The Ovarian Cancer Chronicles Part 3: The Second Opinion

July 09, 2021 | by Antra Boyd

Editor's note: This is part 3 in a series of introspective blogs written by Antra Boyd, iRNPA detailing her personal journey as an Independent Patient Advocate and recurrent ovarian cancer patient.

I got a second opinion. It surprised me. The doctor on the hill called me after she and her colleagues viewed my CT scan. The conversation went something like this:

Her: “This was not at all what I expected, it’s much worse”.

Me: “What do you mean?”. I am barely able to breathe as the words come out of her measured mouth.

Her: “Well, radiation is out, so is chemotherapy. I am not sure what I would do, I guess surgery. Yes, surgery is what I would do. I am sorry.”

Wait….

“You guess???”

That was it. She’s known for being blunt.

I knew that it was bad, I just didn’t have it in my head that it was as bad as she said it was. I wonder if my doctor (while he did tell me that the surgery could, quite possibly, be very extensive) didn’t want to send me down the rabbit hole never to come out again?

It’s no wonder we blindly follow a doctor's orders. Shit, you get told you have ovarian cancer that's spread to your liver and who knows where else, and you get maybe a total of three hours to talk about it.

So I asked him to elucidate. He said my interpretation of the appointment (in which we went over treatment options) was very different from his interpretation of the appointment.

Two things:

One: I am not sure it matters how my doctor interpreted the appointment and to his credit, he wanted to make sure he understood how I interpreted the conversation as I did. I picked a winner for a doctor. Dang!

Two: My heart aches for all the people who are struggling with a challenging diagnosis in this medical system. It is crazy how little time you get with your doctor when there are such big decisions on the table.

My doctor gives me as much time as he can, probably more so than most because I am insistent and it helps that I do this kind of thing for a living.

It’s no wonder we blindly follow a doctor's orders. Shit, you get told you have ovarian cancer that's spread to your liver and who knows where else and you get maybe a total of three hours (all appointments combined) to talk about it. How do you even know what to ask? Do you even understand what you’re being told? Can you actually hear what the doctor is telling you? Can you even come close to making an informed decision when you really haven't even touched the surface of risks versus benefits and the alternatives?

Say I wanted to try something else first? I’ll just pick something. How about acupuncture and Chinese medicine? I would get laughed out of my doctor’s office if I told him that was the route I was going.

I was a surgery nurse for twenty-plus years and I can tell you from my own experience that when we talk about the risks of surgery it goes something like this: risk of bleeding, infection, blood clot, pulmonary embolism, and death (something in close order to this). In my case, there are a shit ton more risks of the proposed surgery.

How about (to start):

Shortened vaginal vault (which could possibly lead to a very uneventful and or painful sex life).

Fistulas (don't even get me started-- look it up if you don’t know what they are-- EW)

Bowel resection and possible colostomy

Short gut syndrome

Bladder issues if the tumor has invaded-- hello problems urinating for life

Liver resection complications, bile leaks

And alternatives?

In the cancer world, there are a bazillion and one alternatives, but in conventional medicine you get just three options. Surgery, chemotherapy/targeted therapy, and radiation. That’s it.

So are we ever truly informed?

Nope.

We sign our name on the dotted line stating we understand all the risks/benefits/alternatives to proposed treatment/surgery, but we don’t really understand.

Maybe it's just as well. Maybe ignorance is, truly, bliss.

So to say I am struggling with this is an understatement. My heart is so heavy as I try to navigate what IS BEST FOR ME. The pressure to conform, while not outright, is there. It’s this sneaky whisper: “Are you crazy to turn down the only option presented to you?” “Do you really think you’re going to heal yourself any other way?”, “Do you have a death wish?”.

What a nightmare.

Say I wanted to try something else first? I’ll just pick something. How about acupuncture and Chinese medicine? I would get laughed out of my doctor’s office if I told him that was the route I was going. Not really, but I am sure THAT would not be his recommendation.

I have to listen to my heart. To the very same voice that tapped me on the shoulder and sent me to find the radiologist who read my scan in the first place and told me it was “clean” when it wasn’t.

And then there is the conditioning around doing what the doctor says because he/she knows best. I can see how all my years in the operating room have indoctrinated me to believe this is THE TRUTH.

It’s not. Surgery is very hierarchical and who do you think sits at the top of that hierarchy? That’s right, the surgeon. So whose orders do you follow? Yep, the surgeons. Indoctrination at its finest.

It’s why there has been loads (and I mean loads) of research on communication in the operating room and why people don’t speak up when they see something amiss. They are afraid of the hierarchy and what would happen if they did speak up. Humiliation is right there at the top of the list. No joke, I've seen it a dozen or more times, not speaking up because we are afraid of humiliation, all at the risk of a poor outcome for the patient, mind you.

Let me tell you a little story. I was once in a case. I will call it a big belly case. You know, open from top to bottom. The team was getting ready to perform a time-out right before the incision was made. This is where we all stop and confirm that we have the right patient, the right procedure, and so forth. Takes 5 minutes, tops. The surgeon, in this particular case, did his part and left the room.

Wait… what???

What about the rest of the team? This is the time for the team to discuss any concerns and to make sure everything is on point. So I stopped the time out and we waited for him to come back into the room to finish it. When he walked in, he saw that we had not proceeded with draping the patient, and he said, «Why have you not started draping?»

I said, «Because you walked out of the room in the middle of the time out, we need to do it over.»

He replied (I kid you not), «Are you fucking kidding me? Let me ask you something, Antra, do you always go the speed limit, do you always follow the rules?»

To which I replied, «When it involves the safety of the patient, why yes sir, I do.»

The rest of the room, save the surgical technician (who backed me up) was silent. What happened to the anesthesiologist speaking up, or the other nurse that was in the room? Afraid to be humiliated is my guess. Nobody wanted to confront that nasty bear surgeon.

I got the bitch out of my life and after the patient was safely tucked into the recovery room, I went into the utility closet and cried. You can read my blog post about this ordeal here: www.gnanow.org/blog/timeout!

I digress. The things I do know right now:

My gyn/onc has been with me since this all started in 2018 and I KNOW he is doing his best for me. That is very comforting. I know he cares.

I have to listen to my heart. To the very same voice that tapped me on the shoulder and sent me to find the radiologist who read my scan in the first place and told me it was “clean” when it wasn’t.

If I opt for surgery, it will be because I listened to that voice.

If I opt-out of surgery (at least for the time being)? Same reason.

There is only that. Nothing else.

Read Antra Boyd's previous blogs related to this topic: