jpmski
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Rosina,
Went through the same kind of thing with my mother. My advice would be to talk to him as if he wasn’t sick. In fact, ignore the illness altogether unless he brings it up.
The sickness itself becomes the 800 lbs gorilla in the room, which sucks. Everyone starts asking “How do you feel? You’re pain, take something. Don’t get up, I’ll get it for you.” It would be impossible to feel normal if everyone around you is reminding you that you’re not. Even though they have the best intentions.
I would absolutely hate being the center of attention like that, I wouldn’t feel like I could not get better. I’d probably throw everyone out of my house.
He’s going to handle this, how he handles it. No one gets any say in that, so follow his lead and be what he wants you to be. Even if you extremely disagree.
Joe
Ron,
Sorry to hear that. I have spent a lot of time at the University Hospital in Denver with my mother. I watched that place get built.
By and large, there are good people there and one or two I’d like to punch in the nose, but if I were you I wouldn’t be afraid to look elsewhere to deal with this particular cancer. The surgeons in Denver told us that surgery was not an option, definitively. In fact, one of them (I can’t remember his name, I think he was from Argentina) basically challenged me to prove him wrong. 6 months later I found a surgeon in LA that said he could totally operate based on the info they had at the time.
I like the University Hospital, but its also a big mall. They just keep coming in trying to sell you on their services, endlessly.
Also, I would not put too much expectations on the performance of those stents. They get clogged easily and stop working. They only worked for a very short period of time for my mother. She had external drains put in on each side of the liver. Which is not ideal, but the one thing it does for you is it allows you drain the bile externally when the stents get clogged. Once they get clogged the bilirubin can spike pretty quickly, so you need to pay attention to the symptoms. If you’re doing chemo its probably critical that you keep the bilirubin under control.
From my experience you are going to have to be the ‘traffic cop’. Everyone there kind of stays in their lane and expects you to know the questions you want answered.
Good luck.
Joe
Tania,
It was both for my mother. She had a couple of ERCPs before it was definitive. The first one showed that it wasn’t cancer but GI doctor told me to ignore the results because he knew it was a Klatskin Tumor. 2 weeks later he was proven correct.
She was originally told it was not surgically operable by a jackass doctor in Denver, but I found a surgeon in LA about 5 months later that said he could remove it. Ultimately, too much time had passed.
I would tell you that 2 different surgeon can look at the same information and have two completely interpretations. So if one says they can’t get it, I would just talk to other surgeons.
Hope that helps
Joe
Katherine,
Stay on your surgeons and keep pushing them as to why not now? You got the right diagnosis, being resectable, you don’t want it squandered. Circumstanace change, doctors quit, scheduling gets f’d up, etc.
You have to trust them but you want it out, at the first possible moment. The only benefit you have right now is that you get to be major pain in the ass and no one can say boo to you. Don’t squander that either.
Good luck.
Joe
Just get it taken out. Let them figure out if it’s cancer afterwards. Don’t get hung up on details.
Joe
Kay,
You need to widen your search. You don’t need to ‘go’ anywhere to find a surgeon, at least preliminary, you need to get them the information they need to make a determination.
Even if you drove 2,000 miles to meet with the best surgeon in the world, they’re still going to say ‘Let me review everything’.
Have your package put together and start sending it anywhere that will take it. You can fly somewhere just do the surgery and then come back to your home base for other treatment options.
That’s what we did. We live in Denver and the surgeons at University Hospital here said “This is totally inoperable, and I’m a 100% right. Ask anyone.” (That is almost literally what he said, what a total dick). I found a doctor at Univ Southern Cal in LA, Dr. Prahrek. Once I got them all the info the needed, which took a while, they immediately came back and said “Yeah, we can totally get that out. I don’t know what your Denver doctor’s issues are.”
Once you have the ‘curtain pulled back’ on the medical community you see that it’s all about confidence, experience, and honesty about those two things.
Joe
Kay,
Yes, the come back as inconclusive, or even negative in my mom’s case. If it was me, know what I know, this is what I would do:
1) If the bilirubin is high it needs to come down or else you will lose treatment options. I would take the path of least resistance. You dad has already had a tough go with ERCP’s, and they never worked for my mom as far as stent placements go. They were 100% failure, and she had many of them.
Talk to them about having an external drain, or two, put in. It will allow the liver to drain externally into a bag. You will need in IR doctor for that. They’re not easy procedures but that not as tough as ERCPs, at least from the witnessing standpoint.
It will get the bilirubin down which is want you want. The risk is, if you screw around too much in this phase you (they) may create other problems. In my mother’s case, they nicked something and created internal bleeding, which created a two week hospital stay. And essentially wasted time and her energy.
2) At the same time, if the cancer hasn’t spread, your sole focus is to find a surgeon who will take it out. You may have to look all over. Start putting together your medical records to send out. You need everything. Copies of the CT scans are #1. And then you need to be in constant contact with everyone you send it to.
If one says they can’t do it, you say “next”. From my ignorant POV, surgery is all about confidence and if a surgeon doesn’t have the confidence or experience, he or she is not going to tell you that. They’re just going to say it can’t be done. I have seen two different surgeons come to complete opposite conclusions, with the same information, and they both were 100% confident.
Time is not your friend. And the medical community sucks up time like a dry sponge to water.
Good luck.
Joe
Shelly,
ERCP’s used to really beat the hell out of my mom. The first one in particular. She was in the hospital for a few days after. Her tumor was very difficult to navigate so I think that added complications.
Joe
Rick,
My mother had a similar diagnosistic experience, but not as ongoing as yours. The first ercp she had the GI doctor said it was cancer before the results came back. A few days later a PA told us that the test was negative, which made everyone feel great.
I spoke with the GI the next day, and he was unaware of what the PA told us, he was angry at the PA and told me to ignore the test results. That he knew he was correct about it being cancer. Which put me in a shitty position, the first of many actually.
The GI referred us to a bigger hospital that had more tools. They did another ercp and he was confirmed correct.
Unfortunately, my experience suggests you should trust their take.
Joe
Rebecca,
That’s sucks, I’m sorry. This is a very brave thing for you to post.
Even though it’s the cause of confusion, I am glad for you that you are asymptomatic. My mother had every symptom in book, and she still struggled with something similar. It’s a cliche but true in her case, she was never sick a day in her life. And her mother of 97 was still alive and sharp as tack. This was the source of her confusion.
Just the other day I came across one of the last articles Roger Ebert wrote, and it was comforting to see someone have a contemporary and usable philosophy to life and death, at least to me. I can’t say I understood entirely where he was coming from, but the point to me was that he’d thought about it and he knew where he stood. Which I am envious of.
I am pulling for you.
Joe
Bonnie,
Stents get clogged up all the time. 3 months on a stent seems unlikely to me. My mother was on a 4 to 8 week rotation with them.
Pay attention to what your husband is saying, he’ll give you signs that it’s getting clogged up. Fatigue, look for yellowing in the whites of the eyes.
Are they placing the stents via an ERCP or does he have an external drain and the change the stents out that way? Neither way is fun, but the external drains seemed a little easier on my mother to recover from. But her tumor was exceptionally difficult for them to navigate around.
Having an external drain is not something anyone wants to do, but there are big benefits to it from my point of view. Number one being, if the stent gets clogged and can’t drain, you can open up the external drain and help relieve the pressure on the liver.
Good luck.
Joe
Wow, you are a tough woman. It sounds like cancer picked the wrong person to mess with.
I hope it goes well for you. I have to believe, while being awful to go through, all those surgeries kept it in check.
Good luck.
Joe
Nate,
I’m unsure of how much time has past since the diagnosis from all the posts. You need to get your package of medical information together that you’re going to send out to all the surgeons are the country that might be able to do it.
If it hasn’t spread, if it’s a single tumor still…your mission right now is to put this in front of the right people. Do not get put on some path where you are going ‘station to station’. You need to drive the boat. How’s that for mixing metaphors?
If it’s a single tumor, or at least they believe so, you do not stop until every surgeon has said no. I witness two completely different opinions about the same information. One said Yes and they other said No, and they were both absolutely certain of their positions.
Nothing will work faster than surgery. Not even close.
Good luck
Joe
