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

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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

PSA - Benefits of Vitamin C . . . (Part Three)

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National Institute of Health Confirms Vitamin C Effectiveness


National Institute of Health / National Cancer Institute – “Early clinical [Cameron/Pauling] studies showed that high-dose - oral OR intravenous vitamin c, may improve symptoms and prolong life in patients with terminal cancer. Double-blind placebo-controlled [Mayo Clinic] studies of oral vitamin C therapy showed no benefit. Recent evidence shows that oral administration of the maximum tolerated dose of vitamin C (18 g/d) produces peak plasma concentrations of only 220 µmol/L, whereas intravenous administration of the same dose produces plasma concentrations about 25-fold higher. Larger doses (50–100 g) given intravenously may result in plasma concentrations of about 14 000 µmol/L. At concentrations above 1000 µmol/L, vitamin C is toxic to some cancer cells but not to normal cells in vitro.

We found 3 well-documented cases of advanced cancers, confirmed by histopathologic review, where patients had unexpectedly long survival times after receiving high-dose intravenous vitamin c iv therapy. We examined clinical details of each case in accordance with National Cancer Institute (NCI) Best Case Series guidelines. Tumour pathology was verified by pathologists at the NCI who were unaware of diagnosis or treatment. In light of recent clinical pharmacokinetic findings and in vitro evidence of anti-tumour mechanisms, these case reports indicate that the role of high-dose intravenous vitamin c iv therapy in cancer treatment should be reassessed.”

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1405876

Dr. Mark Levine of the National Institutes of Health in Bethesda, Maryland, and colleagues note that, in vitro, vitamin C is toxic to some cancer cells but not normal cells at concentrations above 1000 µmol/L. IV doses in the range of 50-100 g result in plasma levels of about 14,000 µmol/L.

The team analyzed clinical and histological data from three patients with advanced cancer who responded to high-dose IV vitamin C.

The first patient was a 51 year-old-women with advanced renal cell carcinoma, treated with nephrectomy, and several small lesions in the lung "consistent with metastatic cancer." She received IV vitamin C 65 g twice a week for 10 months, in combination with other alternative therapies, including thymus protein extract. Repeat chest radiography revealed one small spot, assumed to be a scar. Five years later, new lung masses were detected.

The patient again received intravenous vitamin c, with unsuccessful results. The second patient, a 49-year-old man, had bladder cancer with multiple satellite tumors. He received IV vitamin C 30 g twice a week for three months, followed by 30 g vitamin C once every 1-2 months for four years. . Nine years after diagnosis, the patient is in good health, without signs of disease.

Case three was a 66-year-old woman with B-cell lymphoma invading paraspinal muscle and bone at L4-5. She received IV vitamin C 15 g twice weekly for 7 months, then 15 g every 2-3 months for about one year. Ten years after diagnosis, the patient is in good health.

Dr. Levine and colleagues note that all three patients survived for longer than expected for the types and stages of cancers that they had. At the doses delivered, vitamin C "is a pro-drug for hydrogen peroxide formation in extracellular fluid," they explain. Histology results also showed evidence of tumor hemorrhage, attributable to ascorbate.

The investigators conclude that "the role of high-dose intravenous vitamin c therapy in cancer treatment should be reassessed."

What is NOT wrong with this picture ?

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The phrase "above all, do no harm" is usually attributed to the Hippocratic Oath. Hmmm...if this is true, then it begs the question: what is NOT wrong with this picture . . . ?

I spent a full month researching and locating the "top" breast cancer specialists in Arizona. I narrowed the search down by personally interrogating (I mean, interviewing) the reported "best of the best." Those who made my final cut (OUCH!) were fully vetted. When I speak to the lay people involved in the ICBC, Inc.* I got, and still get, the collective nod of approval. (visualize bobble-head dolls.) This should give me peace of mind, no? (and I am not referring to the bobble heads). Having such a prestigious medical team should allow me the needed space to relax and trust in their learned opinions, right? After all, I chose them. So, if this is the case, then WHY is it...

...that I had to ask my medical oncologist to order a PetScan? Each varied member of the med-pro squad kept talking about the integral information that a PetScan can provide to assess the need and breadth of adjuvant treatments. Not to mention that the results would significantly add to the conversation of prognosis. Despite this apparent necessity not one of the Med-Squad wrote a script for a PetScan, until I insisted.

...that I had to request my medical oncologist send my tumor to the only lab in the U.S. that conducts an Oncotype DX test on malignant breast cancer tumors. Recall back to the PSA on August 31.. Why did I have to be the one to ask when my cancer, prima facie, fits the criteria to be tested. And, the results of this test can be a key factor in whether and what adjuvant treatment(s) would have the greater positive impact soup.

...that the "insurance compliance division" of the Oncotype DX lab is required to inform me, prior to running the test, that my health insurance policy (and I am talking about top-of-the-line PPO coverage) may not cover the cost of the test, unless the ICBC, Inc.*  is satisfied that the test is medically necessary?

Whaaaa ??? Rewind !!! Let's review the facts:

(1) According to a Journal report of the American Society of Clinical Oncology, 85% of patients don't benefit from chemo; and according to a talk this summer given by the head of the International Genome Consortium (Bob Pennie), the number is actually 90% of patients do not benefit;

(2) that the standard "cookie cutter" dispense of chemo is 8 cycles and the cost of the 8 cycles is 2x the cost of the Oncotype DX test;

(3) that the medications prescribed to help mitigate the nasty little side-effects of chemo can run up to 1/2 of the cost of the Oncotype DX test; and

4) that these same nasty little side-effects can create long term health issues that have the potential of running up unimaginable costs for both the insurance company as well as...oh yeah...the one with the cancer.

The silver lining to this disconnected thinking is that the Oncotype DX lab has its own in-house appeal division to deal with the idiocracy of the insurance company. The lab, Genomics in California, offers a free-of-charge 3-tier appeal process because they deal with this reactive thinking all the time.

Those who want to maintain the current health care status quo would point to the lab's "enlightened service" as an example of how the market system works. I.e, a need was identified and the market forces filled it!

Sigh...in my world, this mental myopia is a cancer in and of itself.

And what about the promoted adjuvant treatemtns...like, Tam-toxic-fen?

Tamoxifen is a "Selective Estrogen Receptor Modulator" intended to be prescribed to women with DCIS (ductal carcinoma in situ) -- a non-invasive disease, and which is reportedly 99% curable without Tamoxifen. This "wonder drug" has been proven to quickly cause thickening of the uterus - a precursor to uterine cancer. Indeed, Tamoxifen increases the risk of two types of cancer that can develop in the uterus: endometrial cancer, which arises in the lining of the uterus; and uterine sarcoma, which arises in the muscular wall of the uterus. In the initial trials of Tamoxifen in the 1970s, a significant amount of women died, not of their breast cancer, but of endometrial (uterine) cancer. Like all cancers, endometrial cancer and uterine sarcoma are potentially life-threatening. As such, the World Health Organization thought it prudent to list Tamoxifen as a "cancer-causing" drug. In addition, the Med-Pros appear to gloss over not only the 2x higher rates of endometrial cancer in women with breast cancer, but also the increased rates in blood clot diseases (pulmonary embolism, deep vein thrombosis, strokes) and cataracts caused by the drug.

Indeed, in most of the NCI (National Cancer Institute) study results that I have reviewed, there did not appear to be any statistically significant difference in the chance of dying whether or not a woman took Tamoxifen. Nor, did there appear to be a difference in breast cancer deaths overall. There are projections of long-term improvements in survival, but they are only projections. According to the National Women's Health Network's analysis of the Tamoxifen claims, if you take out unknown, unrelated, or non-GYN cancers, the exact same number of women appear to have died in both test groups. It is also known that minority women were not well represented in this study, in spite of efforts to do so. So whatever the final results may be, they may not apply to all women.

Across the pond, in Britain's reputable Lancet medical journal, a European study showed that when Tamoxifen was taken for the standard cookie cutter 5-years, the risk of uterine cancer increased by 6.9%, and, the developed cancer was of a more deadly strain. Benraadt , Coenbergh W et al. Risk of endometrial cancer after tamoxifen treatment of …FE Van Leeuwen - … Risk of endometrial cancer after tamoxifen treatment

According to the University of Virginia School of Medicine, risk factors for endometrial cancers include: "being treated with tamoxifen for breast cancer, age 40 or over, personal history of breast cancer...."

Estronaut's assessment of Tamoxifen as a prophylactic drug play out similarly: "Taking Tamoxifen preventively simply trades one disease for another, one cause of death for another. The disease a woman trades for may be worse beyond the absolute numbers. Blood clots can cause immediate death and permanent disability. With breast cancer there is the possibility of cure or at more years of life."

So where does this translate into my situation?

First and foremost, given my lack of family history and health risks, I am in the less than 1% grouping already when it comes to my diagnosis of Invasive Lobular Carcinoma. So, again, the statistical significance of a more than 1% risk factor is not lost on me.

Second, I am in a "complex" subset grouping because of my age in developing ILC and due to the large size of my tumor (6.2 cm).

Third, although ILC can be slow to metastasize to the ovaries, my tumor markedly increased in size from diagnosis on July 8, 2009 to surgery on August 21, 2009. Ovarian cancer, while not in the classification of endometrial cancer, is in close enough physiological proximity that it gives me pause.

Lastly, thus far, I have yet to be presented with any tangible facts or reason to ingest Tamoxifen, or any other chemical for that matter, other than the size of my tumor...which was surgically removed with the rest of my left breast.

Consequently, as a woman diagnosed with ILC, if I were to ingest Tamoxifen for the standard 5 year plan, from where I sit I have a greater risk of developing uterine cancer as my blood payment for the "cure." The ICBC's solution to such a dilemma (actually told to me on two separate occasions -- with a straight-face no less) ... a prophylactic hysterectomy!

AHH!...now that is an enlightened market-based solution!


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

"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