I’ve decided to ditch my oncologist (gyn/oc = gynecological oncologist).
The protocol for high grade serous epithelial stage 3B ovarian cancer is 5 years of follow-ups. During those 5 year Dr’s are supposed to see you every 3 months, draw a CA125 every 3 months and, if there is a rise in the CA 125 or symptoms, a cat scan. My Dr, though, one year after completing chemo, said to me “you can come in whenever you want. It’s up to you. I don’t think I need to see you unless you’re worried”. This has led me to 2 conclusions:
- he’s not concerned about my long term well being
- he’s a surgeon. He loves me when I need surgery; not so much when I’ve gone into the waiting years.
He’s the crisis guy, not the maintenance guy. He’s the Er doc, not the hospital internist.
Two other things happened. The 1st was a cat scan. It was completed at 4:30. At 8:00 the next morning I got a call from his office stating it was fine. I’ve had cat scans misread before, so I asked 2 times “did the Dr. actually view the pics, or did he just read the report” and I was assured, 2x, that he had seen the actual pictures. I accepted this as truth because I thought he was in the same network in which I’d had the cat scan done. I later found out that isn’t the case, so I’m wondering how he would have had access to the actual pics 16 hours later. Seems doubtful. This means his office staff don’t hesitate to lie, and he doesn’t worry about looking at the actual scans for his late stage cancer patients.
A week later I had my CA 1245 drawn in preparation for the 3 month check up I insisted on, despite his claims it was unnecessary. A few days before the appointment I got a call from his office saying “Good news; Your CA 125 is fine”. When I asked what the actual number was, I found out it had increased for the 3rd time over the past 3 draws. Yes, it’s in “acceptable” ranges, but the CA 125 is tricky. It works for some women, for some it does not. There is no way to know if it is a reliable marker until a woman has recurred, and, since I have not, we don’t know if it’s reliable for me. Given this, protocol says he should be concerned.
So, as much as I liked him as a surgeon, I am done with him as my cancer Dr. When the appointment came around I decided not to go. If you are in the medical system you know what an “appointment” means. It’s not like getting your haircut, or an appointment for teeth cleaning. A medical appointment, and in this case an ovarian cancer appointment, goes like this:
- You drive or take the take bus to the Dr. The least amount of travel time, if you are really lucky, is 15 minutes. My travel time is 45 minutes.
- You get to the hospital and wait in the registration area, which can be anywhere from 5 minutes to 30 minutes.
- After registering at the main desk you go to his/her office, where you again register. This most often involves signing what is supposed to be an anonymous form, but is actual just a list of names, each name being crossed off as the patient is ‘proceeded’, but the name remaining visible to every other patient.
- You stand behind the glass that separates you from the receptionist while she finishes whatever she is doing. When done, she will look at you (most likely for the 1st time) and hand you update forms to complete.
- You sit in the waiting room. This part can take anywhere from 5 minutes to 3 hours. And, you have no way of knowing which it will be.
- You are taken back into the exam rooms, weighed, vitals taken, disrobed, and wait, practically naked, for your Dr. to come in. Again, 5 minutes to 30 minutes with no idea.
- The Dr. comes in. The nicer, appropriate Dr’s come in with a nurse or resident, shake your hand ask you how you are, and glance at your chart, before having you spread you legs for all to look at/feel.
- After the exam 1 or 2 things can happen. In the case of the Dr I am leaving, he says “everything seems good. come back whenever you want. good to see you. bye” and leaves. Most other Dr’s have you get dressed and deliver the news that everything is fine in a different room.
- Re-dressed, you head out to the reception area, wait to be acknowledged, and make your follow up appointment.
- When you leave, you most likely pay a parking fee, or a bus fee, and head home.
The quickest this process has ever happened for me is 3 hours. The average is 4 hours, some are longer.
Here is the Truth: This is How It Works.
It doesn’t matter who your Dr is, how great the office staff is, how great the Dr is…..this is the process. It is exhausting, frustrating, humiliating and, more often than not, fruitless.
Most people can’t relate to this. In fact, they won’t understand it until they get sick. Or, until someone close to them gets sick. The US medical system is complicated system, and has both good and bad qualities. The bottom line is that if you get sick, consuming medical services will become your life, and it sucks. If you doubt me, think back to the last time you had a mammogram, or the flu, or a terrible headache. What was the process? How long did it take? How much did it cost. Take that and do it for 6 months weekly (with surgery then chemo), then tack on 5 years of follow ups.
Being sick is a burden. It is time consuming, expensive, difficult to navigate, confusing, scary, and often humiliating. I understand why people with chronic illnesses don’t follow up on treatment. Who wants to do that? Over and over and over again. How many can afford to do that? And, if you feel like the Dr doesn’t care if you even show up again, why on earth would you do it?
I’m off to find a new cancer Doc, and I’m not sure how to go about it. When I figure it out I’ll let you know!