January 9, 2015 at 5:11 am #86138marionsModerator
angelmar…..excellent questions. Thank you for offering this to our patient community. As mentioned by you some questions are individual to your situation however; much of it pertains to many others well.
MarionJanuary 8, 2015 at 9:02 pm #10833angelmarParticipant
I haven’t been in touch for a while but events moved rapidly after a recurrence was diagnosed in my 4th year scan. Before continuing though, I do wish everybody here a Good New Year, let’s try and make it as good as possible. I can see the strength that emanates from the posts to help us maybe collectively do this.
With energy being very low having suffered from chronic fatigue, it took me a long while to try and formulate questions which were buzzing round my brain and which I felt important to ask at my oncology appointment.
I’ve taken the liberty to list them here in case they are of use. Apologies if they are too simplistic. Most people using this site will know the answers and that they also depend on each individual case. My consultant, Dr Wall, at the Western General Edinburgh, answered my questions as fully as possible and painstakingly taking time to ensure I was able to understand the answers given.
Questions collated for oncology appointment after 4 year scan showed recurrence with inoperable diagnosis. (2 LFT blood tests within normal perameters 1 month prevously.
1. Why is this recurrence classified as inoperable? Other people have up to 7 resections over a period of a few years.
2. What exactly is the location? Close to the bile duct? Is there bile duct obstruction? Hepatic artery? Where on body…need to visualise?
3. Could the ”highly suspicious’ “excess tissue” be anything other than recurrence e.g. scar tissue or inflammation? How could this be validated e.g. biopsy? Pet Scan?
4. Why did the Bilcap trial not consider including recommendation of 6 monthly scans given cc is a rare cancer and statistically small patient base?
5. Is there more merit in rechallenging my body with Capecitabine in conjunction with Gemcitabine? The cancer proved sensitive to it before, giving a gap of more than 3 years with recurrence in the 4th year? It was a durable regime, my body tolerated it well and would be less restricting.
6. What are the merits of Capecitabine used in conjuction with Gemcitabine instead of Gemcis according to latest statistics? Would funding be feasable due to above reason i.e. if not enough clinical merit for Gemcap the definitive evidence of my body sustaining Capecitabine is there.
7. Would SIRT be a possibility? Radiation? Cyberknife? Why not?
8. What effect is there if treatment delayed by 1 month to spend quality time with family given the diagnosis and prognosis?
9. Severe attenuation of portal vein……..I though according to operational notes it had been excised.
10. How fast do cholangiocarcinoma cells divide? How large is the ‘golf ball’ one month later?
11. Mistletoe therapy. Request for support/approval
12. Foundation One? What do I need to do to be referred?
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