The Assertive Cancer Patient

If It Quacks Like a ... Quack: UPDATE

Australia's The Age reports today that the federal court imposed an injunction on Paul Rana and his two sons to stop them from selling their $35,000 alternative therapy.

The injuction remains in place until the court makes a decision in the case, according to The Age. The Ranas' Web sites are still open for business, however, as of 5 p.m. Pacific Time, December 1. Maybe the Australian judges need lessons in Web surfing?

I just checked again today, December 16, and Paul Rana's Web site is still up and running, despite the court order. I e-mailed the Australian newspaper, The Age, weeks ago asking them about this, but no reply.

Read: Court blocks sale of cancer 'cure'

If It Quacks Like a … Quack

One thing that angers me is that snake-oil peddlers of bogus “cancer cures” are allowed to advertise and sell their products in the United States with seemingly no regulation and little fear that they will be prosecuted.

Things are different in Australia, apparently. A Melbourne businessman and his two sons are being sued by the Australian Competition and Consumer Commission for allegedly selling a “system” of vitamins, massage, and “energy zappers” as a cure for cancer.

The government organization is also prosecuting several companies that sold the so-called “alternative therapy,” the RANA System, which costs $35,000, to the terminally ill. According to recent press reports, five companies, all using the NuEra name, were selling the product.

The three men who are being sued are Paul Rana and his two sons, and the ACCC also is seeking an injunction to shut down the companies and to force them to remove their claims from various Web sites that sell both the products and RANA System franchises.

As of today, however, the Web sites are still live, preying on desperate people with cancer.

To read more: ACCC sues over cancer cure claims

Finding a Cure on the Web—Beware
Back in 2003, as part of a cover story for Seattle Weekly, I wrote a Soapbox on this topic, and Google’s role in promoting bogus cancer cures through its sponsored links, which are paid ads.

The ad that I mentioned in my rant is still my all-time-favorite snake-oil cancer “cure”: the "New Marine-Grade Coral Calcium Complex From Okinawa," which, according to the ad, is a cure for cancer and the reason the people of Okinawa live so long.

Well, I’ve visited Okinawa, and I certainly didn’t see any of the locals gobbling down “marine-grade coral calcium complex.” But I did see people eating a healthy diet of fish and lots of fruit and vegetables.

I wrote to Google, complaining that it was irresponsible of the company to accept ads like this to run on cancer search pages.

I received a very polite, but somewhat garbled, reply from a woman identified only as "Heather from the GoogleAdWords Team" that said, in part:

“Google believes strongly in freedom of expression and therefore offers broad access to content across the Web without censoring results. . . . You may be aware that a different set of laws and regulations apply to commercial speech (advertising) than to the search results we show when you do a Google search. As a business, Google must make decisions about where we draw the line in regards to the advertising we accept, both from a legal and company values perspective. . . .”

This is hogwash, of course. I realize that the Web is still the Wild West of publishing, and buyer-beware seems to be the standard. Reputable print publications would never accept ads for the kinds of products Google promotes, however.

After I received this letter, Google announced that it would hire a third-party company to verify online pharmacies before allowing them to advertise on the site. Google has done nothing about the companies selling phony cancer cures, however. There are more than ever.

Write to Google, and ask the company to stop accepting ads for bogus products that prey on the hopes of people who are dangerously ill. Here's the e-mail address: adwords-pr@google.com.

Please forward me any replies that you receive--it amuses me to see how Google continues to justify this shaky business practice. I wonder, could I sue Google if I tried one of these "cures" and it didn't work? Maybe I should move to Australia, and then sue Google.

@ Jeanne Sather 2006

Stories You Probably Didn't Read in October: II

There were a number of important stories about cancer that were reported by the wire services in October but not widely picked up by magazines and newspapers.

These stories seem to have fallen into a black news hole: Very few of the people I know who are living with cancer or are professionals caring for people with cancer (doctors, nurses, therapists, and so on) saw these stories.

So, here's one more--a report on suicides among cancer patients.

The report itself doesn't surprise me at all. When I learned that my father had been diagnosed with pancreatic cancer at age 53 (almost 30 years ago now), my first thought was that he would kill himself.

My father did not commit suicide, but he was profoundly depressed during the six months from his diagnosis at Christmas in 1976 until he died the following June. According to the research, men with cancer are about five times more likely to kill themselves than women are, and they are more likely than women to do so right after they learn they have cancer.

Also, in my father's case, I just recently learned that depression is a symptom of pancreatic cancer.

Reuters reported on October 18 that researchers at the Ottawa Hospital Regional Cancer Center in Canada had found that cancer patients were two to 2 1/2 times more likely to commit suicide than the general population.

The study, published in the Annals of Oncology, was an analysis of 1.3 million cancer cases in the United States, Reuters reported. It found that 19 of every 1,000 men with cancer and four of every 1,000 women with cancer commit suicide, which equates to 24 suicides per 100,000 cancer patients per year.

Some of the factors that play a role in suicide risk are gender, prognosis, the type of cancer, the stage and prognosis of the disease, race, and the person's family situation; however, the author of the study said that the research did not determine why patients killed themselves.

The lead author, Dr. Wayne Kendal, was quoted by Reuters as saying that oncologists need to realize that cancer patients need support. "Oncology patients are not an island," he said. " ...It's not just treating diseases, it's treating the person--the holistic approach that I wanted to foster."

Let's hope that oncology doctors and nurses out there are listening. I know a few who think that their patients' mental health is none of their concern--they duck their responsibilities by referring patients to mental health professionals, when maybe all that is needed is a little empathy from the doctor.

Needless to say, I avoid doctors with this kind of attitude like the plague. A doctor who lacks empathy can kill you. More on this topic to come.

Read the Reuters report: Cancer patients have higher suicide risk: study

A Tangent
If you have cancer, think of all the (supposedly well-meaning) people who have said to you, "I'd rather commit suicide than go through cancer treatment."

This is a really weird thing to say to someone who IS going through cancer treatment. Is the person trying to suggest that you should commit suicide and just get it over with? Clear out and leave more room on the planet for healthy people?

Probably not. They probably just aren't thinking.

But in any case, I think that they don't know what they are talking about. I think most people cling to life, and most of the people who say they would kill themselves rather than do chemotherapy would probably make a different choice if they did have cancer.

For most of us with cancer, every day is precious. And most of us are surprisingly happy.

One More Thought
November 28--I wrote yesterday that every day is precious and most people living with cancer are surprisingly happy. That is true for me, but it is not the whole story. I have been seriously depressed at times during cancer treatment and occasionally considered suicide.

See Jeanne's Diary, Chapter 7: Depression and Chapter 8: Life on 7 North.

I wrote Jeanne's Diary almost eight years ago, and I haven't had a bad period of depression for a long time now, but I still struggle with anxiety, especially while waiting for test results. It is the not knowing that sets me off--once I have the news, good or bad, I can generally pull myself together and do what I have to do.

How do I feel about suicide? I think suicide is the most personal of decisions. However, if a friend of mine were seriously depressed and considering suicide, I would try to talk them into getting help for the depression and then reconsidering whether or not they wanted to die.

Will I kill myself? No, I don't think so.

I am not afraid of dying of cancer. What's hard for me are the really tough times toward the end of a long series of chemo treatments when I have no energy--either physical or emotional. Then I do wonder if it is worth it to continue. But, so far, I've toughed it out and things have always gotten better. The treatment I'm on now, a combination of four drugs (Herceptin, Avastin, Cytoxan, and Zometa), is pretty easy to tolerate and I'm happy to be alive.

@ Jeanne Sather 2006

Sprechen Sie “Breast Cancer Barbie”?

Pretty soon, Breast Cancer Barbie, the doll I love to hate, will be speaking German.

I’ve been in e-mail contact with Gudrun Kemper who is working with another breast cancer survivior and close friend, Gudrun Lüttgen, to put together a German-language Web site for women with breast cancer. Gudrun writes that all the breast cancer Web sites in Germany are sponsored by drug companies. “We’d like to change this,” she says, “and put together an independent, self-contained Web site” for women who have or have had breast cancer.

Gudrun asked if she could translate my Breast Cancer Barbie piece into German and put it on the site, so watch for that at http://www.bcaction.de/10breastwatch/bc-barbie.htm in the next few weeks.

Gudrun, who is a librarian in the Berlin State Library in the Eastern Europe Dept., was diagnosed with breast cancer in 2000 at age 39. The “other Gudrun,” Gudrun Lüttgen, is a philologist who lives in Bonn.

“This Web site is the first Web site without industry sponsoring for independent access to information,” Gudrun Kemper says, “and I hope, that we can make it better and better in time.

“The ‘German Breast Cancer Movement’ is small and relatively aggressive, dismembered, fragmented. The women are shy, adjusted, honest, the doctors ‘demigods.’ And there is no wide access to independent and critical thinking. The health system is in a deep crisis, [and] breast cancer is on the top of the agenda … Today I'm networking with some small but independent women’s health organizations, and I hope that we get some mental support.”

I don’t know if Mattel sold BC Barbie in Germany, although of course she is available worldwide via the Web. I’ve e-mailed the company to ask.

You'll find the Gudruns' Web site at http://www.bcaction.de, although it won't go live until some time in December.

The Cheeky Librarian

One of the great things about blogging is that interesting people find me through my blog.

The most recent of these is Teresa Hartman, a medical librarian living the good life in Nebraska after treatment for cancer in her left cheek.

Teresa e-mailed me after reading some of my rants about pink ribbon marketing, and she makes a good point: “[I] am so glad to find someone else that protests the pink ribbon marketing... October is Medical Librarian month, too, and utilizing medical librarians would be much more useful to combating cancer fears and locating information on disease and cures than exploiting survivors.”

Here’s the link to Teresa’s blog: Cheeky Librarian

The Web is a great source of information, but it is also a source of disinformation and confusion, especially for those seeking medical information. Remember to check the source of the information you are reading, and also the date. Things change quickly in the medical field. Also, question any information from someone who is trying to sell you something—miracle cures in particular. I’ve been saving all the quack e-mails that have come to me since I started this blog, and I’ll be posting them all together sometime soon.

Stories You Probably Didn't Read in October: I--UPDATED

There were a number of important stories about cancer, breast cancer in particular, that were reported by the wire services in October but not picked up by magazines and newspapers.

The first of these was a report sent out by Reuters early in October that said that breast cancer survivors--SURVIVORS, not women living with the disease or in treatment--are at higher risk of suicide than other women.

This story seems to have fallen into a black news hole: No one I mentioned it to, including medical oncologists who treat women with breast cancer, therapists, and other women living with cancer, was aware of the report. (CNN was the only mainstream news outlet that I noticed had picked it up.)

I can only guess at the reasons, which would include an editorial reluctance to run a negative story during a month devoted to pink froth and feel-good stories about breast cancer, which is, after all, a pretty devastating disease, but not during October.

Reuters reported on October 6 that breast cancer survivors are 37 percent more likely to commit suicide than are other women. The report also said that the increased risk continues for at least 25 years after diagnosis. Reuters was reporting findings by Dr. Catherine Schairer, from the National Cancer Institute in Rockville, Maryland, and her colleagues that were originally published in the Journal of the National Cancer Institute.

The research was a population study that analysed data for 723,810 breast cancer survivors diagnosed between 1953 and 2001 in the United States and Scandinavia. During follow-up through 2002, a total of 836 women committed suicide, Reuters says.

What the research does not include is the why. Why did these women commit suicide?

I can understand that women might commit suicide at the time they are first diagnosed, or if they are living with a cancer that cannot be cured, but I was surprised to learn that survivors had such an increased risk of suicide.

I've asked several experts for their opinions, and I am also e-mailing the lead author of the study to see what she can add.

Dr. Robert Livingston, a well-known medical oncologist who has been treating women with breast cancer for more than 20 years, says, "I do not have an explanation for it. I have not had a breast cancer survivor who committed suicide (to my knowledge), and very few patients of mine with breast cancer and advanced disease have done so, either."

Actually, this is not surprising, even though Dr. Livingston has cared for a couple of thousand women over the years, according to Reuters the suicide rate for breast cancer survivors was 4.1 per 100,000 women per year.

I think this helps put the news story into perspective: Even though suicide among breast cancer survivors is significantly higher than for women in the general population, and should not be ignored, it is still low.

Dr. Livingston adds that this is in contrast to a number of other malignancies, like cancer
of the pancreas: "Where the incidence of suicide is unquestionably high, and is not all explained by the dire prognosis of the disease (suicidal depression is sometimes a presenting symptom of cancer of the pancreas)."

I also talked to a Seattle therapist who sees a number of patients with life-threatening illnesses, including cancer, and she said the increased suicide rate among breast cancer survivors may be due to their marriages or other relationships breaking up, and also to increased fears about their own mortality that may become overwhelming.

The next piece, of course, is for doctors, cancer survivors, and family members to be aware of this risk, and do what they can to help. More on that soon.

Read the original Reuters story:
Breast cancer survivors have increased suicide risk

Happy Birthday to Me (and Jill)!

Today is my 52nd birthday, a day I did not think I would live to see. When my breast cancer moved into my bones five years ago, the odds of my living this long were small.

With new treatments, women like me with metastatic breast cancer are living longer, but still, fewer than half of us survive five years from the time of the metastasis.

So, I celebrate getting older.

Last night I went to a women's bathhouse with a close friend for a body scrub and soak (a side note: I have yet to see another one-breasted woman at the bathhouse--where are they hiding?). Tonight, I'll have a birthday dinner at home with my sons and close friends.

And yesterday's lunch, with my friend Jill Cohen, was a celebration of our survival. Jill, who also blogs about life and cancer, or life with cancer, turned 47 on November 15. I turned 52 today. And for the past two years we have had lunch together on the day between our birthdays. Jill understands better than anyone what each birthday means to me.

We plan to continue the tradition for many more years.

Read Jill's blog at http://jillscancerjourney.blogspot.com/

Stories You Probably Didn't Read in October: I

There were a number of important stories about cancer, breast cancer in particular, that were reported by the wire services in October but not picked up by magazines and newspapers.

The first of these was a report sent out by Reuters early in October that said that breast cancer survivors--SURVIVORS, not women living with the disease or in treatment--are at higher risk of suicide than other women.

This story seems to have fallen into a black news hole: No one I mentioned the story to, including medical oncologists who treat women with breast cancer, therapists, and other women living with cancer, had seen the story. I can only guess at the reasons, which would include an editorial reluctance to run a negative story during a month devoted to pink froth and feel-good stories about breast cancer, which is, after all, a pretty devastating disease, but not during October.

Reuters reported on October 6 that breast cancer survivors are 37 percent more likely to commit suicide than are other women. The report also said that the increased risk continues for at least 25 years after diagnosis. Reuters was reporting findings by Dr. Catherine Schairer, from the National Cancer Institute in Rockville, Maryland, and her colleagues originally published in the Journal of the National Cancer Institute.

The research was a population study that analysed data for 723,810 breast cancer survivors who were diagnosed between 1953 and 2001 in the United States and Scandinavia. During follow-up through 2002, a total of 836 women committed suicide, Reuters says.

What the research does not include is the why. Why did these women commit suicide?

I can understand that women might commit suicide at the time they are first diagnosed, or if they are living with a cancer that cannot be cured, but I was surprised to learn that survivors had such an increased risk of suicide.

I've asked several experts for their opinions, and I will also e-mail the authors of the study and see what they can add. Expect an update to this story in the next day or two.

Jeanne

The Assertive Cancer Patient: Chooses the Right Doctor

If you are newly diagnosed with cancer, you will be faced with the daunting task of choosing a doctor or team of doctors to care for you. Now is the time to stop, take a deep breath, look around, and refuse to be rushed into a decision about treatment.

Some doctors will tell you on Tuesday that you have cancer, and expect you to have surgery on Thursday. This is rarely necessary from a medical point of view. For most cancers, you can certainly take a few weeks, or even as long as several months, to get a second opinion, consider your treatment options—which may include conventional medicine, alternative medicine, or a combination of the two—and choose a doctor.

Just because one doctor diagnosed your cancer does not mean you need to proceed with that doctor for treatment.

In this blog, I will offer some detailed suggestions on how to find the right doctor or doctors to treat the type of cancer you have, and also, perhaps even more important, how to find the right doctor for YOU. You want a doctor with the appropriate medical expertise, but you also want a doctor with whom you can build a relationship of mutual trust and respect.

Everyone has their own personal requirements for a doctor (although you may have not considered what you really need in a doctor until you have been diagnosed with cancer).

I chose my doctors very carefully when I was first diagnosed, and I was fortunate: I ended up with a great team of people who were everything I could have wanted or needed. Then, just a few months ago, I found out that my medical oncologist of eight years--the man who has kept me alive with metastatic disease in the face of rather poor odds--was moving to Arizona.

This news was right up there--with my initial diagnosis (in 1998) and the news that my cancer had spread to my bones (on New Year's Eve, 2001)--as one of the worst moments of my life.

And, despite all that I have learned from eight years of living with cancer, it was not easy to, yet again, find the right doctor for me. But I have, finally, and now I can relax and get back to the business of living my life.

I'm working on a longer piece on this, and will post it soon.

Jeanne