"Respectful Insolence" ist ein Weblog von Orac. Wer ist Orac?
---------------------------------------------------------Who (or what) is Orac?
Orac is the nom de blog of a humble pseudonymous surgeon/scientist with an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his miscellaneous verbal meanderings, but just barely small enough to admit to himself that few will. (Continued here, along with a DISCLAIMER that you should read before reading any medical discussions here.)
Was ist "Respectful Insolence"?
"A statement of fact cannot be insolent." The miscellaneous ramblings of a surgeon/scientist
on medicine, quackery, science, pseudoscience, history, and pseudohistory (and anything
else that interests him)
Orac hat über Michaelas furchtbaren Tod geschrieben. Diesen Eintrag kopiere ich auch hierher.http://scienceblogs.com/insolence/2006/11/a_different_kind_of_testimonial.php
---------------------------------------------------------A different kind of alternative medicine "testimonial"
Category: Alternative medicine • Cancer • Medicine
Posted on: November 8, 2006 8:46 AM, by Orac
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 9x9 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 -
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.