Topic: Second opinions

Hello,
I thought I would check in and let you all know how my mom  is doing as well as ask a question. When she was first diagnosed with ICC in December of last year, her surgeon said that she was a candidate for surgery and would have 3 months of chemo and then see if the tumor shrunk and talk about surgery.

She went last Tuesday for her appointment with the surgeon and he said that the tumor had not shrunk enough and that it's in a bad area where there are 3 blood flow channels. So now she will have 3 more months of surgery and then see what happens.

She and my family who was with her at the appointment are so overwhelmed that nobody thought to ask, "can the tumor still be removed even if it shrinks in its current location?" Have any of you dealt with this?

I believe she has an excellent surgeon, but we are not in love with her oncologist. It seems like he gives her false hope. He'll call to say that her markers have gone down but not really explain what that means. Therefore, she and my dad are thinking and telling everyone that things are looking up when they don't actually know.

I'm also wondering about a second opinion. Is this definitely recommended? And how does it work if you go out of state? I'm looking into MD Anderson, Barnes-Jewish Hospital and trying to find somewhere in the Los Angeles area because that's where I'm located.

I would really love and appreciate any advice you all have!! Please, please, please! I know that time is of the essence and I truly want to do all that I can for my mom. Thank you so very much!

Best,

Meghan

Re: Second opinions

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.

Re: Second opinions

Meghan,

Regards to second opinions, I think it's a good idea to pursue because this disease is quite complex and doctors have varying degrees of experience with it.

In addition to what surfer recommended above, in Los Angeles area, UCLA is another good option. My dad had his surgery with Dr. Busuttil at UCLA. He's a very good surgeon who sees lots of cases on cholangiocarcinoma. Also, within CA, you can reach out to UCSF and Stanford in NorCal.

For out of state second opinions, my dad has managed care as well, which restricts where you can go. So I looked for places that were willing to do second opinions over the phone. The surgeons that were willing to review my dad's files included Dr. Tomoaki Kato at NY Presby, Dr. Chapman at Barnes.

Best of luck.

Re: Second opinions

Meghan, I just wanted to touch base again and to say that my hero Dr. Chapman is so approachable and not intimidating. I suggest you start calling him (of course LOL!!) or Dr. Kato, or MDAnderson and start getting another opinion, time is not a friend to cholangio!! I can only speak from my own expiernce, that Dr. Chapman will act quickly and when you hang up and think "why didn't I ask that", he will not be annoyed. When I was diagnosed, he held my hand and told me what to google when I got home, no God like arrogance in this man!!!
Lots of prayers and HOPE for your mom and family-Cathy

Re: Second opinions

Hi Meghan, as others have chimed in absolutely go for those 2nd and 3rd opinions. 
For my scenario, the size and location were initially the factors as I was termed inoperable when first diagnosed.   From my understanding it also involved too much of the left hepatic vein.  Fortunately, chemo was able to shrink it down and a trisgementectomy was performed in January.
As far as the tumor markers, my oncologist was always happy to see the decrease in numbers during my treatment.  She said the number in conjunction with chemo could "possibly" indicate treatment was heading in the right direction.  However, she would also remind me to not rely on these numbers and the most effective way to see how one is responding to treatment is with the imaging and scans.
Lots of hugs and strength to you and your family.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Second opinions

Thank you so much for all of your answers! I know my mom is nervous about a second opinion because, as silly as it sounds, she doesn't want to hurt her doctor's feelings! She's just that type of person. So, we're talking about it now and hopefully she'll be willing to do it. Thank you again!

Re: Second opinions

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.

Re: Second opinions

Meghan....Patients often hesitate from obtaining additional profession opinion for the very same reason - they don't want to hurt their doctor's feelings.  But in today's time and for a disease such as this, I consider it to be mandatory effort to make.  The medical profession has accepted it and in most instances encourages patients to do just that.  Good luck and 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: Second opinions

Meghan,

I got many opinions after my diagnosis.  I asked my doctor for the names of other docs at other cancer centers to see where to go.  No hurt feelings there. You can bet that my doctor would get a second and third opinion for his loved one for sure!

Good luck and please post updates.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.