Topic: Second Opinion, Worse News

Hi Everyone:

Was diagnosed with CC last month. Remain asymptomatic -- not uncommon with the intrahepatic kind. Liver fuctions fine; Ca19-9 elevated mildly.  I am 42 years old.

Tumor is in awful place -- just where veins/arteries/vena cava enter liver. Also there is lymph node enlargement. 

Surgeon I first saw planning radical resection next month -- said it would be very difficult (on him and me) but felt there was good potential to get tumor and achieve margins.

Second opinion doc says the thing seems unresectable to him -- that the surgery could kill me or leave me greatly and permanently debilitated or worse.

Second opinion doc suggests course of chemo to see if we can get tumor to not only shrink but also hope that it shrinks in a certain direction, that is, away from veins/arteries. Obviously not a whole lot of hope that that plan succeeds. If it did work, then he suggests resection.

Third option of course, is to do absolutely nothing, and hope that the tumor continues its very slow growth pattern, giving me a few good years (months, maybe) until I get "sick."

So the million dollar question -- what would others do?

Strength,
Irene

Re: Second Opinion, Worse News

Irene, I feel for you.  It is a terrible disease and a difficult decision to make.  My father has a Klatskin tumor which I believe is extrahepatic.  In our case if we could have had surgery we would have taken the opportunity...I believe.  It was never an option so never had to evaluate the risks. 
From what I've read on this site, surgery is usually the goal because it gives more time.
More people I'm sure will add their thoughts.  I pray that you make the right decision.

Re: Second Opinion, Worse News

Irene,
It is all such a personal decision. I dont know what advice to give but I do know that you will make the decision that is right for you. You need to decide what is important to you and where your priorities are and how much you want to fight. Those are things we cannot help you with. But that said, we will give you are personal experiences. I had surgery and I am very happy I did. But no matter what you decided, there is someone here who most likely had a similar experience and will give you the heads up and support you need.

Best of luck making these hard decisions.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Second Opinion, Worse News

Irene,

I can totally sympathize--when you are having no symptoms and feel fine, it seems so unreal, and that makes it even harder to make decisions. My first time around, after the first tests and scans found something drastically wrong but couldn't pinpoint it, I actually blew it off for four whole months until my PCP implored me to go back for a biopsy. Even then, nothing felt "real" until I finally started itching unbearably.

I had surgery and never regretted it. Yes, I felt like I'd been driven over by a semi truck afterwards, but it got me almost three years of cancer-free life, and I enjoyed every minute of every day. I had a recurrence and the tumors are progressing again after radiation, but without the surgery I never would have gotten this far.

And keep in mind that you are a lot younger and probably a lot stronger than many people who get CC.

Not meaning to influence your decision, but these are some things to think about.

Wishing you peace, hope, and healing--

Kristin

Peace, hope, and healing to all!

Re: Second Opinion, Worse News

Irene,

I made the decision to have surgery after radiation and chemotherapy.  The CT scan showed that the tumor had shrunk enough to try after 6 months of therapy. 

The attempted resection failed because of IVC involvement.  Sounds like my tumor is in the same approximate place that yours is.

I'm about your age -45- and recovered quickly after surgery.  I was back at work after only 3 1/2 weeks.

Would it be possible for you to wait a little bit and see if more chemo can shrink the tumor before attempting resection?

I'm continuing chemo with Gemzar/Xeloda.  My last scan showed a slight shrinkage and no lymph node involvement as yet. 

So maybe wait and see while continuing treatment could be an option for you?

Re: Second Opinion, Worse News

Boy Irene...strength!  Isn't that the key word?  I just got back from City of Hope today after a consultation from a radiation oncologist.  Resection at this time is not possible for me and may never be.  After listening to him about the Sirtex microspheres treatment, I decided I would go with the Gemzar/Xeloda chemotherapy and pray it shrinks my tumor enough that a resection might be possible in the future.  I have a very large tumor, but I would have been able to have it resected if they hadn't found sirrhosis caused by a genetic predisposition or NASH.  If a chemo cocktail could shrink your tumor, then resection is the gold standard.  It's what everyone prays for, and you are young and strong!!!!  Also the chemo, I would think, is helping the cancer not to spread.  I've only been to City of Hope and have seen my own oncologist, an oncologist liver surgeon and now this radiation oncologist.  I decided if they can shrink the tumor, I'm going to check out Stanford for a surgical second opinion.  Keep plugging away, Irene.  The people on this website keep me going.  Every time I get down and decide there isn't anything left for me to do,  someone says something that makes me try again.  My chemo treatment starts a week from tomorrow so I'm going to visit my niece in Truckee tomorrow for a little vacation before I start the treatment. 

My prayers and best wishes for you,
Sophie

Re: Second Opinion, Worse News

Hi Sophie (and others):

I can't tell you how much I appreciate the wisdom and support I've found here.

Sophie, your story has many similarities to mine and I have followed your posts closely. This thing just brings heartbreak after heartbreak, doesn't it?

I know strength is the key here. And hope.  Some days it is so hard to muster.

Thank you all -- and strength.

Irene

Re: Second Opinion, Worse News

Hi Irene,
   I am writing from a hospital room in UPMC Montefiore Hospital. My husband - Butch - had a resection last Wednesday , done by Dr. Gamblin. Took out 3/4 of his liver - an 8.3 centimeter tumer on the right, small tumor on the right. It had metatasized to the diaphragm, so Mayo had closed him back up again. He is terribly weak, and has had two infections, but he thought it was the way to go and - he is recovering very slowly (he is 66 years old).  I think we are leaving the hospital tomorrow. Even though this was the scariest thing we have ever been through (12 1/2 hurs of surgery), it is what he wanted, and he considered it as a fighting chance. He was in good shape when we got here - now - not so much! But - we talked the other day - and we are going by what John Wayne said -

"Courage is being scared to death but saddling up anyway."

You must make the decision that is right for you. I think each decision made by anyone of this board takes great courage, and they continue to amke them each day.

Joyce