jpmski
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604son,
I’m not in the industry but got a crash course with my mother. What I would say is, I trust their opinions knowing full well that those opinions are based on their skill level, experience, and confidence. Their opinions need to be filtered through those caveats.
I don’t believe that its binary, where it’s either a 1 or 0, and if one person says its a 1 then everyone else goes ‘yep, its a 1’. Especially with surgeons. No doctor is going to say, ‘that tumor is inoperable because I don’t have the experience, skill, or confidence to do it.’ But it might be the truth nonetheless.
To Marion’s point, you need to talk to specialists. Good luck.
Joe
Deadlift (?, your parents must have hated you
First off, I’m sorry for your wife and you. That horrible. She’s too young for this cancer.
You sound like you are at the mercy of the medical community, which for me was not a great feeling. You latch on to everything they say, good or bad, as fact. When actuality they speculating more than anything.
Your wife is in a tough spot, so I don’t have a lot of practical advice for you. She needs a string of good news.
Good luck,
Joe
I have no opinion on the clinical trials as I have no experience with it. I would tell you to remember that everything they tell is all interpretation, not necessarily fact.
That’s a lesson I learned from the jackoff surgeon at the university of colo hospital. After he told me that he was absolutely correct that the tumor was inoperable, my sister asked to see the CT scan that he was basing this hard and fast opinion on.
He’s walking us through the scan which is this opaque picture, and he’s being definitive about something that is completely impressionistic. After seeing that I said this is all interpretation, I just need to find someone with a different interpretation than you, and I did.
Doctors are no different than any other profession, it’s all about experience and confidence. It’s just harder to gauge if they’re right when they say something can’t be done, or if they just lack the skills and their opinion is based on their inabilities.
Brian,
The first GI doctor (an older, gruff guy) that did an ECRP on my mom told me right after he came out of the procedure that it was a klatskin tumor. This was before the testing was complete, but he told me he knows his business and he had no doubts.
My mom was in the hospital for 5 days and all that time we never got the results back. As she checked out some well-intentioned physician’s assistant tells us the test was negative, so we are like great. I talk to the GI doctor the next day on the phone and didn’t know we were told it was negative. He becomes ticked off at the PA and tells me to ignore the test results because its definitely a klatskin tumor, and the tests are imperfect. He was right.
Six weeks later we are having a cancer meeting with the oncology department at the Univ of Colorado hospital, like you are today. The surgeon, who was gigantic dick, told us it was not operable, and he goes so far as to say you can take these results elsewhere but you are going to find that he’s correct. I get the results double-checked by exactly one other hospital, USC, and they come back and say, “That tumor is totally operable. We don’t understand why your guy is telling you it’s not.”
Frankly Brian, do not allow yourselves to get caught up in something like this, because time will be wasted. “Is it a rose? No, might it be a tulip?” Who gives a shit? There is exactly one question you needed answered yesterday, is it operable and what time is surgery tomorrow? It’s just that simple.
This cancer spreads like pollen. You can’t let them run the show. While having, mostly, your best interest at heart, they will waste time you don’t have.
I hope you get good results today.
Best,
Joe
Rangani,
I don’t know what to tell here, it’s not a good experience. Obviously, I would prefer to not have the memories of my mother withering away, but it is what it is and you’re not going to leave them alone. So what choice do you have but to bare witness?
I would say don’t leave any “bullets in the gun”, if there’s something you want to talk about with her, do it. Good or bad, because some of this is about you too.
If you want a good idea where your mother is in the passing phases, the hospice people can probably tell you within plus or minus a couple of days.
Joe
You are on a rapid learning curve my friend. This website is your first stop, there’s a lot of really good information and you need to consume it quickly.
Here is the doctor at USC I reached out to. Very experience, super confident in a comforting way, but also very honest and direct. We flew out there to do the surgery but ultimately too much time lapse and the cancer had spread by the time they did the surgery.
http://www.surgery.usc.edu/hepatobiliary/facultyandstaff-parekh_dilip.html
It’s been a little while since I’ve had my brain focused on this so I’ve forgotten some things that might be helpful. You, or someone else, need to start amassing medical records. Don’t overthink it, just get everything. The Univ of Colorado system is good because you can download a lot right from the website, but not everything.
You’ll need to put a package together for the surgeons to review. You’ll need copies of the CT scans on disks (make sure you order enough copies of them) and the reports that go with them. That will be the most complex thing you’ll need to get. You’ll get it from the imaging department at the hospital, I think.
It’s hard to comprehend how busy and how in demand someone like Dr. Parekh is. I don’t know how he goes on vacation. I tell you that because you’ll send this stuff and then you’ll wait until he and his team have time to review it, and frankly that could be a couple of weeks. Time is not your friend.
The number one rule for all of this, and I can’t stress this enough, is to develop a close relationship with the head nurse at every doctor’s office you deal with. They absolutely can move mountains for you. You are in this administrative phase where you need to get into the system and on people’s radarscope.
Make sure you’re organized, you don’t want to waste time searching for things that you know you have. Also, retain everyone’s phone numbers. My contact for the Univ of Colorado hospital must have 10-15 phone numbers on it.
Vallerina,
I live in Colorado and have experience with Univ of Colorado, I would touch base with them but I would not take their word as definitive. They told my mother surgery was definitely not an option, but the doctor at USC in Los Angeles said it was totally operable.
There is only two words your father needs to focus on: surgery and spreading. Keep searching for a surgeon until you find one that says yes, and it needs to happen before the cancer spreads or they won’t do the surgery. And this cancer spreads very easily, so there is no time to waste.
Even if he does have surgery they’re probably still going have him to chemo anyways, just to cover those bases. If it was me, I would look at it like there is a big clock ticking.
Good luck
Joe
Beth,
You have MD Anderson in your backyard so that’s great. But if I were you I would reach out to Dr. Parek’s office at the USC Hospital in LA. He’s a very experienced and confident surgeon.
I would get them in the loop. If you are lucky enough to have cut it early, you do not want to sit around and wait.
I’m in Denver and the surgeons here said there’s no way my mom’s tumor was operable, but Parek’s office was ‘I can totally get that out.’ Ultimately too much time passed and the cancer spread and he wasn’t able to do it.
The GI and IR doctors are about figuring out ways to ‘reroute the plumbing’ around the tumor. You want it out, so they are very secondary to that mission. Don’t get sidetracked.
You need to lower the elevated bilirubin but me, I would take the simplest solution for that problem to that right now. Until you have a definitive answer about surgery, from multiple surgeons.
What if there’s a minor/major complication from one of the the GI procedures? Best case, it costs you time. Time that you don’t want to spend on that. Good luck.
Joe
Jan,
Going home will be good, but it won’t be a huge celebration either. The absence of having nurse/doctor come by every 2 hours to check vitals will be nice. At times I sat guard outside to say “Papers, please. You’re here for something completely unnecessary? Come back later.” Not having that stress is good, but its replaced with sitting around.
I’ve come to believe that the stent in the duodenum prevented by mother from having this very violent vomiting end, which I’m thankful for. It wasn’t like she had this peaceful, beautiful passing but it wasn’t panicky or super intense.
Becareful on the pushing your mother to do things. I don’t think we understand how they feel or how weak they are. She’s probably not eating much and she’s on medication, so where does the energy come from to do anything?
Good luck,
Joe
Jennifer,
I’m sorry. That really sucks, to think you caught it early only to find out it spread anyways.
My mother had this cancer for almost a year and a half before I understand why this one is particularly bad as compared to other cancers. One of my mother’s IR doctors explained to me that this cancer’s consistency is different. He said to not think of it as a lump or a mass, but think of it (and this is my analogy of what he said) as a rusty pipe where the cancer is the rust growing up the pipe. The ‘rust’ gets brittle and flakes off, which is why it spreads so easily.
If your mom is not eating much and she’s on pain medicine, so she’s going to sleep a ton. So much of being around someone very sick is listening to and saying platitudes. “You should eat”, “You should get up and move around”, “You should…” fill in the blank. It almost gets comical at a point.
If your mother regains consciousness, do her and yourself a favor and don’t be that person. You don’t need to spout poetry, just don’t try and put an end to uncomfortable silences or situations because you can’t.
There are good books on dealing with dying that might help. If I could remember the name of the one I read I’d tell you, but it gave some insight and strategies.
Good luck,
Joe
Juliet,
The best thing I read on your post was that you were only one month in but had already completed surgery and you are on to the next thing, so there was no screwing around. Frankly, that’s how I describe this cancer to people, I tell them “it’s a no F@$# around cancer.”
I don’t think you really have time to think. You almost have to have a plan for this cancer before you ever get it. Which really sucks, especially when you’re someone like my mother, who had never been sick a day in her life – you need time to process it all, but you don’t have it.
So your mother hit it hard, quickly, which from my point of view probably gives her the best chance.
Joe
Following these suggestions may go a long way toward helping you and your family with your financial future:
1. Tackle the legal aspects. Having up-to-date legal documents is crucial for making things go more smoothly for survivors and ensuring wishes are honored.
2. Leave instructions about your wishes. There’s another important document you should create — one that doesn’t require an attorney. It’s called a letter of instruction, and it helps your survivors with many of the details that aren’t covered in your will.
3. Consolidate your money. You can dramatically simplify things for yourself and your survivors by consolidating these accounts with one financial services provider.
4. Take a fresh look at your investments. Because of your illness, you may want to consider taking a more conservative approach to minimize volatility, or you may want to reevaluate your portfolio with a financial professional to help you be prepared for future expenses.
5. Review your beneficiaries. Life insurance policies, annuities, IRAs and employer retirement plans all allow you to name beneficiaries who will inherit these accounts.
6. Check your eligibility for government benefits. Depending on the nature of your illness, you may qualify for assistance from Social Security, Medicare or Medicaid.
7. Find out if you can take an advance on your life insurance. If you’re anticipating financial hardship during your illness, find out if your life insurance plans have accelerated benefits provisions allowing the terminally ill to tap a portion of their policy’s death benefit while they’re still living.
8. Ask for advice.
My mother complained about acid reflux off and on at times. I’m assuming you had an ERCP, and those always did a number her for the first 12 to 24 hours.
One of the gruff GI doctors who did one of the procedures real stressed to me that it may not seem like it but an ERCP is a major procedure and was very hard on her. So that’s what I would say, your body was pretty severely messed with, so its probably pissed off and letting you know it.
