Attack of the Prosthetic or "What the Docs Didn't Tell Me...Again"

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When you go through the mastectomy and reconstructive process the med-pros, if you asked them, would genuinely tell you that they diligently inform patients of the potential risks, healing times, the care of the wound and drainage tubes (a.k.a. d-bombs for my few but loyal blog followers), medications, numbness and expected down time. What they don't inform of is how it will all feel! And I am not talking about the emotional adjustment of having your body look like Igor took knitting lessons from the Monster!

What I am speaking about are the bizarre sensations. The queer aches. The very wrong pains.

My surgeons did not truly share what the daily oddities would be - despite providing me with a personalized 12-page booklet. They didn't really prepare me for the texture of the of the training boo-bee. That it would feel like an unripened grapefruit trying endlessly to dislodge itself, a la Sigourney Weaver and Alien.

They did not share the fascinating little tidbit that if any seam or edge ... of any kind or material ... presses against the iron grapefruit for more than 2 minutes a deep impression is left. Very useful if you are imprinting keys. But a bit disconcerting if you are trying to grow (?) a new breast.

I do admit that they told me the breast area was going to be numb. What they didn't share was that it was the kind of numb sensation you feel when your foot falls asleep -- that heavy, prickly, tingling feeling. In this situation, however, it n-e-v-e-r goes away no matter how much you stomp.

Nor did they even whisper about what I fondly refer to as the "spike attack." Think rolling-pin that is actually more medieval mace. If I shift my arm or shoulder too quickly, or instinctively reach to catch something, the iron grapefruit that was planted in my left chest wall jerkily rolls its protestations against every nerve, bone and fiber it can reach.

I will give Med-Pros credit, they do encourage "creativity" when trying to camouflage the lopsidedness of "the ladies." Even being complicitous in the creative process by prescribing varied padded objects, courtesy of the retail mastectomy fashionistas. And let me tell you, we are not talking tissue or gym-sock stuffings Sandra Dee...!

Which leads me to mention that I was not forewarned that the surgical scar that runs horizontally from pit to sternum screams in burning agony if the compression bra is pulled too tight over it. An unavoidable and unfortunate situation if you are trying to artificially balance the "ski-jump" that passes for a bustline. And this fire does not extinguish.

For now, I have learned to embrace the ski-jump and wear patterned and textured tops. Though, I must admit I am perversely yearning for the inevitable awkward scene in the grocery store when a little kid points and shouts loudly: "MOMMY! that lady has a hump on her front!"

Still free-falling down the rabbit hole

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When you read Alice in Wonderland, you will find yourself trying to make sense of an illogical story. Alice, the key character, also experiences similar frustrations. But in the end, she emerges wiser with the learning involved in each situation. Everyone faces absurd choices in life. If you shrug off these choices as anomalies to your perfect life, you gain nothing. But if you try to learn from these absurdities, you will gain a lot of wisdom. By Simran Khurana

I met with the Radiation Onc (aka "radio-onc") this morning. A friend called while I was waiting in the exam room. She asked: "is this another doc, or one of the med-pro squad?"

"This one" (female), I reply, "is a member of my original 'team.' and she insisted that I meet with her. She is uncomfortable with my decision to opt out of standard protocol treatment." She asked, wisely, why then are you there????  It was then I realized that the single most motivating factor for my presence in that exam room was likely because, for a mere $40.00 co-pay, I get fodder for this blog! Sick!

How was I to know that this was a portend for the conversation that took place between "radio-onc" and I over the next 45 minutes?

Radio-Onc took it upon herself to drive home her fears regarding METASTATIC BREAST CANCER / SIZE OF MY TUMOR / MY AGE / COMPLEXITY / RECURRENCE / REMISSION. (My last appointment with her was on her birthday. At this point I began to wonder if she is harboring some latent disappointment on how that day turned out.)

The first two minutes where the most "cheerful" part of our conversation. Radio-Onc relays to me that Kato (medical onc) informed her that I had insisted on foregoing chemo. And, that he was still recommending it because of... SIZE OF MY TUMOR.

I proceed to inform her that what I insisted upon was the conducting of the Oncotype DX test to determine if I would derive any benefit from what he was brewing up. And, that the test indicated NO.

I even informed Radio-Onc that I had pointedly asked medical onc if the size of my tumor gave him reason to question my RS score and the subsequent determination that I would derive little to no benefit from chemo...to which he had replied: "No, not at all." Hmmm, she says.

Radio-onc then says she wants me to speak to one, if not two, other medical oncs. She explains that if two out of three of them agree on a course of action, or inaction, she will respect my ultimate decision. . . . And, I am wondering: (1) shouldn't she respect my health care decision, regardless; and (2) is this truly genuine concern for me as the individual or rather, general discomfort on her part because I am challenging the protocol set forth by the ICBC*.  Or, could it be that she and Kato pulling a "good cop/bad cop" scene on me?

I walked out of there thinking that I am not feeling really comfortable about coming back to her. And I know I will not be gracing Kato's examining room again. . . . But hey, I got my $40 worth!!

Sidebar:

Radio-onc speaks to me about having only "one shot" at a cure (aka "remission"). She informs me that if and when the cancer recurs all that the ICBC* can do for me thereon is "maintenance." . . .Hmmm, I say.

I speak to her about the blood work my naturopathic onc ("nat-onc") conducted. How each and every one of the results were "perfect." And I instruct her that these were done while I had a malignant 6.2 cm tumor nestled into me. I share with her that nat-onc equated my results to those that would be expected from a tri-athlete who maintained a vegan diet. . . .Hmmm, she says.

Radio-onc speaks to me of the size of my tumor; and she clarifies that "tumor" and "cancer" are interchangeable labels, and that this should frighten me.. . . Hmmm, why?

I speak to her about how Kato lamented that he has had women with ILC that have a recurrence within 7, 8 and 10 years after diagnosis despite chemo. And, should not this fact frighten them? . . . Hmmm, she says.


* ICBC = Industrial Complex of Breast Cancer (see prior entries where this was fully explained.)

The Women Warriors of the Amazon

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The word Amazon itself has some connotation with breasts.

In the picture:  The Amazons were a mythical race of warrior women renowned for their skills in archery and horsemanship. This marble statue depicting a wounded Amazon is a Roman copy of a Greek bronze original dated around 450–425 B.C. The original bronze may have stood in the sanctuary of Artemis at Ephesus on the coast of Asia Minor, where the Amazons had legendary and cultic connections with the goddess.

Here, the mythical warrior woman has been stripped of her weapons and horse, and wounded under her right breast. She wears a short, sleeveless chiton unfastened at one shoulder and belted at the waist with a makeshift bit of bridle from her horse. Despite her plight, this Amazon shows no sign of pain or fatigue. She gently leans on the pillar at her left and rests her right arm gracefully on her head in a gesture often used to denote sleep or death.

(Picture & description from the NY Metropolitan Museum)

Maybe I was born in the wrong century. I have a fascination and myself have indulged in ancient forms of combat (Tae Kwon Do; Kykoshin; Karate; Archery; Fencing) as well as equestrian pursuits. I aspire to be stoic and graceful; to show no sign of pain or fatigue, even when I incur the piercing wrath of Artemis. Regrettably, my slight case of dyslexia has always given me challenge when trying to discern my "left" from my "right." It afflicts me yet again. Instead of amputating my right breast, it was the left I allowed to be lobbed-off. No wonder I have so peeved the goddess.

PSA - Stop "Milking Cancer" Campaign

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Breast Cancer Action Challenges Pharma Giant's Marketing of the Artificial Hormone, Asks the Public to Demand Action

SAN FRANCISCO, Sept. 22 /PRNewswire-USNewswire/ -- Breast Cancer Action (BCA), known as the watchdog of the breast cancer movement, today announced the launch of their "Milking Cancer"

campaign challenging the pharmaceutical giant Eli Lilly to stop manufacturing rBGH. rBGH (recombinant bovine growth hormone, also known as rBST) has long been linked to cancer.

Eli Lilly is the sole manufacturer of rBGH which is sold worldwide under the name Posilac. The company also markets drugs to treat breast cancer and a drug to reduce the risk of breast cancer in women at high risk.

"Eli Lilly profits from cancer any way you look at it," said Barbara Brenner executive director of Breast Cancer Action. "It's the perfect profit cycle. When Eli Lilly milks cancer, it's great for the company, but bad for the public's health."

The artificial hormone rBGH has been banned in Japan, Australia, Canada and the European Union. Large corporations such as Wal-Mart and Starbucks no longer use milk from rBGH-treated cows in their store-brand products.

"There is strong evidence of a connection between rBGH and cancer, including breast cancer," according to Dr. Martin Donohoe, Adjunct Associate Professor, School of Community Health, Portland State University. "Many leading dairies and health care facilities have eliminated its use. Why should we take a chance with the public's health?"

BCA is launching the Milking Cancer campaign --featuring an on-line video and website, (www.milkingcancer.org) - to raise awareness and to encourage concerned consumers to contact Eli Lilly directly and tell them to stop manufacturing rBGH.

This project builds on BCA's Think Before You Pink(R)- a campaign raising critical questions about pink ribbon promotions and targeting "pinkwashers": companies that say they care about breast cancer, but make products that contribute to the incidence of the disease. Bolstered by the many successes of the campaign, including a 2008 effort that persuaded General Mills to discontinue the use of rBGH in pink-lidded Yoplait yogurt, Brenner urges people to believe they can effect change over Eli Lilly as well. "Ordinary people have extraordinary power to change corporate behavior," said Brenner. "People who care about public health can and will get Eli Lilly to stop milking cancer and end the manufacture of rBGH."

Breast Cancer Action is a non-profit education and advocacy organization that does not accept funding from pharmaceutical companies or any other organizations that profit from or contribute to the breast cancer epidemic.

Partners in the Milking Cancer Campaign are DES Action, Food and Water Watch, Institute for Responsible Technology, Massachusetts Breast Cancer Coalition, Our Bodies Ourselves, Physicians for Social Responsibility, and the Women's Community Cancer Project.

Sidebar: Looks like Eli Lilly is "milking" cancer on both ends...this entitles them to honorary enrollment in the ICBC, Inc.*

About Lilly Oncology, a Division of Eli Lilly and Company

For more than four decades, Lilly Oncology has been dedicated to delivering innovative solutions that improve the care of people living with cancer. Because no two cancer patients are alike, Lilly Oncology is committed to developing novel treatment approaches. Our quest is to develop a broad portfolio of tailored therapies that accelerate the pace and progress of cancer care. To learn more about Lilly's commitment to cancer, please visit www.LillyOncology.com.

"Lilly continues to look for ways to improve the survival of people living with cancer and fill unmet needs in difficult to treat cancers," said Richard Gaynor, M.D., vice president, cancer research and global oncology platform leader for Lilly.

Source: Eli Lilly and Company

Major Products

Eli Lilly's top eight products have each generated net sales of more than $1 billion for 2008.

Eli Lilly 2007 product sales

• Gemzar (8.4% of 2008 sales) is a chemotherapy drug for lung cancer, pancreatic cancer, and breast cancer. Gemzar mimics a DNA building block, preventing DNA replication and tumor growth. Like many other chemotherapy drugs, this also stops the division of healthy cells, leading to severe side effects. Gemzar's patent is set to expire in November of 2010, however, as Lilly's method-of-use patent extension through 2013 was invalidated.

• Alimta (5.7% of 2008 sales) is a lung and chest cancer drug.

Excerpted from Forbes online report, dated 9/22/2009

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* ICBC, Inc. - Industrial Complex of Breast Cancer, Incorporated is a phrase coined by me to encompass the anomaly of the profit making industry that shrouds the study and treatment of breast cancer.

Breaking the Cookie ... ta-da-ta-da-ta-da-da- dum ...

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So. The inscrutable Kato (my medical oncologist) sat down with me yesterday morning. He smiles his worn smile and says: "based on the results of the Oncotype DX* test I would not benefit from chemotherapy." And, why the surprise? 

Rewind: this is the same onc who, if I had unquestioningly followed his prescribed standard of care protocol, would have started chemo . . . LAST WEEK! The "Red Devil"** being pushed first and heavy!

Rewind: the Oncotype DX is the test I researched, brought to him, and insisted be conducted!

Why the 180? Because ... ta-da-ta-da-ta-da-da- dum ... the Oncotype DX determined that my Recurrence Score ("RS") is 16 / 100.***
What does this mean, besides the fact that the toxic soup has been pulled from my menu? Well, women with a low risk RS will receive little, if any, benefit from chemotherapy after surgery. Hmmm...

So. I asked, why I had to ask for the Oncotype DX test to be done?
So. I asked, why was it not offered to me as a matter of protocol, especially in light of the 180 in his medical recommendations?

The inscrutable Kato simply and calmly stated, because my tumor was so large. "You see," he says, "The 'problem' with Oncotype testing is that it usually does not test tumors greater than 5 cm." Hmmm...

So. I asked, does the size of my tumor give him reason to question my RS score and the subsequent determination? He said: "No, not at all." Hmmm...?

Sidebar: When all of the MedPros thought my tumor was no larger than 5 cm not one of them, and certainly not Kato, even hinted at the possibility of Oncotype testing -- they spoke only of chemo and radiation -- and their incredulity that I did not want to do either. Additionally, post-mastectomy, I spoke directly to Genomic Health, the lab that conducts the test. I wanted to confirm the criteria of the test and applicability to my situation. I was told I was a "fit" -- all 6.2 cm of me.

Walking out of Kato's office yesterday I felt like I had just "dodged the proverbial bullet." More so than after and since the mastectomy.

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Side Notes:

* Women with early-stage invasive breast cancer receive a standard risk assessment that includes their age, stage of the cancer, grade and size of the tumor. New, sophisticated tests, such as MammaPrint+ and Oncotype DX allow women with estrogen receptor-positive, node-negative tumors to also obtain a refined risk assessment that predicts their risk of recurrence and how much chemo will help. In my situation, prior and up until the results of my Oncotype DX test results each and every one of my MedPro squad were adamant that I commence chemo within one-month after my mastectomy. Their argument: my age (47) since "younger" women have a statistically higher risk for recurrence; and the size of my tumor (6.2 cm).

** "Red Devil" (a.k.a. "Red Death") refers to Doxorubicin; trade name Adriamycin; also known as hydroxydaunorubicin). This lovely pharmaceutical has a plethora of side-effects. Acute side-effects can include nausea, vomiting, and heart arrhythmias. It can also cause a decrease in white blood cells (making you highly susceptible to infections), as well as complete hair loss. When the cumulative dose of doxorubicin reaches 550 mg/m², the risks of developing cardiac side effects, including congestive heart failure, dilated cardiomyopathy and death, dramatically increase.

*** The Recurrence Score, a number between 0 and 100, also signifies the likelihood of metastatic recurrence within 10 years of the initial diagnosis. An RS of 17 or below is considered "low risk," meaning the breast cancer has a low chance of recurring. My RS essentially states that out of 100 women, statistically, 16 will have a metastatic recurrence within 10 years. Will I be one of the 16? Well, even if I am, chemo won't be any help -- and most importantly, would not have had any impact even if I had opted for it presently.

+   MammaPrint is the European version of the Oncotype DX test. The biggest difference, however, is that to conduct a MammaPrint the tumor tissue has to be "fresh off the surgical site." The only place in the U.S. that you can have a MammaPrint conducted is ... ta-da-ta-da-ta-da-da- dum ... PHOENIX. Why? Because T-Gen, HQ'd here in Phoenix (where my surgery was done), just recently bought the MammaPrint patent. And, according to Kato, T-Gen reps are wining and dining all the Arizona breast cancer surgeons. Guess my surgical oncologist (one of the top 3 in the Phoenix area) must have missed (or had too much of ) either the wine or dine. (BTW - I asked Kato why he thinks I was not presented with the MammaPrint as an option. He smiled, and said: (did you guess?) "Probably because my tumor was so large" (!!!) ) Hmmm...