pcl1029

Hi, Melissa,

Nothing can express the sorrow when someone dear to us passed away.
I am sorry for your loss.
God bless.

Hi,Joe,
Thanks for your update.
I know, as a patient myself, this is not a journey we want to venture into.
And I know , most of us have to fight until the end with or without a miracle.
With my heart, I sincerely hope for the best possible outcome for you.
Joe, may the Grace of Jesus Christ, extends His hands to heal you as
He extends His On me.
God bless.

Hi, Jf,
Thera are a lot of info on the experience forum about RFA treatment and other treatments radioembo or chemoembo under the radiation treatment options on this web site.which I think will apply to case also.
As a patient of this cancer for 40 months , even with complete resection, and adjuvant chemotherapy to follow afterwards,recurrence is between 50-75%.
If you have symptoms like clay color stool,dark brown urine and itching or visions problems .it will be too late for surgery. Surgery provide the only possible cure for this disease and you are only 59 years old. Most of the local community GP or even Gi doctors have limited experience on cholangiocarcinoma and your ERCP GI specialist may not be correct on his statement. i do not have any symptoms both when I discovered my first tumor that was 8×6 cm and the recurrence with the 2x>3cm tumor. So I do not think you should wait until any symptoms to show up as your ERCP GI doctor told you to do so.
As a patient, I monitor my CCA every 3 month with Ct scan and lab work like CMP,CBC CA19-9, CEA, MAGNESIUM AND PHOSPHOROUS LEVEL.
And you should do the same or at least a Ct Scan every 3 month.
I Like to do experiment on myself and I found out ,in my case, my recurrence took place about 6 month after adjuvant therapy stopped ; and the tumor grew from 2 x2CM ( the 6 month CT scan after stopping the adjuvant therapy) to a 3x>3CM tumor on the surgical report in about 10 month.So I estimate it may take about a year, in my case to grow an intrahepatic tumor that is about the sizes of a walnut.
My advice to you is to get CT scan and lab every three month, go to another ERGP GI specialist for second opinion( prefer a liver surgeon) and get a 2nd opinion on interventional radiologist and the medical oncologist.
.Mass general hospital and John Hopkins are top hospital that are relative close to you and I will start with them. You are young, 59 and I am 63.
RFA is as effective as Resection if the size is < 3cm and few than 3-4 tumors in the liver if the location is allowed.
Keep in touch and keep on reading, there is a lot of info here about surgery,radiation and oncology that you can use.
Until I can truly read word by word on your CT scan report,then I can provide my experience for you as reference.
You can send me email thru this site to me too if privacy is of concern.
I have a feeling that , once you are well informed about your options, you can have a better outcome that just palliative care.
God bless.

Hi, Marion,

thanks for the link.

It shows how little I know about the new development in the radiation arm of the treatment for this disease.

God bless.

Hi,
Where is the tumor located?
Where is the bile ducts your are referring to?
Do you have extra hepatic(outside the liver) or intra hepatic(inside) bile duct tumor?
What exact the name of the procedure that you are talking about for RFA(radio frequency ablation)? Most of the time RFA is used for bile duct cancer inside the liver. I had 2 of them done in the liver but not outside of the liver.
Cyberknife,PDT are for bile duct cancer outside the liver.
Please forgive me asking all this questions;because if I do not know the exact location of the tumor ,I cannot do anything to share with you.

EXACT quotation (copy word for word )from the August 1 CT scan(the latest report) you mentioned is highly recommended in understanding your situation.
Keep in touch and
God bless.

Hi, Joe,
Hope everything is ok with you on your last CT scan result; just to say hi ,
Keep in touch,
God bless.