After unsuccessful whipple (no metastasis) what are the options?
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Annabel……The European Clinical Trials Register can be accessed via this link:
https://www.clinicaltrialsregister.eu/Scroll down to: ” Please click here to continue to the site”
and enter your search criteria (cholangiocarcinoma) bile duct, hepatobiliary, etc.
in this window:
https://www.clinicaltrialsregister.eu/ctr-search/searchThis is only for general overview, as criteria of enrollment must be discussed with your Dad’s physician.
Targeted molecular agents may be considered as well however; it would require a biopsy identifying the applicable mutations.
Hope this helped.
Hugs,
MarionHi everyone, thank you so much for all of the replies up until now. It really does help a lot.
I’m going to see my father again tonight and tomorrow; hopefully I’ll be able to provide you with some more details after those visits. As for as I can tell, the reason why it’s not resectable is because the branches of the removed tumor are near a main artery. As for the chemo, my dad’s doctor mentioned that there have been similar cases where it’s been used, but that the numbers aren’t great; he was pretty vague on that though.
We’re also going to ask for a second opinion tomorrow and are looking online for possible trials. If anyone knows of any relevant trials, that would be incredibly appreciated.
And again, thank you for the quick and helpful replies.
Annabel…..a warm welcome from me as well. Have you searched out a second professional opinion and have tumor samples been tested for molecular alterations?
Perhaps it is possible for you to connect with The Netherlands Cancer Institute: http://www.nki.nl/
Please stay in touch. We care.
Hugs,
MarionHi Annabel,
I would also like to welcome you to our group. Here you will find members with lots of areas of expertise and a great deal of compassion to help you get through this difficult time.
When I read your post, I was perplexed. Typically, the pathology lab is used to identify the type of malignancy and also to determine whether or not the surgery had “clear margins” (meaning the full tumor was removed and the area remaining that surrounded the tumor was free of any stray cancer cells.). Stating that branches of tumor were identified in the pathology results doesn’t fit with this. I’m guessing that the doctor meant that pathology results show positive (cancerous) cells in two areas samples were taken from so they assume there are “branches” remaining. You may want to clarify that point with the doctor. The other thing that seems off to me is that the top medical centers use a process during surgery wherein they take samples and quickly run them to the lab and then wait for feedback on whether the samples are free af cancer cells. If they are positive, typically the surgeon cuts a bit deeper and runs the sample to the lab again. This is repeated until they get “clear margins” or cannot cut further. (It is possible that very tiny microscopic cells may only show after the surgery is concluded and the samples are cultured over a week or so, as in my husband’s case). It doesn’t sound as if this approach was used for your dad. I have to wonder where he had his surgery. My husband and I learned how very critical it is to be treated by a medical center that is very experienced with cc, as they use the latest and most effective treatments. I would strongly suggest you get a second opinion or two from one such center.
Wishing you all the best.Debbie
Hi Annabel,
I too would like to welcome you to the best place you can be for coping with this disease. Sorry
that you had a need to find us tho’. I agree with Lainy that something just does not sound right and would go for a 2nd and maybe even 3rd opinion on this. Definitely use the search engine to see what pops up. I’m sure others who live over there and have more knowledge of what to do or where to go will be coming on soon to welcome you and give you some suggestions. Everyone here is very helpful and supportive and will do what they can to help you out. Take care and keep us updated as to how your dad is doing.Hugs,
DarlaDear Annabel. WELCOME TO OUR REMARKABLE FAMILY and the best place to be for CC support. I have not heard of this in my 10 years on this Board, plus my husband had a Whipple. Why not chemo or Cyber Knife? Just does not sound right and yes, I would seek another opinion post haste. I would ask them where you could go! Doctors just do not give up!!! I am not familiar with Surgeons out of the USA but I know we will have some really smart members chiming in on this. I feel so bad for you and your husband but that won’t help. The weekends are a little slow on here but hang in and hang on, I know you will get some advice. What was their reason that the rest of the tumor could not be removed? I could see if one side went awry but 2 sides? Sending you my very best for you and BTW, we have a search engine at the top of the page and if you type in Denmark you may get some suggestions from older posts. Please keep us updated as we truly care!
Hi all,
I’m new to this forum and wanted to ask some questions here concerning my fathers (54) cholangiocarcinoma. He had the Whipple surgery two weeks ago and was told everything went according to plan – no lymph node involvement or metastasis. The only thing we had to wait for were the lab results – which came back yesterday. The surgeon told us that they could remove the tumor, but told us that the tumor had grown in such a fashion that the results showed that two incredibly small side-branches of the original tumor still remained and are non-resectable- nothing more they could do about it. According to our surgeon there’s no preventive chemo/radiation or other possibilities whatsoever and it’s a matter of waiting untill this agressive form of cancer spreads.
We find it so hard to believe that only because of those two little branches still inside, all hope is lost. My question then is if any of you has ever been in a similar situation or knows something about preventive measures ? Maybe doctors in Europe we can still contact?
Thank you so much in advance,
Annabel
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