?? Anyone with successful RFA? Mali or Dana

[Dot]

Hello my friends;

Well, today we met with the surgical oncologist. He told us that Bob could not have a liver resection. There are 3 "spots" on the liver, each one in a different area, so getting a liver resection is not possible. They would just be cutting the liver in thirds and there would be nothing left.

He did say that he would do a RFA, radio frequency abalation. As it was explained to us they would do surgery just as if they would be doing a liver resection but instead they would use an instrument that would perform the RFA. High radio frequency waves are used to produce heat and ablate, or slowly burn away at the cancer tissue. They would also do a ultrasound directly on the liver during surgery. Said this was more accurate that the CT scan.

Anyway, he explained that the "statistics" say it is only half as effective as a liver resection. More than likely there will be more chemo after surgery.

Also, he said that since there originally was a "nodule" on top of the small intestine (duodenum) that was removed during the initial surgery this has cut Bob's chances by another 10 - 20%. Basically, he said Bob has a 20% chance of survival. But he said that 20% is better than 0%.

He said that this was because the disease was very advanced. Damm It!
I am so angry that they did not do the colonoscopy when he first had symptoms in March. Not wait until Oct when there was a blockage. Even after they found out he had cancer, his primary doctor just said, "Wow, I never would think someone under age 50 would be in stage IV .

I really want to just hit something or want to scream "Now what do you think!"

They are scheduling surgery for July 7th or so. Need to wait until the Avastin is out of his system.

Also, we were told that if when the surgery starts the surgeon will look around and if he finds anything, then they will just close him up.

Bob is having a tough time today with all of this. He said that the way he deals with it between chemo treatments is to just "ignore" it. But he admitted that he is an emotional wreck.

By job today, it to be the strong one, to keep him pumped up that this can be beat.

I too have read that radio frequency abalations are not as successful as a resection. What experiences has anyone had with this?

I am trying to stay hopeful. Please keep us in your prayers.

Dot

[Mali]

I don't understand Dot. I've just written you another message under 'Update on Bob' congratulating you on the fact he could have a resection. Maybe I misread your post. I am in a state so please excuse me if I cocked up.

I was under the understanding that he could go ahead with a resection. And I'm dreadfully sorry to now read that actually he can't.

I acknowledge exactly the way you must be feeling and I also feel horrified for you. I can completely understand the questions of 'why didn't they do something before.' It is frightening that some experts lack of response can have such awful implications on another person's life.

Dot, I don't have information on RFA. It is only a thought I had for my Mum and she was not viable for it. I hope to God that Bob can get through this and that it will be successful for him.

You are absolutely right, you are at the moment, the one who has to be strong for him. And your role will carry you through this on a day to day basis. We are doing just this for Mum.

I'm confused, and shocked. If it must be RFA for Bob then I wish that it will do him well.

Keep talking to us, keep updating us. Remember, we are thinking of you and Bob. Keep strong for yourself and Bob, and use us to vent your frustrations and any concerns. You never know, when you have time, you may wish to think about asking the original doctor to rethink his practice in light of what is happening to Bob, but for now, you will need all your energies for him.

Will be in touch soon.

Good luck
Mali.

[Holly]

Dot,

I have read your post and can appreciate your frustration. I do not know where you live but my most immediate thought for Bob would be get a second or third or fourth opinion. Opinions are much like...well I will let you fill in that blank. But remember this, the surgeon that you saw made a clinical decision based on his or her experience. Bob and you must know that he (BOB) only requires 20% of his liver to function. Dot, I have a medical team in three cities in this country. After 18 months of symptoms and seeing my primary care physician and number of his partners it was only after an emergency room visit I was diagnosed with stage IV crc with met to my liver. Through this journey, a couple of the lessons I have taken with me are second and third opinions are sometimes necessary and not to put all of my eggs in one health system's basket per say. Bless you for being a caring wife and caretaker. Two young women recently asked me to define the following sentence "Patients need to be more proactive in the management of their health." I fumbled rather ungracefully through my explaination. When I say this I mean, gone are the days that physicians treat an entire family and make housecalls on the weekends. Gone are the days that physicians have the luxury of time or will to know everything about you your family. We as patients need to accept responsibility for our 50% of the established and satisfactory partnership. It is our responsiblility to be resourceful, ask questions and demand answers. If we are not satisfied than it is our responsibility to find a second or third or fourth opinion until we are completely satisfied. Based on your post, you seem to have many unanswered questions. May I also add...Dot, you must not dwell on the stastics. Those stastics were written prior to Bob's dx and realistically do not apply. I was dx with stage IV and not expected to live past December 2003. Dot, I will always be a member of the stage IV club but to date I do not have evidence of disease. This has to be my longest post but I hope that after reading it in its entirety that you will take this with you...ALL THINGS ARE TRULY POSSIBLE.

Hugs!

Holly

[Becca]

Hi Dot! I had successful RFA recently... March 17th. Happy St Paddy's Day, eh??? I was supposed to have resection surgery but during the proceedure my Dr. felt that I would lose too much blood if he did the resection. He was VERY happy with the results. I had a CT scan a few weeks ago & every thing is looking good. I started out with 3 lesions on my liver. The chemo reduced them in size, eliminating one totally. My surgeon explained all the statistics to me as well. I was fortunate because my lesions were small & close together on the right lobe of my liver. From what I understand, bleeding is a BIG concern when doing a resection. That may be part of the reason the Dr. wants to use RFA. I agree with Holly on getting another opinion. You should get all the info you can. Best of luck to you...you & Bob are in my thoughts & prayers.
~Becca

[Guest]

Dot,
I had resection and rfa aug 12 2005. I had 8 tumors in liver . they cut out 3 and rfa 5. the 5 where more in the middle and not resectable. I have no evidence of disease since surgery.
I was told rfa was 95 percent effective?
Good luck, I thought it was easier the colon surgery
Anita

[Dana, Italy]

Dot,

I read your post a few days ago but couldn't answer immediately. I am confused. I thought all was going okay and now your news has touched me. I am not very informed on RFA in the sense that I have read a lot about it but never really spoke to doctors as all said my mother was not suitable. I met a lady in a hospital in Rome who told me about her relative who had jad a RFA 2 years previously and was doing extremely well. This is when I gave up looking into it as I realised my mum's condition was to severe.

I'm sorry I can't help. All I can do is carry on praying for Bob and for you. I embrace you strong. I know how hard it is for you but to be honest I'd prefer to be back in there and not feel this emptiness.
Carry on trying asking and hoping....

A huge hug
Dana
(it's me but can't log in from this computer)