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Sun Jun 2, 2013, 02:52 PM

Keep Your Cures Off My Cancer

http://www.huffingtonpost.com/joannamontgomery/keep-your-cures-off-my-cancer_b_3346767.html

Since my diagnosis a year and a half ago,http://thestir.cafemom.com/baby/134431/congratulations_its_a_girl_ps?next=21 I've received countless recommendations for purported cures and treatments for cancer. Most have been respectful and well-intentioned recommendations from friends and family members who only want to see me around for as long as possible. Others, maybe not so much.

Being a target for criticism comes with a blogger's territory. I learned pretty quickly that I have to have thick skin if I am to keep writing publicly about my personal life. However, I admit I was surprised in the beginning to experience open hostility from strangers who disagreed -- vehemently -- with my health care choices. Individuals who had no qualms (anonymously) blasting someone actively dealing with cancer.

Some of the loving comments I received included gems like these:

"Have the courage to REFUSE chemo and you will have a better chance of living to 100."

"It is NOT a cancer 'battle' when you put all four paws in the air and blindly and stupidly trust the cancer industry."

"Chemo is an over-priced highly ineffective chemical attack on your immune system which if it was healthy to BEGIN with you would have never gotten cancer at all."

"When you're ready to stop poisoning yourself, the real, natural cure is out there."

"If you were evolved enough to recognize the truth about the pharmaceutical industry, you wouldn't be risking leaving your daughter without a mother."

"You are part of the problem, a pawn for the cancer machine."




And a related blog post from the excellent Respectful Insolence blog at scienceblogs.
http://scienceblogs.com/insolence/2013/05/31/on-helping-that-is-anything-but/

On “helping” that is anything but

Cancer is a bitch. Depending upon what organ is involved and what kind of cancer it is, it can be incredibly hard to cure. All too often, it is incurable, particularly when it involves the brain, pancreas, esophagus, or other organs. People wonder why, after over 40 years of a “war on cancer,” we don’t have better treatments and more cures. As I’ve explained before, it’s because cancer is incredibly complex, and cancer cells have incredibly messed-up genomes. Even worse, cancer uses evolution against any efforts to treat it, producing such marked heterogeneity among tumor cells that not only are different cancers very different but individual cells within a single cancer cell can be very different. That’s an incredibly powerful weapon. Still, there has been progress, and some have even developed strategies to try to turn evolution against cancer.

Unfortunately, many of the treatments that work and result in actual long term survival in cancer patients (more commonly called remissions or, even more colloquially, cures, although oncologists don’t like to use that latter word) involve surgery or toxic therapies such as chemotherapy or radiation. Indeed, most solid tumors that are curable are cured with surgery, and the chemotherapy and radiation are usually the “icing on the cake” that decreases the risk of recurrence, while most “liquid” tumors (like leukemias) are treated primarily with chemotherapy. These treatments are difficult, and too frequently they produce significant morbidity. On the other hand, we don’t (yet) know of anything else that works. Newer targeted therapies, with a few exceptions, have been relatively disappointing. Don’t get me wrong; they do work very well with much less toxicity for selected tumors, but it’s hard to conclude that they’ve lived up to the sometimes excessive hype.

Because cancer, other than early stage solid cancers that can be completely extirpated with surgery, are so hard to cure, it’s always interesting to see what happens when a believer in alternative medicine is unfortunate enough to be stricken with cancer. After all, real oncologists understand what an intractable and devious foe cancer can be. All too often, to the alternative cancer quack practitioner, curing cancer is a matter of readjusting that life energy, giving that herb, or cleansing those toxins (all too often involving various solutions poured into the rectum and colon). It’s all so easy, and such high success rates are claimed that you’d think that alt-med practitioners always use alternative cancer treatments. True, sometimes they do, with predictably disastrous results, but more often the stories I see resemble this story by Joanna Montgomery, a blogger who is battling cancer right now, entitled Keep Your Cures Off My Cancer. In it, she first links to the article describing her diagnosis, which is as heart-rending a cancer story as I’ve ever heard, in which she discovered her diagnosis after the birth of her daughter:



Good reads, both posts. And both point out why medical woo, whether it's anti-vax bullshit, anti-fluoridation nonsense, or quack medical cures, should be exposed for the harm they do.

Sid

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Response to SidDithers (Original post)

Sun Jun 2, 2013, 03:00 PM

1. A few years ago a good friend of mine came down with bone cancer....

He wrote an email to all his friends announcing the bad news, and asking (very politely) that everybody please refrain from offering any advice on treatments. I can imagine how oppressive that could get, even if was offered with the best of intentions.

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Response to phantom power (Reply #1)

Sun Jun 2, 2013, 03:08 PM

2. Vaccine

 

Why don't they have a vaccine for cancer?

Instead they feed you cancer to get rid of cancer and you still end up dead?

Hey, I heard that cancer and nukes have a correlation. Could that be true?

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Response to RobertEarl (Reply #2)

Sun Jun 2, 2013, 03:25 PM

4. Cancer is an umbrella term for a few hundred different diseases.

Would you treat melanoma the same way as a brain tumor?

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Response to phantom power (Reply #1)

Sun Jun 2, 2013, 06:12 PM

15. I have a close friend who's 5 years clear of colorectal cancer do the same thing...

I think "oppressive" pretty accurately describes it.

Sid

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Response to SidDithers (Original post)

Sun Jun 2, 2013, 03:24 PM

3. New Age wooheads are some of the people I'd most like to strangle

No, I don't have cancer (that I know of), but I do have a painful, incurable chronic illness that is likely to kill me one of these days. I treat it with heavy drugs because I'd prefer to stay alive and out of a wheelchair for just a bit longer, thanks.

The worst wooheads are the philosophical/religious wooheads who tell me it's Karma for something I did in a past life. No, it isn't, Karma doesn't work that way and any sort of predestination is utter crap. It is a tribute to my strength of character that I haven't slapped them sillier than they already are.

The diet, herb and vitamin pill wooheads are a bit easier to take since they really want to help. I just nod sagely unless I'm in a bad mood and tell them BTDT, thanks, and it doesn't work like heavy drugs do.

That isn't to say that the cure isn't worse than the disease in many cases, aggressive cancers among them. Studies have shown that palliative care like pain control has extended average life expectancy and greatly increased the quality of remaining life with some of them. More oncologists need to discuss this option with their patients.

And yes, those are both very good reads and they apply to chronic illness as well as cancers.

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Response to Warpy (Reply #3)

Sun Jun 2, 2013, 03:28 PM

6. Amen. I had someone who should know better say I should a herbalist...

....for HIV. Despite the fact that I have held the virus in check with pharmaceuticals for over a decade, I should go to a quack to "cure" my HIV.

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Response to Warpy (Reply #3)

Sun Jun 2, 2013, 03:32 PM

7. Great post...



Sid

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Response to SidDithers (Original post)

Sun Jun 2, 2013, 03:28 PM

5. I can't recommend this post enough

My first career (degree) was in nursing; I spent the majority of that time as a Hospice nurse (late 1980s and early 1990s). Unfortunately, I saw first hand the dangers of "woo". Be it from folk spewing treatments and cures arising from ignorance or charlatans "out to make a buck, " the promotion of woo (quackery) preys on the desperation of people. It either keeps folk from seeking or participating in legitimate treatment or it prevents them from dealing with the very (real) serious issues at hand.

I am not against all alternative treatments/ therapies .... some have proven track records and have the ability to offer comfort. Optimal nutrition is a plus for any treatment plan.

I also want to point out that it is not just the unintelligent/ uninformed that "fall" for this. Desperate folk make poor decisions based upon their desperation.

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Response to etherealtruth (Reply #5)

Sun Jun 2, 2013, 05:48 PM

10. Orac addresses alternative treatments in that second link...

Orac is really David H. Gorski, who is an "American associate professor of surgery at Wayne State University[1] and breast cancer oncologist at the Barbara Ann Karmanos Cancer Institute." http://en.wikipedia.org/wiki/David_Gorski

He states:

It might surprise readers to learn that when it comes to patients wanting to use alternative medicine to treat their cancer, I take a very practical approach to the problem. I will tell them what I think about it and, if interested, lay out the reasoning why. I might even tell them that I think they’re wasting their time and money. But then, if they insist on using it as well, I try to make sure that they are undergoing conventional, science-based treatment and tell them that they can use whatever they like alongside it as long as (1) I know what it is and (2) it doesn’t interfere with the science-based treatments they are undergoing. The reason is simple. I want the patient to live, and as long as that patient doesn’t abandon conventional science-based cancer treatment in favor of quackery, the patient’s chance at survival has been maximized, assuming condition #2 is met. I might be caustic, funny, and even contemptuous on this blog, and that’s fine. In the “real world,” however, how I behave has real consequences, and I don’t want those consequences to be to drive a patient away from the treatment that will help her. The blog is the blog, and I pull no punches here, but I try never to attack a cancer patient for her choices, no matter how horrific the quackery I am deconstructing is. Real life is real life. The two must be distinguished.


I think his comments make a lot of sense.



Sid

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Response to SidDithers (Original post)

Sun Jun 2, 2013, 04:58 PM

8. Chemo and multiple surgeries -- it was no picnic but the result is that I'm still here.

 

Yeah, I threw up a lot, had some bad months. Obviously, it was worth it.

On the bright side, among all the unpleasant things I had to put up with, at least I didn't have to put up with much well-intended lay medical advice. Most of my friends aren't the types to believe the woo. Those that do believe it probably knew me to be a complete skeptic about "alternative" therapies and a solid supporter of the scientific method, so they kept their thoughts to themselves.

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Response to Jim Lane (Reply #8)

Sun Jun 2, 2013, 05:58 PM

12. Cancer touches so many lives...

my wife is a survivor, my dad is a survivor.

Thanks for posting about your experience.

Sid

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Response to SidDithers (Original post)

Sun Jun 2, 2013, 05:15 PM

9. Did you know laetrile is still touted as a "cure" for cancer?

Oh yeah, decades after it was proven to be nothing but woo, laetrile is still for sale.

Nowadays I can also walk into a drugstore and there are big displays of woo (especially homeopathy) there for sale.

Woo is openly advertised on TV. (Both ads and infomercials)

Anti-vaccine woo pushers still get airtime regularly.

Cancer is awful.
My Dad died of pancreatic cancer.
He was offered chemo to extend his life several months, Dad said "screw you" and he died surrounded by family.
He was happy for that.

There are people who run "clinics" that cater to final-stage cancer patients, bragging about their "cure rate" that really is a lie.

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Response to Archae (Reply #9)

Sun Jun 2, 2013, 05:52 PM

11. You're right. Woo is everywhere...

And there has been a fair amount of abuse directed at me for the strident anti-woo position that I've taken here at DU. I've been pretty critical of GD Hosts who choose to not lock woo, when it's posted, but I make no apologies for that.

Woo, and the magical thinking that goes along with belief in that woo, is dangerous. It doesn't deserve any place at a progressive site like DU.

Cheers,
Sid

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Response to SidDithers (Reply #11)

Sun Jun 2, 2013, 06:12 PM

14. Likewise.

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Response to SidDithers (Original post)

Sun Jun 2, 2013, 06:08 PM

13. Steve Jobs waited too long for real medical treatment and used herbs initially. He regretted it. n-t

 

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