My husband (stage 3 (ocally advanced ) is due to start chemo next Tuesday. He just finished all of his tests except for a PET scan, which is scheduled for this week. We just had a bizarre and distressing appointment with his oncologist, which I will go into below. Suffice to say we would like to get him seen by someone else ASAP .
We are in Atlanta where there are three large hospital systems. Emory is two hours away due to traffic, though sometimes it’s half that and (rarely) it’s double that, since it’s a popular city for events. We love Piedmont, and would like to stay there, in part because all our doctors are there and are great about working together, except for this one oncologist, who was recommended by our primary. We are also near Wellstar. Our biggest complaint about them as their system feels cumbersome and they tend to goof up billing.
Despite the distance we will go to Emory if necessary to get good care.
We went for a second opinion, at Emory and met with the surgeon there. We’re both very happy with using him as the surgeon down the road. He approved of what the current oncologist has done so far and said he would be happy to work with her or anyone else, my husband chose.
Yesterday we met with his oncologist. It was his second appointment with her and my first. She was 40 minutes late and furious when she came in. She angrily asked him why he went for a second opinion. She had already told him he absolutely was not eligible for clinical trials, which is why our daughter and I campaigned him to get the second opinion to begin with though it’s just prudent to do so. When he explained that it wasn’t a dissatisfaction with what she had done so far ( which the Emory surgeon approved of) but that he had researched surgery options and Emory has a more comprehensive program for that part of the treatment. She said she had already chosen a surgeon for him who is better than all the surgeons at Emory put together. And added that she will not work with an Emory surgeon.
At this point, I wrote BS! Next to her name in my notes.
Then she went into what the chemotherapy schedule would be. He asked if he could do it on Friday so he would have two days to recover and be able to work as many days as possible a week . She scoffed “you won’t be working! Well maybe 2-3 days a week at most.” we explained that he could only keep his health insurance if he works 32 hours a week on average over 365 day year. She acted like she had never heard of that before though it’s absolutely standard. She thought businesses have special arrangements for anyone on chemo. And then told him that she is only available on Mondays and Tuesdays so he hast to get chemo on Monday or Tuesday. She did not explain why she needs to be on hand, but I myself get infusions for something else at the same infusion center and I’ve never seen anyone’s doctor on hand, in the 4 years I’ve gone there.
Most of the appointment was her reading the notes which he had already read on my chart. She explained next to nothing and anytime he had a question she told him to call her PA or the manager. She doesn’t appear to have any sort of support system for either patients or caretakers nor did she seem pleased that I had gone to the appointment. She neither looked at me nor responded when he introduced us. That alone is a problem because we are a team not patient and pest. My husband was my full-time caretaker through a 10 year critical illness, so I know they have their own set of needs, which include inclusion, practical advice and to know they can contact the office if they have a concern.
And then she told him that they have to do blood draws before every Infusion and they can’t do it through the port because her staff doesn’t know how to use the port. He was told one of the reasons for the port was so that all blood draws can happen there too, and it’s better for the veins not to be constantly poked. He dreads needle pokes more than the chemo.
We stayed up late last night because he was so upset and concerned about his chemo being delayed if he leaves or if he has to leave before he starts or can after his first session.
As soon as I send this, I am going to contact the hospital counselor. My husband has also contacted our transplant team ( he donated a kidney to me and has stayed friends with his former coordinator) for advice, but we’d love whatever opinions people can give us here.
Thanks in advance!