November 15, 2014 at 3:32 am #85435judymMember
I’ve found the 2 recent webinars very informative and appreciate them very much. Thank you for organizing them and reaching out to the physicians.November 13, 2014 at 9:31 pm #85434
The recorded session will be on the website within a few days. Follow-up questions can be posed on this site and will then be forwarded to Dr. Kato.
Don’t worry Porter, You will be heard
MarionNovember 13, 2014 at 8:52 pm #85433pfox2100Member
Thanks. I am super bummed i can’t attend. But I am a working woman again and that’s a good thing. Otherwise I’d be right on this webinar.
November 13, 2014 at 4:56 pm #85432
Porter…..I made note of your latest question. Glad you reached out to Dr. Giles. He is an invaluable resource to our members.
Don’t worry Porter for not attending the life presentation. As always it will be recorded. Have a good day.
MarionNovember 13, 2014 at 2:41 pm #85431pfox2100Member
Marion, I had one more question. Does size of tumor if removed during surgery predispose or indicate any likelihood of recurrence?
I totally forgot Ask Dr.Giles was a resource of this. So i definitely utilized that last night.
I am not able to attend the webinar, will notes and highlights be posted to this sight afterwards?
PorterNovember 13, 2014 at 9:24 am #85430angelmarSpectator
I trust in Prof Garden who was as aggressive as he could be on doing my extended liver resection 4 years ago.
I trust in the Edinburgh team at the Royal Infirmary that if they could operate they would operate, now that there is a highly suspicious mass around area of portal vein….where it was excised.
However, Prof Garden was not in the MDT who discussed my recent scan results.
I am wondering too if someone else e.g. Dr Valle/Mayo Clinic would take a chance and operate on me so will contact him…nothing to lose.
The more I’ve read links in our website the more I see how each subtype requires different surgical and possible chemical treatment. Clinical Management Guidelines for cc are being reviewed by Scottish HPBNetwork this year. Though as someone says above…some surgeions just read black and white.
Looking forward to the webinair today.xxNovember 13, 2014 at 2:38 am #85429
A little yellow sticky that says – “Hey. Trust me, got you covered. There are people out there who are in much worse shape than you are, so be patient.” would be nice. But Aaron had an answer for that. Faith needs feedback once in a while.
DukeNovember 13, 2014 at 1:48 am #85428angelmarSpectator
Must mention Maggie’s centres once again re understanding what cancer patients/familes/carers go through and their support. Andy Anderson, Head of Edinburgh Maggie’s is going to Japan as they are itnerested over there in opening centres and they have an online centre too.
Porter – 4 years after extended liver resection and Xeloda I look fantastic and feel terrible. Need naps throughout the day and it’s difficult because people expect me to be back to normal. Now vindicated (how terrible to feel one needs that) since cancer has returned and next lof of chemo will cause hair loss so immediate sign for the outside world.
After the operation I am sure it was raw foods, juicing, meditation, yoga, green tea and visualisations which helped me have clear scans for so long. Helfpul comment before surgery was by surgeon saying it would mean months and months of pain. Which was true. He also said it was a pity it wasn’t breast cancer as it could be cut off and dealt with. Unhelpful comment by registrar was some people resume work in 2nd month of work.. I tried but bloods went beserk so had to retire early from a job I loved causing financial implications along with loss of ‘position’ in my life. Felt guilty that I wasn’t working the way other cancer patients did.
Hope this makes sense.xxNovember 13, 2014 at 1:25 am #85427iowagirlMember
Marion, I won’t be at home tomorrow…have doctor appointment and a luncheon, but have something I’ve been wondering about concerning surgery for ICC.
At my followup at Mayo, I asked the surgeon if she would operate again if the cancer returned (assuming there wasn’t something about the presentation to make surgery not possible. Her response was that if it came back in 6 months….no, because she would consider it an aggressive cancer and apparently too prone to coming back again. But, if it was two years out from surgery, then yes, she would consider resection again to remove the cancer. But, what about between….that’s 18 months that isn’t addressed by her. I know I’ve read that other members of the boards have had repeat resections even within a year of their initial surgery for a recurrence. I see surgery in difficult situation as a very aggressive attack on the cancer and thus, if the cancer is removed, especially before it has spread outside the liver, there’s more of a chance to keep it at bay.
1. What is the criteria for repeat resection for ICC?
2. Is there less or more of a chance for recurrence with a repeat resection vs some other type of less invasive procedure?
Julie T.November 12, 2014 at 7:07 pm #85426lainySpectator
Hey, Duke, meltdowns permitted!
I asked for strength. God gave me difficulties to make me strong.
I asked for wisdom. God gave me problems to solve.
I asked for prosperity. God gave me brawn and brain to work.
I asked for courage. God gave me dangers to overcome.
I asked for patience. God placed me in situations where I was forced to wait.
I asked for love. God gave me troubled people to help.
I asked for favors. God gave me opportunities.
I received nothing I wanted.
I received everything I needed. By Aaron HoopesNovember 12, 2014 at 5:44 pm #85425
No reason for an apology, Duke. What Matt is questioning (as are you) is the reasoning behind the decision to remove a tumor although, the cancer is metastatic. Some surgeons do so whereas others do not.
Please let’s make sure to attend this web presentation. I will be one of the panelists sorting through the questions prior to submitting it to Dr. Kato, following his presentation and those questions received during the live event.
MarionNovember 12, 2014 at 2:28 pm #85424
Sorry about the meltdown folks, Just had a major pity party last night. Feeling better now.
DukeNovember 12, 2014 at 4:49 am #85423
Following up on Matt’s post: getting a majority of doctors to agree on a standard set of guidelines borders on the improbable, especially from those without a great deal of experience with CCA. You can’t get in trouble if you stay in the middle of the pack. I believe there are oncs out there who are making treatment decisions based on textbooks, not experience. And some add their own spin/conservatism on it. So, unless these new guidelines are carved in stone, they won’t be universally accepted.
This is why I find palliative surgery so intriguing. In my mind, if you can cut out some of the cancer, that has to be as effective as killing it with chemo or radiation, without the side effects. And if you can reduce the tumor sites to just the lungs and lymph nodes, other treatments should be more effective than chemo. I’ve been told that my chemo is going after tumors in the liver; anything else is bonus. ==> palliative care.
There’s a lot more I’d like to say but I’m afraid it would be too emotional.
I’ve climbed down from the soapbox and the whine and cheese is finished.
DukeNovember 12, 2014 at 3:19 am #85422malinger2Spectator
Porter, I totally agree with your questions and what you are feeling after resection and chemo. My husband has just finished chemo after his surgery and feels exactly the same way. He is emotionally lost without his weekly trips to City of Hope, searching for support and information about his new normal. When does taste come back? chemo brain leave? food? CT scans more often or rely on lab work when his labs were normal pre diagnosis. Odds of cc returning, etc….
Thanks for verbalizing what we have been scratching our heads over for the past few weeks.
MelindaNovember 11, 2014 at 11:50 pm #85421
Matt….excellent questions. Would you like to forward it while attending the presentation (my preferred choice) or, would you like me to address it in the question and answer period following the presentation? Either way, I will make note of Porter’s and your questions.
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