My Great Breast Cancer Adventure

Cancer Mortality Rates

Ann Fonfa just sent this email out to the listserv I'm on, for women who are using alternative treatments for breast cancer; I don't think she'll mind if I pass it along:

Nancy E. Davidson, MD, during her Presidential Address yesterday, spoke of both the accomplishments of scientific and clinical research - which have contributed to an annual 2% decline in cancer mortality and a growing population of cancer survivors - and the multiple challenges facing ASCO (American Society for Clinical Oncology) in the coming years:

Dr. Nancy E. Davidson Reflects on Accomplishments, Challenges of Oncology Community During Presidential Address 

This article was sent to me by the American Society for Clinical Oncology where more than 15,000 oncologists from all over the world gather to listen to talks and visit ENORMOUSLY expensive Pharmaceutical exhibits (paid for by patients).

It is unimaginable that 2% is considered EXCELLENT but it is.  In any other area of life, this would be seen as absurd.  But oncology has its own rules.

Visit our website and encourage anyone with cancer to do so as well.  Our meeting Second Annual Evidence-based Complementary and Alternative Cancer Therapies will be held January 8-10, 2009 in West Palm Beach, FL.

Ann Fonfa

http://www.networkforgood.org/pca/Badge.aspx?BadgeId=106174
Ann Fonfa http://tinyurl.com/8yw8r (see this article on us)
President, The Annie Appleseed Project
www.annieappleseedproject.org

Information, education, advocacy and awareness on complementary, alternative, natural cancer therapies. Make more fully informed treatment decisions The information provided is for educational purposes only. It is not meant to diagnose or treat any health condition and is not a replacement for treatment by a healthcare provider.

More About HRT and Breast Cancer (Yes, I'm like a dog with a bone)

The following words are my "lay person's" words. I suspect that a doctor might deem them to be overly simplistic. I'm sure they ARE. But even if they are simplistic, they may still be right:

I continue to be discouraged by the amount of conflicting information one finds when trying to understand why most conventional breast cancer treatments order you to: 1) Stop all HRT (hormone replace therapy), and 2) Take estrogen blockers, so that you essentially erase all the estrogen from your body (Note: This is recommended for women with ER+, PR+ breast cancer, which means estrogen receptor positive and/or progesterone receptor positive). Tamoxifen blocks estrogen. Arimidex does too. There are several heavy duty drugs that do this, and they don't all work exactly the same way, but the end goal is the same.

Doctors will tell you (as will many studies) that these estrogen blocking drugs will signficiantly reduce your risk of having a recurrence, compared to women who don't take them...or women who actually continue to ADD estrogen to their bodies, with HRT.

Well, that's right. But what they don't tell you is that your risk of DYING sooner is greater if you stop HRT and/or block your estrogen. How can this be? It can be because your body needs estrogen to be healthy, and if you take the estrogen away, you end up dying sooner FOR OTHER REASONS, EVEN IF you are more likely to have a breast cancer recurrence.

What you always have to remember is: Survival is primary. Avoiding recurrence is secondary.  But doctors are focused on telling you what to do to prevent CANCER, and that isn't necessarily the same as what to do to LIVE LONGEST.

One theory as to why women with breast cancer who don't block estrogen live longer than women who do is that estrogen protects your bones, keeps them much healthier and stronger. This in turn may help to keep you from getting metastatic bone cancer (that is, breast cancer cells that have metasticized to your bones).

So. Let's say you have the following choice. You can:

1. Have a recurrence sooner, and then have to deal with it by, say, having a second lumpectomy or perhaps even a mastectomy. And/or by increasing your alternative treatments, which ARE out there.

2. Not have a recurrence as fast, but end up instead with metastasis to the bone.

My choice would be #1, because #1 is less likely to kill me than is #2. I will most likely SURVIVE longer (and in less pain) if I opt for #1.

Granted, neither choice is appealing. But...tough shit.

Oh, and one more thing. If I end up with metastatic bone cancer, I bet there will be people who say, "Poor Jane, she believed she had a better chance of not getting it if she stayed on HRT, but look where that got her."

But they would be saying that without having all the information. Important information would be this: Immediately after my bc diagnosis, I was ORDERED by the doctors to stop HRT asap. I had my doubts but was scared to death, so I ignored my doubts and did what they said. For the next year I went without the protection of HRT. In addition, I allowed them to talk me into taking Arimidex. Granted, I stopped it after only three weeks (instead of six months or more), but still, those three weeks of "estrogen eradication" really did a number on me.

SO: Basically, during a time right after two surgeries, when I was MOST vulnerable to cancer cells being spread via my circulatory system, after being disturbed by surgery, I allowed my body to get weaker. I went without a crucial defense: estrogen. Also testosterone. Also progesterone.

Do I worry that this was a mistake? Yes. But I try to let that worry go, since there's nothing to be done about it now. All I can do is move forward armed with more and, I hope, better knowledge and confidence in my own judgment.

Ann Fonfa, for Starters!

Here's the last line in "Blogmaid's" comment from the day before yesterday, which I'd also like to respond to:

How can we make you an authority so that others (ie the mainstream medical establishment) will be more willing to listen?

I have no idea. My first thought is "forget ME!"....there are women out there who have been working tirelessly, for YEARS, chipping away at the mainstream medical establishment. Take Ann Fonfa, for example, who created the website annieappleseed.org (the link to which has been in my sidebar every since I began this blog).

Ann used alternative treatments to heal her own breast cancer and is still here to talk about it more than a decade later (and her cancer was NOT mild; she has diligently dealt with numerous recurrences, and she never had chemo or radiation).

Ann changed her whole life around after her breast cancer experience, and has put all her energies, for all these years, into trying to get the word out about alternative breast cancer treatments. In addition to her amazing nonprofit organization/website, she goes to conferences and symposiums all the country. She does interviews. She writes articles. She is all over the place, as much as she can possibly be considering how little money she has to do ANY of this. I mean, compare Ann's resources to the resources of our pharmaceutical industry!

Ann is a valient warrioress (real word? not sure...) who has taken on a 'project' - a mission, really - so huge it is mind-boggling. I, in comparison, can barely make time to write a few paragraphs on my blog, which is probably read by a grand total of two dozen people, most of whom don't have cancer.

I just typed Ann's name into a Google search. Here's the page that came up:

Click here

I hope somebody out there who stumbles across my occasional stabs at helping to "educate" others will take the time to read about Ann Fonfa and all that she does... and has done. I'll mention a couple more women in future posts who, like Ann, have devoted themselves to this herculean and daunting endeavor of advocating for education about alternative healing options. These women ARE out there, but they're fighting an uphill battle that is so steep and so high, I don't know how they find the strength to keep at it. Yet they do, bless them bless them bless them.

Benefits of Hormone Replacement on Breast Cancer Survival

Benefits of Hormone Replacement on Breast Cancer Survival Are Durable: Presented at ASBS

"Benefits of Hormone Replacement on Breast Cancer Survival Are Durable: Presented at ASBS"

By Carole Bullock NEW YORK -- May 9, 2008 -- Breast cancer survival rates for users of hormone replacement therapy (HRT) continue to be significantly better after at least 5 years compared with nonusers of HRT for at least 5 years, researchers reported here at the 9th Annual Meeting of the American Society of Breast Surgeons (ASBS). In a previous study that evaluated the 2.5-year results in women who used HRT and in nonusers, the researchers observed that women who used HRT lived longer and that tumours detected in these women were significantly smaller, lower grade, and more often node negative. Now, the study's 5-year results show that survival is maintained over the long term, with survival rates of 92% for HRT users versus 84% for never-users ([P = .02), reported Rodney F. Pommier, MD, Professor of Surgery, Division of Surgical Oncology, Oregon Health & Science University, Portland, Oregon. Long-term use of HRT was associated with a significantly higher probability of having a tumour detection by mammography (P = .02), even though the frequency of screening mammography between HRT users and never-users was similar.

Among patients with mammographically detected tumours, HRT users had 100% survival compared with 90% for never-users (P =.03). And no differences in survival were seen between HRT regimens, Dr. Pommier said in an oral presentation on May 3.

This significant survival difference between HRT users and never-users with mammographically detected tumours indicates that this is not due to better screening among HRT users; rather, it is consistent with a favourable biological effect of hormones on the tumours, he noted in an interview.

"Patients with greater than 9 years of HRT also had 100% survival regardless of mode of tumour detection," he added.

In complementary basic-science experiments, the authors measured the effects of oestrogen and medroxyprogesterone acetate (MPA) on breast cancer cells in vitro.

For the in vitro studies, oestrogen-receptor-positive and progesterone-receptor-positive breast cancer cell lines and those with oestrogen-receptor-positive and progesterone-receptor-negative cell lines were treated for 5 days with oestrogen (1-10 nM) and/or MPA (0.1-250 nM).

"The addition of MPA did not change the effects seen with oestrogen alone," he said. "Many of the concentrations and combinations were growth inhibitory for breast cancer cells. Our in vitro results support our clinical findings that [oestrogen] or [oestrogen] plus MPA do not worsen clinical outcomes."

[Presentation title: Improved Breast Cancer Survival of HRT Patients, Regardless of Regimen or Length of Therapy, Is Durable After an Additional 5 Years of Follow-Up. Oral Presentation]

Our Corporate Medical System - The Sickening Reality

Last week, the Oncologic Drugs Advisory Committee (ODAC) of the Food and Drug Administration (FDA) voted 5-4 to recommend against approving the drug Avastin for first-line use in advanced breast cancer. In clinical trials to date, Avastin has not been shown to extend overall survival or to improve quality of life for women with metastatic breast cancer.       

However, the FDA is not bound to heed the advice of ODAC, and Avastin’s manufacturer, Genentech, will be lobbying hard to persuade FDA to grant approval in spite of the ruling.

      

To read or listen to this week's Ralph Moss newsletter,  click         here or go to:
        http://www.cancerdecisions.com/121607.html       

Vitamin D, Cancer and Media Bias

TWISTING THE RECORD ON VITAMIN D
(taken from Ralph Moss's newsletter on his website, CancerDecisions.com)

A team of researchers led by National Cancer Institute (NCI) epidemiologist Dr. Michal Freedman has published an article suggesting that vitamin D is highly successful in reducing deaths from cancers of the colon and rectum. The researchers studied 16,818 people who had joined a nationwide U.S. government health survey between 1988 and 1994. The volunteers were then followed through the year 2000, by which time 536 had died of cancer. The study found that people with relatively high blood levels of vitamin D when they entered the study had a 72 percent reduction in their risk of dying of colorectal cancer compared to those with lower levels of vitamin D.

The article was published in the Journal of the National Cancer Institute in early November 2007 (although news of it broke a week earlier). The researchers were quoted as saying that the findings in colorectal cancer were consistent with other studies of vitamin D. On the other hand, the study did not establish a more generalized link between high levels of vitamin D and a reduction in the overall risk of dying from various cancers, including those of the lung, prostate, and breast.

There are important questions about the methodology used in this study, issues that may have limited the researchers' ability to detect some of the positive effects of vitamin D. But even if the methodology and conclusions of the Freedman study were correct, it is not so much the results that are disappointing, but the spin that the mainstream media put on the findings. The reaction of the media to the study revealed in a stark way their deeply ingrained prejudice against nutritional solutions to cancer.

The Reuters news agency did report the study correctly and with a properly nuanced understanding of its positive and negative aspects. The headline of the Reuters report read: "Vitamin D Cuts Colon Cancer Death Risk." The article, by writer Will Dunham, began: "People with higher vitamin D levels are less likely to die of colorectal cancer, researchers said on Tuesday, but the vitamin does not appear to affect the chances of dying from any other type of cancer" (Oct 31, 2007). This is a fair summary of the paper's conclusions. One other source, the Canadian Broadcasting Corp., or CDC, also got it right: "Vitamin D Cuts Colorectal Cancer Risk."

But most news outlets that I saw emphasized the negative aspect of the findings, that vitamin D, as one put it, was no "magic bullet" for cancer (as if anyone said it was). Here are some of the headlines of stories that were published hours after the news of the study first broke:

    * "Vitamin D May Not Reduce Cancer Deaths" (AP)
    * "Vitamin D May Not Lower Risk of Cancer Deaths" (Fox)
    * "Vitamin D Is Not Magic Bullet for Cancer" (Wired News)
    * "Vitamin D Won't Help Prevent Most Cancers" (HealthDay)
    * "Vitamin D Doesn't Prevent Cancer Deaths" (Windsor Star)
    * "Vitamin D Benefit At Issue" (Ft. Worth Star)
    * "No Connection Found Between Vitamin D and Overall Cancer Deaths" (Medical News Today)
    * "Vitamin D Doesn't Reduce Cancer Risk" (Nutraingredients.com)
    * "Vitamin D Does Not Reduce Overall Cancer Mortality" (ANI India News)
    * "Vitamin D Has No Effect on Overall Cancer Death Rate" (Medical News Today, 2nd article)
    * "Study Raises Questions About Vitamin D and Cancer" (KWWL Iowa)
    * "Vitamin D Downgrade As Scientists Advise There is No Real Proof It Fights Cancer" (Daily Mail)

According to the study, "Colorectal cancer mortality was inversely related to serum 25(OH)D level." (Serum 25(OH)D is a standard biochemical marker that is used to determine blood levels of vitamin D.) Participants in the study who had 25(OH)D levels of 80 nmol/L or higher had a 72 percent risk reduction in colorectal cancer compared to people who had levels lower than 50 nmol/L (Freedman 2007).

A Thought Experiment

So let us now imagine that everyone who had vitamin D levels of 50 nmol/L could be brought up to the level of 80 nmol/L. This could be accomplished through the judicious use of vitamin D supplements. Another way would be through increased sunlight exposure, although that is controversial since it might also raise the risk of some skin cancers.

The American Cancer Society anticipates that in 2007 a total of 52,180 Americans will die of colorectal cancer, representing approximately 10 percent of all cancer deaths (Cancer Facts and Figures 2007). If you prevented 72 percent of these deaths you would save 37,570 lives each year. To comprehend this graphically, the seating capacity of Fenway Park in Boston is 38,805. Thus, you could nearly fill this stadium to capacity with the people whose deaths from colorectal cancer could be avoided each and every year. Worldwide, the United Nations estimates that there are 500,000 deaths from colorectal cancer each year (W.H.O. World Cancer Report 2003). A 72 percent reduction would mean 360,000 lives saved each year. That's a lot of lives saved and a lot of misery avoided!

There is some disagreement over how much vitamin D is necessary in order to raise the blood level to 80 nmol/L. As a general rule, the government advocates the intake of 400 IU vitamin D per day. But some Canadian experts feel that a minimum of 800 IU/day to 1000 IU/day may be needed, with up to 2000 IU/day to 4000 IU/day in special circumstances (Canadian Pediatric Society 2007).

One hundred tablets of 800 IU of vitamin D can be purchased on the Internet for under $2.00 ($1.94). Thus, most people could supply themselves with sufficient amounts of supplemental vitamin D for 2¢ per day, or around $7.50 per year. By comparison, Leonard Saltz, M.D., an expert on colon cancer treatment at Memorial Sloan-Kettering Cancer Center, N.Y., has estimated that the cost of chemotherapy for advanced colon cancer is approximately $250,000. Thus the cost of treating just one case of colon cancer would be enough to prevent death from colon cancer in over 30,000 cases. This is a perspective that somehow failed to come across in the vast majority of recent media stories about vitamin D and cancer.

Take Your Vitamin D3 (And Take MORE of It!)

I think that many people believe that something as seemingly innocuous as taking certain vitamins in order to fight one's cancer is naive and/or kinda like trying to kill an elephant with a pea shooter. But the diet of an average American SUCKS, and does our mainstream medical world focus on the importance of good nutrition to help us stay healthy and strong, with bodies equipped to fight disease? No. They focus on pills. Drugs. Treatments for symptoms rather than for causes.

Maybe cancer wouldn't be AS awful and rampant as it is, if we better understood how to help our bodies work optimally. If our bodies worked optimally, maybe we'd be able to NATURALLY fight off cancer cells before they were able to multiply enough to become tumors.  We ALL have cancer cells in our bodies. And our bodies DO know how to kill them off. It's just that our bodies can't do this if they don't have the right foods and exercise (and if they are constantly subjected to overloads of mental, emotional and spiritual stress, in addition to physical stress).

Anyway, I'm not saying that if everyone ate perfectly (assuming anyone could ever agree on the definition of a perfect diet), no one would get cancer. I'm just saying that we might have LESS cancer in our society if we ate better, and if our doctors and researchers paid more attention to "simple" (not really) and relatively inexpensive supplements like Vitamin D and iodine, rather than focusing so intensely on barbarian (and expensive) treatments such as chemo and radiation and hormone blockers (castration causers) such as Tamoxifan and Arimidex.

This short article explains why I take 4,000 IU (not 400) of Vitamin D3 every day:

    1: Curr  Med Res Opin. 2007 Nov 21; [Epub ahead of print]
    Molecular basis of the   potential of vitamin D to prevent
    cancer. Ingraham BA, Bragdon B, Nohe   A.

    OBJECTIVE:
    To review current research findings in cell biology,
    epidemiology, preclinical, and clinical trials on the protective
    effects of vitamin D against the development of cancers of the breast,
    colon, prostate, lung, and ovary. Current recommendations for optimal
    vitamin D status, the movement towards revision of standards, and
    reflections on healthy exposure to sunlight are also reviewed.Search
    methodology: A literature search was conducted in April and updated in
    September 2007. The Medline and Web of Knowledge databases were
    searched for primary and review articles published between 1970 and
    2007, using the search terms vitamin D, calcitriol, cancer,
    chemoprevention, nuclear receptor, vitamin D receptor, apoptosis, cell
    cycle, epidemiology, and cell adhesion molecule. Articles that   focused
    on epidemiological, preclinical, and clinical evidence for vitamin   Ds
    effects were selected and additional articles were obtained   from
    reference lists of the retrieved articles.

    FINDINGS:
    An increasing body of research supports the hypothesis that
    the active form of vitamin D has significant, protective effects against
    the development of cancer. Epidemiological studies show an inverse association between sun
    exposure, serum levels of 25(OH)D, and intakes of vitamin D and risk   of
    developing and/or surviving cancer. The protective effects of vitamin   D
    result from its role as a nuclear transcription factor that regulates
    cell growth, differentiation, apoptosis and a wide range of cellular
    mechanisms central to the development of cancer. A significant number
    of individuals have serum vitamin D levels lower than what appears to
    protect against cancer, and the research community is currently
    revising the guidelines for optimal health. This will lead to improved
    public health policies and to reduced risk of cancer.

    CONCLUSIONS:
    Research strongly supports the view that efforts to improve vitamin D
    status would have significant protective effects against the
    development of cancer. The clinical research community is currently
    revising recommendations for optimal serum levels and for sensible
    levels of sun exposure, to levels greater than previously thought.
    Currently, most experts in the field believe that intakes of between
    1000 and 4000 IU will lead to a more healthy level of serum 25(OH)D, in
    the range of 75 nmol/L that will offer significant protect effects
    against cancers of the breast, colon, prostate, ovary, lungs, and
    pancreas. The first randomized trial has shown significant protection
    against breast cancer, and other clinical trials will follow and
    ultimately lead to improved public health policies   and significantly
    fewer cancers.

    PMID: 18034918 [PubMed - as supplied by publisher]

Alternative Breast Cancer Treatments - Letter from Ralph Moss

Written by Ralph Moss (cancerdecisions.com):

AN OPEN LETTER TO FARRAH FAWCETT

On my own behalf, as well as that of my coworkers, and the readers of our weekly online newsletter, I want to wish you success in pursuing innovative cancer treatments in Germany. I applaud your courage in seeking an approach that hopefully will be less toxic and more effective than the treatments you have so far been offered in the US.

With this open letter, I also hope to counter some of the negative comments that have been made in the media about your treatment choices. Some of the derogatory comments about "the murky world of overseas clinics" have come from the tabloids - no surprise there. As your spokesperson told People magazine, "It is now clear that the tabloids are as invasive and malignant as cancer." I wish there were some way to shield you from their abusive attacks.

Far more surprising have been highly critical comments from individuals associated with major US cancer institutions. Isn't it ironic that before your diagnosis you served as a celebrity spokesperson for the American Cancer Society? Now, some people associated with ACS and similar organizations have forgotten this former service and, in effect, have washed their hands of you.

Interviewed by the Associated Press about your case, Barrie Cassileth, PhD, is quoted as saying, "I would [tell a patient considering alternative treatment] that they are signing their own death certificate. I would say they are wasting time they could otherwise spend happier and with their families." Dr. Cassileth is chief of the Integrative Medicine Department at the Memorial Sloan-Kettering Cancer Center, New York and has been prominently associated with your former
organization, the ACS.

I find such statements both highly inappropriate and contradictory. Saying that people are "signing their own death certificate" by pursuing innovative cancer treatments outside the US implies that they would not be signing their death certificate had they only stayed in the US for treatment. While I do not presume to know the details of your case, I assume that you were fully informed by your American oncologists of the treatment options for your cancer, and found them
unacceptable.

I am sure you did not make the decision to seek treatment in Germany on a whim, but after due deliberation of all your options. Dr.Cassileth's melodramatic statement implies that you are wasting your time by doing so and that you could instead spend "happier" time with your family. Not everyone will choose to, as it were, wait out the clock. I thoroughly understand your desire to seek more effective treatments, including those available abroad. This is of course a very personal choice, which is determined in part by one's resources and fighting spirit. But the fact that some people choose to seek out other possibilities abroad rather than give up hope at home is not a sign of irrationality.

Medicine develops unevenly and is still partly determined by national characteristics. (For confirmation, see Lynne Payer's classic Medicine and Culture.) Consequently, there are treatments available in Europe that are not yet available here, and vice versa. Dr. Cassileth seems to think that all German cancer clinics are a monolith and that all their techniques are the same and equally ineffective. But the topic of German innovative medical treatments is a huge one. According to one German Web site (www.klinik.de) there are presently 2,200 private clinics in Germany, containing 500,000 beds and treating 17.5 million patients annually. Many of these are cancer patients. These clinics were not set up to treat Americans, but primarily to serve the interests of the indigenous population. Germans in general (including many of their doctors) have a more positive attitude towards natural medicine than do their counterparts in America. In my experience, the German clinics are generally well run and are in full compliance with both local laws and international standards of ethical patient care.

Germany has long been a world leader in cancer research and treatment. German biologists pioneered almost every step in understanding the nature of this disease. Despite the terrible setbacks of World Wars I and II, German doctors continue to be well trained and well informed on all aspects of cancer care. In the use of complementary medicine they are without peer in the West. German doctors have either pioneered or expanded the use of mistletoe, enzymes, thymic peptides, immunotherapy, hyperthermia, and a host of other innovative techniques. These methods are sometimes employed alongside surgery, radiation and chemotherapy, when these are deemed necessary.

A glance at this year's program of the 41st Medizinische Woche (Medicine Week), held October 27-November 1, in Baden-Baden, reveals a panoply of treatment options that are unknown by most American oncologists. Recently I had the honor of co-editing a medical textbook on the German approach to integrative cancer therapy with Josef Beuth, MD, professor of complementary medicine at the University of Cologne. Our volume, Complementary Oncology (Thieme) gives some idea of the range of these treatments and the depth of their scientific evaluation including, in some instances, through the use of randomized controlled trials.

In conclusion, Ms Fawcett, I hardly think you are wasting your time, much less signing your own death certificate, by going abroad for treatment. You have made a rational decision under extremely difficult circumstances, and that decision deserves the utmost respect, not a flippant dismissal of your survival prospects. All people of good will wish you the best of luck in your search for effective treatments.