The system works. Within three weeks, my husband had an MRI, CT scan and the entire spectrum of tests to help “stage” the illness. Staging helps the medical profession determine how far the cancer has spread so they can decide on the treatment plan or, to be more precise, know the next set of questions to ask.
We got to “D day” where we were waiting to find out the results. I have to admit that while I had been reassured at our first appointment that we are likely dealing with a relatively low risk situation, I was still anxious about the meeting. I have heard about this stress from many cancer survivors. I remember doing clinical rounds with a breast cancer oncologist in Montreal when a woman who had survived cancer for over 15 years told me that every visit with the oncologist is full of anxiety. While it might not be logical, our emotions too often do not listen to our “rational thinking”.
At our first visit, we had a Fellow and a staff oncologist treat us. This time the door opened and a woman we had not previously met walked in and introduced herself as a Fellow. While we fully understand that when you go to teaching hospitals you will encounter many trainees, the concept of continuity of care and caregivers is very important to clients. We liked the team in our first visit and were not ready for a new face. Needless to say, she did not have our trust. She proceeded to say that the results are good, the lymphoma is localized and we need to see a radiation oncologist. With this information, which was delivered in two minutes, she was ready to walk out of the room.
Well, not so fast. When I asked to see the oncologist, she wanted to know why and said she might be able to answer the questions. She also tried to reassure us that they had discussed our CASE (I hate that term) as a team.
Lesson 1: Remain in control and make sure that you ask for what you need.
Lesson 2: Be prepared before you go to the appointment with your questions or information you want to know ready
I thanked her for her willingness to answer questions but reiterated that we wanted to see the oncologist. She was very polite about it and left the room. The oncologist then came in the room and he was totally OK with our request. While the Fellow had thought we were done, we spent 20 more minutes with the oncologist. We wanted his opinion of next steps; we wanted options. While the oncologist stated a few times that we need to consult with the radiation oncologist before we can make final decisions about treatment, plans, he stated that one of the options might be to do nothing and observe the site since it is localized. My husband wanted more information on why chemo is not an option and how often he would need a CT scan if he chose no treatment. This is where the oncologist was very much evidence-based, which I really appreciated. He explained that based on the current literature chemo is not recommended and frequent CT scans will not add any diagnostic value while adding harmful radiation. While both of those comments are probably correct, based on my husband’s previous experience, he was not fully satisfied with these answers. (His earlier treatments were different but had resulted in 18 years of being cancer free.)
Lesson 3: Health care professionals need to be aware of their patients’ previous experiences and integrate them in the discussion and explanations.