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Posted 3/31/2010 12:00 AM (GMT 0)

Hi,

My other half was told today that the lesions found on his liver are cancer.  We were hopeful that it was nothing serious but with his medical history, it's not a complete surprise.  I just came across this board a few days ago when he was first told they found lesions.  Today, they confirmed the worst and they scheduled an appointment with the oncologist for Thursday. 

A little background-  He is 50 yrs old and was a drinker until four years ago.  Four years ago, he became critically ill, was hospitalized and diagnosed with Hep C and cirrhosis.  His doctors didn't have much hope for a recovery and I didn't expect him to stay sober but he surprised us all.  Long story short, he stayed sober, started excercising, mended relationships and became the man I always knew was in there.  His first course of interferon failed and he's four months into his second trial.  His doctor sent him for a CT scan in September which didn't show anything unusual but then she ordered another in February.  Unfortunately, the results got misplaced and no one knew that there was a problem until he asked about the CT results at his appointment last week Thursday.  That's when his doctor pulled up his scan and said, Oh, oh.  All we know is they are going to use chemo directly into his liver and he's going on the transplant list.  I don't know what method they are going to use in the chemo treatment but we'll find out Thursday.  I want to thank the people who are running this board and those who have posted their story as it has been very helpful to read the stories of those who have been though this nightmare.  I think I read around 700 posts and feel a little more hopeful. 

 To those who have been through this-

What questions should we ask on Thursday?

Is there anything we should know going into this that you wish you had done differently?

I'm trying to be strong but I can't imagine my life without him.   Any input will be helpful.

Thank you, Linda

Posted 3/31/2010 12:55 AM (GMT 0)
Hello Linda and welcome to HealingWell. Sorry that your husband has been diagnosed with liver cancer.

Before I try and answer your questions I have one of my own. His he on a transplant list??? Since he's taking Inferon I am guessing that he is being seen by a hepatologist ??? If not he needs to be.

Now to try and answer your questions. It sounds like they are going to do a chemoembulazation on him. My husband had that done for his liver cancer. First of all don't let them drag their feet in treating it. Ask about all available options for treating liver cancer. Ask about the radiologist's experience with doing them. Find out how experienced he is in it and what his success rate is.
I was told that the radiologist doing my husband's was one of the tops. Can't prove by my husband's results. He went from having 2-3 small tumors to a heck of a lot of them right after his procedure. The CT scan showed his liver lit up like a Christmas Tree with dozens of tiny tumors. Like the 2-3 small tumors were blasted apart. If he needs to have another treatment in 6 months make sure they schedule it when it should be done. Don't wait for them. Stay on top of all his tests so that they get scheduled when needed.

Connie our other moderator is a liver cancer survivor. So it can be beat.

And I also couldn't imagine my life without my husband. If you can get through the journey of his liver disease you can get through anything.

Take care, and welcome again...........thoughts and prayers.
Posted 3/31/2010 12:58 AM (GMT 0)

Hello, Linda, and welcome to the forum, though I'm sorry for your reason for being here.  The good news is that your other half has been sober for 4 yrs.  That really is a huge plus.  If you've read some of my posts, you know that I am a liver cancer survivor.  I will have been in remission 4 yrs. in May.

First, I would want to know how many lesions there are and the size of the largest.  This determines the treatment and outcome.  Regular systemic chemo doesn't work for liver cancer, so they have to target the tumors directly.  They will undoubtedly do chemoembolization, which injects chemo into the tumors and cuts off circulation to the tumors and shrinks them.  Sometimes alcohol injection is also used. 

Next, where are the tumors located?  Are they all within one lobe?  If so, there is the possibility of surgical removal.   Also ask if they use TheraSphere.  At the time it was given to me at Mayo in '06, it was a study drug and I was patient #2.   Transplant is sometimes used, but the success rate is not very high.

I would also want to know if the current hep C treatment should be stopped, if it hasn't been already.  I would think it would be stopped so as not to interfere with cancer treatment.

I'm really sorry that your loved one has been diagnosed, but I'm living proof that there is hope.  Hep C and cirrhosis CAN lead to liver cancer.  I knew this was possible, but didn't believe it would happen to me--until it did.  It's a lot to swallow, but keep a positive attitude and don't give up.  If you get no satisfactory treatment or answers, go somewhere else!

Our thoughts and prayers are with you both.  Please keep us informed.

Hugs,

Connie


Posted 3/31/2010 1:31 AM (GMT 0)
Pink Grandma and Connie,
Thank you for the kind words. He spoke to the doctor's assitant today and was told about the cancer, the scheduled appointments on Thursday, and that he's going on the transplant list. This was on the phone so he didn't get much information at this time. We are making a list of questions and the ones you both suggested are very helpful. If you think of anything else, please let me know. I'm usually good in a crisis but I'm kind of operating on auto pilot right now and I don't want to miss anything I should ask or should be doing. Connie, like you said, I knew it was possible but didn't think it would happen. The worse I expected was that the Interferon wouldn't work and he would still have Hep C. I'm happy to hear you are doing well.

P.G., did they think the treatment made your husband's condition worse? Did they do more treatments and did it help shrink the tumors? And yes, he's being seen by a hepatologist. He's been a patient at Life-Link of Tampa for the past three years. Our local Hep C support group told us about Life-Link's Hep C program, his primary doctor referred him and sent in all his test results and they accepted him as a patient.

I'm trying to stay positive. Thank you for the thoughts prayers.

Thanks again, Linda
Posted 3/31/2010 2:28 AM (GMT 0)
Hi Linda, They didn't say, but acted surprised about the results. I couldn't ask in front of my husband. He was the type that didn't want to know the cold hard facts. I guess it was his way of coping. I thought and still do think that something wasn't done correctly. And they were supposed to do another one 6 months later but they didn't. When I asked the hepatologist at month 7 if they were going to do it. She said that yes it would be done but that she wanted him to go back and be reevaluated for transplant so get all the testing done again. That should have happened at 6 months too. A month later we got the news that he was listed. A few weeks later we found out that his cancer had grown and multiplied too much so they took him back off the list. So we went from an extreme high to an extreme low within a month. His coordinator dropped the ball on him. But it was meant to be or it wouldn't have happened.

It's because of this that I tell everyone to be very proactive in their health care. If you have questions don't be afraid to ask them. Demand answers if they are not given. Don't be afraid to step on some toes if needed. You have to do it professionally as to not to alienate the health care profession, but it can be done. Learn everything you can about liver disease. If the doctors know that you are educated on it and doing everything that they want you to do, they are more apt to be forth coming with information and work harder for a good out come.

Thoughts and prayers........
Posted 4/1/2010 8:44 PM (GMT 0)
Hi,
We're a little more hopeful today. He goes in Tuesday morning for chemoembolization with LC beads. We're a little confused about if he's on the transplant list or not. We were told different things by different people. I'll ask more about it Tuesday but for now they said he has three tumors in the right lobe with the largest measuring 2 cm. His liver is too damaged for surgery and they said the main thing is to keep more tumors from forming until he can get a transplant. The doctor said even if the chemo works, it's an 80 % chance new tumors will develop in time. We'll just have to hope and pray for the best. I'll send an update after we get home from the hospital on Wednesday. He'll need to spend one night in the hospital.

Thank you and please keep him in your prayers.
Posted 4/1/2010 9:55 PM (GMT 0)

Linda, the LC beads are in a compound that will be injected into selected vessels that are feeding the tumors, which will shrink them.  You might want to ask about the possibility of excision of the rt. lobe of the liver (which is what I had done.)  This completely eliminates the tumors.  You need to find out the name of his surgeon and his hepatologist and also if he has been evaluated for transplant.  That seems to be the direction they want to go in.

My prayers are with you and your other half.  Keep us posted!

Hugs,

Connie

Posted 4/2/2010 1:24 AM (GMT 0)
They said his liver is too damaged for surgery. The doctor who is doing the chemoembolization said that because of the condition his liver is in, the tumors will come back. This is to buy time until a transplant. He made it sound as if the decision was made to go for the transplant but when we spoke to the hepatologist she said something about the transplant board getting in touch with us after the chemoembolization. I'll get the confusion cleared up on Tuesday. I'm just glad something is being done quickly.

More as soon as I know something.

Thank you so much for the prayers.

Linda
Posted 4/2/2010 2:23 AM (GMT 0)

Linda, they were probably referring to the surgical removal of the tumors, which is understandable.  There's no reason the rt. lobe couldn't be removed from what you've told me.  However, if they want to pursue the possibility of transplant instead, I'm sure they have their reasons.  He will need a complete evaluation by a transplant team, including multiple scans, blood work, and a psychological evaluation.  Then, if his MELD score is high enough, he will be listed on UNOS, the United Network for Organ Sharing.  It is a long process.  One step at a time. 

My sister came from SC to be with me during the chemoembolization and a few days afterwards at home. I slept almost the entire time she was there.

My thoughts will be with you guys.

Hugs,

Connie

Posted 4/2/2010 10:10 AM (GMT 0)
The doctor said because of the cirrhosis and Hep C that new tumors could grow in other parts of the liver. I think my husband would do well with a transplant because other than his liver, he's in great shape. No heart problems, no kidney problems, no diabetes, no high blood pressure, no high cholesteral, his weight is good, he goes to the gym and golfs a few times a week and he's already survived once after being told his liver was too far gone for any treatment four years ago. The first doctor thought he would die within months. If you could see how bad he looked back then and how great he looks now, you wouldn't believe it's the same person. His MELD score is only a nine right now but because of the cancer, they said it would move him to the transplant list. I'll call and confirm that surgery is not a good option right now but I know they gave a few reasons why this procedure would be better than surgery at this time. I'm still in shock over this so everything is a little foggy.

It seemed like he's been taking this well but yesterday he told me that he doesn't think any of this has set in yet. He doesn't want to think about the consequences of things not turning out as planned. We are spending the night before surgery close to the hospital so we don't have to get up so early the morning of the procedure. I'm just going to think positive, pray and enjoy every minute I have with him. The funny thing is, all the little bickering we usually do has stopped. All the silly things we usually argue about are just not important anymore. I've stopped crying and imagining all they ways I will miss him if he's gone. If I think about it too much, I'll go out of my mind with sadness. I pray that he gets well and if he doesn't, I'll pray for strenght to deal with it but I know my life will never be the same without him.

Thanks for the input and the prayers.
Linda
Posted 4/2/2010 10:20 PM (GMT 0)

Linda, I also have hep C (diagnosed in '93 and tried interferon but couldn't take it) and cirrhosis.  I was not considered a candidate for transplant because the large tumor I had had metastasized into the inferior vena cava (large vessel that runs off the liver.)  For whatever reason, they decided to excise the rt. lobe after the tumor had shrunk and then died (along with the rt. lobe.)  The left lobe has actually grown some in response to the missing rt. lobe.  Perhaps age played a factor, though aside from artificial hips and the liver problems, I'm in good health.   However, I was told by the surgeon that if the cancer returns, I would need a transplant.  My hepatologist disagrees and says they will catch it early enough to be able to successfully treat it.  They continue to scan me every 3-6 mos.

One thing we can all agree on is that the chemoembolization is the first logical step.  It does take awhile for the outcome to be known, though (perhaps about 4-6 wks.)

Hugs,

Connie

Posted 4/3/2010 2:58 PM (GMT 0)
The doctor said there is a good chance he would get a liver before the next scan if he's on the transplant list. The problem is I don't think he's on the list yet. I'll find out on Tuesday when he goes in for the chemoembolization. He's out golfing this morning but when he gets home, he'll be tired and probably take a nap before dinner. Yesterday, he transplanted a few vegetable plants and that wore him out. Golf keeps his spirits up and I'm giving him lots of loving and keeping him happy. He says I'm being too nice to him. LOL

Linda
Posted 4/3/2010 3:57 PM (GMT 0)

If he hasn't gone through a complete evaluation (including psychological testing) at the transplant center, then I doubt he is on the transplant list yet.  Considering the cancer status, perhaps they can bypass some of that and list him directly.  Be sure to write down questions you want to ask.

Hugs,

Connie

Posted 4/4/2010 6:48 PM (GMT 0)
How does the evaluation process work?
Posted 4/4/2010 7:39 PM (GMT 0)

David, are you out there?  Rick?  Anyone who has gone through it?  I haven't, just have knowledge from what I've read.  I do know that they do extensive testing, including psychological.  Then the MELD score is calculated from his labs, plus whatever points they add for the cancer, and the total score will depend on his placement on the transplant list (low or high...or at all.)  Blood type also plays a part.

Hugs,

Connie

Posted 4/4/2010 9:06 PM (GMT 0)
To get into the transplant program at Massachusetts General Hospital, the caregiver will be required to be there to speak to the transplant psychiatrist, the transplant coordinator and the social worker. The patient has to be there for those conversations as well. Then they wanted a prostate exam, liver biopsy, colonoscopy, endoscopy, tests to measure your intake of oxygen (including an arterial blood take, the most painful/worst test I've ever had), an MRI, CT scan, digestive tract test (ultrasound), stress test and a blood draw (14 vials)and a urinalysis. I've probably missed a couple of minor tests, but that's most of it. I was scheduled to have all but the colonoscopy, endoscopy (done at the same time), the prostate exam and liver biopsy near home. The rest were done at MGH. I spent the better part of a week in Boston for the testing, though not in the hospital. I even got in a Red Sox game while there. Most of the tests were boring and repetitive, plus the usual hurry up and wait when dealing with hospitals. It sounds worse than it was and the end result (a successful transplant) made it all worthwhile. If you have further questions, let 'em fly. Good luck. **David**
Posted 4/4/2010 10:04 PM (GMT 0)
Thanks, David!

Posted 4/5/2010 1:21 AM (GMT 0)
Thank you, David. It's wonderful that you've had a successful outcome! It seems like a lot but as you said, the end result makes it worthwhile. I hope my husband will be as fortunate. My job is flexable so I can reschedule my appointments and be with him whenever I'm needed and also be there to care for him if he get's a transplant. David, when did you have your transplant? Did you have chemoembolization first? We should be home on Wednesday but I'll have the laptop with me. If anyone has any suggestions, please post.

Thank you so much,
Linda
Posted 4/5/2010 1:58 AM (GMT 0)
Hi Linda, I received my liver July 22/23, 2009, having been on the list for 5 years. It's possible you could schedule your part of it in a day. For my ex, it meant a total of four hours between the shrink, the transplant coordinator, the surgeon and the social worker. There was no point in her waiting around while I underwent tests. I didn't have chemoembolization, because as far as anyone knew, there wasn't cancer. Twelve days after the transplant, my surgeon pulled up the biopsy of my old liver and it showed two small cancerous tumors. I was extremely lucky. My MELD score had never been above 18, until a few days prior to the transplant, when it jumped to 24. They think that's why my score escalated so rapidly. I was the right size and blood type (B+) for this particular liver. A year before I was placed on the transplant list, I'd done 48 weeks of the interferon/ribaviron cocktail and my Hep C was undetectable. Three months later I had a cerebral hemorrhage and two weeks later, a seizure, which caused my liver to go from stage 1 to high stage 3, with cirrhosis. Other than that, my transplant analysis showed all of my other functions to be great (even my brain). I turned 60 last week. I've been back working as a tile setter for a couple of months. Please feel free to ask any questions you may have. I check in at least twice a day. **David**
Posted 4/10/2010 8:59 AM (GMT 0)
David, I wrote a response but was having trouble at the hospital with my e-mail and just saw that my response never made it to the board! I'm happy to hear you are doing well and your transplant was a success. They have him scheduled for a transplant evaluation on April 26. Because of the cancer, everything is moving along quickly. The chemoembolization went well and he is not very sick. He mowed the lawn yesterday and is planning on going golfing today. I told him to take it easy but he said he wants to stay busy so he doesn't think about it too much. I'm also staying positive that everything will go well.

David, what was your recovery process?

How long were you in the hospital?

How often did you see your doctor following surgery?

How is your energy level compared to before the transplant?

Again, I'm happy to hear you are doing well and sorry my first response did not go through.

Linda
Posted 4/10/2010 6:27 PM (GMT 0)

Linda, I am really glad to hear that your hubby did well with the chemoembolization and that transplant evaluation has been scheduled for this month!

Please continue to keep us posted!

Hugs,

Connie

Posted 4/10/2010 6:36 PM (GMT 0)
I tried to write you a long reply, but something messed this up, so here are short answers. I'll be happy to speak to you on the phone if you'd like. Connie has my number, or you could email at [email protected] . Here goes: 3 days ICU after 6 1/2 hours of surgery. Then 7 days in transplant unit. Doctors, transplant coordinators, dietitians, physical therapists and nurses all day long. I've never felt as cared for. My energy level was nil, but as weeks went by I really got better. By a couple of months after, I was halfway back and by 5 months, better than before. I lost a lot of weight and it was hard for the first couple of months to eat. Food had no taste and I had to force myself. Then, I couldn't stop eating and had to take it easy, because it goes on your gut without exercise, such as situps. Stomach muscles have been cut in the surgery. I'm a little over 8 months out and am back working as a tile setter, though I'm being careful about lifting heavy (over 50lbs.) things. Everyday, people tell me how great I look. Evidentally, I appeared grey, before. Email me and I'm happy to work with you over the phone and fill in more, if you'd like it. I do want to say one thing. I came out of this very well, not everyone does. Any day, I could suffer rejection and go back beyond square 1. Having said that, I'm better off than I was for 5 years before this. I still have Hep C, that's forever. **David**
Posted 4/10/2010 6:49 PM (GMT 0)

David, on your followups at MGH, have they suggested hep C treatment at all, even for "down the road," after you've had a chance to fully recover?  Or do they (and you) feel that it will take so long for the virus to damage the new liver that it's not necessary (considering your age.)

Hugs,

Connie


Posted 4/10/2010 7:31 PM (GMT 0)
I asked them about Hep C and viral levels a couple of weeks ago. They said at this point they monitor how well my liver is working (great as of now) and unless or until it's having problems, the Hep C isn't the main thing. As to how long it might take for damage to my liver, there's no way to tell. Sometimes the virus takes off with a vengeance on a new liver and sometimes not. My anti rejection meds are minimal and were reduced 2 weeks back. I have to admit, I'm not as educated about many of the things that are going on with my liver, etc.. To me, much of those facts clutter things up. I'm not ducking things, but I've had incredible nurse practitioners, physicians assistants, nurses and doctors. I do what they tell me to do and they've saved my life twice. I trust them and rarely question their calls. On a couple of occasions I have, but it was on minor details. I have been fortunate. I don't think everyone has been so lucky. I've never been rushed into anything and they've been totally straightforward all the way to today. My job is to do what they say and I do. **David**
Posted 4/10/2010 9:54 PM (GMT 0)

David, I feel the same way about Mayo.  I trust them implicitly.  But I also want to know the details.  For some, though, it can be very confusing and just complicate things...as we often see here.  It makes sense that the focus would be on your new liver's function.

Hugs,

Connie

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