Respectful Insolence

A different kind of breast cancer testimonial

i-e7a12c3d2598161273c9ed31d61fe694-ClassicInsolence.jpgFor my international readers, it’s a holiday here in the U.S. That means I plan on taking it easy, which means I’ve decided on doing, in essence, a “rerun.” I chose this particular rerun based on my post from last Thursday. I thought that rerunning this particular post is a good reminder of what the cost of eschewing science-based therapy for breast cancer can be, and that price is horrible. This particular post dates back to 2006; so, if you haven’t been reading the awesomeness that is my blog that long, it’s new to you. I’ll be back with new Insolence tomorrow.

I’ve written before about how frequently alties like to point to testimonials as “evidence” that their treatments work. Indeed, from the very beginning, in one of the earliest posts I ever wrote, I explained just why breast cancer testimonials for alternative medicine should be taken with a huge grain of salt. Of course, most of these testimonials are either given by true believers or used by people selling alternative medicine, and they are used mainly to sell product. That’s one reason why I’ve emphasized that evidence from well-designed clinical trials is the best way of assessing what therapies do and don’t work, not testimonials. Even so, as a change of pace today I plan on showing you a different kind of testimonial than you are probably used to seeing. It’s not a testimonial of the patient herself. That would be impossible, for reasons that will be painfully obvious by the end. Before I launch into this testimonial, I have to point out that this testimonial makes me ambivalent about my use of Dr. Ryke Geerd Hamer’s German New Medicine for Your Friday Dose of Woo a couple of weeks ago. Hamer, as you recall, is the German doctor who claims that all cancer (indeed that all disease) is the “healing phase” of some sort of psychic conflict and that, if the patient can be guided to the resolution of the conflict, the cancer will be cured without chemotherapy or surgery. When I treated the German New Medicine on YFDoW, I did my typical light-hearted deconstruction of it. Perhaps this was a mistake, for reasons that will become apparent.

In the meantime, meet Michaela Jakubczyk-Eckert, as introduced by her husband. (Warning: Some photos may not be for the squeamish.)

Michaela’s story begins (translated from the German) with her marriage to Gilbert in 1995. The marriage was happy, but, unfortunately in October 2001 Michaela was diagnosed with breast cancer. Even more unfortunately, as this picture shows, it was an advanced, neglected breast cancer. (The stitch off to the side looks as though it was probably to close the hole for a core needle biopsy. I would also point out that the photo at the link looks very much like the photo of the woman I discussed a month ago who had refused treatment for a small cancer and returned three years later after her tumor had grown and started to eat through the skin.) Michaela’s husband states:

Michaela got cancer.
Because of her great fear of this illness
she went to a doctor very late.

So simply stated, but so poignant.

I’ve discussed the phenomenon of denial in cancer before. Indeed, I’ve discussed it multiple times. Suffice it to say that fear of the disease or a desire not to face its reality can lead to women putting off seeking treatment for a very long time, while the tumor grows. Indeed, I have a patient right now who had a breast cancer recurrence under the arm but didn’t seek help for it until it was over 5 cm. in diameter, leading to a very difficult situation. In this case, even though the tumor was stated to be 9 cm in diameter, if Michaela did not have metastatic disease anywhere other than her axillary lymph nodes, her situation was still salvageable. There was a good chance that her life might still have been saved with chemotherapy, followed by a mastectomy, and then radiation therapy to the chest wall and axilla.

Indeed, this was the treatment plan upon which she embarked, and her tumor responded quite well:

The tumor, G4 9×9 cm sized, was fought with chemotherapy,
and only a light red spot was left.

If at this point, or perhaps after a couple of more cycles of chemotherapy, Michaela had agreed to have a mastectomy, the outcome of this testimonial might have been different, but, alas, she did not stay on this course:

2002, all seems to become well again,
then Michaela hears about Ryke Geerd Hamer
and urgently wants to drive to Spain to see him.

Gilbert rejects Hamer’ swindle and refuses to accompany her.
So Michaela drives to Spain with her mother.

I don’t know if I would have reacted the same way as Gilbert. On the other hand, how does one convince the one he loves that she is making a horrible mistake, that she is pursuing quackery, and that she is endangering whatever chance she has of surviving her cancer? And how does one do it in a nonconfrontational manner that doesn’t drive her deeper into the bosom of the quacks? Gilbert wrestled with that question in real life; it’s really hard for me to come up with an answer now, from a safe distance and not knowing Michaela. I suspect that, had it been my wife (who, fortunately, is as hard-nosed about woo as I am), I would have insisted upon going along in order to be the skeptical advocate, to ask the hard questions of Dr. Hamer, to demand the (nonexistent) evidence, and in general just to be a big pain in the ass to him; my hope would be that exposing the sheer woo behind his “theories” would lead to her rejecting it. But maybe that approach wouldn’t have worked with Michaela. I don’t know.

The testimonial continues:

Hamer makes her believe, that a conflict is the cause
of the illness, the cancer being the healing phase.

Hamer persuades her, that she must stop the chemotherapy.

Michaela trusts the lies of Hamer,
Michaela trusts the lies of his helpers,
Michaela trusts the lies of false friends –
and stops the chemo therapy.

Without the life-saving treatment the cancer blooms up again…

And how, unfortunately. This last picture was taken in January 2005. (It sounds like a cult, doesn’t it?) This is what happened next:

On 14.11.2005 Gilbert calls by phone in Cologne.
He wants to congratulate Michaela for her birthday.

He ist told that she is still asleep.

The truth: she has been dead for 2 days.

Gilbert gets to know this
– by plain accident –
days later.

Michaela had so unbelievably terrible pain,
she was so ill,
that a doctor had been called,
who right away ordered her to be brought into a Hospice.

Never before the personnel of the Hospice had seen such misery,
a human, who – alive – rots
and is only mere skin and bones.
Her who upper body is open,
the back is open, completely rotten,
all stinks from rotten flesh…

Michaela endured infernal pain.
Despite strongest medications she cried of pain,
she cried down the whole house….

She lived on for only 4 days
and died on 12.11.2005,
2 days before her 41st. birthday.

Stepping back from the human toll, this account sounds to me as though Michaela’s tumor had progressed to en cuirasse carcinoma, a horrible, painful, and nasty manifestation of breast cancer in which the cancer grows from the breast into overlying skin and spreads along the chest wall and back in nodules that eventually coalesce into large contiguous tumor masses. When breast cancer progresses to this point, the en cuirasse tumor often bleeds and becomes necrotic, leaving the unfortunate woman with a chest wall covered with bloody, partially dying tumor that smells like rotting meat–mainly because it is in essence rotting meat, with living tumor in and around it. (I also note that Michaela’s ultimate fate likely awaits the woman I mentioned a month ago who used only alternative medicine and refused surgery and all conventional therapy unless she changes her mind soon.)This presentation of advanced breast cancer can be among the most challenging of all for an oncologist to deal with, particularly if there isn’t any tumor elsewhere, because of the devastating toll on quality of life and because the patient may live many months with this condition if there is no metastatic disease. Surgery can’t do anything for it, although radiation can often provide good palliation. The real problem occurs when patients whose chest walls had already received radiation therapy develop en cuirasse disease . Their chest wall can’t be re-radiated, and there is precious little that can be done. Michaela, never having had radiation therapy, would not have fallen into this latter, terrible category. Indeed, if Michaela had returned to conventional medicine before she was at death’s door, her chest wall and back covered with fungating, rotting, and bleeding tumor, radiation therapy might have done wonders for her. It’s highly unlikely that it would have saved her life, but it could have prolonged it somewhat and provided palliation, making her last months far more tolerable than the horror that she faced.

There may be worse ways to die than of en cuirasse breast cancer, but I can’t think of very many. Yes, it is certainly possible that Michaela would have died of her cancer anyway even if she had continued with chemotherapy, undergone mastectomy, and proceeded to radiation. Even if she didn’t have metastatic disease, she had at the very best less than a 50-50 chance of surviving 10 years. But I can assure you that almost certainly her death would not have been as painful, and she would certainly would have had a decent shot at surviving her cancer–in marked contrast to what happens if a patient chooses woo like the German New Medicine. Even though I often poke fun at woo like Dr. Hamer’s German New Medicine in YFDoW, you should always remember that not all of these types of woo are as benign as, for example, H2Om, “detoxifying” foot pads, or DNA activation. Even if they don’t have real complications that can be at times life-threatening, like colon cleansers or chelation therapy, in the case of even an eminently treatable cancer like breast cancer, at the very least, they can falsely sell the patient on the hope of a cure for her cancer without chemotherapy, surgery, or radiation, leading to catastrophic delays in effective treatment or recurrences. This is the underbelly to YFDoW. My intent has always been to expose the ridiculousness of various examples of woo and thereby hopefully persuade people that it is not to be trusted with their lives, but never forget that, when I’m dealing with stuff like colon cleanses, the German New Medicine, liver flushes, or other similar woo, there is meant to be a sharp point behind the silliness.

Needless deaths like that of Michaela Jakubczyk-Eckert, who is now nearly a year in the grave, can all too often be the result of the pursuit of woo. Unfortunately, patients like Michaela can’t give their testimonials to counter the testimonials of true believers.

Never forget that.

Comments

  1. #1 elburto
    September 3, 2012

    I saw someone wittering on about GNM the other day. I can’t remember his name, but somebody did mention that he used to post here whenever you mentioned Hamer.

    Michaela’s death was so pointlessly awful. I never met my paternal grandmother, who died of en cuirasse breast cancer when my dad was only 14. It was 1964, nothing could be done for her, so she was sent home to die.

    My grandfather had to keep working, as did my (then) 17 year old uncle. So my dad had to look after her, and his little brother. It fell to him to change her dressings. Even now, things like bandages and cotton wool make him go visibly pale and shaky. Visiting people in hospital is an ordeal that seems to make him age in front of you.

    There’s no need for anyone to lose a mother/daughter/wife/sister like that any more. Woo kills, and I wish it could be obliterated from the face of the earth.

  2. #2 Denice Walter
    September 3, 2012

    Because of the advances of SBM, few people are aware of the natural history ( really *histories*) of the illness. However, in the past, physical details of illnesses were not discussed in ‘polite society’ and only those very close to the sufferer ( and professionals) were aware of what occured, like Elburto’s father.

    Obviously, alt med capitalises upon people’s ignorance. Conditions like SMI/ cancer / AIDS can be lied about because most people are not medical professionals and untreated illness has not been a common event in the recent past. They can lie like anti-vaxxers lie about VPDs being relativelly ‘mild’ and caused by poor sanitation.

    Over the past several years I have watched the untreated natural progression of illness towards death: fortunately, it wasn’t a person or an animal- it was a tree.**

    Outside my place was a large tree that began to lose its leaves earlier than usual on one branch, then another. Small holes leaked sap that coagulated into amber-like beads on its trunk. In the past year or so, more branches on one side became affected and the amber beads became the side of small apples. And spread around the trunk.

    The owners of the tree decided to take it down – a great task involving 6 workers: their chief showed me how the insects had bored channels within the wood: I was especially amazed by a channel below the juncture of the tree’s two trunks that was rather long and wide – and had apparently interfered with fluid and nutrients being transported to one side of the tree. Brought down by the ” invisible worm that flies in the night” ( Wm Blake).

    Alt med would probably attribute the ghastly conditions described by Gilbert to the intervention of SBM when nothing could be further from the truth. And alties who have had surgery often attribute their ‘cures’ to the woo they used afterward. Those “cures’ that cause no harm to the patient also don’t harm the cancer.

    Recently, I have been hearing a new, even more atrociously cruel meme ( courtesy of PRN):
    if you want your woo to work even ‘better’ (a lie), don’t use any SBM. None whatsoever. Then, your ‘immunity’ will be stronger and the woo will fix it totally so it will destroy the cancer ( more lies). And you will be fixed as well, naturally.

    Even if woo-meisters don’t explicitly tell people to avoid SBM, their invectives against it may accomplish the same purpose.

    ** it was very sad nevertheless.

  3. #3 Daniel J. Andrews
    September 3, 2012

    This type of advanced cancer is just one of the good reasons why people should have the option for a physician-assisted death.

  4. #4 THS
    again, a mild & sunny morning
    September 3, 2012

    Denice: You wrote: “And you will be fixed as well, naturally.”
    (I haven’t figured out how to italicize copied text w/ this blog program & my macbook)

    Anyway, I think I know what you mean —

    Also, I’m astonished & dismayed to learn of this new and, as you put it so well, atrociously cruel meme.

  5. #5 Denice Walter
    September 3, 2012

    @ THS:

    Yes. Entirely fixed: your problems will be far behind you.

    And even more horrors are adrift in woo-topia.

    -btw- I deliberately wrote about the tree so that readers might conjure up images to replace those illustrating this unfortunate woman’s illness. The sick tree ( or Blake’s sick rose) are good metaphors for the squeamish. The tree is real and I’m now looking down at some of the logs that haven’t been carted off yet.

  6. #6 Darwy
    Røde grøde med fløde
    September 3, 2012

    I just noticed she died from breast cancer exactly 10 days before my sister did.

    My sister had some wonderful people from Hospice – they came and cared for my sister at my mother’s house – her hospital bed was next to the picture window so she could see the snow and the woods.

    She wanted to see the snow and woods because I used to read her a poem by Stephen King that ran in the New Yorker a long time ago. It was entitled, “Clear Beauty”:

    Romantics have often compared the cycle of the season to the cycle of life, a comparison I have never really trusted.

    And yet now, at the age of 51, I find something in it.

    Sooner or later, life takes in its breath – pauses – and then tilts towards winter.

    I sense that tilt approaching.

    When the idea threatens to become oppresive, I think of the woods in New England tilting into winter – how you can see the whole expanse of the lake, not just the occasional wink through the trees, and hear every movement on the land that slopes down to the water.

    You can hear every living thing, no matter how cunning……before snow comes to muffle the world.

    -Stephen King

  7. #7 Heliantus
    September 3, 2012

    That an awful story.
    I’m usually happy to see a French word in English (yeah, vanitas vanitatum omnia vanitas), but not here with “en cuirasse”. It’s succinct and very visual.

    how does one convince the one he loves that she is making a horrible mistake?

    I’m afraid there is no correct answer to this question. You can keep trying, but as it was said regularly, you cannot reason someone out of a position he/she didn’t reason him/herself into.
    (no, not blaming the victim here, just saying she was rightfully afraid – and heck, I am really in no position to blame anyone for not looking for a specialist)

    Accompanying him/her to the woo doctor may give you more opportunities to achieve a change of mind, but:
    – you have to be yourself knowledgeable in the field in order to ask the right questions (which I’m not sure Gilbert was)
    – by spoiling the mood with your questions, you are very likely to alienate your partner (“if you came along only to be so negative instead of supportive, you should have stayed home”)
    – and lastly but not least, I would not be surprised if the good doctor has “protocols” in place to isolate their prey customer from pesky bystanders. Eh, as a doctor, you are perfectly justified to want to examine the customer while preserving her privacy, “so please wait here, sir, it won’t be long”.
    Especially since his “theory” is about conflicts – “I believe that one of the sources of your stress is in the waiting room right now”.
    It’s how a number of sects (sorry, I mean religious groups) work, like the Hubology and their emphasis on avoiding “suppressive people”.

  8. #8 Heliantus
    September 3, 2012

    @ Denice

    Recently, I have been hearing a new, even more atrociously cruel meme (courtesy of PRN): if you want your woo to work even ‘better’ (a lie), don’t use any SBM.

    Come on, who is surprised?
    The fans and sellers of woo who come on these threads or speak in mainstream media may swear jumping up and down that they only want their woo to be complimentary to SBM, or issue quack Miranda, but talk to them long enough, and you see that below the surface, most of them think that SBM is poison or useless or just “curing symptoms, not the disease”.
    If they believe this (or want their customers to believe this), why would they want to use SBM?
    At least they are consistent.

  9. #9 Vasha
    Woo Central, NY
    September 3, 2012

    I’m pretty sure that Christian Science also says that if you use any SBM it makes your prayers less effective because it shows you’re not trusting God.

  10. #10 Kay Hanson
    September 3, 2012

    What, exactly, has this blog accomplished? It scares the crap out of me, a breast cancer person with mets, it makes me sad that there are people so afraid of disease and the sometimes horrific S/E of SBM that they are the prey of others who would ‘help them to avoid all of the problems of SBM treatment’. But don’t offer ANY treatment and sometimes just another way to poison their bodies. But those who promote this idiocy won’t be swayed by logic, by the posting of very graphic horrible photos of another human being’s incredible suffering. So what changes through the posting of this blog? Not my opinion of alternative non medicine, and not any of our opinions about SBM. Just leaves me feeing very, very sad.

  11. #11 Heliantus
    September 3, 2012

    @ Kay Hanson

    What, exactly, has this blog accomplished?

    To start with, it allowed Orac to vent off his frustrations and to provide us with a story worth knowing.

    Also, we human are social animals, and gathering of like-minded people has some positive outcomes:
    – it reinforces and/or refines the opinions of each individual
    – it shows the individual that he/she is not the only one thinking like this; if it’s crazy, at least it’s shared craziness
    – it provides new arguments for debating/converting outsiders
    – it reminds each individual of the importance of the topic and of the need to spread the awareness of it.

    Sounds a bit religious, eh? I can see accusations of “hiveminds” and “echo chambers” homing on.
    It’s the other way round, religions are social gathering.
    And heck, “hiveminds” is what social gatherings of like-minded people are: the association of people who agree to some point on some topic. Next time i see two people agreeing that it’s about to rain, I will call them a hivemind.
    The difference between us and “them”, them being science-adverse forums, is mainly in how dissenting voices are treated. Provide data? We will have a good look. Assert stuff pulled from nether regions? We will invoke Bozo the clown.
    However, pure name-calling and shaming is frowned upon. Well, usually. Sometimes, some communities undergo internal troubles and civil discourse goes down the drain.

    Also, our esteemed host and the more serious writers provides us with links to scientific articles and websites where the data they used to form their opinions can be found. A helping hand for people who want to do their own research on the internet.

  12. #12 Denice Walter
    September 3, 2012

    Although I’ve known about alt med and pseudo-science for a long time, more than 12 years ago I was startled by an amazingly cavalier broadcast that I chanced upon while monitoring the markets : it was extremely unrealistic and appeared to have an audience. Could people actually believe this stuff? As I watched price charts and chyrons fly past, I was treated to bizarre advice and descriptions of mediaeval health routines.

    Being a psychologist, I was fascinated by expressions that appeared either whimsically childish or purely pathological- sometimes both.
    Eventually, callers provided glowing testimonials while basking in the light of their guru; I discerned sales pitches cleverly disguised amid the so-called informational content.

    I thought that such monstrously bad advice should be brought to someone’s attention: surely, it must be illegal to do this. Well, I found out that it wasn’t . I did run across others who agreed with me. Over time, I found much more terrible anti-science from around the globe and in other media.

    Another person who discovered similar material ( and with whom I rubbed shoulders in cyberspace), wrote about it and was sued. That seemed rather unfair. Another who countered serious mis-information about hiv/aids and provided better options was harassed at home and work for telling the truth! That seemed almost criminal!

    Then when markets went as madly erratic as the vix and fear rose as rapidly as the libor, I noticed that the rhetoric of alt med prevaricators became even more vitriolic: aspersions were not only cast on medicine but on governments and businesses as well; I do now venture that as they saw people losing their collective shirts, they became afraid that their own sales might slip a tad. Poor babies!

    Over the past 4 years, these natural health experts have branched out into new, exciting areas of in-expertise, pontificating on the economy, politics and surviving the NEXT economic meltdown as well as other disasters. Articles, books, videos and documentaries were created as well as alternate media outlets to instruct the naive and get them to buy store-able foodstuffs and heritage seeds, water filtres, gas masks, to preserve their health with supplements, learn how to live ‘sustainably’ and beyond the clutches of the greedy corporations and the police-state government.
    Amazingly, these sites keep multiplying like vermin in an environment rich in food – for they thrive on the public’s lack of education and tendency to trust friendly strangers.

    I believe myself to be uniquely suited for the task I have taken on: I studied life and social sciences and can write a little. If I can somehow spread the word about nonsense that can harm the unwary: so be it.

  13. #13 Peebs
    September 3, 2012

    Hellentious,

    You make. A fair point about the confidentiality argument but if I ever had to examine a female I made a point of having a chaperone.
    As I told both of them. They were there for my protection, not theirs.

  14. #14 Johnny
    Watching the smoke float by
    September 3, 2012

    This type of advanced cancer is just one of the good reasons why people should have the option for a physician-assisted death.

    I’m not sure I completely agree. Someone in pain, with no hope, should have an effective and painless way to end their suffering, sure. Physician-assisted, I’m not so sure. I don’t think it should be in their job description. At least two doctors, and I’d prefer three, should agree I writing that the situation is likely to lead to a painful death in the near future, but otherwise I don’t believe they should be directly involved.

  15. #15 Heliantus
    September 3, 2012

    @ Denice

    There is some escalation, to be sure. It’s sometimes frightening. (although I could have recall bias)
    And please keep spreading the word, your posts are appreciated.

    @ Johnny

    I could see why you object, but if not a doctor, who else?
    At the risk of (further) derailing the thread, I would like to say what I heard about euthanasia in Europe.
    – in Switzerland, there are clinics where you can go, and the staff will leave a lethal pill on the bedside table. IIRC, two physicians should examine you before the clinic accepts you.
    Of course, if you are at a stage where you cannot take food by yourself, they are not going to be able to help you.
    – In Holland, you have a similar system. You also have a physician-assisted death option, for those who cannot take a pill by themselves, as it was explained to me by a Dutch colleague after he watched his mother going through the process (she became paralyzed after a stroke, and on top of this caught some virus by a visiting daughter). In this case, again, two physicians will examine you before accepting. In the case of my friend’s mother, one doctor actually decided to wait two weeks, and to ask again. And then one of the doctors took an appointment and came back with two syringes.
    – In France, like in the US, the worst we can do is unplug the (usually comatose) patient from all medical devices, and then let him/her die of whatever will come first. Which, sometimes, is simply lack of water – not very pleasant to suffer and even less to watch. And we let the relatives watch. I found this simply inhumane.

    Then my family went to the Vet to put our dog to sleep (coincidentally, because of a grapefruit-sized breast tumor which we stupidly let grow to the point of rupturing the poor dog’s skin), one quick injection and it was over in less than 10 seconds, she just collapsed in my arms.
    I could only hope for as fast a final outcome for myself.

  16. #16 Denice Walter
    September 3, 2012

    *Merci beaucoup* ! I appreciate your kind words.

    -btw- there’s a great deal more mind-bendingly awful woo/ economics/ politics that should be arriving postehaste.
    And I will not hestitate to describe, deride and eviscerate whatever I discover. And call its originators frauds, quacks and charlatans, as well as being mercenary and prevaricating entrepreneurs.
    Especially those guys in Texas. And those who sue. Intersection there.

  17. #17 Mephistopheles O'Brien
    September 3, 2012

    Heliantus,

    if not a doctor, who else?

    Almost anybody else. How hard can it be to kill someone quickly and mostly painlessly?

  18. #18 MarcX
    September 13, 2012

    Hi. I’m not a medic and know precious little about these matters. My reason for contacting is that partner has metastasic breast cancer. She’s a sensible girl and not easilly swayed by nonsense. i must emphasise that she is wholly content with her conventional medical routine – has an excellent consultant and follows all advice, takes tablets etc.

    However she has caught the “veggie” bug though now eats some fish and intends to graduate to chicken at some point.
    She also “juices” which I see has the effect of removing fibre (though she probably gets plenty of that in other ways).

    While she is in contact with a few real loopies (a sister who insists conventional medcation is “poison”) I don’t think she pays too much attention to them. She has also swallowed the stuff about “no cancer in China because no dairy food”.

    I suppose what I am asking is if she is doing this alongside a rigidly adhered to conventional medical regime, is there anything to worry about beyond of course the fact of the cancer itself? What harm might a dairy free diet do – particularly to someone woith her condition. Might she actually be better eating dairy food? Very grateful for views.

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