it. Therefore, three weeks later, back I go for a biopsy of the actual tumor. I think I was in such an emotional state, it didn’t even register what the first idiot doctor did, but I eventually found my way to docs that actually cared, and today, I am almost 3 years cancer free.
I have NO DOUBT that seeding into the abdomen CAN happen after a needle biopsy, but my doctor wanted to know for sure, and that was the only sure way to find out. And I trusted him (the second doc, not the first, who was an idiot). And I wanted to know what I was up against.
That said, I know NOTHING about transplant protocol, and if it meant I would be disqualified from the program, I would seriously have to think about whether it was worth the risk.
Take care,
SueHi Kris (and everyone!),
I admit it. I’m a pee (and poo) checker. When I first got sick, the one really weird thing I remember is my pee was flourescent yellow. At that time, it was actually due to my gallbladder, but I still always check. I think I am still waiting for it to happen again, but this time I would know what was causing it, and it would not be my gallbaldder (since it’s “Gone With The Liver”). But I am super glad yours was due to the toilet water color…something to remember!
I think about you all the time.
Hugs,
SueThis is fantastic news! I am almost 3 years out from my resection and doing great. Good luck and let us know how everything goes!
Sue
Amy,
I am so sorry you have to go thru this. I lost my dad and my mom a few years back, and I hurt so bad knowing I couldn’t talk to them again. But it does get better. It really does. But it will only get better on it’s own schedule. I think about you everyday (I still have your mom as a friend on facebook…now don’t cry about that!!! I am just not ready to take her name off. That’s silly, isn’t it?) I never even met her but she sure seemed like a wonderful woman.
Don’t rush things. You need to get thru the sad to remember the wonderful sometimes.
Hugs,
SueBetsy,
As sweet Kris mentioned, I had my resection in January of 2007 and so far I am still cancer free! I just had a recent CT (Sept 18) and the doc says everything looks great! She told me that most recurrences occur in the first year and by the end of the second year, the recurrence rate lowers to single digits. Obviously that does not mean it won’t come back, but it sure sounds better than the original diagnosis!
Feel free to ask me any questions. My heart goes out to all who fight this stinking disease, and I always hope that people see my posts as good news, hopeful news.
Hugs to all,
SueThanks, ajcarman72! You are more than welcome to check my history. You can either use the “search forum” button at the top of this page to search my username (scragots) or you can click on my username in the box to the left and then click on “see all posts” or something like that. It will show you all of my posts and you can start with the oldest one. If you have ANY trouble, just let me know and I will send you some direct links to my posts.
Never forget there is always hope!!!
Hi Amy,
I think about you every day. I wish things could have been different but at least you were there for your mom, and she was there for you. Time does make things better, but she will always hold a special place in your heart.
I think you are correct on the hepatic failure/CC explanation. I assume the CC eventually causes the liver to fail, so that would be the “official” cause.
Hugs,
SueLadyria,
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
Amy,
I am so sad to read this news. I have been following along, crossing my fingers that she would get to see her newest grandchild. But, you know she has probably already met him (I think it’s a boy???) as she is an angel now and angels always take care of the babies before they are born.
Your mom sounded like a wonderful lady and I think she raised a wonderful daughter. I know you made her very proud and she will always be watching you and smiling.
Hugs,
Sue
