Topic: Surgery or no surgery - what to do?

Hello all, today we have been faced with a second opinion about surgery, which has thrown us completely off course.

In brief, my mum has ICC. It's a very large tumour and we currently have a surgeon who is lovely, very unassuming, with a great reputation, who says that he can take it out. To do this he wants to use a new technique called ALPPS, where they do the surgery in two halves, and wait for the liver to regenerate after the first op, before performing the second.

Today my mum was called in for a consultation with a second surgeon, who was very pushy, and said that 'she may as well choose her funeral songs' if she decides to go ahead with the surgery. He said that she would almost certainly die during the surgery as the liver may not regenerate, and if this happened, there wouldn't be enough liver left to sustain life. He has suggested SIRT instead, but didn't say particularly positive things about that either.

Now my mum feels very confused, and upset. She isn't sure who to believe. We don't really want to bring in a third surgeon to add in another opinion as it just seems to make her feel worse and more confused. I had heard that sometimes the liver doesn't regenerate but my understanding is that it is pretty uncommon? We feel at a bit of a loss and very deflated.

Any thoughts or advice would be greatly appreciated.

Jules

Re: Surgery or no surgery - what to do?

OMGoodness, Jules. Well, guess the only thing I can say is I WOULD seek a 3rd opinion to see if that OMC goes along with one or the other of the first 2. He may not have a 3rd opinion but would side with one of the others. I certainly am not impressed with the way the 2nd ONC talked to you. Somewhere in the back of my mind I think someone else had this done very successfully. Go to our search button and type in ALPPS and see if any posts come up. Also Google it for information and perhaps in a little while someone will come forward on this. Remember, the decision you make is the right one!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Surgery or no surgery - what to do?

Thanks Lainy, I thought that you may say that smile Unfortunately I wasn't able to be in the appointment with my mum today but I was shocked by some of the things he said to her. Along with the funeral comment, he told her that her liver was a 'shot to pieces'. I work with patients in my job too, and i'd never speak to people in this way. Luckily my mum is a tough cookie, so she takes it in her stride, but a lot of people would be really damaged by these insensitive comments. Arrrrrrrgh, I feel a rant coming on but I will resist!

We love surgeon number one, not just because he thinks that surgery is possible, but because he treats my mum like a human being and even if he's delivering bad news, he does so with so much respect.

Re: Surgery or no surgery - what to do?

Dear Jules, ok, I was curious so I first entered ALPPS in our search system and sure enough Percy had it listed with some info at the bottom of that thread. Then I googled it and really it is very interesting. I read everything in Google and only 1 article said anything about the danger of it. A question I always used to ask before Teddy would have a procedure was, "Would you have your Dad do this?" Another you might ask the 1st surgeon what is his success ratio with this surgery. Last but not least you do know me too well!!! You knew I would get angry about ONC #2. Haha Guess I am really a window as everyone sees right through me!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Surgery or no surgery - what to do?

Hi Jules,

I think the surgery you are speaking about is the same surgery Lauren had. We were told up front that it was very radical. Her surgeon said he went to a conference and talked to many top liver surgeons and the room was split as to whether they would do it or not. Lauren chose to have the surgery and have a chance at a normal life. The second surgeon you saw obviously was from the side of the room that wouldn't do it. The only person that knows if it is right for them and wants to go for it is the patient. After going through this with Lauren, I'm not sure another opinion would do anything but make you more confused. I think you have to go with your gut instinct and like Lauren's surgeon said, "If you are in, you are all in. There is no room for doubt."  We asked him if it were his daughter, would he want her to have the surgery and he said yes. Sending prayers that your Mum finds the directon she wants to take.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Surgery or no surgery - what to do?

Jules -
It drives me nuts when docs act like that (the second doc). There is no reason for that at all, EVER. I am not normally a terribly violent person but I want to slap them upside the head (I am a nurse so I run into them periodically). We knew going into my husband's surgery (not the ALPPS but a regular resection). He said there was an elevated chance he could die from the surgery but he said there a 100% chance he would die by not having the surgery (I am not sure now that it was a 100% chance given those hear who are still here) but we opted for the surgery then chemo for what we hoped was the best chance. After a 14 hour surgery I wondered at times.

I would go for a third opinion.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Surgery or no surgery - what to do?

When I was reading your post, the first thing that came to my mind was Lauren. I thought it sounded like her surgery. I agree with Pam that another opinion would probably just confuse you and your mum. I also agree that you may have to go with your gut. My thoughts and prayers are with you both.

Re: Surgery or no surgery - what to do?

Jules...Today we attended a presentation of this type of surgery.  It was performed by a Japanese surgeon.  No consensus from the surgeons attending, but also no outright opposition.  I would think that you would find someone believing in this radical surgery and someone who does not.

As far as I remember, you have consulted with Prof. Lodge.  The other aggressive surgeon I know of in the UK is
Prof. Brian Davidson
University Department of Surgery,
The Royal Free Hospital, Pond Street, London, NW3 2QG

E mail: b.davidson[at]medsch.ucl.ac.uk
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Surgery or no surgery - what to do?

Hi Jules oh what a tough decision.  As I think only you all can make this decision and do what you feel is best.  I personally would go for a third opinion.  Personally, I would also report that doctor to someone as I think that is totally out of line and uncalled for it makes me outraged that that is how he responded.  He could have used many different words or phrases to get his opinion and views across.   Please keep us posted and blessing and best wished to you guys.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Surgery or no surgery - what to do?

Hello all,

Sorry for a bit of a delayed reply and thank you so much for all of your thoughts. We have deliberated and the current plan is to just wait for my Mum to have her next PET and MRI (mid Feb), then both surgeons are going to look at the scans and battle out the question of surgery amongst themselves. I think that my Mum wanted to avoid getting a third opinion as she’d like a little break from it all - it does get so confusing. Pam, I think it is the same op as Lauren had. I guess with such big surgery and also it being relatively new, there are going to be big differences in opinions. Like Lauren, my Mum would likely opt for a chance of a normal life, so I think she’d give it a shot if the surgeons give her the go-ahead!

If surgery is not an option then the next step is apparently SIRT. We’ve been looking into IMRT and TACE too, but not sure if these are available in the UK for Cholangiocarcinoma. I’ve tried to have a think about which treatment would be most appropriate for Mum but it does get very confusing and the research varies so much. If anyone has any opinions on these treatments then please do pass on your thoughts.

Also, Porter, am I right in thinking that your surgery is next Monday (27th)? If so, good luck. I will be thinking of you and sending loads of prayers your way.

Jules