"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.

PSA - Treatment Concerns Regarding of DCIS

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Progress in Predicting Invasive Breast Cancer - Researchers Identify Biomarkers That May Help Decide Who Will Need Aggressive Treatment

By Charlene Laino
WebMD Health NewsReviewed by Laura J. Martin

MDApril 28, 2010 -- Doctors are a step closer to being able to predict which women with noninvasive breast tumors will go on to develop invasive breast cancer -- and therefore whether or not they need more aggressive treatment.

Researchers studied nearly 1,200 women with ductal carcinoma in situ (DCIS), a noninvasive and very early form of breast cancer confined to the milk ducts. They found that a combination of three tissue biomarkers was associated with a high risk of developing an invasive breast cancer with the potential to spread eight years later.

Also, DCIS that was diagnosed from a breast lump was linked to a greater risk of subsequent invasive cancer than DCIS that was diagnosed by mammography.
There's still a long way to go before the personalized approach to treatment is ready for prime time.

"But the study gets us closer to our goal of separating women with DCIS into risk groups, so as to avoid overtreatment of women with low-risk breast lesions and undertreatment of women with high-risk lesions," study researcher Karla Kerlikowske, MD, of University of California, San Francisco, tells WebMD.

The study was published online by the Journal of the National Cancer Institute.

Get Your Personalized Breast Cancer Treatment Report

Overtreatment of DCIS
Currently, overtreatment of DCIS, which will be diagnosed in over 47,000 women this year, is the big problem, according to Kerlikowske.

"Since there's currently no way to predict which women with DCIS will go on to develop invasive cancer, almost all are offered radiation after the lump is removed [lumpectomy] or mastectomy and sometimes hormone therapy. But our results suggest as many as 44% of women with DCIS may not require any treatment other than removal of the lump and can instead rely on active surveillance, or close monitoring," Kerlikowske says.

The close monitoring offers these women a safety net, she says. "If a tumor comes back, we can always give radiation then."

Radiation therapy not only carries a risk of side effects such as nausea, vomiting, and fatigue but also precludes irradiating the same area of the breast a second time, Kerlikowske says. "So you want to save it for when it is really needed," she says.

Predicting Invasive Breast Tumors
The study involved 1,162 women aged 40 and older who were diagnosed with DCIS and treated with lumpectomy alone between 1983 and 1994.

Overall, their eight-year risks of developing a subsequent DCIS or a subsequent invasive cancer were 11.6% and 11.1%, respectively.

When the researchers looked at women whose DCIS was diagnosed by feeling a lump, the eight-year risk of subsequent invasive cancer was substantially higher than average, 17.8%.

Then they looked at different combinations of biomarkers using tissue that had been stored for 329 of the women when they were first diagnosed with DCIS. These biomarkers include estrogen receptor, progesterone receptor, Ki67 antigen, p53, p16, epidermal growth factor receptor-2, and cyclooxygenase-2.

Predicting Invasive Breast Tumors continued...
The study showed that women who express high levels of three biomarkers -- p16, cyclooxygenase-2, and Ki67 -- also had a substantially higher-than-average eight-year risk of developing invasive cancer (27.3%).

The researchers stratified all 1,162 women into four risk groups. A total of 17.3% were in the lowest-risk group, with only a 4.1% chance of developing invasive cancer at eight years; 26.8% were in the next lowest risk group, with a 6.9 chance of developing invasive cancer at eight years. If the findings are validated, it is these two groups that could forgo treatment other than lumpectomy and active surveillance, Kerlikowske says.

A total of 27.6% of the women were in the high-risk group, with a nearly 20% chance of developing invasive cancer at eight years. These are the women who need more aggressive therapy with radiation and perhaps hormone therapy, she says.

Factors associated with a higher risk of having a subsequent ductal carcinoma in situ included having no cancer cells remain within 1 millimeter of the area from which the lump was removed and different combinations of biomarkers.

Unanswered Questions
Still, many questions remain.

For starters, about half of women who developed invasive cancer in the study didn't have the three biomarkers or DCIS diagnosed from a lump, so the researchers have to figure out what other factors are at play, Kerlikowske says.

Also, the approach has not been shown to actually extend lives.

Additionally, the study involved women who had undergone lumpectomy alone, which is no longer the standard of care, says Ramona Swaby, MD, a breast cancer specialist at Fox Chase Cancer Center in Philadelphia.

Recurrence rates are lower in women who also get radiation and if needed, hormone therapy, so it's important to see if the findings hold up in such women, she tells WebMD.

Craig Allred, MD, of Washington University School of Medicine in St. Louis, also calls for further study in an editorial accompanying the study. Still, "if validated, the results could optimize current therapy in certain settings: [withholding] radiation from women with low-risk DCIS, for example," he writes.

Several companies have expressed interest in helping to further develop and eventually market any tissue biomarker test, which will also need FDA approval, according to Kerlikowske.

Since it utilizes the same method and can be done at the same time doctors determine a tumor's hormone-receptor status, she doubts it will cost more than a few hundred dollars.

Funding for the research was provided by the National Cancer Institute and the California Breast Cancer Research Program.

My own personal journey is with Invasive Lobular Carcinoma (ILC) - Stage III. On my journey, however, I have had many women within my circle of contacts that have been diagnosed with Stage O DCIS. Many of whom have made tough personal choices regarding how they were going to address their diagnosis. To be candid, I have been concerned by many of the choices made. But, again, it is a personal choice and one that is never easily made. Part of my sincere hope for all women who have this early diagnosis is that they make their decisions not from visceral fear, but informed knowledge. My thoughts, prayers and hopes are with the friends, colleagues, and daughters that make up the 47,000.

Questions...

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Hi TC,

Happy twenty ten. I hope this is a better year for you.

My daughter has been diagnosed with breast cancer. I wonder if you can share information you feel may be helpful for her.

The preliminary report was that it is the most common type of breast cancer they see (whatever that means) and she was told it was encapsulated. She is able to see her test results on-line, and said she saw that it was the aggressive type. She hasn't seen the surgeon yet, so this is all I know to date. BTW, she is 44 years old. Anything you can share will be greatly appreciated.

Thanks in advance.


Response (I am not so arrogant as to believe I have any answers):

First, I am so sorry that you are being so touched by b.c. It sounds like it is ductal carcinoma. She needs to research, research, research! She should not make any decisions from a position of fear (or emotionally bullying) by the medical professionals. Cancer is typically indolent, and if it has been detected in an early stage she need not feel pressured to opt for any course of action immediately before she fully explores all of her options.

My own cancer is Invasive Lobular Carcinoma -- less common, but generally: DCIS is encapsulated within the milk ducts and there are different types - Comedo happens to be the more aggressive type in that of the types of DCIS - it would spread more quickly than the other types. Having said that it is a very early form of breast cancer, and is still classified as stage -0-.

She should pay the $500 and have her diagnostic records sent to Dr. Michael Lagios in the Bay Area. I know she is out-of-state, but he does phone consults. He will go over her diagnosis and fully advise her as to a course of action, in addition to re-evaluating her diagnosis. I found Lagios to be informed, sensitive, a “non-cookie cutter" doc who was integral in my own research and exploration.



Breast Cancer Consultation Service
Michael D. Lagios, M.D. • (415) 789-0965 http://www.breastcancerconsultdr.com/ - The Breast Cancer Consultation Service.