Sharing, breast cancer? But Doctor I hate pink!

Hello friends,

a fellow metastatic cancer blogger has written a most eloquent explanation of how ignorant the medical profession is about metastasis in breast cancer. I guess breast cancer "awareness" hasn't reached medicine yet. Or at least not the 40,000 women and men who die from it each year. I love the sarcasm and honesty of this shared story. I've been in similar circumstances where I had to educate the well educated.

here is what the amazing blogger from

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Fight Pink!

Friday, May 16, 2014
This just happened...
A real conversation with a medical professional:

MP: "Hello, I'm your new Primary Care Nurse Practitioner, and I'll be standing in for Doctor Mogul. What brings you here?"

Ann: "I need refills of my Imitrex."

MP: Looks down at sticky note on chart, "I'm supposed to talk to you about breast cancer. " *flips through pages on the surprisingly thin chart* "Um, let me see, breast cancer....breast cancer...oh, okay. I see that you have Metastatic Breast Cancer. How are you doing?"

Ann: "I'm doing okay, thanks."

MP: "Oh, okay, so you are stable or what?"

Ann: "Yep, I'm stable. The cancer is stable and has been for 9 months."

At this point, with her using the term stable, I figured she understood the situation.

MP: "Did you have to do chemotherapy or radiation and how did that go?

Ann: "Yes to both. I'm still in treatment; it never ends when you have metastatic breast cancer."

MP: "Oh, you are? Okay, good. How are they monitoring you? Are you having regular mammograms?"

Mammograms? I am starting to rethink her understanding of my condition.

Ann: "Well, um no, not mammograms. I usually have a CT about every three months or so and a full-body PET every six, or when symptoms arise."

MP: "Oh PET, oh okay, that's good. You go see a cancer doctor regularly then?"

Ann: "Yes, I go in for treatment every couple of weeks. Right now I'm just on Perjeta, Herceptin and Zometa."

MP: "Alright, when was your last PAP?"

Ann: *shrugs"

MP: "When was your last visit to the gynecologist?" She looks concerned. "Do you even have a gynecologist?"

Ann: "No, I don't think I really need one."

MP: "Oh, no, you should have a PAP because it finds cancer cells early. If you want I can do a PAP right now." She eagerly pats the exam table and looks at me, hope in her eyes.

Ann: "Um, no thanks, I think they have found enough cancer cells. I mean, I do have metastatic cancer." I now suspected she may not know what "metastatic" means in relation to breast cancer, and so I added, "You know, end-stage."

MP: She spoke the words she wrote down out loud, "Patient refuses PAP."

MP: "Okay, colorectal health. You haven't had a colonoscopy? It's important to get a colonoscopy to find cancer early."

Ann: "I've already found cancer. I get regular PETs which would find new cancer, I think. I don't need a colonoscopy to find more."

MP: Clearly thinking I'm clueless, "No, everyone over the age of 50 should have one. It's very important for your long-term health. A colonoscopy is where they take a lighted tube and check your colon for cancer...."

Long te...? Wait, my God, is she really going to explain what this procedure is to me?

Ann: "I know what a colonoscopy is."

MP: "Oh oh, okay you do. Good, good, then you know how important it is that you get one." She sits, lab slip in hand, ready to write the order.

Ann: "Let me ask you a question: If a person has metastatic breast cancer, is already undergoing cancer treatment and has been for the past five years, has regular PETs and CTs to monitor whether cancer has spread anywhere else in her body - why does she need a colonoscopy? I already have end-stage cancer which I'm going to die from, so what would be the point of doing an invasive procedure like that to find more, and why do you think a PET isn't good enough?"

Like Hillary talking about Benghazi, I really wanted to know: "What difference, at this point, does it make?"

MP: "Oh...oh...oh, I see. Well, I'm sorry if I upset you or brought up negative thoughts."

Ann: "..Sigh..."

Yes, my being upset is the problem here, not the fact that you are an early detection drone to the exclusion of all common sense.

You know what questions she didn't ask? Where my cancer spread. She never asked me what chemos I'd been on. She didn't even say, "Tell me the course of your breast cancer and what treatments you've done." I'd have been happy to answer those questions and it might have made a difference in the discussion.

An accurate history seems important, even before common medical tests. Maybe if I had one small bone met that had been stable for a few years and was being treated by a hormonal drug, and didn't have all the PETs and scans and monitoring that I do, then some of these early detection screening tests such as a PAP wouldn't seem so off-kilter. But for me, with cancer in my liver and my abdomen inspected cell by cell on a regular basis, and, let's face it, having a pretty short lifespan, screening tests for new, early stage cancers seem completely unnecessary.

I might have pre-cancerous cells in my cervix? So freaking what?

I expect my primary care doctor's office to either know these tests aren't necessary for me, or tell me why I'm wrong. Why, when the house is burning down, is it important to turn the light off when you leave?

"Ask about breast cancer" on a sticky note is how the doctor guided her and that lady needed a lot more guiding than a single sticky note can provide. She was so focused on the early detection line of thinking that she was unable to change mental course when that was no longer a reasonable possibility. She didn't ask the right questions, she spoke like I was ignorant, she didn't hear what I was telling her and at the end, she assumed I was upset by thoughts of my disease rather than the truth - her lack of insight.

Unfortunately, as more people need healthcare, more nurse practitioners are standing in for doctors, and talented as many may be, they do not have the training or education that a doctor has. Primary Care will soon be exactly like calling first line tech support, where you have to go through that required checklist no matter what you say the problem is.

"Hello tech support, I'm calling because my printer is smoking."

"First unplug the router, turn off your computer, plug in the router, turn your computer on...."

Based on the advice of this NP, a person less vested in the understanding of their own disease than I am and who is used to doing what medical people tell them would today be spread-eagle in the stirrups of an OB-GYN's office or worse, butt-up, anesthetized, on the table of a GI doc.

Welcome to the future of medicine.

Turn the lights out before you leave.

Well, there you have it. An awesomely worded first hand account of how a patient with mets breast cancer can expect to be treated by primary care. Unfortunately this under educated standard of treatment is pretty much par for the course. If you or someone you love has mets of any kind you need to educate yourself, so that you can educate or medical team. Don't just take every doctors orders for tests or treatment as gospel. You may need to make these people aware of the best way to treat you.

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