HCC and Resection

stones · New User Joined: 06 Jan 2006 Posts: 7

Hi

I have just joined this forum and have a life and death dilemma.

I have HCC primary and for the past year or so have been getting chemo embolisation to which there has been no growth.

My Dr has now said I can have a resection as it appears stable and also the main hepatic artery has been damaged and I can no longer receive direct chemo.

They did a wedge pressure study on my portal vein and the result was 13 (whatevers) which a result of < 10 is good and >15 no surgery.

They tell me the risks from surgery after removing 55% of my right lobe will be 5% chance of organ failure post-op or within a week and another 15% chance of a severe lowering of quality of life after.

They say if I don't get the resection I have all but zero chance of being alive in five years. However, if I choose to wait and enjoy life now, the onset of symptoms will mean no surgery will be offered.

At present I have had no symptoms of my HCC. My tumours number about 3 large (around 3cm) and a few satellites.

My question to this forum is what would you do given the choices I have outlined. I have 75% made up my mind which way I will go but am seeking unbiased opinions from anybody who would like to offer one.

My age is 49

Thanks in advance...

Stones

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Dear Stones,

This is a very very hard question to which only you should have an answer. It all depends on what you think about the surgery, how you feel now, the risks and the chances for recovery. My advice is to try to write everything down and see what factors you feel are most important to you.

best regards,
Dr Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

stones · New User Joined: 06 Jan 2006 Posts: 7

Thanks for the reply

Yes your're right its tough a decision. My Dr (surgeon) in this case perhaps is giving me the extreme worst scenario.

My worry is not necessarily for myself but I have a wife and 2 kindergarten age girls and I know my wife will struggle if I'm either incapacitated (sick all the time) or not there.

I guess I will probably rely on my prof after the tests to see his opinion, my surgeon says he is one of the top ten in the world hepo experts, so hopefully his judgement will be very sound.

Rgds
Stones

seage · Regular Joined: 19 Jan 2006 Posts: 20

Hello Stones,

This is my personal opinion on your situation: Go for the surgery.

True, there is risk that it may get worse if the resection doesn't go right, but at least you have a chance of getting rid of the cancer once and for all. And you would want that for the sake of yourself and your family.

You do NOT want a situation where the cancer has gotten to a state where no surgery is possible and all you can hope for is treatment that can at best, extend your life for a year or two. This is my current situation, btw, my primary liver cancer has spread to the lungs and there is no hope of a cure (at least according to current medical science).

I went for a resection in 2004 and althgh the week of recovery in the ward was bad, there were no complications after that. However, I did have a recurrence about a year later but this may not necassarily happen to you. So I would say go for it while you still have a chance. I have no regrets on my resection. True, it didn't work out but at least I tried while i had the chance.

But one more thing thgh, I have read of a phenomenon where removal of the original tumor can actually cause it to spread. Apparently, removal of the original tumor causes cancer cells that have spread to other organs to grow (they would otherwise remain dormant if the original tumor was there). This may be something you might want to ask both a surgeon and an oncologist.

I hope i haven't made you even more confused.

Good luck and keep us posted.

Just another cancer patient,
seage

stones · New User Joined: 06 Jan 2006 Posts: 7

Thanks for the reply seage.

Since I first posted my 1st cousin died from secondary cancer in his lung from a primary in his larynx. He only lived about 6 months after feeling a lump in his neck.

He was never given a surgical option as his cancer was so aggressive. That really made me wake up and think "I have that surgical option". If I don't take it and later down the track when I start getting sick I would be kicking myself all around the place because I passed up that opportunity.

Your reply part:
"But one more thing thgh, I have read of a phenomenon where removal of the original tumor can actually cause it to spread. Apparently, removal of the original tumor causes cancer cells that have spread to other organs to grow (they would otherwise remain dormant if the original tumor was there). This may be something you might want to ask both a surgeon and an oncologist."

I choose to ignore that if it is true as if they had spread already then they will not remain dormant forever anyway.

You say you had a reoccurence. How are you now, what happened. Did the resection prolong your life despite above.

Rgds
Stones

seage · Regular Joined: 19 Jan 2006 Posts: 20

Good to know you understood my main point. But I encourage you to get more medical opinion from different doctors of different disciplines. Not that certain doctors are not as good, just that doctors from different disciplines have knowledge from another viewpoint. It may help.

As for myself, I do believe that the resection helped coz I did have a good 9 months of being clinically cancer-free. But the recurrence came back with a vengence and since it has spread, I have no other options except chemo (and perhaps RFA). Even if the resection goes well for you, I do suggest you try something to prevent a recurrence. In this department, mainstream medical science probably can't help so you'll have to rely on nutrition or alternative therapies. One mistake i made was to believe that i had a good chance of being cured after my resection. I did not do much after my surgery, except for some lifestyle changes and when the recurrence came, I wondered if I could have done more.

I have been on a clinical trial of a new drug the past 3 months. It managed to stop the growth of the tumors but it seems to be growing again. Probably off to another chemo regimen for me, I guess.

I am 30 years old this year and broke up with my gf recently (whether the recurrent cancer was part of the reason, i'll never know). Without a surgical option, any treatment options seek only to prolong my life and I am not too sure for what reason since with I won't be able to have a career, relationship or my own family within such a timeframe. Still, I've decided to go down swinging just for the sake of it. And I hope you won't give up since you have so much to live for. Cool

cjago · Regular Joined: 14 Jan 2006 Posts: 42

And some more info you might want to collect, if you don't already have it:-

- is your cancer already metastatic outside your liver? If you don't know, would a PET scan tell you?

- have they given any details of what they mean by the "severe lowering of quality of life" risk? Could you still work (assuming you do)? Might you become an invalid totally dependent on your wife's care?

My personal opinion is I would try to work out which option gave the best chance of either several more years or more-or-less normal functioning, or a quick death, and go for that one, rather than the option that makes prolonged serious invalidity more likely. (I'm lucky, I haven't got to that decision point yet).

The best of luck with whatever you choose.
_________________
adenocarcinoma of the breast, now widely metastatic (stomach, liver, pelvis, pancreas, bones, skin)
survived 11 years so far

stones · New User Joined: 06 Jan 2006 Posts: 7

Thanks for the replies

I can't say that I'm in to any 'alternate' remedies. I have stopped drinking alcohol years ago. I eat pretty much normal everyday foods including some healthy chocolate.

My father, after having a heart attack went on some crazy diets trying to lower the intake of the nasties. It did him no good. In my opinion he lowered his quality of life by eating bland foods all the time.

I have been offered a double-blind trial already and will take it if I don't have the resection. At this stage I can no longer have proper chemo due to arterial damage from earlier chemo or angio intervention.

This is one of the main reasons I think that surgery has now been offered to me. No one has suggested PETScan to me. I know about it though.

I lost my job due to retrenchment back in '02. Had a 'holiday' from working as I had a few dollars saved and then the cancer diagnosis. Due to all the running around getting tests and scans and chemos etc and etc, I applied for a pension here in Australia and got it. It would have been difficult to a prospective employer to tell him/her that I would be absent a bit too much.

If I dont get surgery then my surgeon has said I ain't gunna be around > 5years. Thats my reality.

The 3-4 times I spent in hospital for a couple of nights whilst getting chemo-embo I saw what it was like to be 'liver-sick'. Fat tummy, skin and bones and no brain, and dont forget the jaundice. I don't want my kids or wife to see me that way if I can. I mean if a person was just in some sort of chronic pain and could just take a 'fix' to relieve that, that would be some alternative, but the symptoms of liver disease are rather unpleasant 'mentally' and physically like a fat lip.

Again thats for the replies. Its good to hear from people in similar situations.

Stones (not my real name)

seage · Regular Joined: 19 Jan 2006 Posts: 20

Hello Stones (are you indicating you have tumors in your body with this nickname? Smile

)

Which clinical trial has been offered to you? Just interested in any new drugs coming out.

Haven't you been doing lung and bone scans regularly? These are the organs HCC normally spreads to (mine are in the lungs now). If you haven't, you should take them to know the extent of your disease coz surgery probably won't help much if there's already metastases.

Finally, good luck to your surgery or whatever treatment you ultimately choose to undertake. Keep us posted and it'll be especially nice to know that at least one of us kicked the cancer's ass. Cool

cjago · Regular Joined: 14 Jan 2006 Posts: 42

seage echoed my thought about scans and metastases. At one point I was meant to be having a gastrectomy until they discovered I already had mets outside my stomach.

I just recently had a radiofrequency ablation for a liver tumour (a secondary in my case). Has this been mentioned to you? Maybe your disease is too widespread? Here's a useful site, just in case:-
http://www.clevelandclinic.org/general/rfa/rita.html

It's much less invasive than a resection would be - in my case, the aftereffects were basically only those of the general.

Also, just so you know, advanced liver disease doesn't necessarily affect your brain. My father died of liver failure earlier this year (alcohol, not cancer) and yes he had jaundice and ascites, but he was lucid right up until the end. I looked it up on the internet at the time, and nothing suggested he was spectacularly unusual in this. In fact, I think his death would have been very peaceful if they had been medicating his pain with something stronger than paracetmol (they weren't because he wasn't supposed to be terminal). Sorry if this sounds heartless, I found it quite comforting to me.

Let us know how you get on.
_________________
adenocarcinoma of the breast, now widely metastatic (stomach, liver, pelvis, pancreas, bones, skin)
survived 11 years so far

stones · New User Joined: 06 Jan 2006 Posts: 7

Hi again

The clinical trial drug is called Sorafenib. I think it was originally trialed for kidney patients.

I have now added to my list of questions to the prof for RFA and possible PETscan. They never have mentioned them. Perhaps they can tell from scans that it hasn't spread. I actually have a CD from my last CT and if you are interested I can upload a pic to my homepage.

I think the RFA is out in my case as I have a few satelites and because they can no longer get accurate CT/angio scans they wouldn't be able to do that (my sumation).

This Thursday I have a endoscopy to check for varices. My prof will then see me and he will probably give his opinion on ?surgery. He also has a recent ultrasound (not much chop there) and an MRI.

As far as the brain (possible side effects are concerned), you are right, there are all different symptoms to HCC. Those I mentioned I guess were the ones I DONT WANT.

Stones has nothing to do with cancer although coincidentally I've already had my gall bladder removed.

Hey, what do you reckon they put in place of 55% of my liver if they remove it.

GL
Stones

seage · Regular Joined: 19 Jan 2006 Posts: 20

Ah, sorafenib. Yes, it's at the top of my list for promising new chemo drugs to try but unfortunately, they don't plan to to start the trials here in Malaysia or Singapore.

From what I found on the net, sorafenib is now in Phase 3 trials and in case you are not aware, you have a possibility of getting a placebo since phase 3 trials are randomized double-blind.

I know of 2 trials of sorafenib:
a) http://clinicaltrials.gov/show/NCT00108953 - A Research Study to Treat Patients With Advanced Hepatocellular Carcinoma (doxorubicin plus sorafenib versus doxorubicin plus placebo)
b) http://clinicaltrials.gov/show/NCT00105443 - A Research Study to Treat Patients With Advanced Hepatocellular Carcinoma (sorafenib versus placebo)

Obviously, trial (a) would be much better because (1) even if you are on the control group, at least you'll be on doxorubicin (one of the few standard liver cancer chemo drugs) instead of nothing at all. And (2) from what I've read, chemo usually have better response rates when they are used in combination rather than by itself.

So if you do go on the trial (or does so in the future), do check out the details of it. Oh and do me a favor if it's convenient: Ask your doctor if he can think of any way for me to get on the trial from Malaysia or Singapore. The pharmeceutical company's representative here in Malaysia has already said no but I thought if you can ask from your side and see if there's another way. But if you don't feel comfortable in asking for whatever reason at all, it is fine too. No worries. Cool

As for RFA, it slipped my mind to mention it to you and it is great that cjago caught the detail. From what I've read, RFA is much less invasive and you'll probably be out in a day or two (versus a week for surgery and a week can be quite long when you're in the ward). However, the stats for resection is a bit better than RFA, especially when you aim for a cure. So if a cure is what the surgery is aiming for, I'd say go for that.

Finally, if you do decide on going for surgery, let me know. I can share with you some of my experience so you can know a bit of what to expect - although if you've been through other types of surgery, it's pretty much the same I think.

What to put in place with your resected liver? I don't know about you but I had my surgeons put in a "No tumors allowed - Trespassers shall be shot on sight" sign but it doesn't seem to be working very well. 8p

paulsdaughter · Regular Joined: 26 Feb 2006 Posts: 14

Hi Stones,

It is a very difficult decision and one that only you could make. But since ya asked..LOL. I would definitely go for the resection. It's really the only option that is curative besides a transplant. Do you have underlying cirrhosis? My dad had a resection in March 2005. He however, had underlying cirrhosis and his doctor really couldn't take enough of his liver to get all the cancer. He was trying to give him the best shot, but it turned out his tumor did not have very well defined margins and there was some microscopic spread. His recovery went very well. He had the surgery on Wed. & was home on Sat. His doctor was amazed that he recovered so well & was back at work within a few days of that. My mom had to drive him around, but he was feeling pretty good. I hope that whatever option you choose works out for you and your family. Good luck

Paul's daughter,
Jen

stones · New User Joined: 06 Jan 2006 Posts: 7

I'm back..

Had surgery 20th March and I am here to say it went really badly, but I am alive for an indeterminite time now.

So what went wrong. They were aiming to get the right 55% of my liver. Although I was told slightly differently, I suspect the following occured during surgery.

In Australia if you are not in private health insurance you get a trainee with backup from fully qualified surgeon who is scrubbed and hanging around theatres supervising 2-3 ops.

Access difficult, I think when trainee trying to get access he nicks a vessel, I am fully aware that even the most competent could do this too. Thats why there is standby transfusion blood or plasma there.

Once nicked supervising surgeon comes in and takes over as chief cutter. I have the paperwork that says I lost 2 litres of blood. Of course with that sort of blood losss they can no longer take 55% of my liver so they get their best 'chunk' which the Dr tells me was about the size of a ten yo fist.

Post op reports show I get Acute Renal and Liver failure.

I was told that making up that sort of blood loss take quite a while and while the blood is short my healing time slows along with that.

Meanwhile back at the ward I get severve ascites. My Dr tells me to start looking for 'trials' not good. At least they let me go home to my family.

So with retrospect my answer should have been no resection.

The surgeon did say there was nothing more they can do. What I want to know for curiousity's sake is 'did the small resection prolong or shorten my life'.

Stones

seage · Regular Joined: 19 Jan 2006 Posts: 20

Hello stones,

I am very sad to learn of your predicament. Please do update us on your situation, whenever you can.

So what are your options now? And are all those complications you mentioned (eg. liver/renal failure, ascites) reversible (ie. healing with time)? Is resection no longer an option?

Again, very sorry to hear about it. But do fight on for the important people in your life.

-seage

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