Topic: my upcoming surgery!

Hi everyone:

I got some great (and scary) news from Dr. Fong (my surgeon) today. He called and talked to me so I don't have to go into NY on Monday.
Here's the scoop: he's "pretty sure" he can perform the surgery now. If the tumor is still too dangerous to remove completely he's "pretty sure" he can burn it or electrocute it and kill the cancer cells. That means the big surgery. He says it's up to me how aggressive I want to be. But he can't say how clean my margins will be if I have the surgery now.
I told him the chance of recurrence is high enough. I want him to be "confident" that he can get it all and give me clean margins. Since I have an appt. with Dr. Kemeny (my onc) on the 1st hopefully he can talk her into giving me another chemo even though I have the sac of fluid in my abdomen. If she agrees, hopefully the tumor will shrink ANOTHER .5 cm and Dr. Fong can be "confident" he can remove the whole tumor.
He says he never says he CAN because Hubris is a sin. And if he's too confident, God will laugh at him. And I don't want to be the patient on the table when God decides to prove him wrong. So I want to be aggressive but I also want to be smart about it. If it's still wrapped around the vena cava too much, that's too dangerous and I might not get clean margins. So although I want the surgery (GULP) I also want clean margins.
Hopefully I'm making the right choice. He seemed happy with my decision, so I'm pretty "confident" that I am! I know I need the surgery, and a lot of people on here say to get it out as soon as possible but I have the vena cava to worry about and I want clean margins more than I want quick surgery.
Also, my parents will come up to PA to help me when I have surgery, but I don't want them worrying about snow if possible.
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: my upcoming surgery!

Kris, I just love you! I love the way you rationalize and figure things out and I probably would do the same thing you have decided to do. When you mentioned the Surgeon not wanting God to laugh at him, it reminded me that Teddy would pray for God to come through the Surgeon's hands. I have a feeling that it is all going to work out, it has to work out with your wonderful attitude. I just bet that you are one of those rare people who walks in to a room and it just lights up! I will be most anxious to hear more updates! Hang in, be strong!

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: my upcoming surgery!

Thanks Lainy. I, too, pray every night (and fall asleep during them because they've gotten so long!). I pray for a long list of people and I ask God to keep me in his white light and to give my oncologist and surgeon the wisdom and skill to get me thru this. I also ask him to let me live to 60 as a "healthy" person! (I'm 48). I want to be a decade survivor.
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: my upcoming surgery!

Kris,

How wonderful your tumor is shrinking enough to discuss surgery!!  I'm sure it was not an easy decision but I think you made a wise one.  I would think clean margins would be important.  Don't worry.  When you get the surgery it will not be as bad as you think.
Just some friendly advice...when I had surgery I had very little pain and it was much easier than I thought it would be.  I am 32, which I'm sure helped but I was also in excellent shape and had really strong abdominal muscles.  I don't know what you're feeling like or what your activity restrictions are, but maybe it would be worth it to discuss exercise with your Dr?
I think Pilates helped me so much and made surgery so much easier. You need those stomach muscles to help you move around after surgery.
Just a thought.

Best wishes and I look forward to hearing more good news from you!

Susie

Re: my upcoming surgery!

Thanks Susie:
I have had 1 surgery already, so I know what to expect (unfortunately, I haven't really forgotten). My activity restrictions are mostly due to that surgery. I don't have quite the stamina I had, so I get tired a little easier. But I used to go nonstop, so I'm only slightly "slower" than a normal person I guess. Weight lifting is out, but I did buy 4lb. weights to use to try to tone my arms a little so I can lift myself up. I won't be able to use my stomach muscles for 4 weeks, if I remember correctly.
I dance 2x a week. It's a lot like a 3 hour aerobics class in 20 minute increments. I usually take a break every few songs. Depends on what the dj plays. tongue
Thanks for the input! I like cheerleaders in my corner!

Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

6 (edited by Jim Wilde Thu, 19 Jan 2012 19:36:48)

Re: my upcoming surgery!

Kris, this might be a good time to seek one more opinion.  You know I'm a Dr Kato proponent, and I can tell you he will give you an honest no BS opinion.  I don't think any surgeon can promise you clean margins, but I can tell you Dr Kato takes on some very challenging cases.  And he inspires confidence, without being pompous or arrogant.  In fact, he declines to wear the white lab coats most doctors wear, because he feels it intimidates his peers and patients.

I'm so pleased that you've gotten to this point, after a lot of struggles with the pump, illness, etc.  Even though a resection is a BIG surgery (mine went about 12 hours), the mortality isn't very high and the recuperation not so bad.  I had a complication of incision infections, which took over a year to completely knock down because of adjuvent chemo right after surgery.

The really great thing now is you have some pretty palatable choices ahead.  A year ago this time was just a distant hope!

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: my upcoming surgery!

This is great news Kris!  I will continue to pray for you daily!

Re: my upcoming surgery!

Kris. Surgery is good. I have had two resections with Dr. John Fung at the Cleveland Clinic and they were fine. Don't let anyone scare you. I will pray for you. if you have any questions please feel free to cal me...330-903-;6868.   Lisa

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: my upcoming surgery!

Dear Kris,

I am so happy for you. You are such a strong and courageous woman. I wish you all the best with your surgery and hoping for clean margins. You are always in my prayers.

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: my upcoming surgery!

Thanks everyone. I know I need the surgery but it's scary...
And Jim, I really like Dr. Fong. I know you are a huge Dr. Kato fan, and if Dr. Fong had told me he still can't do the surgery, I would probably go see Dr. Kato. But Dr. Fong put me at ease the first time I met him. He takes the time to draw (not very well, but...) so I can understand what he's saying. And he's a "real" person. I loved his hubris comment today.
The problem with the tumor is it's wrapped at least partially (still) around the vena cava. And he doesn't want to rip that. He never says he can promise perfection because he doesn't want to tempt God to prove him wrong. I believe he is a highly skilled surgeon (he ought to be: he has people coming in from around the world) and that he can do the best for me. I believe Dr. Kato could do a successful resection, too, but I know he does much more difficult surgeries, too, and is famous for that. And he needs to worry about people that can't be helped by the normal skilled surgeons.
I like Dr Fong, I like his sense of humor. We were joking about his daughters today on the phone. I like that he takes the time to talk to me when I need it. And he explains in language I can understand. He uses big medical words sometimes, and I usually understand what he's saying, but if I don't, he explains it. He makes me feel comfortable with having him as my surgeon.
And he said he could do the surgery now, but since the tumor has been shrinking all this time, I want to try to get it a little smaller so I have a better chance at clean margins. He agreed without hesitation, so I think I'm making the right decision!
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: my upcoming surgery!

Kris, you HAVE made the right decision and that is evident in your security of being with Dr. Fong. I feel like a Cheerleader with, "Ya can't go wrong with Dr. Fong!" Sorry. We can't keep wondering as it just uses up good energy. Ha, ha I remember also when Teddy's Surgeon drew a picture. Wish I had saved it, modern art for sure!!!! Hang in there, girl!

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: my upcoming surgery!

Kris, you have to go with what you're comfortable with.  I thought I detected more unease than's apparently there.  Good luck.

Jim
Hospitals/Doctors Link,  Our Experiences:  http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3126  See page 4 of thread for Dr. Tomoaki Kato info.
Major USA Cancer Centers:  http://www.cholangiocarcinoma.org/majorcancercenters.htm

Re: my upcoming surgery!

Another note about after the surgery. I know I am jumping ahead, but I need to think about life after the surgery.
Since the tumor will be gone the pump will no longer lead to anything so it will be filled with glycerine and changed every 6 weeks. I don't think I want it removed because of the following sentences...
I was on a Gem/Ox cocktail but the oxaliplatin got too much for my system. My feet buzz and burn from the neuropathy (not complaining). This means they can't give me oxaliplatin. And if anyone wants to know, I believe it was the ox part of the cocktail that started kicking my tumor's butt. I also believe it was the FUDR in the pump that moved it along at a faster rate eventually.
So, does anyone know if Gemzar alone does any good? I think, since I'm pretty sure I won't have clean margins, that I need to fight with chemo after the resection. And before you yell at me: the tumor is still attached to the Vena Cava. That means Dr. Fong probably cannot remove the entire tumor. He will either cauterize or electrocute any cells he can't remove. I'm HOPING with all my heart/will/mind that he kills it all and gives me pretty clean margins. BUT I need to be realistic and think ahead to chemo.
I believe cisplatin has the same effects as oxy does, and may be too closely related for me to use? I will be asking Dr. Kemeny on the 1st but want to be prepared if i can get any input from others that have heard, read, or been thru this.
Now, back to the pump. The reason I don't want it removed is once it is taken out it can't be put back in. I need to talk to Dr. Fong about this, but I guess (after talking to someone else with the pump) he could re-route it if the cc returns as a single tumor again... that's why I want to keep it. I didn't do part of my systemic chemo well, so I'm worried about needing systemic chemo again. And keeping the pump in is a small price to pay to stay alive, as far as I'm concerned.
I hope someone can give me advice on Gemzar only or the differences between Cis and Oxy and whether I could change to Cis if needed.

Thanks,
Kris

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: my upcoming surgery!

Kris,

When my oncologist presented my chemo options to me, she said we would do 2 agents.  It wasn't discussed to do Gemzar alone.  She said it was between Gem/Cis and Gem/Ox.  I asked which she would recommend and she recommended the Gem/Cis because she told me Ox causes more neuropathy.   So that leads me to believe the Cisplatin might not cause as much numbness/tingling so maybe will be an option for you.
Everyone is different, but I handle this combo very well with only side effects being low white blood cells.
I will be curious to hear what your surgeon says about the pump, keep us posted.
Best wishes!

Susie

Re: my upcoming surgery!

Kris, Sorry, I can't help with this but wanted you to know I think about you every day! You WILL make the right decision when the time comes.

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: my upcoming surgery!

Kris:
The first chemo I was on was Gemzar only.  And it didn't touch my tumors.

Re: my upcoming surgery!

I´ve tried both combos and Cisplatin is NOTHING compared to Oxaliplatin!! No cold-numbness for ex. Cis is more toxic to the kidneys though.I haven´t had Cis long enough to get the neuropathy. The one I got from Oxaliplatin (13 cycles) has disappeard.
I´m sure it´s going to be just fine however you chose to do!
Maria

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: my upcoming surgery!

Thanks Maria. I appreciate the input from everyone! Next week I can talk to the oncologist and fnd out what the plan might be.

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.