surfer1
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Thank you all for the well wishes and positive thoughts. His surgery is scheduled for 4/21/14. I’m sure it will be here before we know it. So thankful he has this opportunity.
My husband also felt bad about getting a second opinion and I pushed for it. After we got the second and third opinion he felt more knowledgeable about his disease and thanked me for pushing the issue. Doctors are used to patients getting second opinions, especially in situations like cancer. Don’t hesitate.
I definitely recommend a second or third opinion. We had to work through our insurance (HMO) to see where they contract with and then who our physicians group contracts with because apparently they can further reduce your options. The best bet is to talk to your doctor (we worked with our oncologist to get referrals to different surgeons) and they can work with your insurance and put in the referrals. I was told that in California HMOs limit you to in-state. Not sure if that is completely true or not though.
We also self referred ourselves to one doctor and will have to pay for that consultation out of pocket since they don’t contract with our insurance/physicians group.
We saw Dr. Imagawa at UC Ivine, Dr. Selby at USC, and Dr. Colquhoun at Cedars Sinai in Los Angeles. All three had differing opinions as to the plan. My husband’s tumor also was too large and close to major veins to do surgery initially and Dr. I recommended chemo to shrink it. We did that for two months and then rescanned. At the next appointment, same story. That’s when we went for the second and third opinion.
Dr. Selby said to do surgery now. We couldn’t get the insurance thing worked out and he recommended Dr. C. We met with Dr. C and discussed the other two opinions and he recommended a portal vein embolization procedure and continue chemo to prepare him hopefully for a trisegmentectomy. One thing that helped us visualize it was having the doctor explain the scan images and show us where the tumor was and also explain how the resection surgery is done. The doctor showed us what segments they would take out of my husband. He had the PVE procedure done in January and we are waiting for a rescanthis month to see if surgery will be an option.
So long story short, it seems each doctor has different approaches and opinions. It’s definitely worth seeing others to ether confirm the path you are on now or see if there are other options. Also, it seems that each case is different because of the location of the tumors and proximity to the portal vein and Inferior Vena Cava, but there are cases that shrinking the tumor will lead ultimately to resection. Porter on this board is a recent example of shrinking her tumor and then having a resection (and I’m hoping my husband will be one too!)
Good luck and take care.
How doesn’t one find a genetic counselor? Would our oncologist or surgeon refer us or is that something we would search out ourselves and self refer?
Thanks for that. I had no idea and I shop there a lot. I’ll make sure to go that route in the future! Every little bit helps.
Congratulations and good luck with radiation. It is so wonderful to hear that she was able to have surgery. There is hope.
My husband has never had any symptoms either but his biopsy definitely confirmed intrahepatic cholangiocarcinoma. I definitely recommend getting a second or third opinion even if it to just confirm that you are taking the right action at your current facility.
I’m sorry that I don’t know anyone at the two facilities you mentioned to recommend.
Good luck and congratulations on being stable.
When we met with Dr. Colquhoun at Cedars Sinai for my husband, he said when my husband would have a resection, he would have a trisegmentectomy and leave segments 2 & 3 and take the gallbladder as well. Sounds like yours will be the same. Good luck. I will keep you in my thoughts.
It seems to be a normal thing, both the drop in counts and the feeling down thing. My husband’s counts were too low during his second and third cycle. The first time the onc postponed it one week and the counts were back up when we went back the next week. The second time it happened, the onc said to skip it (it was the second treatment in a cycle) and resume at the fourth cycle (tomorrow). We are anxious to see those results tomorrow morning.
I don’t know if there is anything to do to help the down feeling. I think it is completely normal but it still sucks.
I try and make sure he keeps eating healthy and he washes his hands all the time and wears a medical mask when he goes out and is around people.
Take care and I hope your numbers get better.
