Patient Experience: 10 Days & No Patholigical Diagnosis

Today is Friday, the 4th of October. Spoke to my mother this morning and she said that my father is feeling a bit better. Apparently on Thursday he didn’t sleep well, he had to take pain medication twice, and pain upon urination.

On Tuesday morning my father went in for a stent placement. Typically the urologist will place a mesh like stent, but in my father’s case they place a metallic spring like coil as a stent due to something on the other side of the ureter causing it to pinch close. I spoke to the urologist and he commented that the procedure went well. He can tell there is something on the other side pressing against the ureter, so hence why he went with a more rigid stent.

My father left shortly their after, went home, and felt pretty well. Well, with the exception of pain upon urination. This is to be expected since they just did this type of procedure.

My mother and father were still awaiting to hear from the primary care physicians office on appointments with nephrologist and oncologist. The oncologist office called and said they would not be able to see my father until the following week. I had to step in.

I told the nurse that unfortunately that is unacceptable. My Dad is 7 days out, and by the time they can schedule an appointment it would be day 14. In totality, it would be day 19. I also commented that that means the oncologist sees my Dad, orders additional tests, may refer to surgical oncologist, and it could potentially by day 25-30 before they have a diagnosis. Which means if they present my Dad to a multidisciplinary conference or tumor board, that it could potentially by day 30-40 before he has a treatment plan.

The nurse was miffed. She asked if I wanted to speak to the oncologist. I took the opportunity.

In speaking to the oncologist he asked why he was seeing my Dad without a diagnosis. I informed him that the primary care physician felt as a medical oncologist he would be better equipped to manage the care of my father, and to drive the care team to a definitive diagnosis.

The oncologist said that is fine, but I will need to see him next week.

Again, I told him that my Dad is NOT waiting until next week, he needs to see him this week.

The oncologist rebutted and said that his schedule was tight due to his partner going on vacation.

My response was I am sorry to hear that your partner is taking a break, however, my Dad needs care, and you will fit him in your schedule.

The oncologist said maybe we should refer him to a surgeon, and I am sure the surgeon can work your father up.

Finally I suggested the following: Doctor, why don’t you get on the phone and discuss my fathers case with the primary care physician, the surgical oncologist, urologist and among the 4 of you, you figure out who is going to manage my Dad’s care, what the workup plan is going to be, and what the initial impression is on a treatment plan. Then we will see the ‘quarterback’ who can order the appropriate tests and we can get a diagnosis.

Again, another physician not too happy with me and explaining I do not understand the complexity of cancer.

I shouldn’t, but I did…really? For your information, the cancer center you work at currently, I built. I built it, I hired all the people, I achieved all the accreditation and awards. I have worked with more cancer programs, was an initial pilot site to bring clinical trials from the academic setting to the community clinic. I have improved more programs, more bottom lines, and improved the care of patients all over North America. You do not realize that I know your world, I know what can be done, and I will not settle for anything less than the right workup, right treatment, all at the right time.

Needless to say, my father say the surgical oncologist the following day at noon.

Consult went well. The surgeon had spoken to the team of physicians. He said gave us the plan. Get tissue, get labs with tumor markers, get a PET once the diagnosis comes back, and if it all still looks favorable, let’s operate.

My Dad felt good to know that he had a physician on his side. My mother felt better about knowing what the plan would be moving forward. I was satisfied because my parents are being taken care of appropriately.

Just before leaving the surgeon asked, how did you get in to see me so quickly? It usually takes 20 days to get an appointment.

I just smiled and said we must be lucky.

Scorecard as of Friday:

15 days total; 10 days without a diagnosis; 2 imaging studies with only a small amount of value; 3 cost discussions; 5MD’s; 1 stent; 1 appointment sent away due to radiologist being gone; 1 GI surgeon; 1 workup plan; 0 Diagnosis; Tentative treatment plan

My Dad is not feeling to well, but at least his anxiety and pain is controlled. My mother is in good spirits.

I still want to push the system. It’s not about what it is, it is about what it can be and should be for those we serve as clinicians and administrators. Screening to Diagnosis; Diagnosis to Treatment; Treatment to Normal Routine; As quickly and safely as humanly possible.

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