Showing posts with label chemotherapy. Show all posts
Showing posts with label chemotherapy. Show all posts

Wednesday, October 17, 2012

Things People Say . . .

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. . . 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!


 

Saturday, October 13, 2012

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

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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


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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
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.



 

Monday, November 14, 2011

I am having a Hallmark moment...in the pit of my stomach

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Really ?????????

Wednesday, February 9, 2011

Sentinel Node Biopsies (SNB)...Unnecessary?

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Normally when I reprint an article or study for PSA purposes I don't include, within the text, my own editorial comments. In this case, with this study, I feel compelled to throw my "two cents" in ... smack dab in the middle of the reporting. My comments, editorials, opinions, etc are noted in italics. Read on...the "dogma is strong!"

Lymph Node Study Shakes Pillar of Breast Cancer Care
By DENISE GRADY (February 8, 2011 - NY Times)

A new study finds that many women with early breast cancer do not need a painful procedure that has long been routine: removal of cancerous lymph nodes from the armpit.

Medical diagram of SNB Prep
Part and parcel of my mastectomy back in August 2009 included what is termed: a sentinel node biopsy (SNB). This is where, as a matter of protocol, the surgical oncologist removes the first few nodes from the armpit, closest in proximity of the cancerous tumor. This is surgically accomplished after a lengthy prep of injecting the nodes - through the breast tissue, with radioactive material. The trick is then to keep the patient (moi) still for nearly an hour's time, to allow the radioactive material to settle into the nodes. It is this "settling" that gives the surgeon direction as to which nodes to remove. Once removed, and while the mastectomy is concurrently being done, a pathologist reviews these nodes and determines if any further excision is required.

The discovery turns standard medical practice on its head. Surgeons have been removing lymph nodes from under the arms of breast cancer patients for 100 years, believing it would prolong women’s lives by keeping the cancer from spreading or coming back.

One would think that after 100 years of post-surgical study that this "new" information / possibility / probability should have, could have been discovered / explored sooner. The latency of this revelation, in and of itself, is greatly disturbing. And there is the tiny little fact that DESPITE having had a SNB; and DESPITE the fact that I did have one positive node but current medical protocol was to ignore it as a "false positive" -- attributable to the SNB itself...nearly two (2) years to the day it is confirmed that my breast cancer has indeed spread into my lymphatic system. What does this mean? Well, because of the active lymph nodes being so close to the primary tumor site, there is a very high probability that distant organs are affected. The challenge with ILC is, however, that it is difficult to early detect any potentially affected organ because until the invasive forms into a detectable mass. Which is my cancer hx thus far.

Now, researchers report that for women who meet certain criteria — about 20 percent of patients, or 40,000 women a year in the United States — taking out cancerous nodes has no advantage. It does not change the treatment plan, improve survival or make the cancer less likely to recur. And it can cause complications like infection and lymphedema, a chronic swelling in the arm that ranges from mild to disabling.


Example of lymphedema
patient with a medical sleeve
I was very fortunate. Aside from some initial post-surgical swelling, I did not develop lymphedema -- although my med-pro team was fully anticipating I would. Because of the SNB, however, I need to ensure that during any sort of medical examination (routine or otherwise) my blood pressure is not taken on my left side -- the SNB site. Reason: lymphedema can occur at any time by this simple routine exam as a result of having had an SNB. It is notable that even when I am being examined by a member of my "cancer team" I still have to remind each and every one of them -- each and every time, not to measure my blood pressure on my left-side. Inevitably, and strangely, they all gravitate to the left.

Removing the cancerous lymph nodes proved unnecessary because the women in the study had chemotherapy and radiation, which probably wiped out any disease in the nodes, the researchers said. Those treatments are now standard for women with breast cancer in the lymph nodes, based on the realization that once the disease reaches the nodes, it has the potential to spread to vital organs and cannot be eliminated by surgery alone.

This aspect of the study particularly interests me for two reasons: (1) One of out of the three nodes that I had removed did test positive for cancer cells. I was told, however, that because of a then-recent study in 2009, protocol had changed and advised that there was a strong probability that cancer cells are unintentionally injected into the nodes as a result of the surgical procedure itself. As such, since it was my third node that was positive, the "protocol" was "to do nothing" further, surgically. (2) That said, anyone following my journey will know that I opted out of both chemo and radiation -- despite the heavy-handed pressure by my "cancer team" to aggressively pursue both. I opted out, because of: (a) the disparity within the global medical community as to the efficacy of chemo and radiation in prolonging life after cancer; (b) my own personal "efficacy" test (Oncotype DX) that concluded I would only have up to a 4% margin of efficacy if I underwent chemo; and (c) not finding one medical professional who themselves would subject themselves to radiation treatment (though none of them would "publicly" admit these personal views).

Experts say that the new findings, combined with similar ones from earlier studies, should change medical practice for many patients. Some centers have already acted on the new information. Memorial Sloan-Kettering Cancer Center in Manhattan changed its practice in September, because doctors knew the study results before they were published. But more widespread change may take time, experts say, because the belief in removing nodes is so deeply ingrained.

“This is such a radical change in thought that it’s been hard for many people to get their heads around it,” said Dr. Monica Morrow, chief of the breast service at Sloan-Kettering and an author of the study, which is being published Wednesday in The Journal of the American Medical Association. The National Cancer Institute paid for the study.

This again begs my initial question -- why did this "radical change" take 100 years to publicly disseminate.

Doctors and patients alike find it easy to accept more cancer treatment on the basis of a study, Dr. Morrow said, but get scared when the data favor less treatment.

The above statement makes me ponder just how many of us "patients" they polled. Sadly, I find that many of my fellow breast cancer-club member's have made far-reaching medical decisions solely based on their initial fears. On the other hand, I have also found, and continue to find, a growing number of club members who share my belief that decisions can only be made after extensive research and questioning. And, after extensive research and questioning many of us discover that the "science" behind adjuvant treatment does not play out in our favor; so we opt-out.

The new findings are part of a trend to move away from radical surgery for breast cancer. Rates of mastectomy, removal of the whole breast, began declining in the 1980s after studies found that for many patients, survival rates after lumpectomy and radiation were just as good as those after mastectomy.

The trend reflects an evolving understanding of breast cancer. In decades past, there was a belief that surgery could “get it all” — eradicate the cancer before it could spread to organs and bones. But research has found that breast cancer can begin to spread early, even when tumors are small, leaving microscopic traces of the disease after surgery.

Sentinel node biopsy incision
To the credit of my surgical oncologist (Lise Walker) she was not so arrogant as to believe that surgery could "get it all."  Indeed, she and I had a spirited discussion of the known microscopic cancer cells that were left in my body post-mastectomy. FYI - I did not have the option of a lumpectomy. My tumor was 6.2 cm - i.e., of such expanse that it spread throughout my entire left breast. BTW - it was in Lise Walker's office that I first discovered the book: "What Your Doctor Won't Tell You About Breast Cancer."

The modern approach is to cut out obvious tumors — because lumps big enough to detect may be too dense for drugs and radiation to destroy — and to use radiation and chemotherapy to wipe out microscopic disease in other places.

Modern? Cut, slash and burn has been the protocol for over 50+ years.

But doctors have continued to think that even microscopic disease in the lymph nodes should be cut out to improve the odds of survival. And until recently, they counted cancerous lymph nodes to gauge the severity of the disease and choose chemotherapy. But now the number is not so often used to determine drug treatment, doctors say. What matters more is whether the disease has reached any nodes at all. If any are positive, the disease could become deadly. Chemotherapy is recommended, and the drugs are the same, no matter how many nodes are involved.

This latter sentence is frightening. Not because it causes me to reflect on my choice not to undergo adjuvant treatment. But because it is these types of statements that were used to try and bully me into acquiescing to chemo and radiation -- despite the undisputed medical conclusion that I would not benefit from chemo. It is these types of statements that plant fear into persons dealing with breast cancer and emotionally and mentally inhibits them from becoming informed patients.
Injection of the the radioactive material
in prep for the node biopsy

"...and the drugs are the same, no matter how many nodes are involved." This admission also sends chills down my spine. It should be a big ol' red flag that in light of it taking the med-pros 100 years to publicly declare this "nodal" revelation, that the med-pros are still unwilling, as a community, to reveal that the "standard protocol" for treating breast cancer reached a plateau decades ago. Refer back to my "audience with the Great Oz back in September, 2009."

The new results do not apply to all patients, only to women whose disease and treatment meet the criteria in the study.

The tumors were early, at clinical stage T1 or T2, meaning less than two inches across. Biopsies of one or two armpit nodes had found cancer, but the nodes were not enlarged enough to be felt during an exam, and the cancer had not spread anywhere else. The women had lumpectomies, and most also had radiation to the entire breast, and chemotherapy or hormone-blocking drugs, or both.

The study, at 115 medical centers, included 891 patients. Their median age was in the mid-50s, and they were followed for a median of 6.3 years.

After the initial node biopsy, the women were assigned at random to have 10 or more additional nodes removed, or to leave the nodes alone. In 27 percent of the women who had additional nodes removed, those nodes were cancerous. But over time, the two groups had no difference in survival: more than 90 percent survived at least five years. Recurrence rates in the armpit were also similar, less than 1 percent. If breast cancer is going to recur under the arm, it tends to do so early, so the follow-up period was long enough, the researchers said.

One potential weakness in the study is that there was not complete follow-up information on 166 women, about equal numbers from each group. The researchers said that did not affect the results. A statistician who was not part of the study said the missing information should have been discussed further, but probably did not have an important impact.

It is not known whether the findings also apply to women who do not have radiation and chemotherapy, or to those who have only part of the breast irradiated. Nor is it known whether the findings could be applied to other types of cancer.

The results mean that women like those in the study will still have to have at least one lymph node removed, to look for cancer and decide whether they will need more treatment. But taking out just one or a few nodes should be enough.

Dr. Armando E. Giuliano, the lead author of the study and the chief of surgical oncology at the John Wayne Cancer Institute at St. John’s Health Center in Santa Monica, Calif., said: “It shouldn’t come as a big surprise, but it will. It’s hard for us as surgeons and medical oncologists and radiation oncologists to accept that you don’t have to remove the nodes in the armpit.”

Dr. Grant W. Carlson, a professor of surgery at the Winship Cancer Institute at Emory University, and the author of an editorial accompanying the study, said that by routinely taking out many nodes, “I have a feeling we’ve been doing a lot of harm.”

Indeed, women in the study who had the nodes taken out were far more likely (70 percent versus 25 percent) to have complications like infections, abnormal sensations and fluid collecting in the armpit. They were also more likely to have lymphedema.

I can attest to the abnormal sensations (euphemism for pain), that continue each and every day, to this day, since the SNB and mastectomy in August 2009.

But Dr. Carlson said that some of his colleagues, even after hearing the new study results, still thought the nodes should be removed.

“The dogma is strong,” he said. “It’s a little frustrating.” 

This understated sentiment can be broadly applied in all aspects of the breast cancer industry.

Eventually, he said, genetic testing of breast tumors might be enough to determine the need for treatment, and eliminate the need for many node biopsies.

BRCA Genes I & II Mutation
Had extensive genetic testing prior to the SNB and mastectomy. Did not alter the course of treatment adamantly lobbied for by the "cancer team."

Two other breast surgeons not involved with the study said they would take it seriously.

Dr. Elisa R. Port, the chief of breast surgery at Mount Sinai Medical Center in Manhattan, said: “It’s a big deal in the world of breast cancer. It’s definitely practice-changing.”

Dr. Alison Estabrook, the chief of the comprehensive breast center at St. Luke’s-Roosevelt hospital in New York said surgeons had long been awaiting the results.

“In the past, surgeons thought our role was to get out all the cancer,” Dr. Estabrook said. “Now he’s saying we don’t really have to do that.”

But both Dr. Estabrook and Dr. Port said they would still have to make judgment calls during surgery and remove lymph nodes that looked or felt suspicious.

The new research grew out of efforts in the 1990s to minimize lymph node surgery in the armpit, called axillary dissection. Surgeons developed a technique called sentinel node biopsy, in which they injected a dye into the breast and then removed just one or a few nodes that the dye reached first, on the theory that if the tumor was spreading, cancer cells would show up in those nodes. If there was no cancer, no more nodes were taken. But if there were cancer cells, the surgeon would cut out more nodes.

Although the technique spared many women, many others with positive nodes still had extensive cutting in the armpit, and suffered from side effects.

A lymphedema patient, without
the medical sleeve
“Women really dread the axillary dissection,” Dr. Giuliano said. “They fear lymphedema. There’s numbness, shoulder pain, and some have limitation of motion. There are a fair number of serious complications. Women know it.”

After armpit surgery, 20 percent to 30 percent of women develop lymphedema, Dr. Port said, and radiation may increase the rate to 40 percent to 50 percent. Physical therapy can help, but there is no cure.

The complications — and the fact that there was no proof that removing the nodes prolonged survival — inspired Dr. Giuliano to compare women with and without axillary dissection. Some doctors objected. They were so sure cancerous nodes had to come out that they said the study was unethical and would endanger women.

“Some prominent institutions wouldn’t even take part in it,” Dr. Giuliano said, though he declined to name them. “They’re very supportive now. We don’t want to hurt their feelings. They’ve seen the light.”

Tuesday, January 26, 2010

PSA - Overdiagnosis Is Not a Trivial Matter

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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.

Thursday, December 17, 2009

Rabbit Holes that Lead to Yellow Brick Roads, that Lead to OZ?: PART II

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If I had not been in a public coffee house I think I would have had my second cry since this odyssey began.

Dr. Isaacs' office did call -- four hours later. The
Great Oz deigned to offer me an audience. Yipee Skipee!

"Make sure you bring a CD of your PetScan. He will look at films too, but prefers a CD."

Of course he does . . .

. . . .to be continued


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PART II ---

So I am led to the the Great Oz' (aka Dr. Jeffrey Isaacs
) office. (And for the record, AGAIN, I am the youngest and HEALTHIEST looking individual -- and that includes patients and their care-takers -- in the bus-station sized waiting room.)

I was led into an exam room so the nurse could take vitals and prelim info. I was then led to the inner sanctum - the Great Oz' office. I found it quirky that the nurse kept insisting that I place myself in this uncomfortable looking armchair perpendicular from Oz' chair -- the one "he always sits in speaking with patients. I sat on the couch.

The second faux pas is that they left me in his office unattended far too long. Curiosity is an unshakable vice of mine. I take note of the vanity wall; the pink-ribbon "awards"; that his medical training took place in South Africa; and that from the few pictures the guy is the quintessential middle-aged++, white-haired, white male, white-cloaked physician. Oz does not disappoint. He blusters in, all six feet-tw0 of him with blazing white hair, ruddy-lined faced and an XXL white doctor's frock with his name embroidered in blue under his right lapel.

The discussion is more than interesting. Some tidbits better than others. That which I found medically useful going forward was:

1. Ultrasound is the best diagnostic tool to identify ILC (Invasive Lobular Carcinoma).
2. I may be "surgically" cured at this point, but the biology of the cancer still exists within me.
3. That ILC has a "long natural history for metastasizing" even after the surgical "cure."
4. ILC is indolent, i.e., that it is prone to late relapses (5 / 10 / 15 years) after the primary tumor is found and removed. And that this is with or without adjuvant treatment.

What I found empirically useful in making my determination not to return to the Great Oz was the heart-to-heart that he and I had about the next step, i.e., adjuvant treatment:

Oz: Chemo is for the "unknown" -- to address the biology of the cancer that still exists within you.

TC: What can you tell about my individualistic "unknown" factors?

Oz:
Your "unknown" is the specific biology of the cancer that still exists within you.

TC: Deja vu? And how do we know that the cancer still exists within me? I had a radical mastectomy - nothing was left.

OZ: We don't, that is the "unknown." You must think of chemotherapy as "buying insurance." You buy it "just in case" you might need it down the road, not because you are certain that you need it.

TC: Ah. Can we speak about the "knowns"?

OZ: What "knowns" are you referring to?

TC: Well, we know that chemo has side-effects, correct? With the drugs that you are proposing (Taxotere* and Cytoxan) is that a certainty?

OZ: That is absolutely correct.

TC:
We have the results of my Oncotype DX - the "RS" score says I have only a 4% margin of efficacy if I opt for chemo, correct?

OZ: If the biology of your tumor was taken into consideration with the Oncotype, yes! (Both Oz and I later independently reconfirmed the results, directly with the pathologist at the Oncotype lab.)

TC: So the choice I am presented with is
100% certainty of side effects with 4% margin of efficacy, correct? And with this "known" you are recommending chemo?

OZ: That is absolutely correct. And, yes, I am!

TC: I am not a statistician, mathematician, or even an economist -- but that does not sound statistically sound nor a good return on my "insurance" investment, to me?

(This is where my "Aha" moment with Oz hits...)

OZ: I suppose it comes down to how much you value your life. Yes, 4% is small but a real benefit. The 4% is your only window of opportunity here to fight the "unknown." If you have any desire to be around to see your children grow and be a grandmother, then 4% is what you are dealing with.

TC: Excuse me! That sounds like a very twisted ultimatum. I value the quality of my life -- and those around me stuck with me and this disease. I am not one for quantity for the sake of quantity! What about the plethora of research that is ongoing?

OZ:
You must understand we have hit a wall with adjuvant therapies. Yes there are millions of dollars raised and spent each year on research -- but it gets us nowhere. You only have one shot at this. This is what we have to offer you, and you have to do something. If we were in Sweden it would be a different story, but we are not. Let's examine you shall we?

One would think I would have walked out at this juncture. But I didn't. It is not because I had bought into his ultimatum. It was just that curious vice gene of mine again. I felt like I was witnessing a multi-car pile up, train crash, or airplane catastrophe. I couldn't walk away. . .

What more did I learn? Well, the icing on the morning was witnessing
Oz verbally tear into his nurse for not getting his exam-room printer working; Oz' decree that I had a bulky uterus and needed to have a pelvic ultrasound done asap; and his tossing me (no kidding -- he tossed) an unsolicited prescription for Tamoxifen. . . .

TC: I would like to discuss my concerns with taking Tamoxifen. I am not comfortable with this script.

OZ: EVERYTHING has side effects. Just take it and let me know by the end of October if you are going to follow my recommendation for chemo.

I left the
Great OZ, standing behind his "big voice" screen turning his control wheels. I was done with the Yellow Brick Road. I learned that I much prefer rabbit holes.


Post Script: I called the radiologist who read the PetScan and asked him to look at my results again, particularly the uterus. He did and amended his report. I went to my GYN and shared Oz' concern and the amended PetScan report. All normal.

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* Taxotere:

The most common severe side effects are low white–blood-cell count, anemia, fatigue, diarrhea, and mouth and throat irritation. Low white–blood-cell count can lead to life-threatening infections. The earliest sign of infection may be fever.

Other common side effects from Taxotere® include nausea, vomiting, hair loss, rash, infusion-site reactions, odd sensations (such as numbness, tingling, or burning) or weakness in the hands and feet, nail changes, muscle and/or bone pain, or excessive tearing.






Thursday, September 24, 2009

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.. . . Hmmmwhy?

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.)

Friday, August 28, 2009

"Cookie Cutter" Thinking Down the Rabbit-Hole

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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. . . .(????)

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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