Topic: Husband newly diagnosed

My husband is 66 and was diagnosed at the beginning of September 2013. It started with routine bloodwork back in july that seemed a little off so his primary care doctor ordered a retest and an ultrasound of his abdomen.  Luckily he did that because they saw a mass in his liver. He had a ct scan and the tumor is 6cm. After two biopsies it was confirmed as intrahepatic cholangiocarcinoma.  They say he is stage 1 and the oncologist at Riverside Medical Clinic suggested chemotherapy (gem/cis) and gave us a referral to dr. Imagawa at UC Irvine (http://www.faculty.uci.edu/profile.cfm?faculty_id=4828) to determine if surgery is an option. Our oncologist has worked with him before with cc patients and wanted us to see him to determine if surgery is an option.

We met with him in september and he said at this point the tumor is too large and close to a vein for surgery but wants to try chemo for two months and then scan him again to see if it has shrunk enough to do surgery. He said it would be a resection to remove approximately 60% of the liver. I'm hoping that will be the case since this cancer has such a grim outlook otherwise.

He is in the middle of his third treatment (once a week for two weeks and one week off). We meet with dr. Imagawa again in mid November and it seems like forever from now.  He is tolerating chemo so far. His worst side effect is constipation but we are dealing with that as best as possible. I just hope it is killing his cancer.

Our insurance also contracts with ucla and Cedar Sinai but our RMC doctors haven't worked with anyone at those facilities that are surgical oncologists that have dealt with cc before so we are hoping uci will give us the news we want to hear in November.

Any suggestions you have would be much appreciated.

Re: Husband newly diagnosed

Dear Surfer1,

Your husband's doctor must be brilliant.  I had blood work done many times, but my doctor suspected nothing.  On 5/29/13, I was diagnosed with cholangiocarcinoma, inoperable, Stage IV.  Doctors told me that blood work would not show a problem with the liver unless the tumor was pressing against another part of the body.  The tumor eventually blocked bile ducts and caused jaundice and severe itching. They did blood work and my liver enzymes were bad  Through a cat scan it was discovered I had a 6cm mass on the liver with vein involvement and metastisis.  I AM SO HAPPY your doctor discovered your husband's cancer in Stage I and he is tolerating chemo.  That is great news.  I needed time to think about chemo, Cis/Gem, and have decided to proceed with the treatment although chances of it helping me are very small because I am in Stage IV.  Please let the board know how you and your husband are doing.  I wish you the very best and hope your husband has a full recovery.

Re: Husband newly diagnosed

Hi and an official welcome. I hope you got that other email I sent you with a couple of Calif. Hospitals on there. Please know this is absolutely the best thing you can do and I know you will get replies tomorrow as our East Coast is probably asleep now. Good to see you here now as part of our family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Husband newly diagnosed

Hi,

I live out in your area, and the hepatologist who diagnosed me two years ago is a USC doctor in Riverside, Zeid Kayali. I am glad that your husband was diagnosed early stage. Resection should be a real option for you, and surgery is the best possible treatment for this disease. I'm also glad you are hooked up with a surgeon experienced with cc. We will hope for a good report in November.

If UCI says no to surgery, get a second opinion! I'd recommend Dr. Selby, Chief of Hepatobiliary and Pancreatic Surgery, Abdominal Transplantation, at USC, if you can work out insurance. He did two resections on me with more advanced stage disease when others, including UCLA,  had said no.

Best wishes to you and your husband. Mark

Re: Husband newly diagnosed

Surfer1,  I was referred to see Dr. Imagawa at UCI but he said my cc is inoperable & I then saw Dr. Kuo the radiation oncologist & had 2 SIRT radiation treatments.  I then had 2 rounds of Gem/Cis chemotherapy & then 2 rounds of Oxilaplatin/xeloda chemo rounds.  Seems like I am on 2 of everything.  Unfortunately none of then have shrunk my tumor.  Now I will be having another MRI to see if the last chemo did anythings.  I also saw Dr. Serry at UCI who tried to get me into a trial but I did not qualify for that.  I have great respect for all the doctors I have seen at UCI but so far not much good news for me.  I feel good right now.  I have had no symptoms of cc so far! No jaundice, itching or grey bowels! 
I hope you will be able to have surgery which is the best way to go.

Re: Husband newly diagnosed

Welcome,
Good for your doctor catching it at such an early stage. I will be praying for shrinkage and surgery.
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Husband newly diagnosed

surfer....I would like to follow the others in welcoming you to our site.  Next to "zero" disease presentation, Stage I is about as good as it gets.  Hence, I would make sure to consult with numerous specialists: surgeons, interventional radiologists and oncologists.  I believe that USC treats the highest volume of CC patients in Southern California. 
Please keep us posted.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Husband newly diagnosed

Surfer,

My Dad was diagnosed with intrahepatic cholangiocarcinoma after his resection at UCLA.  The scans couldn't discern what type of tumor it was before the surgery, but the surgeon at UCLA decided it was best to remove the tumor regardless given the size of ~6cm.  Since your insurance has contracted with UCLA, it could be another place for you to get a second opinion.  The Pfleger Liver institute is the place you will want to contact.  The surgeon my Dad had was Dr. Busuttil, and his oncologist right now is Dr. Finn.  They are experienced with CC patients, but UCLA does tend to be more conservative and I do agree with Mark that USC's Dr. Selby is the person you'd want to talk to, especially if others say no.

Best of luck.

Julie

Re: Husband newly diagnosed

Thank you all for the replies and well wishes. The support means a lot, especially since no one other than those here seem to know about this terrible disease.  We are taking it one day at a time and thought all was going well since he hasn't had any major side effects. However this week his blood counts are down so he couldn't have his chemo treatment which seems like such a setback. I'm sure it is typical though. We will try again next week.

Thanks again for the support. I check the site often and it has been a tremendous source of information.

Re: Husband newly diagnosed

Surfer1 -
Belated welcome to the group. Glad to hear that it was caught so early. We looked back through my husband's labs and his liver function had been slightly elevated for about 5 years and he had an ultrasound around three years ago and no one saw the mass in his bile ducts. So I say you are VERY lucky to have such an on the ball doctor.....not saying that ours wasn't on the ball because I agreed that they were elevated because of a couple of his diabetic meds. It wasn't until the jaundice that we really knew anything was wrong.
It's great you are hooked up with a good team and as everyone says, get multiple opinions especially with this type of cancer.
Here's hoping to a successful resection. My husband's was extrahepatic - Klatskin's tumor and even though it was into the vein they were still able to do a resection and took about 60% of his liver.....and Yippee, it grows back and according to the surgeon only takes about 6 weeks.

Look forward to hearing how things go!

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Husband newly diagnosed

Hi Surfer,

A belated welcome to the site from me as well. Sorry that you had to find us all but glad that you have joined in with us here as you're so in the right place for support and help and tons of each will be coming your way from everyone here. So glad to hear that your husbands local doctor was so on the ball in ordering an early test and that the CC was caught at stage I. That might not sound like good news to most people but in this case it is.

I hope that the chemo goes well for your husband and does indeed lead to further options being explored with regards to surgery etc. Have you thought about seeking further opinions from those very experienced in treating CC patients?

Please keep coming back here and share with us how everything goes for your husband, we are here for you. I look forward to hearing more from you.

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Husband newly diagnosed

Our plan is to see how the scan goes in November and the follow up meeting with Dr. Imagawa. If surgery is recommended, I'm not sure we need a second opinion since he seems to be knowledgeable/experienced in CC. If he doesn't recommend surgery we will definitely get a second opinion. I guess I better start working with our insurance to see if we can be seen at USC(currently they don't contract with them). If not it will be out of pocket or go to UCLA.

Thanks for all the input.

Re: Husband newly diagnosed

Surger...sounds like a good plan and I wish for a super clean scan heading your way. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Husband newly diagnosed

Hi I am new to this site. My husband was diagnosed with extra hepatic cc in July 2012. It started with jaundice. He had 4 stints pit in & they kept stopping up so the drs put in a medal stint. We went to md Anderson in houston . They confirmed the diagnosis. Non resectable. We went through chemo. Gemzar- cisplatin. They hoped it would shrink enough to br resected. PTScan showed no shrinkage at all. We found a dr. at columbia hospital in New York who has done miracles with resections where other drs. would not touch. His name is Dr. kato. We went there. He said he could not do it was too risky. We have just finished chemo of taxol - carboplatin. We have another pet scan in 3 weeks. Hoping and praying its shrunk. The drs. Here don't know what to do after that. The cancer is wrapped around his portal vein. Has anyone else had this similar situation. If so please let me know what we might except. I wish u all the best of luck & I am praying for all of you.

Thanks for any information you may want to share

Beverly in louisiana

Re: Husband newly diagnosed

Hi, Beverly,

I do not have the tumor wrap around the portal vein, so I cannot tell you about the experience, but welcome to this corner of the web.
In most CCA cases, if surgery cannot be done, then systemic chemotherapy and or with targeted agents such as Avastin ,Nexavar will be part of the treatment plan along with stents to relieve symptoms.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Husband newly diagnosed

Lj.....portal vein encasement is not unusual.  I recall very few instances in where the surgeon was able to literally "peel of the tumor" however; as said, this is very rare.  My fingers are crossed that the upcoming scan will reveal shrinkage.  Please keep us posted.  We care.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Husband newly diagnosed

My husband's tumor was into the edge of the portal vein but had not wrapped around it. They were able to resect a small potion of the vein out.
I wondered but I never asked our surgeon because it wasn't an issue but I don't understand why they can't resect on a regular basis....with the vein or the artery. They put teflon grafts in all the time and they can do bypasses with harvested veins.....I think of aortic aneurysms and the telfon then use to repair that so I don't see why they can't just cut out the bad section and replace it.
I know on my son't thyroid surgery they took out 5 cm of his internal jugular vein because a lymph node had grown into it and they just stitched the two pieces together.

I guess I should have asked. If anyone knows the answer, let me know. I would love to know.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Husband newly diagnosed

Kris...this is a good question to pose to Dr. Kato at his upcoming web presentation.  I have been told that the risk of Portal Vein Trombosis (PVT) is very high although, some have been successfully operated.  (Very few that I know of.)
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER