Topic: First scan

Well I am gearing up and gettin ready to have my first pet scan followed by my first onc appointment. I am all over the place this morning trying find ways to relax my body and mind. Mixed emotions mostly fear, but hey I figure that it will be better to have more info before the day is better as it will hopefully mean getting closer to if and when I can have treatment.

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

Re: First scan

Dear PFOX2100, best of luck today. You have what we call scanxiety! You will be fine. My Teddy used to say, "let's find what is wrong and then we can fix it!"
You WILL feel better when you know exactly and get a treatment plan in place and at that point your fright will turn to fight! Waiting now to hear your update!

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: First scan

Dear pfox2100,

Good luck today!  I will have everything crossed for you!

Jeeyoung

Re: First scan

good luck...we have had TWO "scan days"...i lost 5 pounds before the last
scan (and have since gained it back! ha ha)

they are pretty intense days!

Dorien

Re: First scan

Hope everything went well for you today!!!

Re: First scan

Hi Pfox,

Yes scanxiety, grrrr to that! That's something that we all seem to go through but grrr to it once again! But, you have the right attitude about the scans etc as once they have the info then they will be able to get on and start treating things. I hope that it all went well and please let us know what happened.

Best wishes,

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: First scan

Good luck with your scan. Yep, I think we all get anxious. No matter how many we have had. I hope you get good news and can get a plan in place quickly!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: First scan

Hi all. Well glad to say yesterday is over and today is a new day. Had my first pet and onc appt. informed once again being diagnosed with ICC. She also informed me that I was definitely mis diagnosed in 2010 with the hemangioma and I have been living with this cancer for over 3 years. The most shocking and yet exciting news is though my mass is over 15 cm all the cancer to this point is confined to my liver. A prognosis was not given. Is this normal for oncs not to give this in less the patient asks? I asked her about stage and she said she would stage it as a 3. I start chemo next week with 2 weeks on 1 off and will be having a port put in which I had never heard of before. She said the chemo treatment will shoot for 6 months. They continue to tell me it is very unlikely that I will ever have surgery or a transplant but hopeful the chemo will do its job and that I will respond well. So my fight and journey will continue.

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

Re: First scan

Dear PFOX, actually this is good news. First of all you are at a Stage 3 and most of all it is all contained. I don't believe a prognosis can be given at this point and  I don't believe you can never have surgery. I think, and I'm not a DOC, but perhaps if they can shrink that Mass to a rinky dink size you never know and that's what they call HOPE. I have not heard of anyone here who has not loved their port. At the top of the page is a Search Engine. Type in Ports and a ton of posts will come up and you can then learn about ports. At this point I am very happy for you and the most important thing to remember is you will be starting some treatment and that is a good thing! Good luck on the port and please keep us updated as we are all in your corner!

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: First scan

pfox....intrahpetic CC patients rarely are offered liver transplantation however; our Tiffany just underwent the process and she is doing well.  In her case it was a Domino Liver Transplant.  Several institutions perform this procedure, hence you can find numerous articles on it. Here is an example:
http://ucsdnews.ucsd.edu/newsrel/health … ng-gish.as
I know very little about this procedure, but it is worth checking it out. PfOX, is it possible for you to obtain additional, professional opinions?
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: First scan

Pfox- such good news that it is confined to just your liver!!  Your port will be uncomfortable for a short time then you won't even notice it anymore.

Re: First scan

Yes it is possible though I feel like I am going to get the same feedback if I go to mayo which would be the only place I would get a second opinion due to location and feasibility. So I am not quite sure how I feel about getting a second opinion at this point..thoughts?

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

Re: First scan

pfox.....then I would do just that - contact Mayo for a second opinion.  If anything, they will agree with what has already been determined.  You would need to gather all of your medical reports (everyone should) including blood test results, scan and physician reports. 
This link (I hope it is still valid) will lead you to the information needed:
http://www.cholangiocarcinoma.org/major … enters.htm
Others may help us out and share with us how their process worked with Mayo. 
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: First scan

Dear PFOX, I second the vote that Marion suggested. Always get a 2nd opinion so that you will never question what you did and to validate that this is the correct thing you are about to start.  Honestly it will take all questions out of your mind. Can't hurt to have a 2nd opinion but it will hurt if you don't. Get that done and then you can go skipping to your first Chemo date.

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: First scan

Thanks I will look into that. Info start chemo next Friday? Is mayo (I'd be going to Arizona) something people can tend to get into that quickly? Can I start my chemo and go for a second opinion after that?

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

Re: First scan

PFOX, Yikes, not sure how quickly you can get in, I don't think it takes that long and not sure about the chemo question. I leave most of the medical stuff up to the pros on this Board since Teddy never had chemo. He had the Whipple and then a couple years later Cyber Knife when the CC returned. I can make a promise to you that since I live in Phoenix and if you come here I can come visit you or go with you if you need an extra pair of ears. Then again they may just review your case and talk via phone to you.

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: First scan

Porter, sorry to hear the news about diagnosis, but now that you have more information you can at least formulate a game plan.

My wife Lisa got a second opinion at Mayo (Rochester) shortly after her first visit at OHSU.  You can definitely get a second opinion after you start chemotherapy, but some centers may want you to wait until after a few cycles are completed.  We were very impressed with the Mayo system, the doctors, and the overall efficiency of the 3-day visit.  Unfortunately, the Mayo team simply confirmed the opinion of the OHSU team that Lisa was inoperable and unlikely to ever be a candidate for surgery. 

However, since that time, the OHSU team has shifted their opinion a bit and now they believe that Lisa may be a candidate for surgery in the future.  Lisa's condition is quite similar to yours -- ICC with a large 15cm mass and several smaller masses.  The only difference is that Lisa is stage 4A due to local and distant lymph node metastases.  Dr. Billingsly is the liver surgeon at OHSU and he is one of the top surgeons on the west coast -- he trained at Sloan Kettering.  Dr. Billingsly reviewed my wife's scans at the tumor board and he believes that resection is possible with a good initial chemo response. 

We have also sought multiple other opinions from surgeons who essentially agree that resection could be possible in the future.  Some surgeons will review your scans and will provide a remote consultation without actually having to visit them.  Please let me know if you would like further information and I can provide some names and contact numbers.

The takeaway from my rambling is that second and third opinions are incredibly valuable.  Just because you have been told that surgery is unlikely does not mean that you will not become a surgical candidate in the future.  And like I stated previously, many of those who have been deemed permanently inoperable have had very good outcomes and live productive lives largely free of symptons.

Best of luck on your journey, and please let me know if I can help in any way.


Kind Regards,

-Matt

Re: First scan

Lisa,

I had to ask Dr Vaccaro what my prognosis was.  She didn't just come right out and say it.
And a port placement is very, very standard.  I had one.  It is much more convenient than getting IV's and blood draws every week.
Did she mention me or Lisa?
When I first met her, I asked if she had other CC patients and how they were doing.  She of course couldn't go into much details d/t patient privacy but I got some info.
Then I ran into her other CC patient in the infusion room and got her full story.
Take care,

Susie

Re: First scan

Ports are wonderful! Chemo is hard on the veins.
As far as I know, you can get a second opinion while on chemo, but they will probably want you to stop before you transfer your care. Or they might pick it up. I know for most surgeries, you have to be off chemo for a few weeks at least.
Good luck with Mayo!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.