July 9, 2021 at 4:01 pm #101149bglassModerator
Welcome to our community. I am sorry that your mother received this diagnosis.
Certainly your mother should feel comfortable with her doctors, and if she is not comfortable then it is reasonable to consider changing. There is a tool on the Cholangiocarcinoma Foundation website that can help you identify doctors who have experience with our rare cancer. I will add the link to the bottom of this message. Hopefully there are other doctors from the same hospital with cholangiocarcinoma experience. It seems unlikely to me that there would be any problem with her care if your mom changed doctors – everyone in the hospital is a professional and such changes do happen at times.
I would add that there are a few doctors who are experts in their field, but not the best in terms of bedside manner. There may be moments when a patient wishes the doctor had better manners, but tolerates this failing because the standard of care is very high.
If your mom decides to make a change, be sure the new doctor has a lot of experience with this cancer.
I am happy that the chemo has reduced your mom’s pain. For the chemo side effects, you may wish to see if the hospital has palliative care resources to help with them. Palliative care is a separate medical specialty that helps patients manage side effects or pain from a serious illness. I found in my own case that the oncology center nurses had a lot of good tips on how to cope with side effects.
Please stay in touch and let us know how your mother is doing. She is very fortunate that she can count on your help and support as she pursues treatment.
Take care and regards, MaryJuly 8, 2021 at 10:23 am #101148Vibras22Participant
My mother was diagnosed 3 months ago. The chemo has significantly decreased the horrible pain she endured for a month and a half but now she experiences almost all the side effects of chemo – nausea, fatigue, weakness.. etc. We go to a wonderful hospital – the chemo nurses are amazing, receptionists, basically everyone we’ve encountered except the doctor. There have been multiple instances where I feel that he is not 100% there with this. For example, during one appointment, he was texting on his phone the entire time while talking to us. I also feel that he gets irritated when we ask questions. Sometimes my family repeats questions because it is just so much to take in. Besides that, my parent’s native language is not English so I often have to rephrase questions so they can understand. Lately, he was very straightforward and told my mom that if she stops, she will die. While I do understand that it is good to be straightforward, I did feel a little frustrated because it does bring down my mom’s hope in this process.
I am contemplating changing him as an oncologist but i do want to remain in the same hospital. I am just afraid about how this might impact her level of care. I am assuming there are other doctors in this hospital since its so big dealing with the same type of cancer but they might be colleagues and might be awkward. I am posting here to see if anyone has had a similar experience. I know that as a patient I have the right to change providers but I am worried that this might jeopardize my mom’s care. I do want to remain in the same hospital but I’m just wondering how the level of care, treatment and etc might change.
I really appreciate anyone who can respond to me and share any type of advice related to this.
- You must be logged in to reply to this topic.