Showing posts with label metastatic ILC. Show all posts
Showing posts with label metastatic ILC. Show all posts

Sunday, August 21, 2011

Getting a Handle on the Abbreviations & Acronyms

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My Own Little "AA" Pocket Reference

ALND = axillary lymph node dissection
ANS = Autonomic Nervous System (ANS)
BILAT = bilateral
BHRT = bioidentical hormonal replacement therapy
BRCA = breast cancer type 1 susceptibility protein
CAM = complimentary alternative medicine
CNS = central nervous system
CT = computerized tomography
DCA = dichloroacetate
DCIS = ductal carcinoma in-situ
DFS = disease-free survival
EGFR = epidermal growth factor receptor
ER = estrogen receptor
IDC = infiltrating (invasive) ductal carcinoma
ILC = infiltrating (invasive) lobular carcinoma
LCIS = lobular carcinoma in-situ
METS - metastatic
MRI =  magnetic resonance imaging
OS = overall survival
PetScan [PET] = positron emission tomography
PgR = progesterone receptor
SNLB = sentinel node biopsy

I will be adding to this list as I learn more during this next stage. This is just the basic primer for now.

Saturday, August 20, 2011

"Barbie" (TM) Does Breast Cancer...REALLY! (or...I have found the Pink Beast's Lair)

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Introduction:

After meeting with surgical onc on Tuesday (8/16) and then the radiation onc on Wednesday (8/17), I was sent to the new "cutting edge" breast imaging center at John C. Lincoln Breast Health & Research Center. Before any slice 'n dicing can be agreed upon, the ladies (no, not the ones affixed to my upper frame, the oncs) wanted a breast MRI on both my ladies (yes, the ones affixed to my upper frame ... with crazy glue it sometimes seems). I agreed with this. Prudent, reasonable, no major radiation exposure. Let's do it. Well, that was where sanity ended and surreal began...


I have stumbled into the lair of the Pink Beast...and its name is Barbie!


Remember all the coveted Barbie (TM) play scenes. Barbie Condo; Barbie Salon; Barbie Beach Party; Barbie Corvette; Barbie does Botox...all of Barbie's unlimited fantasy lands? If Mattel were ever to decide that since Barbie is now part of the 50+ generation she should have some "real life" experiences; and, let's give her breast cancer (think Samantha a la Sex &the City); well ... they would not be able to create a better back drop than John C. Lincoln's Breast Health & Research Center.  

Grab your barf bags!

Glowing pink pony walls grab my attention as I enter the Imaging Center. There are three intake counters divided by milk chocolate floor to ceiling panels ... and bright glowing pink pony walls. Glowing because they are opaque and lit from within the walls. Accent lighting...got it.

Next my attention is drawn to the textured creamy accent wall behind the intake clerks. It looks like they took a 15' x 20' rectangle of whipped cream cheese, and with flicks and swirls created hibiscus flower shapes, then sealed it in motion with silicone. Gracefully scripted is ... YES ... pink lettering with the Center's moniker.

Retro-pink patient chairs act as sentinels in front of the intake clerks. At least the upholstered backs match the milk chocolate wall panels. The actual waiting area has retro-60's, milk-chocolate bucket leather chairs. Yippee.

The wall-to-wall carpet is dotted with small pink, white and milk-chocolate geometric squares. I am dizzy.

Cream (oh...let's just call it white chocolate) textured wall paper has muted gold sparkle squiggles running vertically floor to ceiling.

I look up. Barbie (TM) et al did not disappoint...a large, faux crystal, retro-60s chandelier hangs in the center of this Barbie (TM)  menagerie. Mood lighting, I suppose.


As I sit with the intake clerk, I cough and politely turn my head to the left. As I do, my attention is caught by the...um...a salon (?). An ante-chamber lined with hip to ceiling shelves of head wig stands. Sadly some are bald, but even their necks (?) are adorned with the signature pink & milk-chocolate colored scarves. Really ???




Mind you, this is just the waiting room. The secured MRI room holds it own. The linoleum floor immediately draws my eye with its large neapolitan-colored s/curve (though the pink is more bubble gum than strawberry in this room).  The wannabe Barbie (TM) interior designers went retro-modern in this area and opted for geometric plasticine lighting fixtures.

The changing room has a tiny airplane-sized sink with a ruffled milk-chocolate curtain hiding the plumbing. Privacy is provided by a heavy, embossed velvet curtain that hangs just beneath the 20' ceiling. Two lockers are available for clothing - clear but pink neon "A" and "B" identifies the different locked cubies. And, yes, there is a mini chandelier illuminating this 5' by 5' dressing cubicle. The soap is cotton-candy pink. I put on the provided quilted white robe, monogrammed with the proverbial pink ribbon that serves as a flagpole for the initials, "BH&RC".

I am taken to the injection site. Detail-oriented, and consistent, their decorator was. A large milk-chocolate - the same color as the s/curve on the linoleum, LazyBoy recliner awaits behind the pink and chocolate circles-on-cream curtain. Wow, I am now so prepped for my IV and the upcoming procedure..

I lay naked, save for the thong (now the barf bag is needed!) (BTW, the thong was blue) upon the baby-pink cushions that soften (barely) the divided well, designed to separate and suspend the ladies (yes, the affixed ones) for their close-up. I place my punim on the coordinating pink gauze that covers the face holder. Pink-tiles accent the otherwise cream-colored room. I start taking long cleansing breathes to bring both my pink-induced nausea and claustrophobia under control. Tech Michelle puts on the Stones for me (you rock Michelle!) and covers me with the robe and a baby-pink blanket. I get cold really easy. Ear plugs are put on (they are orange...ugh! fashion aux pas!) - not for the Stones, but for the deafening sounds the MRI is going to envelope me in for the next 40 minutes. Extra time is allotted because I have fake ladies. (Point of clarification...I am referring to the affixed ladies here.)


Epilogue:

One last breath. Arms are positioned over head (think a slovenly clad pink Superman). Eyes are closed...Mick, Keith, Ronnie, Charlie stay with me! Okay, slide me in... I am ready for my pink ribbon close up. Oh, and yes the outside of the Research Center was marked with a 5 foot pink ribbon sculpture. I know, because I am 5'1".


Post Script:

Oh, if only Michelle, my tech, had been bestowed with equal attention to detail. I explain the difference to her between ILC and DCIS. I explain the difference between expanders and permanent implants. I explain why she cannot take my blood pressure on my mastectomy side. Why do I need to explain? She shares that she has been doing MRIs for 10 years, but breast MRIs only one. She asks me health hx questions so she knows how to proceed. (Kudos for questions, really! Glad it is not her interpreting the films, however.)  And she is trying to expand her understanding. Learning should be a life-long pursuit. Even if it is done in the lair of the Pink Beast!

P.S.S.: I guess Barbie (TM) truly is the poster-girl for plastic boobies. And we wonder WHY there is no cure????  



P.S.S. - It just gets better...I swung by the John C. Lincoln Breast Health & Research Center today, to pick up the amended MRI report as well as the CD -- [ALWAYS GET A COPY OF THE ACTUAL IMAGES, NOT JUST THE WRITTEN REPORT, WHETHER IT BE CD OR FILM. WHEN YOU GO TO THAT NECESSARY SECOND OPINION (or even first opinion with the intial doc) MAKE SURE THE DOC LOOKS AT WHAT THE RADIOLOGIST LOOKED AT - MISTAKES CAN BE AND ARE MADE WHEN ONLY ONE SET OF EYES IS DOING THE INTREPRETATION.  But I digress..]

They handed me the envelope with the CD of the MRI, with a written amended report. The envelope was off-white with bubble gum pink border and writing...and...wait for it...a 4-view diagram of women's breasts, right and left, drawn in the same bubble bum [sic] pink color. The envelope size was 11x17. It did catch the eye of more than one in the crowded elevator as I made my way back to the parking garage.

Saturday, August 13, 2011

Pondering the Myths & Mathematics of Breast Cancer

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Statistics


About 155,00 women are living with metastatic breast cancer in the United States and this is projected to rise to 162,000 by 2011 according to Dr. William Gradishar, Director of Breast Oncology at the Feinberg School of Medicine at Northwestern University. source: Reach MD interview 2010

In developed countries, nearly 30 % of women with early stage breast cancer will eventually develop metastatic breast cancer. (O’Shaughnessy J. Extending Survival With Chemotherapy in Metastatic Breast Cancer The Oncologist.2005; 10 (suppl 3): 20-9)

In 2008, almost 49,000 Americans, including 1,990 men, were diagnosed with metastatic breast cancer. (American Cancer Society - 2008 Statistics)

98 percent of patients with breast cancer that has not spread beyond the breast live five years or more, while only 27 percent of patients whose cancer has spread to other organs survive five years.
(Komen website Jan 2010)

Median survival after diagnosis is three years. There has been no statistically significant improvement in the past twenty years. (American Society of Clinical Oncology [ASCO] Report - 2008)

Despite the decrease in cancer mortality rates since 1990, the actual number of Americans losing their battle with the disease has hovered around 40,000 each year since at least the year 2000.
(American Cancer Society statistics 2000 - 2008)

This translates to one death from metastatic breast cancer every 14 minutes.


The Myths...
Below are, reportedly, a few of the myths that still persist about metastatic breast cancer:

Myth: Research funding is well balanced for all stages of cancer

Reality: 90% of cancer deaths result from stage IV cancer, but only 2% of research funds are devoted to stage IV.

Myth: Metastatic breast cancer is rare

Reality: 30% of breast cancer patients progress to stage IV. Many more initially present with metastatic breast cancer.

Myth: Healthy lifestyles, timely screening and early detection prevent metastasis

Reality: Metastasis happens despite vigilance and precautions. Even stage I patients can and do metastasize.

Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year

Reality: New treatments extend life for some, but survival remains elusive. Over 40,000 women and men have been dying annually since 1987.

Myth: Stage IV breast cancer patients are well supported by many groups

Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to stage IV.


And now for the good news...

Statistics can be frightening… and some statistics may not even be applicable to an individual and their specific type of cancer, or their particular response to treatment.

Many statistics represent an average number. Not everyone falls into that average.

Each of us is a statistic of ONE.



Check out: http://mbcnetwork.org/



Friday, August 12, 2011

Rock and a Hard Place...

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I find this song running through my head constantly this week,
as I consider this next stage's options...
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(M. Jagger/K. Richards)

The fields of Eden
Are full of trash
And if we beg and we borrow and steal
We'll never get it back
People are hungry
They crowd around
And the city gets bigger as the country comes begging to town


We're stuck between a rock
And a hard place
Between a rock and a hard place

This talk of freedom
And human rights
Means bullying and private wars and chucking all the dust into our eyes
And peasant people
Poorer than dirt
Who are caught in the crossfire with nothing to lose but their shirts

Stuck between a rock
And a hard place
Between a rock and a hard place

You'd better stop put on a kind face
Between a rock and a hard place

We're in the same boat
On the same sea
And we're sailing south
On the same breeze
building dream churches
With silver spires
And our rogue children
Are playing loaded dice

Give me truth now
Don't want no sham
I'd be hung drawn and quartered for a sheep just as well as a lamb

Stuck between a rock
And a hard place
Between a rock and a hard place
You'd better stop
Put on a kind face
Can't you see what you've done to me

Saturday, July 30, 2011

Out of the Mouths of Babes

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Given the opportunity, children - at whatever age, are truly amazing beings. My kids excel at amazing. Last night, my 19 year old and I are sitting on her bed and I ask so what are we doing...? She lowers her chin, looks me in the eye, and flatly states: You know I am really pissed off at you!

Yeah, I know, why?

Why have you not told me your are sick again!??

...the upshot, SHE reads my blog. Who knew?

I knew I had better talk to my 21 year old. (Yeah! She is home for the weekend.) My baby has come a long way.

I had a fabulous talk with both my girls, and I learned a very important lesson, again. NEVER UNDERESTIMATE YOUR CHILDREN'S ABILITY TO HANDLE LIFE.

I love them so very much.

Thursday, August 20, 2009

Countdown & Checklist

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With my mastectomy looming just hours away, it is time to go over the requisite checklist:

1) Derma-planning followed by an Osagi peel. DONE (It will be bad enough to be the Bride of Frankenstein this time tomorrow, but I cannot handle being the Bride of the Wolfman too!)http://www.blogger.com/img/blank.gif

2) Pedicure and manicure. ALMOST DONE (With the multitude of down-time in the OR and recovery, g-d forbid someone should glance upon the toes and be given another reason to snicker!)

3) Packed lovely customized post-surgical camis. OY VEY, DONE! (And yes, they come complete with their own little portable "fluffies" & pockets...do not ask!)

4) Made the kids' school lunches (Because radiology wants me sooooooo early in the a.m. that it makes me wonder what they plan to do with me for 6 hours. So very glad my surgery is not being done at a teaching hospital!)

5) Explained to 8 year-old son's teacher, who called at 9 p.m., that "no" I was not having surgery on the entire left-side of my body from brain to foot. DONE?? (Re-explained to 8 year old too!)

6) Read 8 year-old an extra long bedtime story and danced with him to a Weird Al Yankovic CD. (Yes, it can be DONE.)

7) Watched kids sleeping (even the 17 year old). LET THAT PLEASURE NEVER BE DONE!