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


Me and my family - mini version
See the full version on YouTube http://youtu.be/3IyHJsCdo4w
Amazon
Irreverent Products designed by ME

Classic White Mug for Breast Cancer Survivors

T-Shirt for husbands to show their support

iPad Folio Case for breast cancer survivor
view more products by ButDoctorIHatePink visit Zazzle
You like me! You really, really like me!
Breast Cancer? But Doctor...I hate pink!

Promote Your Page Too
I Yelp Too
Recent reviews by Ann S.
What's this?
Customized Breast Cancer Information Search

Followers
I'm a twit
Subscribe To
Posts
Metastatic Cancer Blogs

Team S - Living with Stage IV Breast Cancer
My 36th year?!?!
2 days ago
jlake.com
[cancer] Slightly better news
3 days ago
Dancing With Cancer: Living With Mets, The New Normal
Xeloda round 16
3 days ago
Kate Has Cancer
A Bittersweet Mothers Day
1 week ago
Telling Knots
Because cancer.
1 week ago
ihatebreastcancer
Metastatic Breast Cancer Makes Mother’s Day Difficult
1 week ago
Words From Ward Four
Sea Legs
2 weeks ago
Kay's Cancer Chronicles
The P Word
1 month ago
Pink Goose
My October
7 months ago

Good-bye my blogging sisters

Dee's Updates
2 years ago
Donna Peach
dp1 08-17-12 haiku
6 months ago
Living with Cancer
Daria’s Funeral Service
3 years ago
The Cancer Culture Chronicles
Please Stop Painting the Town Pink
2 years ago
The Carcinista
One Year
2 years ago
The Not-Dying Girl
Team LaurenStrong
4 weeks ago

Fierce Cancer Blogs

Caroline's Breast Cancer Blog
Thoughts on obesity and cancer
3 hours ago
The world breaks everyone, and afterward, some are strong in the broken places.~Ralph Waldo Emerson ~ - Blog
PEEK-A-B00 - I CAN'T SEE YOU!
3 hours ago
Life Has Its Ups & Downs
Breaking Out Of Jail
2 days ago
A Fresh Chapter
When Synchronicity Shows Up Just In Time
2 days ago
CHEMOBRAIN.....In The Fog With AM from BC 2 AD
INFORMED CONSENT TRUMPS ALL IN HUMAN RESEARCH TRIALS
2 days ago
Being Cancer Network
Radiation Therapy
3 days ago
Coping with Cancer
One Year Ago I Lost My Best Friend
4 days ago
Nancy's Point
“Decoding Annie Parker” – 5 Reasons Why You Should See This Movie
5 days ago
tata wars
Oncology check in...
6 days ago
Kimberly Cheyne
IT NEEDS TO HAVE SOME MEANING
1 week ago
I've got better things to do than survive
Be The Match Walk + Run Columbus 2014
1 week ago
Probably Cured
Do It Your Way
2 weeks ago
A Dancer Living with cancer
What was I saying?
5 weeks ago
Pink Ribbon Blues
Mar. 18: Keynote on Moving Beyond Awareness, University of the Pacific
2 months ago
breast-cancer-warrior.webnode.com
Be Careful What you Wish For
3 months ago
Chemobabe!
Putting my story to the side
4 months ago
Valerie Hoff
What are Dense Breasts? Do You Have Them?
6 months ago
All Things Caregiver
Early Detection Options for Breast Cancer
10 months ago
Body of Work
A perfect Saturday morning
1 year ago

Doctor Blogs

KevinMD.com
You can never be prepared for a diagnosis of breast cancer
1 hour ago
Dr. Len's Cancer Blog
Relay For Life Is All About People Making A Difference In The Fight Against Cancer Every Day In So Many Ways
1 week ago
The Crab Diaries
For Ellen
1 week ago
ZDoggMD
#Specialty
2 weeks ago
End of Life - thoughts from an MD
A Moral Community in the ICU
3 weeks ago
StorytellERdoc
Bingo Resilience
3 weeks ago
Doctor David's Blog
Music Is Medicine
1 year ago

Cancer Patients Laugh Too

Hyperbole and a Half
Awkward Family Photos
Emails from Crazy People
Cake Wrecks
People of Walmart

Resources for Breast Cancer Patients

Healthline
1 Up on Cancer
Male Breast Cancer Awareness
Adjuvent Online - with Herceptin
Calculate Recurrence Risks - LifeMath
HER2+/Herceptin Information
Breast Cancer at About.com
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.


Popular posts from this blog

Out with the old and in with the new.

Transitioning into Spring with terminal cancer