New to board Had RFA to Bile Duct

[lainy]

Dear JF, my husband had CT or PET Scans EVERY 3 months for 5 years. It was the only way for us to keep a handle on things and to detect a return of the CC. Along with the Scans he had LABS and ONC visits. I also agree with Percy about the symptoms and the “local” GI Doctors. If you have any questions at all or doubts or nagging thoughts they should be brought out to your Oncologist. Please keep us posted we all truly care.

[pcl1029]

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.

[jf]

Thanks pcl1029
You mentioned you had percutaneous RFA done to liver mets. I understand that it has limitations – small enough and in right area. My ERCP Dr suggested I wait until I get jaundice symptoms then investigate thru ct scan whether or not I am a candidate for that treatment. The only debate I have in my brain is whether I should get another ct scan in 3 months? 6 months? (or wait for symptoms)Just to be on safe side. I would be very bummed of by the time I got symptoms it (or they) were too large. Did you have symptoms before your RFA?

Just something to throw out there, I had a burst appendix 5 years ago and was very sick in hospital for 3 weeks. At that time I was throwing up bile and had to have ng tube put down my nose in which the bile was coming out for 2 weeks. (pretty gross … Huh) anyway if that’s not a case for bile duct irritation, inflamation, I don’t know what is. I suppose that could happen to 10 people and only 1 gets CC … Lucky me. Also my Breast Cancer was the kind that did not spread to lymph nodes so I got lucky that time …. Not this time. Just to let you know I have not been an unhealthy person most of my life, breast cancer then 5 years later burst appendix now this 5 years.

Thanks for listening

[pcl1029]

Hi, JF,
You are right that there is few or none information about this relative direct new use of RFA in bile ducts cancer on our web site .
Thanks for sharing.
God bless.

[jf]

http://www.reepl.ru/_user_files/EndoHPB20112.pdf

Sorry … Try this

[pcl1029]

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.

[pcl1029]

Hi, JF,
please recheck the link.
I cannot open the link to see whatn you have referring to.
thanks.
God bless.

[jf]

here is a link to the procedure i had done

[url=http://Http://www.reepl.ru/_user_files/EndoHPB20112.pdf]Http://www.reepl.ru/_user_files/EndoHPB20112.pdf[/url]

I will try and find ct scan report

As I understand it I have intraheptatic CC. But Dr said it was also involving hilar region. His word to me was “interesting”. I had unsuccessful attempts at left side stent placement but after that he tried right side and was successful. So I have CC up both sides. He informed me that the procedure was strictly palliative, not a cure. No tumor size was given to me – I asked oncologist and she said that really couldn’t be determined unless I had had a resection. The reason I think I was a candidate was that I maybe had one small metastisis in liver and nothing else. I have enlarged lymph nodes surrounding liver which indicates metestatic disease. I will try and find that ct report. Since I have chosen not to do chemo I am not scheduling any ct scans or blood work. I cannot have any more bilary RFA treatments now that the metal stent has been put in. He told me that from 1st Rfa to 2nd RFA the area he zapped was the same size, the 2nd RFA was done because he thought he could do a little more. I had several Dr’s in attendance at RFA treatment and also the rep from the company that makes the Rfa device. The equipment to perform the procedure was borrowed from a Boston Hospital. I was informed that it was a very new procedure and had its risks, but after suffering from jaundice I decided it was worth a shot. I feel very lucky to have had it done and to be eligible for it. I am trying to choose quality of life over a longer life. This I know is a very personal decision. As metastises arise I will try and knock them out or down.

Thanks for responding to me, I was interested to see if anyone else had the same procedure and to let it be known that this is another option. I have looked at other major cancer center sites and none of them even mention this type of RFA.

[marions]

JF…..welcome to our site. JF, I am wondering whether you are referring to a study in progress at Weill Medical College of Cornell University?
http://clinicaltrials.gov/ct2/show/NCT01439698

Quote: By using radiofrequency (RF) energy to heat the tissue in the duct(s) prior to stent(s) insertion, the surrounding tissue becomes coagulated and this may delay tumor growth and the time before the stent lumen becomes blocked. Thereby, allowing increased periods between the need for intervention and further stent implantation(s). The registry will evaluate the efficacy and safety of RFA procedures conducted for pancreatico-biliary disorders.

I am glad that you have found us and are sharing your thoughts with us.

Hugs,
Marion

[pcl1029]

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.

[lainy]

Dear JF, wow, you have really been through it! Enough all ready! Your attitude sounds good and that is part of the battle, a good attitude and to be very strong. Not sure why we have little about RFA but I bet you will be hearing from 3 people on here who may know much more than I do. Congratulations on being a survivor of the Breast Cancer. You gave us some good and interesting information, thanks for that.

[jf]

I had resection surgery done at Rhode Island Hospital which is affiliated with Brown University and RFA through ERCP at Roger Williams Hospital in Providence Rhode Island. I live in RI and my insurance only covers me for instate services. I am very happy with my Doctors.

I have done a lot of research about CC. From what I have read the initial and primary purpose for RFA treatment to bile duct was to enable the bile duct to remain open for a longer time. But studies have shown that life expectancy has increased due to the procedure. They are not sure why but it seems the RFA (while ablating main tumor) also slows down metastisis and cuts off blood supply to main tumor. I will post link if I can find it again. I have searched site for RFA but only see info about RFA for liver tumors and not the bile duct.

I am a 59 year old woman who also had breast cancer 9 years ago.

[lainy]

Dear JF welcome to our extraordinary family but sorry you had to find us. I can’t help you with RFA but I know someone will come along soon and be able to answer your questions. Did you try our search button at the top of the page? Just type in RFA and see what comes up. So glad you stopped ‘lurking’ and came forward as it is one of the best Boards there is. Also glad you have done your research as knowledge is one of the most powerful weapons we have for fighting CC. May I ask where you are being treated? It is so important to be at a major Cancer Hospital where they have treated CC before. We are also big believers in 2nd and 3rd opinions. Happy you are feeling well and don’t be a stranger now, we love updates!

[jf]

Diagnosed with CC in April 2012. 3 unsuccessful tries to put stent in. Resection attempt was unsuccessful due to CC going up bile duct too far. Had gallbladder removed. At time of resection the surgeon was able to direct ERCP Dr to better route for stent. Stent placement was successful. ERCP Dr thought I was good candidate for RFA of Bile Duct. Did 1st one in June with plastic stent and had another RFA to bile duct on August 18th and had a metal stent put in at that time.There is a questionable small metastisis in liver, the last CT scan I had about the 1st of August showed it to be less visible. I am not choosing to do Chemo as I have fibromyalgia and am already extremely limited physically. I spoke with Dr the other day and asked about possible RFA to liver tumors when they arise and whether it was worth it and he thought that it was worth it. Feeling pretty good these days, and stent is working fine so far.

I have been looking at this board for awhile and can’t seem to find any discussion of RFA to bile duct. Anybody else out there have this done? I was this ERCP Dr’s first patient to do this on, and I was his second!!

[Author]

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