Topic: Anticipating first visit to oncologist - advice?
I am grateful to find this forum and wish to convey my best wishes to all of you. CC is a tragic disease, but it seems there is much to be hopeful and positive about and the stories here are full of inspiration.
A close friend of mine (JJ) has just been diagnosed with unresectable cc ("bile duct cancer" - diagnosis of unresectability made surgically). I'm not sure whether it is intra- or extra- hepatic, but I understand that the cancer has metastasized and/or involves the portal vein. JJ is in her early 30s and is otherwise healthy.
Obviously, it is very hard to deal with this difficult news. It has been hard because she hasn't been told much other than "you have months to live" , and hasn't had access to any specialists other than the palliative care people while she waits for an appointment with an oncologist. (It's been over a month since the surgery but there is a waiting list to get into the cancer clinic here - is this typical? it's been very trying....)
On reading the postings here, I've been thinking of ways that I can be helpful to JJ. One way would be if I could get your advice on what she should expect and ask during her first visit to the oncologist, which will happen (finally) next week. I would be grateful for your thoughts on what one should be sure to ask about. It seems that there is no "standardized/conventional treatment" for this disease, and I know that it is sometimes difficult to get information about clinical research from many physicians, who are often overburdened and may not be aware of everything.
And so I'm gathering a list of questions that she should ask about. I apologize if some of this is repeated in other forums - I've read as much as I can. So far, the biggest leads regarding potential experimental therapies seem to be:
- photodynamic therapy
- dendritic cell vaccine therapy (and/or other immuno-therapies)
Are there others that she should ask about or investigate? Can you share your "things I wished I had known before my first visit to my oncologist"?
I am grateful for your advice, which I can then pass on to JJ.
Thanks for reading. My thoughts and prayers are with all of you.