Things Doctors Say ...

******

Cardiologist:     So, I have looked at your paperwork. You list "MBC / ILC" as a chronic condition. That's inhalation....

TC:     No, sorry for the shorthand. Its stands for Metastatic Breast Cancer / Invasive Lobular Carcinoma.

Cardiologist:     Oh, I am sorry. How long do you have to live? Have they given you a time frame?

TC:     Not sure who the "they" are, but I am certainly frustrating the time frames that were given to me each time I declined chemo and radiation from the "they."

Cardiologist:   Very good. Have they ever done a CT of your brain?

TC:    WTH???? (because I am here having this conversation with you?)

 

Things People Say . . .

******

. . . to those with cancer and their loved ones.

My husband's elder cousin, who is 82, was inquiring (while he was on a speaker phone at our office),

How are things going with TC, is there anything we should know?

Well, her last PetScan has some oddities that she is following up on, and they found another small tumor in her lymph nodes.

Sorry to hear that. Well radiation will knock that out, right?

TC has never opted for radiation or chemotherapy.

Well, if it is any consolation, our friend Mr. J., they found a tumor. They checked him into the hospital and gave him an intense doses of radiation and kicked that tumor right out of him!

Glad to hear that.

Yeah, well, he caught MRSA in the hospital and died 3 days later - nasty case. But that radiation sure worked on the tumor!


 

MBC Awareness Day - The Darkside of the Pink Ribbon-Fest

******

Today, October 13th, is Metastatic Breast Cancer Awareness Day. YES, this select subset of Journeyers get one day out of the entire Pinktober-fest. One day out out of 31, to bring attention to that form of breast cancer that claims the lives of women & men at an average rate of 40,000 per year. That significant statistic is only for the U.S. Approximately 470,000 die each year world-wide. Such little attention has, historically, been given to MBC - either in "awareness" or in research. MBC is the dark underside of the Pink Ribbon. I do not often paraphrase Stalin, actually, this is my first time, but it seems fitting. Sadly, in the world of MBC, one death is a tragedy but thousands seem to be merely a statistic.

I wrote the following in February 2010 - just over 6 months after my initial diagnosis; while I was still in the throws of multiple surgeries; and while I was still in the midst of embracing my own cancer journey. This was in response to the dearth of information and mis-information that I was having to contend with as I groped my way along a well-chartered, but equally mystifying path. It seemed apropos to reprint again, as I continue to stumble along the routeway of MBC.

Please to Meet You...Can You Guess My Game?

You pay homage to me
With candlelight's,
With relays, and
Pale pink parades.
You go through these motions, notions
and emotions half-veiled and dazed.
Caring, yet not comprehending the dark nature of my true game.

I have marched on,
I have latched on,
I live due to the choices you have made.
You're dumb-founded and scared, and
Emboldened and brazen.
And I enjoy this pink badge of honor,
Celebrating the carnage left in my wake.
Yet you don't seem to understand when you meet me,
Thou you flippantly market my game.

You clamor to the life I've taken -
Fear gripping you like a vise,
Yet celebrating with ribbons and vigils
And solemn events to light up the night.
Yet I still seize, clutch, and penetrate,
Creating breastless creatures with the disease I rake.
And in response you raise your banners and tie your pink laces,
Feigning a civilized calm, within the din of despair,
Yielding and railing at the call of my name.

I enjoy an enviable market niche,
A public relations dream with a broad reach.
I bring many persons together
To walk,
To share,
To cry, and
To prescribe.
Together you'll meet me, step-to defeat me and fight,
While still shunning from the meaning of the game that I play,
For the "greater purpose" you cling to me me, giving life to my name.

I'm embraced,
I'm battled,
I'm run for, and against.
I raise warriors in pink,
I raze survivors inside and out.
You speak awareness of who I am,
Yet I'm still the ever uninvited guest.
You know me, but you choose not to see,
Past the Madison Avenue glitz; and
In the whispers of your fears, my name is endorsed on your lips.

You make me t-shirts and teddy bears,
Coffee cups and pins
You celebrate my name,
In the hopes that YOU will win?
I'm on bracelets and billboards,
T.V. ads and magazines.
You use me to bond women together,
Through hats, key chains and I.V. scenes.
You want to be rid of me, wrench me from your breast,
While still elevating my name like some personal test.

You breathe and drink me, in
The chemicals you create.
The ones that both heal and do harm.
You willingly open your body to my sin.
Your lust for luxuries simply invites me in.
Through cosmetics,
Beauty creams,
Lipsticks,
Shampoo,
Hair color,
Deodorants, and
Perfumes.
You gulp me down in plastic bottles.
Swallow me hungrily in pills.
You ingest me in the foods you eat,
And still,
You come gripped with shock and dismay,
And curse when you greet me,
Still stoically refusing to take personal ownership of my game!

I bring sorrow,
You bring hope -
And wrap yourself in courage desperately borrowed.
I bring profit -
Greedily spawned from your daughters,
Yet you say you know me, with no knowledge.
And you keep coming to me in droves,
Throwing away your intuition,
Innate sense and well being, no longer trusting your own.
You claw at and cling to the coattails of Big Pharma,
Opening your veins up to the corporate dogma.
Good patients burn flesh and sear mind under the guise of a pink banner,
And savor Red Devil cocktails, while
Quality of life becomes nothing but face-book banter, of
Buzz words, fly-bys, statistics, wigs, and trials,
As you uncomfortably nestle blindly in my surreal guile.

Am I nature,
Am I man-made, or
A product of freakish DNA?
You don't know,
You don't ask,
You lock-step on.
You want only to walk on the pink runway,
Fear as your drum.
All the while feeling empowered,
Rallying with the pink-media monster, who
Romanticizes the call,
To join the growing roster forged in my name,
And trust that I am very pleased to shroud you in the nature of my game!

- TCShanker (aka "TC")
February, 2010

# # #

To gain greater insight into the MBC Community; the grass roots movements to educate the general as well the Pink-Public as to MBC; and to make this deadly aspect of breast cancer a priority in funding & research, please explore the following resources. Thank you for taking the time this October 13th, and beyond.

Metavivor.Org
http://www.metavivor.org/index.html

From support groups to funding vital research, our programs sustain the power of hope. Passionately committed patients ourselves, we rally public attention to the urgent needs of the metastatic breast cancer (MBC) community, help patients find strength through support and purpose, and make EVER dollar count as we work with researchers to regain longevity with quality of life.


Metastatic Breast Cancer Network
http://mbcn.org/

MBCN is a national, independent, nonprofit, patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer . We strive to help those living with stage IV breast cancer be their own best advocate through providing education and information on treatments and coping with the disease.
 

National Foundation for Cancer Research

http://www.nfcr.org/metastatic-breast-cancer-research

Even after successful removal of a primary tumor, cancer patients still live under the constant fear that a few cancer cells have escaped the surgery, and that these cells may eventually become secondary tumors in other locations of the body. Presently, there has been insufficient research on the root cause of metastasis, which means that there are no effective medical strategies to prevent or stop cancer once it has spread. Although chemotherapy drugs are used to inhibit the cancer metastasis, this form of treatment often leads to debilitating side effects which diminish the quality of life for patients and their families.

There is an urgent need f or better methods to prevent and treat metastasis. Due to the complex nature of this aspect of cancer, extensive research collaboration among scientists is essential to tackle this problem. Critical as it is, research funding in this field is severely limited. Of the $6.2 billion dollars allocated to the National Cancer Institute for cancer research, less than 1% of that budget focuses on research trying to understand the fundamental mechanisms of cancer metastasis.

The metastasis of cancer cells is the greatest cause of lethality from tumors. Despite this fact, metastasis remains a relatively understudied area with a corresponding lack of understanding of the metastatic process. The research presented above has already provided new insights into the causes and mechanisms of cancer cell metastasis.


 

Breast cancer risk after supradiaphragmatic radiotherapy persists beyond 40 years

******

Everything...and I mean EVERYTHING comes with a price tag.

I came upon this, and my breath caught. This has nothing to do with my personal health journey. It has everything, however, to do with dear sweet 16 year old Hannah...just another potential battle you may have to face down the road. Hannah was diagnosed with Hodgkin's Lymphoma this past spring when she was 15, and has been undergoing very aggressive treatment since. Her last round is scheduled for erev Rosh Hashanah. Her mother (Andrea), whom I got to shared a hug with this past Thursday, was looking at the poetic and positive portend associated with this timing.  Andrea has always been a 1/2 glass full lady.

I, on the other hand, have been trained to be the consummate cynic (4.5 years of law school and nearly two decades practicing law). I listen to the treatment regimen Hannah's young body has had to endure these past six months; I recall my own fears of cumulative radiation exposure;  I stumble across the following abstract; and I viscerally cringe.

And, again, I ask the question constantly on my lips - why must anyone sacrifice their long term health as the cost of being "cured" today?  ####

1:35 | Jun 29, 2012 | Oncology, Reuters Health • The Doctor's Channel Daily Newscast, Women’s Health

NEW YORK (Reuters Health) – The increased risk of breast cancer in women who received radiotherapy above the diaphragm for treatment of Hodgkin’s lymphoma (HL) persists for at least 40 years after treatment, according to a national cohort study from the United Kingdom.

These women need to be followed for at least 40 years, perhaps with more-intensive screening regimens, say the investigators from the England and Wales Hodgkin Lymphoma Follow-Up Group in a report online June 25 in the Journal of Clinical Oncology.

“Supradiaphragmatic radiotherapy is still widely used although techniques and doses keep changing,” first author Dr. Anthony J. Swerdlow, from the Institute of Cancer Research, Sutton, Surrey, England, commented in an email to Reuters Health.

He and his colleagues documented the clinical characteristics, treatment, and subsequent outcomes of 5,002 women with HL treated with supradiaphragmatic radiation (mantle-field in two thirds of the population) in England and Wales from 1956 to 2003. The women were younger than 36 at the time of treatment and were followed through the end of 2008.

The researchers used modeling to describe specific, cumulative breast cancer risk at given time points during follow-up according to age at diagnosis, treatment type (inclusion of alkylating agents or pelvic radiation), radiation dose, and time from first treatment.

A total of 373 women developed breast cancer or ductal carcinoma in situ during follow up, yielding a standardized incidence ratio (SIR) of 5.0.

SIRs were greatest for those treated at age 14 years (47.2) and “continued to remain high for at least 40 years. The maximum absolute excess risk was at attained ages 50 to 59 years,” the investigators report. Alkylating chemotherapy or pelvic radiotherapy diminished the risk, but only for women treated at age 20 or older, not for those treated when younger.

The authors tabulated “in detail” cumulative risks of breast cancer based on various factors. For example, the cumulative risk of breast cancer in a woman 20 to 24 years old at the time of treatment with supradiaphragmatic radiation is 3.5% at 20 years and 29.2% at 40 years. For those treated with supradiaphragmatic radiation plus alkylating chemo and/or pelvic radiotherapy, the corresponding risks are 3.6% and 11.5%.

“I think the clinical implications (of the article) are in the provision of risk statistics to use to advise patients,” Dr. Swerdlow said.

In an accompanying commentary, Dr. Michael Crump, from Princess Margaret Hospital and University of Toronto in Canada says, “The legacy of curative extended-field radiation for HL is a large survivor population that is at an increased lifetime risk of second cancer, in particular breast, lung and GI cancer. The article by Swerdlow et al … offers additional information to address the challenge of individual risk assessment.”

This is largest cohort of survivors of HL yet evaluated for breast cancer risk, Dr. Crump notes, and the results confirm those of others. Namely, that breast cancer risk is “highest in women treated with mantle radiotherapy around puberty, decreases with increasing age at treatment (although still elevated for women treated in their thirties, the median age at diagnosis of HL in most countries), and decreases with smaller radiation field sizes and lower radiation doses. Gonadotoxic therapy (alkylating agents or radiation) reduced subsequent breast cancer risk but only for women treated after age 20 years.”

Dr. Swerdlow and colleagues say the “large cumulative risks of breast cancer we found 20 to 39 years after supradiaphragmatic radiotherapy, especially in patients treated at age 20 years, are similar to or higher than the risks by the same ages in BRCA1 and BRCA2 carriers. They suggest that intensive breast screening programs for such women may need to continue for 40 years and longer after initial radiotherapy.”

They also say their data showing maximum absolute excess risk at ages 50 to 59 years suggest that “more-intensive screening (eg, annual screening with magnetic resonance imaging) may be needed.”

In his editorial, Dr. Crump points out that “Both the American Cancer Society and the United Kingdom Notification Risk Assessment and Screening Programme recommend magnetic resonance imaging (MRI) as an adjunct to annual mammography for women who have received thoracic irradiation younger than age 36 years, starting 8 years after treatment. Available data suggest that efforts to enroll high-risk women onto screening programs are falling short, and less than half of women treated during adolescence or as young adults currently receive annual mammography.”

Continuing, Dr. Crump says, “The United Kingdom guideline recommends commencing screening at age 25 years but returns women to standard mammography once every three years once they have reached age 50 years. The report by Swerdlow et al suggests that this upper age limit should be reconsidered in light of the very high cumulative risk faced by women even beyond 30 years of follow-up,” he concludes.

SOURCE:

Toward Risk-Based Breast Cancer Screening and
Prevention Strategies for Survivors of Hodgkin’s
Lymphoma: One Step Closer?

Breast Cancer Risk After Supradiaphragmatic Radiotherapy for Hodgkin’s Lymphoma in England and Wales: A National Cohort Study

J Clin Oncol. 2012.

 

Opportunity to become Aware...More on BigPharma

******

My alma mater is hosting another important conference. You can register and attend online. These types of forums and discussion fosters true "awareness." ~

PharmedOut
Missing The Target:

When Practitioners Harm More Than Heal
June 14-15

PharmedOut, a Georgetown University-based research project, will host its third annual conference focusing on the misinformation and patient harm that can occur from pharmaceutical and medical device marketing. PharmedOut 2012 will offer 10 CME credits and feature expert speakers including:

• Rita Redberg, M.D., M.Sc., Archives of Internal Medicine editor-in-chief; professor of medicine at UC San Francisco
• Carl Elliott, M.D. Ph.D., author of White Coat, Black Hat; professor at the University of Minnesota Center for Bioethics
• Kay Dickersin, Ph.D., director of the Center for Clinical Trials at the Johns Hopkins Center for Global Health
• Susan Wood, Ph.D., professor at the George Washington University School of Public Health and Health Services
• Julie Taitsman, M.D., J.D., chief medical officer of the Office of the Inspector General at the U.S. Department of Health and Human Services
• Sharon Treat, J.D., executive director of the National Legislative Association on Prescription Drug Prices
• Jack Mitchell, chief of investigations for the U.S. Senate Special Committee on Aging

The conference will be held on Thursday, June 14, and Friday, June 15, in the Lohrfink Auditorium at Georgetown University.

This conference will address radiation risks of CT scans, antipsychotic use in children, adverse effects of marketing, risks of other medical devices, prescription tracking, physician payment disclosure laws, and many other topics. Speakers include Rita Redberg MD, Editor-in-chief of the Archives of Internal Medicine, and Carl Elliott MD PhD, Author of White Coat, Black Hat.

Agenda:
Thursday morning: Marketing of antipsychotic medications and other drugs
Thursday afternoon: Potential health risks of CT scans and other medical devices
Friday morning: Legislative and regulatory updates and solutions
Friday afternoon: The role of industry, media and payers in informing and protecting patients

For more information and to register for the conference, please visit the PharmedOut website.

Friday the 13th ... Nothing New

******

My last post was about the redundancy of restarting; resolutions; and renewals.

For the last two weeks, I have been the poster-child for redundancy. The December before my initial diagnosis I was laid up for a few weeks with a bout of pneumonia. That was December 2008. December 2009 I found myself plagued again with pneumonia - a slightly worse case. December 2010, I was in bed for over 3 weeks with pneumonia. I could not move. I could not read. I could not watch movies. All I could do was stare out the window and doze intermittently between fever-induced hallucinations.

December 2011 came and squeaked by and I thought...YAY! Dodged the pneumonia bullet this December.

January 3rd I was inflicted again. What is with my lungs?!

I have managed to stay out of bed this round. In fact, I haven't even been able to sleep for nearly 8 nights. I finally got an ozone treatment on Wednesday and had my first night sleep since January 3. (Thank you Dr. John) I have been walking. Not talking...much. And keeping up...sort of.

I have found myself bogged down with lethargy. I am so frickin' tired! All the time. Everything is an effort. Including, but not limited to, breathing.

Through this, I have been acutely aware of how I am so inundated with cancer. I am not referring to my body (though with cancer wheedling its way through my lymphatic system...) but I refer to my "world."

I reconnect with an old dear friend, and I find that she has lost a friend to breast cancer; and has just had another diagnosed at stage I.

I check my morning emails and find the journal of a colleague who is about to undergo a protocol of radiation (and anyone who has followed BooBeeTrap knows my personal feelings about conventional treatments) ... and I bite back my opinions. Treatment paths are personal paths to be respected...so I manage to curtail my tourette-like comments to myself.

I pick up our local newspaper and read an announcement about a neighborhood garage sale to benefit a single mother who is having difficulty keeping up with her bills while she is going through debilitating adjuvant treatment.

I turn on the news and barraged with extended ads for SGK's 3-day run. (OY! this helps, how?...but I digress to my usual pink-questioning...)

Redundancy. Sad. Heartrending. Overwhelming. Life-cycle. Predictable. Redundancy. Even this post.

"What is important to you"?

******

I have been hearing...and listening...to a great deal of frustration from friends and family. My cancer journey is confusing and scary for them, understandably. Equally understandable is their frustration and confusion as to my choices in treatment and management of what has now evolved into a chronic disease. I am trying to address each of those I love and care about individually. To reassure. To help them, if not understand, to at least accept. Below is a compilation of several letters that I have written to some of my loved ones. I share them here, first, because this is where I process my cancer journey. Second, because I hope that through the venue of my blog understanding and/or acceptance will come. I have to hope. WARNING: Content May Contain Concepts of Emotional Sappiness.

Dear Loved One:

I am going to start this letter with the single most important message I wish for you to take away, and that is that I love you!

Also, you need to know that you are important to me, and I am listening very closely to your concerns. I know that you are worried. I feel deeply and appreciate your concerns...truly. 

   

I know that the prevalence of pink & pretty media coverage regarding breast cancer makes it seem that great leaps and bounds in treatment options are available. I also know, from experience, that when Susan B. Komen and their ilk speak about "cures" and "awareness" they are speaking only of early stage breast cancer. That is, breast cancer that is confined to the mammary glands, and which can be "curable" but only to a certain extent. Susan G. Komen is not about advanced stage breast cancer.

My cancer was initially discovered when it was already late-stage; and is of an infiltrating / invasive nature. Remember, this was despite years of mammos misidentifying the tumor growth solely as fibrous breast tissue. When breast cancer has metastasized, i.e., moved out of the mammaries, treatment options are few and most are longshots in achieving a positive prognosis. Regardless, I have not been sitting idly. Nor, should you presume that I am acquiescing, giving in, admitting defeat, etc. to a chronic disease.

Yes, it is true that the MD community is a bit pessimistic about my situation - save, interestingly, my oncologist who is excitedly on-board with my current protocol. Well, maybe not excited per se, but at least supportive. You must trust me, I have researched and continue to research extensively my current treatment plan. The MD community (save for my oncologist) would like to go "full guns" and "aggressive beyond measure" (these words from the radiation onc). And, according to same radiation onc, going "full guns" will only give me a 20% chance at a 5 year survival. You must remember: there is a vast difference between survival and living.  

The surgical onc clearly does not want to do the surgical "full guns" and "aggressive beyond measure" surgery -- a full axillary nodal dissection. Why?  Because  it is "messy" trying to avoid all the clusters of nerves, blood vessels, and arteries. And, she acknowledges that there is no difference in the 5 year morbidity with women who have had a full axillary nodal dissection, and those who don't. She does, however, give me a 25-30% likelihood of long term nerve damage.

I cannot articulate the appreciation I feel for you own efforts in researching treatment alternatives for me. Your own stubbornness and deep caring are two of your endearing qualities. I also appreciate the emotional difficulty you are having in sharing your research findings with me. Nothing about cancer is easy. Unfortunately, your research brought nothing new or surprising. I was aware of the challenges with my prognosis. Rightly or wrongly, I did not feel that I should dump all of the "lovely" news on you in one dose. It wouldn't be fair to you or me. Why? Because I am still coming to terms with what the medical community is saying to me. I am not prepared, yet, to be a strong shoulder for you while I answer your questions. Selfish, yes. And unapologetically so. I am getting good at being selfish these days. 

As I shared with you, the radiation oncologist here in Arizona -- who, btw is touted as the "go-to radio-onc" (imagine me raising an eyebrow of doubt) was not as forthcoming as the one you communicated with. Radio onc's 20% chance of a 5 year survival was predicated on me first going through the surgical "debulking," followed by an aggressive protocol of  "clean up" with broad-based radiation of the neck, shoulders, axillary and chest wall.

I asked radio-onc how long after such intense radiation exposure would my body begin to show signs of damage to my heart and lungs (predictably leading to heart and pulmonary failure). She would not answer.

My individual situation...my reality that I have to live with, is that I must continue with life-as-is. I am fortunate that my work is something that stirs my soul, because my working is a direct and palpable benefit to my family. Family is what is important to me. Indeed my kids come first. I will never be selfish when it comes to their immediate and long term futures. Each and every decision that I have made over the last 25 years has been about family and building a life and future for my children.

I will also not allow this chronic illness to turn my family into another "recession statistic" -- funneling funds into a medical industry that holds no hope for me. I secured Husband's agreement on that one. What that means is that I will not hurt my family financially while chasing medical pipe dreams. The decisions and treatment protocols I have decided upon (with, again, the surprising support of my medical onc) are to help me manage my chronic illness and still have a quality of life with my children, now. 

I can honestly say, I am feeling better this week - week 3 of my protocol. I do "suffer" immense nausea and fatigue after the high dose vitamin c IVs, but it passes within an hour or two with the help of lime slushies.

You will have to trust me. Your trusting me is important.
The health (emotional and physical) of my children are important to me.
Making sure my children have a competitive edge and a fighting chance in this world that seems like it is being turned on its head is important to me.
Being strong for my children, while I can and when they need me now, is important to me.

Dear-heart, we are all going to die at some point, no? That is the life-cycle. It is also very possible that the cancer may not be what kills me. It is as likely that a reckless driver on the interstate, or the space debris currently falling to earth is is what causes my death. Old age may be what finally takes me. The point is, none of us know with any certainty how we will die...only that we will.  Because of a bizarre turn of events, I am "fortunate" to have (potentially) prophetic knowledge of my demise. Embracing my mortality on a daily basis does color my daily responses and perceptions. 

What is important to me is that the time I am here is spent with meaning and with as many quality moments with those that I love. Giving up sitting on the sidelines at my son's soccer practice, so I can chase a possible treatment far away from him, pales in comparison. Attending my son's concerts; making his lunch in the morning while quizzing him on science vocab or math problems; reading with him at night snuggled in his bed together -- I would never make a choice that would steal those moments away from me, now. These moments cannot be recovered, and are real now. The future, under the best of circumstances is unpredictable. 

Not being able to have my girls reach out and share with  me all of their daily joys and sorrows (18x a day -- really!) would decimate me emotionally. Being a sounding board for the volatility of their developing adult-hoods is the reward of parenthood. My girls are growing up, now.  And there is Husband. He has been my BFF and "work in progress" for 25 years now - and I have not finished with him as yet! He is not getting out of this marriage that easily, especially when he is yet to be housebroken.

Missing all of this while I am here in the moment feeling strong and relatively healthy, well, that would kill my spirit long before my body would crumble.

~TC

Another "Lens" in Which to View the Dreaded "PINKTOBERFEST"

******

By: Dawn

Maybe I should make this entry pink, pink lettering on a pink background, totally unreadable, just a sea of pink. Why would I want to put all this effort into writing a blog entry just to have it unreadable? Why do people keep making breast cancer seem like a happy, fun, feminine, cool, trendy disease?

The facts aren’t that happy. Sure, it’s not the death sentence other forms of cancer are. Let’s face it, some cancers are quick, brutal, and rapidly deadly. For those cancers, the question isn’t “if” but “when.” I have a friend who has a specific type of cancer that has a 0% five year survival rate. ZERO percent. I don’t know what the one year survival rate is, but it’s not great. Another of my friends was told she’d live 12-18 months. She fought hard. She battled mightily. She lasted 15 months if I count correctly. Compared to those types of cancer, sure, breast cancer rocks.

But do all of those people who are so happily pink, festooned with ribbons and feather boas and running and dancing and doing all those fun things for a cure really aware of how great breast cancer is? How survivable it is? How much progress has been made?

For starters, when we talk about “surviving” with breast cancer, we speak of surviving five years. The term is “the five year survival rate.”

Pardon me for not being too chipper about that. I’m coming up on my second cancerversary.

If a woman happens to be Hispanic, which I am not, she’s more likely than other women to get aggressive breast cancers and die from breast cancer . Were you aware of that?

I’ve heard people, endurers as well as the non-effected, say, “At least the tumor is estrogen (or progesterone) receptive. There’s a pill for that.” Yes, indeed there is. And those tumors tend to grow more slowly. See how aware we all are? Yet, not 100% of all those hormone receptive tumors respond to medication . In fact, for people who are progesterone positive, under 20% respond to hormone therapy. Oops! Wasn’t aware of that fact.

Many people are also aware that another type of cancer, the type I had, is particularly aggressive. It’s called HER-2+ breast cancer. But joy of joys! Herceptin cures it! And if it does come back, “you just do herceptin treatments for the rest of your life.” Well, that’s probably correct. As long as the herceptin continues to work. Of course, Tykerb is also an option. But sometimes that doesn’t work, either. And, the woman dies.

We are also all aware that breast cancer is curable. And that’s true. To an extent. Most women don’t die from the cancer in their breasts. They die from the cancer that has spread to other places, their brains, their livers, their lungs, their bones. If the cancer just stayed in our breasts, we’d be fine. Cut it out, chop ‘em off, radiate ‘em. End of story. However, that’s not how breast cancer works. There’s never, ever a guarantee that even the smallest spot of cancer hasn’t sent cells out into the blood stream or lymph system, so many (most) women have cells, lurking, waiting to come to life. Yippee.

Many of us are aware that there are things we can do to “prevent” breast cancer. No, not really. Other than cutting off breast buds at birth, there really isn’t anything that “prevents” breast cancer. There certainly are ways women can reduce their risks, their life time, risks of breast cancer. These include staying within five pounds of a healthy teenage weight, exercising an hour a day, eating a mostly plant-based diet, breast feeding, having babies earlier rather than later. These are not “preventative” as we’d like to think. Breastfeeding is not the same as wearing a condom to prevent pregnancy. A condom is, what, 99% reliable although users of them tend to be less so? Breastfeeding your baby for a year, two years, a total of 13 years spread over several children, does nothing more than reduce one person’s life time risk of getting breast cancer. It’s not the same as, say, not smoking to prevent lung cancer. Being thin, fit, young, and nursing does not mean one doesn’t have to still screen and hope for the best. Many women aren’t aware of that. When I was diagnosed, some ardent breast feeding person who was touting breastfeeding as “preventative” had the gall to ask me if I had a family history, as if…whatever. She said she was counting on nursing to “protect” her. Idiot. Simple stupidity. Further proof that the USA sucks at math and mathematical reasoning.

Let’s talk about long term survival. We are aware that a lot of women survive for years. Women are typically over 60 when they are diagnosed. Let’s face it, when you are in your late 60s or your 70s or older, “long term” takes on a whole different meaning than when you are in your 20s or 30s or 40s.

And none of this takes into account the negative effects of cancer treatment on a person’s general health. For starters, cancer treatment can lead to new cancers. We are all aware that radiation can cause cancer. Cancer treatment often includes radiation. There’s a double-edged sword. Better yet, there’s the chance that treatment will cause heart, liver, or kidney damage. The Tykerb I take now is black box labeled for liver damage, “sometimes fatal.” Nothing like killing yourself to stay alive.

Herceptin (and Tykerb) can also cause heart damage. My radiation treatments also got a part of my heart. Isn’t that swell? Oh, yes, my lung, too, was radiated. Heart, liver, and lungs! Oh, my!

There are also lesser, yet also life altering, long term effects, such as a change or decrease in the ability to taste, chronic fatigue, mental fuzziness to the point that some people are unable to continue in their careers, loss of mobility, nerve damage especially in the feet and hands, chronic constipation or the opposite, chronic diarrhea.

I don’t think most people are aware of this. That to “survive” does not mean to “get better” and that life isn’t always pink and rosy are not parts of awareness.

Yet, we are aware that there’s a “cure” out there. In fact, when it comes to breast cancer and pink, “awareness” seems to be synonymous with “cure.” However, one would think that if an organization were really, truly concerned about a “cure” their money and focus would go to what…awareness/education? or research? prevention or parties? I’d like my money to go to research and prevention. Check out these charts to see where it really goes.

Just so you are aware.

~Desiderata

Rock and a Hard Place...

******

I find this song running through my head constantly this week,
as I consider this next stage's options...
=============================================

(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

Nurse Tracy Calling

******

Four Winds Oncology, can you hold?

Of course

May I help you?

May I speak with one of Dr. Obenchain’s nurses?

I’m Nurse Tracy, I can help you.

Oh hi Tracy. I don’t believe we have met before. This is “TC” I got a letter from SMIL stating they it was imperative they do additional studies, to supplement my breast MRI last Tuesday. I have called them. They want to do a mammogram on my right breast and an ultrasound on my left. They will need the doctor to fax over orders. But, I have a couple of questions that I need answered before we proceed.

Of course. Tell me what they are and I will talk to doctor and get back with you, and I will talk to her about the orders.

Thank you, my questions…concerns, rather are (1) since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram – even a diagnostic mammo, why do we need to do either? SMIL said that the MRI images were perfect in clarity; and (2) what is SMIL seeing on the MRI that makes them (a) want to do additional exams, and (b) what less comprehensive exams tell us that the MRI can’t?

I can’t answer those questions, I will have to request the report, have doctor review it and call you back.

Yes, I realize that, thank you. I would appreciate you following up with the doctor, thank you.

4 hours later….

Ms. TC, this is Nurse Tracy calling from Dr. Obenchain’s office. I have your answers. SMIL says that they do not have a current mammo on your right breast and want it for their records, so that is the reason for that follow up exam. Regarding the ultrasound, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there. That is the reason for the ultrasound request. The doctor said that's fine, and I am preparing the orders to fax over to the lab now.

Oh. What about my initial question?

What was that?

My question of necessity. Since the MRI is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo, why do we need to do either?

Oh, as I said, because SMIL says that they do not have a current mammo on your right breast and need it for their records. And, because the scar tissue from the sentinel node biopsy is greater in size than your last PetScan they want to make sure of what is there.

Right, I understand what you are relaying as SMIL’s reasons, but isn’t it true that the MRI, that was just conducted 6 days ago, is a more comprehensive diagnostic exam than either an ultrasound or mammogram– even a diagnostic mammo. And as such, that it should give both SMIL and Dr. Obenchain the information they need to determine what is going on with the scar tissue as well as the status of the right breast?

Ms. TC, you haven’t had a diagnostic mammogram on the right breast in over a year. With your history, you need to have a diagnostic mammogram at least annually.

Tracy, I don't think I agree. I am not so sure that is necessary, in light of my history. The mammograms are not as effective as detecting ILC as an MRI.  My individual history includes the sequence of diagnostic events, in order of certainty, as: (a) diagnostic mammogram; (b) ultrasound; (c) biopsy; and (d) MRI. Knowing all this, I raise the question - isnt doing a mammogram now going backward, diagnostically speaking? And, therefore unnecessarily exposing me to radiation?

Ms. TC, radiation exposure to mammograms is minimal. You got significantly more radiation exposure with the MRI.

Um…Tracy. I don’t believe that is completely accurate. My understanding is that an MRI does not involve exposure to ionizing radiation. Doesn't an MRI use magnetic fields and radio frequency pulses – not radiation. Mammograms, on the other hand, do indeed use ionizing radiation – I know the radiation levels are not astronomical but it is certainly higher than an MRI. Besides, aren’t there more risks of false positives with mammograms than MRIs?

(Pause...heavy sigh...) Ms. TC, it is your choice as the patient, if you do not want to have the mammogram that is just fine. I will note that you are declining the mammogram here in the file. Is there anything else, otherwise I do need to attend to other patients.

What about the necessity of the ultrasound? My understanding is that the MRI would be more conclusive in determining what is going on with the scar tissue than an ultrasound.

Again, Ms. TC, it is your choice if you do these exams or not. Doctor has signed the orders. Just let our office know what you decide. Have a good day.

I hung up and immediately started writing. Since the beginning of this journey I have always kept a journal when meeting with or talking to any and all medical professionals. There is too much information and bias that is thrown out there, and taking notes is the only way I can properly process and distill everything in my own time and context. With the second conversation, four hours later, I was keeping copious notes. I wanted to confirm for myself whether or not my questions had indeed been answered - or not. It is entirely possible that I am suffering some residual effects from last week’s concussion and was just not "hearing" Nurse Tracy. Though, I am fairly certain - upon review, that the substance of my questions were never addressed.

Thank you, Nurse Tracy, you have a good day too!

PSA - Overdiagnosis Is Not a Trivial Matter

******

One in Three Cancers Diagnosed with Free Mammogram Screening Is an "Overdiagnosis"
by David Gutierrez, staff writer

(NaturalNews) In countries with public breast cancer screening programs, one in every three diagnosed with invasive breast cancers would never have produced symptoms in a patient before she died of other causes, a new study has revealed.

"Screening for cancer may lead to earlier detection of lethal cancers but also detects harmless ones that will not cause death or symptoms," wrote the researchers, from the Nordic Cochrane Center in Denmark, in the British Medical Journal.

"The detection of such cancers, which would not have been identified clinically in someone's remaining lifetime, is called overdiagnosis and can only be harmful to those who experience it."

Researchers analyzed breast cancer diagnosis rates among both screened unscreened women in Australia, Canada, Norway, Sweden and the United Kingdom for at least seven years before and after the public breast cancer screening programs in those countries began. As expected, they found that breast cancer diagnosis rates in every country increased in conjunction with the introduction of screening programs. Breast cancer rates among older women did not undergo a corresponding decrease, however – suggesting that rather than detecting cancers earlier, screening was merely detecting cancers that would otherwise never have produced a detectable effect on a woman's life.

When all forms of breast cancer were taken into account, the rate of overdiagnosis after public screening programs were introduced ranged from a low of 46 percent (in Sweden) to a high of 59 percent (in Canada), with an average overdiagnosis rate of 52 percent. When only invasive breast cancers were taken into account – cancers that have spread beyond the mammary tissue and are more likely to be lethal, and thus more likely to be treated aggressively – the average rate of overdiagnosis was still 35 percent, or more than one in three.

This was the second time that this research team had found evidence that overdiagnosis is a serious consequence of public screening programs.

"[The study] means that screening for cancer, in this case breast cancer, is a much closer call than has been previously advertised," wrote Gilbert Welch of the Dartmouth Institute for Health Policy in an accompanying editorial. "It has the opportunity to help some women but it also has the consequence of leading others to be treated needlessly for cancer and that's not a trivial thing."

Because no tests exist that can predict how aggressive or dangerous a cancer will be, all women diagnosed with breast cancer are referred to similar treatment programs, many of which – such as chemotherapy, radiation and breast surgery – carry serious and even dangerous side effects.

Screening advocates insisted that the benefits of screening still outweigh the risks of overdiagnosis.

"Without screening, women would face the prospect of having to wait for a visible symptom of cancer, such as a lump, to become apparent before treatment could start," said Emma Pennery of Breast Cancer Care.

Sarah Cant of Breakthrough Breast Cancer agreed, but said that women should be given clear information about screening in order to make informed decisions.

Welch also believes that better information is essential, saying that doctors should show women a simple statistical table quantifying the relative risks and benefits of screening for them, based on their own risk profile.

"Mammography undoubtedly helps some women but hurts others," he said. "No right answer exists, instead it is a personal choice."

Researchers do not know how many lives are saved for every case of overdiagnosis, with estimates ranging between one in two and one in 10.

Welch noted, however, that "the amount of overdiagnosis is a function of the mammographer's threshold to recommend biopsy."

"The time has come for a randomized controlled trial to test higher thresholds, such as only recommending biopsy for breast masses larger than a certain size," he wrote.

Sources for this story include: news.bbc.co.uk; www.cancerpage.com ; www.tehrantimes.com; www.oncologyupdate.com.

TC Postscript: What the above article does not delve into is that mammogram is not an effective diagnostic tool to detect Invasive Lobular Carcinoma ("ILC"). Each time I confirmed my diagnosis with another health care professional, I asked each of them the question: If I had had regular mammogram screening (as my "Buddy Check 12" -- AZ reference) reminded me to do via email, and which I did not heed, would my ILC been detected at an early stage? The unanimous answer by all was, NO. It has something to do with the pattern of infiltration in and outside of the mammary tissue and the indolent nature of ILC.

Consequently, I will continue in not having regular mammograms, but rather, will be having diagnostic ultrasounds.

Still free-falling down the rabbit hole

******

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.)

"Cookie Cutter" Thinking Down the Rabbit-Hole

******
Today, I need to take a few detours. Full warning & disclosure...today I RANT! Beware of flying "d-bombs."

Sprinkled in between preparation and belligerently peppy is SURREAL. The journey that started on July 8, 2009, and the place I find myself at today can only be summed up as SURREAL.

The med-pros told me from the start that I am dealing with a 4 to 5.5 cm tumor. Each time I was diagnostically measured 5+ cm (and I had 4 levels of diagnostics) I got the qualification that, "its hard to tell with ILC ("invasive lobular carcinoma") BUT (and here is the kicker)...MRIs exaggerate the measurements of ILC tumors."  So, the expectation is that the malignancy will be closer, if not indeed smaller than, 4 cm.

So, when it comes back ... SURPRISE ... its a bouncing 6.2 cm. (NEARLY 2/3 OF THE SIZE OF MY LEFT BREAST!) (And for those in the studio-audience that have not gleaned the obvious, ample bosoms is...oops, I did it again...was not one of my physical attributes.)

Okay, that's cool. They took the whole SHATZBAT (thanks Kuwie!) and here I sit with my play-dough boobee (that is a tad bigger--certainly perkier--than the "lonely lady" next door - but that too will change with reconstruct round #2).

All of the above has been dealt with in a head-on fashion. Done! Fini!

Today, I had a sit-down with the med-oncologist (part of the med-pro squad) whom I chose because he at least admitted to being part of the industrial b.c* complex (plus, he has this really cool name: KATO - and I was just so enraptured with the Green Hornet's sidekick, Kato (aka Bruce Lee) as a kid). Oh, and he laughs at my jokes, REALLY! Someone truly does!

Sigh...but I digress...

So, we are having what I think is going to be this "team strategizing" meeting as to what should be my next treatment steps in this journey of "survival." I had the expectation that we would be discussing an individualized "treatment plan" specifically tailored to ME, moi, ya know... one of the (in)distinct individual "cogs" that keeps the industrial b.c. complex churning. Otherwise known as the individual patient!  Instead, I get "standard of care" party line! I get the perfunctory chemo, radiation, hormone therapy (replete with heavy-duty dosages of the "red devil" and Tamoxifen!).

I ask this Kato (who is so not looking like my childhood Kato anymore) and say...yeah, but that is the "cookie cutter" plan. What about me? The vacuous stare I received in response confirmed my worst preconceptions. He did recover quickly and replied defensively, no its not, it is based on the size of your tumor...(as he pulls out the cardboard stand-up that is used for "show n'tell" (??) and points to the 5 cm measurement scale)...see your tumor is off the display! Ahhh...I replied, I'm feeling the personalization now, I just needed the visual cut-outs!

This is advanced U.S. medicine (at least in the southwest) at its....? SURREAL Thank g-d I am one of the lucky medically insured in this country?!

It gets even stranger the further down the rabbit-hole I go. What the med-pros are offering is "adjuvant" therapy on a toxic-platter. (Meaning: the "just in case" treatment) The med-pros cannot tell me with any assurance that the lobbing-off of one of the ladies is definitive of my survival; they cannot tell me with any assurance that the toxic-buffet will be definitive of my survival; but they can tell me with a modicum of assurance that I will experience many, if not all, of the horrific side-effects if I partake in the meal-plan being offered; and my insurance will pay for it! Surreal

IF I choose not to dine at their buffet... well, then the med-pros can assure me that. . . .(????)

####

*  b.c. = "breast cancer"
*  industrial complex = that very lucrative niche industry that turns a greater profit in the name of the CAUSE than the CURE