A source of knowledge

My doctor mentioned brachytherapy once and I brought up photodynamic therapy as well. I am not really the type to take no as an answer so I often bring in abstracts taken from pubmed. Right now, I dont have a tumor in my liver, they are both outside the liver so neither of these two treatments would really work for me. I do know that they do use Radiofrequency ablation here for cc so that is something you might want to bring up as well.

I have had my charts sent to Lund, Stockholm, and Linkoping so if you are not happy with what you are being told, perhaps you could ask for a second opinion. Dr. Farnebo was VERY open to sending my charts different places as was the doctor in Linkoping.

I think half of the battle is getting the doctor on your side and telling him what you want. I have never been told no to a treatment if I had studies to back up why I wanted it. I have been told no because of tumor placement though. There are several studies on cc and photodynamic therapy on pubmed. Print those out before your next appointment and see if that gets you anywhere. You have to remember Sweden is a small country so there isnt that much experience with cc. Plus most patients die before other treatment options really need to be discussed. So while they might not “do” these treatments now, it might be because there was never the opportunity or desire by the patient.

Kris

My doctor is often in contact with Dr. Farnebo and I have made the trip to meet her once. Since cc is such a rare cancer, I am sure your doctor has already been in touch…more likely being in Lund your doctor sees more cc patients than my doctor in little Kalmar so your doctor is most likely more up to date already. From what I remember of my meeting with Dr. Farnebo, she said that her contacts and referrals generally went to Lund so your doctors are likely already very familiar with her.

Good luck in your journey.
Kris

Lena,
Welcome to the site. Where do you live in Sweden? I live in Kalmar. I am not sure if you know, but Swedens expert on CC is based in Vaxjo…Dr. Farnebo. Sorry, I dont have the Swedish letters on my keyboard so I hope you can understand!

I have had wonderful experiences in Linkoping and I find the doctors very aggressive for the most part.

Kris