Topic: we are living in a nightmre and could use some hopeful advice

My sweet husband 61 years old was dx about 6 weeks ago. Started Gemzar and Xeloda with some nasty intestinal side effects. He was totally asymptomatic when liver mass was found 11.5 cm on right lobe and 2 small lesions on left. Unresectable -for now we were told. Trying to get chemoembollization to zap the tumo and hopefully reduce for surgery, but having hassles from insurance ( has anyone had success with this procedure, we are trying to get authorization again, or raise funds to pay for it if needed - after end of 2nd cycle of systemic). Now the ins company has nixed Xeloda too. Waiting to talk to his onc re what next? we have a top GI onc who we like and respect in Wash DC Dr Marshall, but am beginning to wonder if we should look for someone who has had better luck with insurance companies as we can't stand many more turn downs. What does Blue Cross want him to do...just go away?
We are going to fight this disease, these insurance issues with all our might, but we can use some advice from people who have lived through  this hell  and prevailed with this disease for a good long time...everything we read seems so dismal. Help please, we need to hope and grow older together....

Re: we are living in a nightmre and could use some hopeful advice

At first my husband was categorized as "cancer of unknown primary" because the liver tumor came from elsewhere, according to findings of the biopsy.  It was adenocarcinoma, a glandular cancer.  We learned that that is a more general name.  His first two oncologists told him the liver tumor was unresectable.  One of them said that sugery would send blood supply to the healing site of the surgery even if it was removable, so that would send more blood to where there could be remaining cancer cells.  I don't know whether that is a commonly held viewpoint.  He tried Xeloda but had no results.  He asked about chemoembolization, but the oncologist he was seeing then just shrugged it off.  Finally after Xeloda didn't work and the tumor started to grow, his dr sent him for consultation to a surgeon in the same group of oncologists because the surgeon had done more liver work.  This dr, "Dr H" said he would be willing to try to remove the tumor if my husband was willing to give it a try.  He said it could be a long surgery with a long recovery, or he might cut in and find the cancer spread and nothing he could do.  In that case it would be a short surgery.  Tom was in surgery 4 1/2 hours.  The surgeon got the tumor out.  He did find some malignancy in one nearby lymph node.  However, he and my husband consider the surgery worth doing.  For one thing, as my husband said, there would be an actual person looking at what was inside of him, instead of just scans and blood tests. 

So there you go.  Two medical oncologists said it was "unresectable" and one said it was possible to remove.  I don't know why Tom wasn't sent to the surgeon earlier to get his opinion. 

Now, how this might apply to your situation is just a guess.  It could have gone the other way.  Dr. H might have gone in and found too much malignancy spread and would have quit the operation.  This is a very exhausting surgery.  But if you are not satisfied with the "unresectable" diagnosis, ask very detailed questions.  Also look for a surgical oncologist who specializes in the liver, bile duct area.

It's interesting that I was told to seek second opionions outside of the oncologist group where you are a paitent.  yet the dr. who did the surgery is within the same group but had a different opionion on whether this was possible.

I'm not sure what the best way to proceed with the insurance is.  We have Uniform Medical.  They have covered most things.  We have been very lucky.  I don't know if Xeloda is not the standard for the cancer that you are dealing with.  I think it's a widely used chemo.  Tom didn't have too much side effects, just fatigue and the red skin on his hands and feet, but that wasn't too bad.  His hair thinned but didn't fall out.  From what I read, Xeloda works well for some people, doesn't do anything for others. 

It will soon be a year since my husband got the unknown primary diagnosis, which was later changed to choloangiocarcinoma because of the surgery.  He's still up and about after a lengthy, exhausting recovery.  We know that cancer is still lurking, but his follow up PET and CT scans were clear.  We have adapted to a slower paced life, but he doesn't have the abdominal pain he had last fall.  So diagnoses and circumstances can change.  It sounds like right now you are just trying to find your bearings.  It feels like a nightmare for sure.  I don't know if I gave much in the way of advice.  I always lapse into telling stories.  I'd just say try to find out as much as possible about the non-chemo options.  I'm not anti-chemo, just find the stories of new-tech and targeted treatments and then wonder why these are not at least offered to a person, so look for doctors who specialize and get consultations with them.  The medical oncologists focus on chemo.  However, if chemo can shrink a tumor to make surgery more likely, then that makes sense too.  I guess the best thing is to be as informed as possible and then make a choice what to try first.  I'm sorry I can't be more helpful about the insurance. 

Blessings,

Sarah

Re: we are living in a nightmre and could use some hopeful advice

Michele,

There are several things you can do.  You just need some time and a telephone.  Find out through your husbands work if the company provides an insurance advocate, also check with the insurance company and find out if they provide one.  This is someone who will help you through this process.

Also, have your Dr. write a letter to the insurance company explaining the situation.  Have him send the latest research that shows why you want to try Xeloda or whatever else you are interested in and do not give up. 

Many on this website had to battle to be able to take the things they researched and wanted to try.  Just keep asking to talk to someone else, a supervisor, anyone.  Just keep at it.

Re: we are living in a nightmre and could use some hopeful advice

Thank you -have made some progress -the insurance company backed down on  appeal forchemoembollization and when he finishes the next cycle of chemo will look at this alternative. Am still trying to learn all I can about the treatments for this disease, of which ther is so little out there...many thanks for your experience and advice.

Re: we are living in a nightmre and could use some hopeful advice

michele wrote:

Thank you -have made some progress -the insurance company backed down on  appeal forchemoembollization and when he finishes the next cycle of chemo will look at this alternative. Am still trying to learn all I can about the treatments for this disease, of which ther is so little out there...many thanks for your experience and advice.

So glad that your insurance status got updated, and I'll be looking for your reports on the chemoembolization.  It's a relief to know what alternative will be offeredand that insurance will support it.