Our appointment with the surgical oncologist is coming up
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- This topic has 13 replies, 8 voices, and was last updated 11 years ago by marions.
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November 19, 2013 at 1:16 am #77221marionsModerator
surfer….I am crossing my fingers that shrinkage will continue and that you and your husband can look forward to the best Valentine present ever. Know that a tidal wave of good wishes is heading your way.
Hugs,
MarionNovember 19, 2013 at 12:06 am #77220lainySpectatorSurfer1 , I say ride that wave in to February with good results! Love the word shrinkage and that is good news. This gives you time to get that important 2nd opinion! This certainly is good news as we approach the holiday season. Please keep us updated as we want to hear more good news.
November 18, 2013 at 11:36 pm #77219surfer1SpectatorWe met with Dr. Imagawa this morning. He confirmed that chemo has been doing its job and has shrunk the tumor about 20-25% (it was 6 cm and it is now 4.7 cm). He is very pleased with the result and how my husband has tolerated chemo.
He said surgery still isn’t possible at this point. The tumor is still too close to some major veins (the inferior vena cava and left hepatic vein) that are vital for successful resection. He wants him to do two more months of chemo to try and shrink it more and hopefully get it further away from those veins and then have another scan. If it shrinks more, we will be closer to surgery.
We will also pursue a second opinion of course.
So glad the tumor is shrinking and hopefully February will bring surgery. I’d like that to be my valentine’s gift:)
Thanks for all the good wishes and please keep them coming!
November 16, 2013 at 5:28 pm #77218pattimeltSpectatorDr. Imagawa was the surgeon I saw at UCI. I was not able to have surgery but he referred me to Dr. Kuo the radiologist who did my SBRT. My tumor did not shrink so Dr. Imagawa sent me back to my regular oncologist for chemo. I had 2 rounds of Gem/Cis but my platelets went way too low so then 2 rounds of Oxa/Zeloda. Unfortunately none of the chemo shrunk my tumor. I am now trying to get a referral to Dr. Selby at USC who has done surgeries that Dr. Imagawa would not do. I have been denied by my insurance to see him. It is very frustrating. Dr. Imagawa is very straightforward & lets you know exactly where you stand. Your questions are all good questions for him. Hopefully he will be able to perform surgery for you! Blessings to you.
PattimeltNovember 16, 2013 at 5:45 am #77217marionsModeratorsurfer…..good luck with your upcoming visit. Please know that you are entitled to receive copies of all reports including, blood test results, scan results, doctor’s notes, etc. It is good to obtain and to keep in a file.
Regarding the acronyms, all pertain to a type of radiation:Radio frequency ablation (RFA)
Stereotactic Body Radiation Therapy (SBRT)
Intensity-modulated radiation therapy (IMRT)
Irreversible electroporation (IRE)
Hugs,
MarionNovember 16, 2013 at 3:17 am #77216kvollandSpectatorAt least you are prepared to ask questions about surgery going into it. We were in such shock about the diagnosis and the cancer word that I don’t think either one of us could even tell the doc our names. It had been drilled into my head to ask questions and seek out second opinions but we just rolled along with it. And are so lucky that it turned out good.
I am happy for you that things are to the point that surgery can be an option. I will keep my fingers crossed that it all works out for you.KrisV
November 16, 2013 at 2:52 am #77215surfer1SpectatorThanks for the replies. Yes, I’ve kept a notebook since the beginning and write down notes for every test, scan, dr appt, chemo treatment, symptoms, etc. It has been helpful keeping everything straight. I also use it to write down questions that come to either of us so they are ready for the next time we see the doctor. I recommend it for all caregivers.
November 16, 2013 at 2:30 am #77214kris00jSpectatorSurfer… We have all been somewhere similar. It’s hard to know what to ask. Get a notebook specifically for cc info. Questions are hard… One question will lead to another. Just make sure to write down his answers. Then when you think of new questions you have a place to write them down.
To answer with what info I have: most treatments will not interfere with possible resections. And they usually won’t do surgery within a few weeks of chemo. And they won’t do chemo for a few weeks after surgery.
Without knowing specifics, there are many treatments available without surgery. Talk to your surgeon about all options. Ask as many questions as you can and write everything down. I can’t stress that enough.
Good luck! And I hope you can get that second opinion easily.November 16, 2013 at 12:47 am #77213willowSpectatorLainey and Percy have very good advice. Most if your questions are common and will be addressed as the treatment plan unfolds. Just to answer one Q: if there will be a resection, they stop chemo for a bit to make sure the patient is at best fitness (and blood cells and pkatelets are all at a good level since chemo suppresses them).
We’ve all been where you are… Head literally spinning. Best to you and your dear husband as you seek more opinions. Some simply require only the records rather than a visit so that can help if the specialist is far away.
WillowNovember 16, 2013 at 12:45 am #77212surfer1SpectatorThanks Lainy and Percy for your replies. Dr. Imagawa is a liver specialist (http://www.faculty.uci.edu//profile.cfm?faculty_id=4828) and treats cc.
Also, Is there a place in this website that defines some of the acronyms? Specifically, I’m looking for what RFA, IRE, IMRT, and SBRT are.
November 16, 2013 at 12:19 am #77211lainySpectatorDear Surfer, if I may make a suggestion write down all answers so you can refer to that later or use a recorder. I think you did just fine on the questions.
You are not alone as we all started here blindly. Who ever heard of something one cannot even pronounce. A cute Teddy story, Marion likes this one. We went out to eat with some visitors and Teddy of course was wearing his CC bracelet and his friend said, “Teddy what is that bracelet for?” Well Teddy being his old Sicilian self says, “Oh, that’s my Cancer ANGELO Carcinoma!” Leave it to my Teddy make CC a Sicilian! Wishing you the best of luck and we will be most anxious to her what happens.November 16, 2013 at 12:11 am #77210pcl1029MemberHi,
This link may help too.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=81006#p81006
God bless.
November 16, 2013 at 12:08 am #77209pcl1029MemberHi,
No matter what, the best bet for you is to get a second opinion from a liver surgeon,not just an oncology surgeon. Liver surgery is a specialty of its own. I would send CTscan disc to Dr. Shelby at USC or UCSF to take a look. DR. Chapman in St. Louise or at Mayo clinic liver surgeon . You will be surprised .
I don’t think there are enough time for more questions and hopefully it will be a simple answer.God bless.
November 15, 2013 at 11:37 pm #9132surfer1SpectatorWe meet with the surgical oncologist at UC Irvine (Dr. Imagawa) on Monday. We are anxious about it and I was hoping to get some input on what to ask him.
Some background, my husband was diagnosed in early September 2013 with stage 1 intrahepatic cc. The tumor was 6cm and too large/close to a vein to do surgery. He started chemo (gem/cis) and completed 2 1/2 cycles (his counts were too low to complete the round his week). He had a ct scan this week that we will review with the doctor on Monday.
We are hoping the tumor has shrunk enough to do surgery. If it is, my questions for the doctor are : when can it be done? Does he continue chemo up until the surgery date? What exactly will be done in the surgery? Are additional tests needed before surgery? How long will he be on the hospital and recovery? What treatments will be done following surgery (additional chemo?)? How often will he have follow up scans?
If surgery isn’t an option, my questions are: what options are there? Will having another procedure done rule out the possibility of a future resection? Can you refer us to USC for a second opinion even though our insurance doesn’t contract with them? Can you refer us to UCLA for a second opinion?
Does anyone have any suggestions on what else we should ask the doctor? Neither of us has dealt with cancer or any surgeries before so I feel like we are going in blind except for what I’ve learned on this site.
Thanks!
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