One more example of the price of refusing science-based cancer therapy

Another year, another Breast Cancer Awareness Month.

While most people who have either been touched by breast cancer or who have a professional interest in it, the significance of Breast Cancer Awareness Month is that it is a time, well, to increase awareness and to promote breast cancer research. There is another side to Breast Cancer Awareness Month, however, and it's not just the question of its excessive commercialization, which concerns some people. Rather, inevitably, just as the vaccine-autism quacks have come out of the woodwork for Autism Awareness Month each April, each October breast cancer quacks come out of the woodwork. For example, Mike Adams did it in 2007, then again in 2008, then yet again in 2010. (I'm sure he probably did it in 2009, 2011, and 2012, but for whatever reason I didn't bother to blog about it those years.) Then, when someone like Mike Adams isn't busy sliming Breast Cancer Awareness Month, then others do it, as when that wretched hive of scum and quackery (The Huffington Post) published an alternative medicine testimonial or when Suzanne Somers released her napalm-grade stupid book on cancer therapy. Another time, a clueless Chicago Tribune commentator fed the myth that abortion causes breast cancer.

We're 1/3 of the way through October, and, for whatever reason, Mike Adams hasn't produced anything about Breast Cancer Awareness Month that caught my interest, perhaps because he appears to be too busy producing anti-GMO nonsense fast and furious, as he promotes Proposition 37. I'm sure that he (or someone else) will get around to using Breast Cancer Awareness Month to promote some form of breast cancer quackery or another (or to launch specious, non-evidence-based attacks on "conventional" medicine), but in the meantime, I think it's appropriate to point out once again the potential cost of such quackery. This time around, it comes in the form of a story out of Africa.

It is the story of a 66-year-old Kenyan woman referred to as Nancy Auma. It begins in August 2008 when Nancy noticed a painful breast lump that "just appeared one day." She underwent a fine needle aspiration (FNA), which confirmed that the lump was breast cancer. This is what happened next:

Her doctor advised her that surgical removal of the breast was the best option, with Kisumu or Nairobi having the best facilities.

Nancy, however, was reluctant to lose her breast and said she would go home to think about it.

As can be imagined, Nancy went through all the usual stages after receiving shocking news. She was also very afraid as all the people she had known to have breast cancer had passed away.

She consulted several friends and relatives and opted for other healing options. She did not take any specific actions toward medical treatment.

In the U.S., one option that might have been offered to Nancy is neoadjuvant chemotherapy. This is chemotherapy given before surgery in order to shrink large tumors to the point where they can be removed without removing the whole breast. From the lack of details in the description, I have no way of knowing whether Nancy was a candidate for such an option, which also requires radiation therapy after surgery, but if her tumor was greater than 5 cm in diameter or if she had 4 or more lymph nodes under her arm with tumor in them she'd be recommended to have radiation after a mastectomy anyway. Be that as it may, if Nancy refused surgery, chances are good that she probably would have refused neoadjuvant chemotherapy as well. She seemed to be refusing the whole package of science-based medicine, eschewing it in favor of "other healing options." Whether she did this because she was in denial, afraid, or didn't trust science-based medicine, who knows? It was probably a combination of the three. Whatever the reason, her decision doomed her.

Fast forward nearly three years, to May 2011. By this time, Nancy was in unbearable pain and had a large open wound on her breast. This part of the story hits home for me because, as hard as it is to believe in the U.S., not so long ago I saw such a patient. It was a woman whose breast was nearly completely replaced with tumor, the lower half of which was an open wound, complete with the very strong smell of rotting flesh. I hadn't seen (much less smelled) anything like since at least the 1990s. In fact, I don't recall ever having seen a case of neglected breast cancer that bad. The entire lower 2/3 of her breast was an open, gaping wound with dark rotting flesh visible. After having been in practice for 13 years and having seen a lot of breast cancer patients during my residency and fellowship for ten years before that, it's sobering to realize that even I can still be shocked by something like this. I probably have around 15 or 20 years left in my career, and I hope I never see anything like this again before I retire.

So I can picture in my mind what Nancy's tumor looked like, and, just as intense, I can smell it. What people who haven't seen it don't realize is that neglected tumors like this often bleed or rot—or both. It's truly horrible to behold, and at this point there is nothing a surgeon can do except to recommend local wound care and hope that the chemotherapy works. As I showed in the case of Michaela Jakubczyk-Eckert, chemotherapy can have a dramatic effect, even on tumors that are very locally advanced, often to the point that a mastectomy can be performed, something that can't be done at initial presentation.

I also note that I don't know for sure that this patient that I saw used alternative therapy. She didn't explicitly say what she did during the years that this tumor was growing, but she apparently told other practitioners that she had tried some sort of regimens that included supplements and other things. Be that as it may, this is what all too often happens to patients who choose alternative therapy over science-based therapy:

The pain became unbearable for Nancy and her breast now had a large wound.

It was clear that what had earlier been suggested had been ignored and the alternative treatment she sought had failed. After a lot of debate and conflict, her last born daughter Alice insisted that Nancy starts treatment.

However, the outlook of the condition was bleak. The cancer had now spread beyond the breast to the lungs.

At this stage, the doctor advised that the treatment that would be given was to alleviate the pain, prevent the cancer from spreading further and heal the wound on the breast through surgery.

It sounds as though what the doctors recommended is what I alluded to earlier for cases like this: Chemotherapy to try to shrink the tumor and allow the open wound to heal enough to try to resect the tumor. In the case of Nancy, because she had lung metastases, she was not "curable." That is not the same thing as saying that there is nothing doctors can do for her, which is all too often how it is misinterpreted when a patient faces the devastating news that she has incurable disease. In any case, Nancy did chemotherapy, but experienced side effects and only managed to get through five cycles before reverting to "traditional healing methods" that apparently included some form of herbal therapies. Her appetite and energy levels improved, most likely because she was no longer on chemotherapy, but:

Unfortunately, the wound on the breast was getting worse and this is when she accepted to start the second round of chemotherapy. But she was not able to get to the fourth session and she passed away five months later.

In retrospect, Alice wished that her mother had the initial surgery that was recommended in August 2008.

At that time, the chances of her mother’s survival were high. She also wished that they had listened to her doctor and followed the treatment guidelines.

It's by no means clear that conventional therapy would have been successful in saving Nancy. I can't really make a particularly accurate estimate of what her chances would have been, because I don't have enough information regarding what her cancer looked like on initial presentation or whether she had tumor in the lymph nodes under her arm. However, if we assume that "large" meant at least 5 cm in diameter, then we know that treatment, even surgery alone, had a good chance of giving Nancy long term survival of five years or even ten years or more. While it would appear that Nancy was "lucky" enough (if you can call it that) to have had a slow-growing, indolent tumor that took four years to kill her, even though effective treatment wasn't begun until it had ulcerated, we can definitely say that her chances would have been much better with conventional therapy begun when she was first diagnosed than it was with all the herbal woo and the intermittent therapy not begun until it had become painfully obvious that the woo wasn't working. We can even estimate the price, in terms of years of life lost.

So I'm taking this opportunity to remind my readers one more time that, when people like Mike Adams and his ilk refer to "natural cancer cures," what they are talking about is not what they think they are, namely saving patients' lives without the toxicity of surgery, chemotherapy, and radiation therapy. Whether they know it or not, whether they can be forced by the evidence to admit it or not, what they're really talking about producing more Nancys. Alas, the story is the same the world over.

More like this

For 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…
(NOTE ADDED 12/7/2010: Kim Tinkham has died of what was almost certainly metastatic breast cancer.) Cancer is scary. It's very, very scary, even when it is a cancer that is treatable and potentially curable. It's such a common disease that, by the time we reach a certain age, the vast majority of…
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…
I hate The Huffington Post. I really do. Why, you ask, do I hate HuffPo so? I hate HuffPo so because of its history from the very beginning of its existence of promoting the vilest forms of anti-vaccine quackery and pseudoscience. It's because, over the last couple of years, not content with being…

My wife Ruth died on 23SEP2012, one week after our 6th anniversary and 5 weeks before her 46th birthday, of lymphangitis carcinomatosis. New Years eve 2008/2009 we found a lump in her breast. two days later we had it checked out at our GP - yep, it was a lump. the GP booked an emergency mammogram and told us the appointment would arrive in the mail shortly. Ruth was a Nurse and I'm an engineer. we figured that unlike fine wine this wouldn't improve with time, so on the monday I took Ruth to a private breast clinic and had a mammogram. The next day we got the band news - DCIS, a 65mm tumour in the R breast and a small lump in the L breast. we scheduled a mastectomy immediately, and argued the surgeon into a double. Ruth had both breasts removed on the thursday, and we found that the L breast was also cancerous. Fifty grand well spent.

What really hurt was the lymph nodes - the surgeon resected 93 nodes from her R armpit, of which 89 were cancerous. Given the comments by the surgeon and oncologist, we realised this was bad - very bad. The next day we got the appointment for the free mammogram.

I had a crack at giving myself an undergraduate medical education, whereupon I discovered just how wrong I'd been. Previously I thought the biological sciences were "soft" and that Physics was where the smart stuff got done. I couldn't have been more wrong - the biologists just had to wait until the 21st century for us physicists and engineers to develop the hardware they required to really get going.

The oncologist said without treatment Ruth would have 6 months or so - but with chemo & radio we could drag that out to 18 months or more. The chemo & radio were, of course, shithouse, but Ruth took it in her stride - giving other patients makeovers, arranging flowers for them etc. She was one hell of a tough woman.

18 months after finding the lump, Ruth had recovered well. And we lived life well - we took trips to australia, china, hong kong, england. and had a plethora of parties - including a "fuck chemo" party. The good times lasted until early 2011, when the expected metastases (89 hot nodes...) reared their ugly heads, with secondaries in her spine, lungs and ribs. more Chemo ensued, along with Radio to shrink the mediastinal tumours. and it worked pretty well - Ruths breathing returned to normal, and we resumed our lives.

CT &MRI scans showed the inexorable progression though, so in October 2011 we went to Italy for 6 weeks (against medical advice), doing both a western- and an eastern-mediterranean cruise. Ruth called it the best time of her life. It was pretty funny getting an italian doctor who was unable to speak english, to give her a zolodex injection (we didn't speak italian). but we got there.

early this year Ruth had a couple of pleural effusions in her L lung. two taps & a pleurodesis later, after a painful 4-week recovery, Ruth was good again. this year went well, and we decided to sell our house, buy a cheaper one sans mortgage and splash out on one last cruise. two weeks before the house sold, Ruth had a pleural effusion in her R lung. We thought all would be fine, but it turned out that the problem was an infection and the lymphangitis, not the fluid. two weeks of IV antibiotics saw a monotonic decrease in lung function, and Ruth was transferred to hospice on Friday morning. The night before she asked me if she was dying, and I told her yes.

We chose to spend $50k on a private mastectomy for Ruth, because we had plenty of money (no insurance) and didn't want to wait a month for a free operation. All the rest of Ruths treatment was through the public health service - and all up it cost us about $200 in prescriptions. I'm an engineer, and am familiar with factories; hospitals are just factories for repairing meat robots. I was very pleased with the level of care we received, my only complaint is with the sub-optimal resource utilisation (them expensive toys ought to run 24/7) but thats not the hospitals fault.

The hospice care was something else though. I cannot conceive of how it could be better. the place was beautiful, the staff kind and compassionate, the food not just edible but delicious. Ruth went in on Friday morning, reasonably OK. we sold our house on the Saturday, and on Saturday night we talked for 2 hours about my plans for the future. I specifically and repeatedly made the point that I was going to be OK, and that Ruth didn't have to fight to stay alive just for me - that it was OK for her to go when she felt she'd had enough. She was relieved when I said it, and genuinely pleased to go over my short, medium & long term plans.

That night was bad. the night nurse was her friend Flo - whom Ruth had worked with in the spinal unit for many years. Flo was fantastic, and we got Ruth through the night without a catheter (she was adamant). On Sunday her whole family was there. her sister and I held her hand and encouraged her as she began Cheyne-Stokes breathing.

then her lung function faded away, and the emergent property that was my beautiful, funny, wonderful wife Ruth ceased to be, as I recited my wedding vows to her and told her I loved her. It hurt so bad, but I am grateful I got to do that for her.

Then I donated her eyes, went home and screamed myself hoarse. I had an extra 3.25 years as a direct result of her treatment - which itself is the direct result of decades of work by tens of thousands of researchers, clinicians, surgeons, technicians etc. And the sacrifices of uncountable patients, without whom there would be no statistical data with which to optimise the targeting of therapies. I am profoundly and eternally in your debt, and I thank you all.

As for the talentless dickheads who suggested drinking bleach, reiki and a plague of other mummery - fuck the lot of you, not only are you not helping, you're making things worse.

Two things always puzzle me about these "alternative cures" loons. First, if any of their cures actually worked - why hasn't Big Pharma caught on and started selling them?
And second - if so-called 'traditional' medicine worked so well before modern medicine came along and forced us to use toxic artificial cehemicals, why did anybody feel there was any need to search for better ways of treating disease?

@sophia - if alt-med practitioners can figure out ways to make gobs of money off of "natural healing" you can bet your ass that a Multi-Billion dollar corporation with armies of lawyers will be able to figure out the same thing...of course, when you are a corporation, under regulation by the FDA, you actually have to prove that what you sell or do actually works (something the alt-med crowd seems to conveniently forget).

Stories like this tear at me, because I realize the years of life these women are losing, the pain & suffering they are forced to endure, for no other reason than someone has convinced them "modern medicine" is bad.

People have so many misconceptions about chemo these days - treatments have gotten a lot better and outcomes are getting better - and as Orac will say, not as quickly as everyone would like (there is no "easy button" for beating Cancer) but even over the last decade major strides have been made.

I suspect Nancy's tumour may have looked a bit like these:…
Many of these patients suffered from these horrible, open, rotting wounds because they didn't have access to medical care for either early detection or later treatment (though the middle link mentions the woman avoided getting help for fear of a mastectomy).
While I know some doctors don't like using shock tactics, I wonder if those women who shunned early treatment in favour of "alternative" options would have done so if they'd seen the graphic pictures of what these tumours can look like when left untreated. Might snap them out of the delusion that the tumour just waits patiently, out of sight while the host dithers messing around with woo. I get that cancer is scary and that the thought of losing your breasts through a mastectomy is scary. Personally, the thought of a huge, festering, rotting, stinking sore being where my breast once was is far scarier.

By FibroLogic (not verified) on 09 Oct 2012 #permalink

Another name added to the alternative "medicine" wall of shame.

Orac - thank you for putting a human face on the harm sCAM does. If only one woman reads these stories and rejects sCAM "treatment" as a result, then nobody has dieda completely in vain.

That article in The Nation was superb. I'm so used to being linked to. FluffPost or Daily Fail nonsense, that I forget that health-related journalism can be done without alarmist, speculative nonsense.

"if alt-med practitioners can figure out ways to make gobs of money off of “natural healing” you can bet your ass that a Multi-Billion dollar corporation with armies of lawyers will be able to figure out the same thing"

Nonsense! Natural cures can't be patented so Big Pharma won't sell them. And did you know that most of our pharma drugs come from natural substances?

By Dangerous Bacon (not verified) on 10 Oct 2012 #permalink

Now that I've stepped away long enough to eat...

Okay. I've decided that I'd much rather go through surgery and at least one round of chemo than to die with a putrid rotting cancer where my breast used to be.

You've sold me on that much.

@Dangerous Bacon
Also nonsense. If there is no patent and assuming the FDA allows them, they can produce and sell it. If they can make money with it they will sell it. Dietary supplements anyone?

Take care,

My sister had friends who tried to recommend 'alternative' therapies. I'm happy to say she declined them. She may not have won her battle against breast cancer, but she had a decent quality of life without pain until it was over.

My great aunt died of her breast cancer - round 3.

Round 1 and Round 2 were detected in time for effective treatment, but Round 3 was stealthy and was detected too late.

She got over ten years of life from conventional treatment so I consider it a win.

Gack, that's awful. Can I tell a good story about conventional care?

In 1940, my aunt Beverly died of leukemia after a very short illness (age 5). In 1976, my cousin Danny died of leukemia after a somewhat longer battle (age 15).

This year, my great nephew, 5 years old, starts kindergarten after finishing his conventional chemo. One of twins, he got leukemia about 3 years ago. There were ups and downs (and fears about infections from the anti-vaxxed). But he seems to have won. He started school this year with his twin in the best health he's had in years.

We have made progress on this disease, and my family has seen it first hand. I get pretty tired of the people bitching about pharma and the medical complex when we couldn't have done it without them.

nastes @8:41 - Mr. D. Bacon was almost certainly being ironic -- given that he's generally one of Orac's Greek chorus of like-minded sane people. Unfortunately, Poe's law.

By palindrom (not verified) on 10 Oct 2012 #permalink

Terry - I am so sorry for your loss. I'm glad though, that you and your wife got that extra time together, and were able to spend it doing what you wanted. I'm also very glad that she spent her final time in a friendly, warm environment. I know that can make a big difference.

Thank you for sharing Ruth's story with us, and on her behalf, thanks for being a supportive and loving husband to her.

Big hugs.

@terryg - I am sorry for your loss, but happy that you and your wife could spend her last years together having the best times of your life.

Cancer sucks - quack cancer cures suck worse.

Mary - my brother's stepdaughter had kidney cancer as a baby. After 18 months of aggressive treatment and many surgeries, followed by an anxious 18 month wait punctuated by scans, blood tests and terror whenever she complained of a sore tummy or headache, she was able. to start school after being declared in remission.

She looks like, she is a healthy, strong, happy, and scarily intelligent six year old now. Only the large keloid scars, evidence of surgery, PICC lines, feeding tubes and chemo ports are external signs of her ordeal.

Science is amazing, beautiful, humanity at it's finest. Anyone who smears and doubts it doesn't deserve it.

Terryg, thank you for sharing that. It brought tears to my eyes. I wish you the very best and Ruth sounds like an amazing person whom I would have liked to meet. I think the world would do better with more Terrys and Ruths.

By Science Mom (not verified) on 10 Oct 2012 #permalink


Your comment must have been in moderation when I posted earlier, but I would also like to thank you for sharing your wife's story. It has many parallels to my sister's (we paid for a 10 day trip to Disney and brought her and her daughter with us), etc.

She sounds like she was an amazing woman.

Elburto, Lawrence, Science Mom, Darwy et al - thank you for your kind words of support. I thought Ruth was pretty amazing, but I'm biased. As a victim of cancer, she is unfortunately one of many, as you can attest - they are all loved, they are all our sisters, our mothers, our children, our brothers. and they are all missed.

I can say that I am grateful for her cancer though - It really brought Ruths family together, and allowed the two of us (me in particular) to realise just what we had. Its true that you dont appreciate what you have until you face losing it.

So I am grateful. Not at all happy, but grateful. Its affected me profoundly, in a number of ways. As an Aspy I've never been good at the whole emotions thing. now, I can even cry in front of strangers. Its a helluva way to learn, and I dont recommend it, but it is effective.

I console myself by remembering that 6 billion people have lives that are infinitely worse than ours - and they get to watch their loved ones die too. nobody gets out of this alive; we really are all in it together.

the whole process, culminating with the donation of Ruths eyes, has convinced me to give my corpse to science when I'm dead. So my last act will be a teaching exercise, and a useful one at that. As the recipient of so much medical knowledge, its the least I can do in return.

Now I'm going to go have a good cry, talk to my memory of Ruth then go to sleep. It hurts, but only because I love her so much - which makes it all OK (for certain values of OK)

Orac -- thanks for fighting the good fight. Terryg -- thanks for sharing your story. Very important to keep fighting the purveyors of the woo.

I had a great talk with my 23 year old son yesterday. He's working in research at Children's Hospital in Boston. And he's living proof that science and evidence-based treatment work. He had high risk, pre-B Acute Lymphoblastic Leukemia (ALL). 3 1/2 years of chemotherapy. But now he has graduated from college, is working at a great job, and recently completed a "double century" on his bike -- biked 100 miles on Saturday, and another 100 on Sunday. Up in New Hampshire, where the roads aren't flat. Science and chemotherapy saved my son, not wishing, or woo, or magic wheatgrass juice, or mangosteen.

@ terryg: Thanks so much for sharing your life with your beloved Ruth with us. My much loved son died eight years ago, peacefully in his sleep. He was the joy of our lives and he only survived his multiple physical and medical problems because of modern medicine.

We too, donated our son's eyes and his heart valves after his death and take comfort that he lives on in the lives of the people he touched in life...and after his death.

Whenever I get sad and weepy about him, I find great comfort in knowing that the donations made after his death, enabled others to see and others to have their broken hearts mended.

I hope that you will consider joining our community of came to share your life with Ruth...but now you have a community of like-minded people throughout the world.

terryg, the first time I read this blog, Orac had just lost his mother-in-law to breast cancer and I had just lost my sister to lung cancer. He asked his readers to share stories of how our lives had been touched by cancer. It was a beautiful tribute to love and perserverence and the terrible beauty of life's end, and I knew I had found a new daily read. The posts here are often fractious and polemic, but sometimes, I still get stopped in my tracks with emotion. From the bottom of my heart, thank you for sharing Nancy with us.

By Pareidolius (not verified) on 10 Oct 2012 #permalink

Apologies. Ruth. Nancy. Don't type when you're crying.

By Pareidolius (not verified) on 10 Oct 2012 #permalink

Most alternative medicine advocates would probably cover the pre-modern era by saying that cancers are caused by modern pollutants of one sort or another. Unfortunately, they would probably have a point.

Something that crossed my mind reading this article is, of all things, "Gulliver's Travels". During the Brobdingnag adventure, there is a quite gruesome passage about a diseased giantess that corresponds quite closely with the kind of advanced cancer described here. Thus, in this case at least, it's very safe to say that the problem is nothing new.

David N. Brown
Mesa, Arizona

By David N. Brown (not verified) on 10 Oct 2012 #permalink

Terryg, thank you for sharing that. It brought tears to my eyes.

Ditto. I'm not a cry-er, normally, but... hell. I just feel for you, so strongly. This kind of thing can happen to any of us, it happened to my mom, and now I had to stop and think about it happening to myself or my husband.

I'm so glad you were able to make the most of life with her, and that you had each other, and that you were there for her through all of it, to the end. Thank you for relating that.

By Roadstergal (not verified) on 10 Oct 2012 #permalink

Terryg, thank you for sharing your and Ruth's story. I'm really moved.

I keep repeating to my husband that if I die before him, he is to tell the doctors to take every part of my body that would be of use.

This week marks my mother's first anniversary of her breast cancer diagnosis. She is through the chemotherapy, radiation, and full mastectomy, with flying colours (although she will have to have a small cosmetic procedure to have a "dog ear" of migrated fat removed from under her arm so she can wear a bra and a prosthetic breast). Her hair has grown back (very curly!).

The worst issue she had with chemotherapy was a three-day hospital stay and a 9-unit blood transfusion due to a white blood cell count of zero, caused by an unrelated urinary tract infection. The infection resolved itself in a few days with antibiotics and the white blood cells from the transfusion. (Thanks, anonymous blood donors!)

Notorious for her perpetually unsettled stomach (the emesis gravida she had when expecting my sister was *really* ugly!), she didn't even throw up once.

Of course, I don't really consider that we're out of the woods yet, but we have definitely come to a lovely clearing and are resting in the sunshine on a picnic blanket for now.

Thanks for your story, terryg, even if I *did* have to wipe my eyes at work. :)

By Interrobang (not verified) on 10 Oct 2012 #permalink

Ditto. I’m not a cry-er, normally, but… hell. I just feel for you, so strongly.

I know, me too Roadstergal! I love your writing Terryg; your sincerity and genuineness are so moving and again, I appreciate your experience and your desire to share it.

By Science Mom (not verified) on 10 Oct 2012 #permalink

Dear TerryG,

Thank you for sharing Ruth's story with us. Your love for her shines through.

So I am grateful. Not at all happy, but grateful. Its affected me profoundly, in a number of ways.

This describes how I felt after my father's death. Thank you for putting it into words.

You might want to read this essay by Karla Fisher, an autistic adult, on how her autism affected her grieving process…

terryg - after participating in internet discussions foer more than 20 years, there is not much that I haven't seen or affects me all that much. But add me to the list of those who was moved to tears by your love story with Ruth.

I just feel so bad that more could not be done.

By Marry Me, Mindy (not verified) on 10 Oct 2012 #permalink

Thanks Terryg for your comment. I'm speechless but but your comment resonnated a lot with me.

Alain (also autistic)

Terry - If you’d like to, I’d be happy to put it up as a guest post. Not sure if you've read anything over our way, but we're a NZ science writing collective.

What a remarkable comment from Terryg. Thank you for sharing.

By PharmacistScott (not verified) on 10 Oct 2012 #permalink

An incredibly sad story. I will note a minor and rather dim, but meaningful, silver lining.

"She underwent a fine needle aspiration (FNA), which confirmed that the lump was breast cancer."

As a pathologist, I'm slightly biased, but a correct diagnosis is the absolutely necessary beginning point for successful therapy.

Pathology is a specialty that is highly international in culture.

The struggles of pathologists in Africa, and the small number of pathologists practicing in Africa (and even then mainly in South Africa and Egypt) are very well known.

I'm sad to hear how this case turned out, but glad to hear that at least what seems to have been a correct pathological diagnosis was available in Kenya.

Lay people, of the sort who may tend to direct aid efforts, often fail to understand the importance and frequent difficulty of diagnosis.

{tearful joy emoticon} thank you all for your support. it helps.

Pareidolius - yes. I've been reading Orac throughout (how could I not, with a name like that) and both the posts and comments have been....impressive.

Grant - I'd consider it an honour. I'd like it if you could edit it to use our full names though. you can email me moniker at slingshot

@ terryg:

Thank you for sharing your story.
Like many who have lost a loved one, you'll go through permutations and transformations emotionally all of them in their own good time.
Odd events will trigger memories but eventually the heaving sobs will turn into sighs and when waking up in the middle of the night, eventually you'll realise that she's not in the next room but you are now alone with only your memories of her.
Take care of yourself. You're an admirable person whose story will help others.

By Denice Walter (not verified) on 10 Oct 2012 #permalink

Terryg, thank you for sharing that - I too rarely cry, and I was moved to tears by the beauty of your posts. So glad you and Ruth were able to share that time together.

By CanadianChick (not verified) on 10 Oct 2012 #permalink

Remind me not to read this blog while eating my lunch. The thought of rotting flesh turned me off my lunch!

Pareidolius - your tpyo & correction made me roar with laughter :)

Liz Ditz - wow, what a brilliant article. thanks!

Terryg, Thank you for sharing. You and Ruth contiue to impact on people's lives today and into the future.

I am going to go outside sit quietly in the sun and reflect on you both for a while.

Tell us when terryg's story is posted - I want to link to it, but honestly - people are going click away if they have to read Orac's post first.

(No offense, Orac. Your piece was very effective, but not in a heart warming way.)

When I was 13, my aunt died of secondary TTP. It was brought on by metastatic cancer. The tumors were still too small to be seen, but from other symptoms it was concluded that they were probably in the spine somewhere. A few months before she had her second treatment for breast cancer, four years after the first.

Anyone telling me she would still be alive if she only had tried sCAM modality XYZ, will get a punch to the face.

On a somewhat creepy note, my cousin, son of one of my aunt's and my father's sisters almost died of ideopathic TTP. Good thing I'm not superstitious.

Harold's comment on the diagnosis gets me thinking:

What has to be going on in someone's mind to neglect breast cancer until it ulcerates (with a putrid smell)?

As Harold notes, she KNEW she had breast cancer, so its not like she can say it was just one of those things that will just go away with time.

The fact your nutrition/supplement/alternative approach is not working is evident long before your tumor breaks throuh and starts oozing. Is it denial that makes people continue? Ignorance?

By Marry Me, Mindy (not verified) on 11 Oct 2012 #permalink


Thanks for the notice. I'll be linking to it from my FB page.


Have you and your family been investigated for the hereditary form of TTP? If not, please get it done. If any family members carry the mutation, there are measures they can take to prevent a crisis from happening. Google "hereditary TTP". The first few articles that come up will give you lots of good info (obviously no market for the woo brigade).

@terryg - I read your beautiful post and am weeping - just wanted to let you know how much it moved me. I have lost both parents to cancer, one at 29, one at 57 and have had one near-brush with cancer (the cells were one step below cancer in situ). I am so glad you got those years with her and lived them well. Perhaps it hit more because my mother's name was Ruth as well?

There's nothing that makes me angrier than cancer quacks at this point. I have been blessed to have a few close friends who have lived longer with medical treatment, and I'm glad that I did, because both of my parents died less than six months after diagnosis. For my mother it was 1977, and cancer care has improved quite a bit since then. For my father he was already stage IV at diagnosis and had a stroke as a side effect of chemo and ended chemo at that point. He had another illness that was killing him more slowly to boot, so I don't necessarily regret the fact that either of them got medical treatment, nor do I blame it for their demise.

Orac, most of us never see/hear/read about advanced stage cancer, the necrosis and terrible agony that can come when a cancer is left untreated. Since it is outside our experience, those who listen to the woo's characterization of treatment (and have heard tales, of course, of the terrible side effects of such treatment) and are assured that they are just as effective without the terrible side effects ... we assume at worst we'll die on pain killers but with no difference between one or the other treatment. The alternative med people are not bound by research and outcomes when they share their stories, only "client anecdotes." A wise reviewer on Amazon pointed out that most reviews are written only a few weeks after receiving the product. I suspect that most alternative anecdotes are actually quite similar.

Thank you for continuing to make people aware of how horrible cancer can be when untreated and combating the dangerous ignorance that many lay people can have regarding the reality they might be facing when choosing unproven treatments.

OT- but are alt media telling you how to think critically and about ways to avoid 'rigged' systems EVER truly OT @ RI?
I should think not!

@ TMR ( yesterday's) Ms Professor introduces "Critical Thinking 101" in which she discusses how historians use primary and secondary sources, the former being much superior to the latter because it originated in the time period being studied and is not an interpretation like the latter. Then she applies this to the vaccine "debate".

Parents' tales are primary; sources like Dr Offit are secondary, thus parents should be given more creedence.
Next, we should examine possible biases and the motivation behind an advocate's particular stance on the issue in order to determine the relative credibility of each source. Parents, she informs us, would get NO rewards from believing in a link between vaccines and autism while vaccine advocates are motivated because of money and prestige to NOT see it.
Uh-huh. Yes
Today's entry by Ms Goddess, discusses an "ignorant b!tch."
I know.

@ Natural News today, old boy Mikey reveals that "everything is rigged": in health, politics, finance and science. Then he instructs us in the methodology- step by step- of dis-entangling ourselves from the matrix of dissemblences.
I understand how he could say that..

By Denice Walter (not verified) on 11 Oct 2012 #permalink

Today’s entry by Ms Goddess, discusses an “ignorant b!tch.”

DW, if what was said to Ms. Goddess is true (and I have a hard time believing that much of anything on that wretched site is true or not monumentally exaggerated), that is awful. However, penning such a venomous screed after the fact is pointless and crass. The opportunity to educate obviously eludes them and they would rather vent spleen and pat each other on the back than do anything remotely constructive. They are the anti-TPGA if I ever saw one.

By Science Mom (not verified) on 11 Oct 2012 #permalink

Parents, she informs us, would get NO rewards from believing in a link between vaccines and autism while vaccine advocates are motivated because of money and prestige to NOT see it.

I'll join in your sarcastic uh-huh, Denice.

It's like they're oblivious to the social nature of human beings, the cognitive biases we have, and the cultural dynamics of human society. Sometimes I wonder if they're that genuinely naive or if they're feigning naivete.

People like having a focus for their anger, and being able to blame someone is a way to avoid the discomfort of uncertainty and feeling of helplessness. Blaming doctors gives them the option of retribution and a distraction from the difficult process of learning to accept that life didn't give them the model child they wanted. They get "rewarded" with cheap emotional shortcuts out of dealing with raising their child as he or she is. They get to focus on being self-righteous over the "loss" of their imagined neurotypical child instead of swallowing their sense of entitlement and learning how to help their very real child prosper.

Humans are highly social animals. Altie culture reinforces itself through various tropes of identity politics. They define themselves in opposition to "corporate" "mainstream" "artificial" things, and that includes the scientific method which rejects the vaccine-autism link. People can be swayed by peer pressure far more than most realize. People can and often will distort their thinking to live up to appearances. People can be afraid of dissenting from their group's beliefs out of fear of ostracism.

By Bronze Dog (not verified) on 11 Oct 2012 #permalink

@ Science Mom:

It iS awful and REALLY wrong to put it that way - there's also a possiblity- just a teeny. tiny, little one- that the ( possibly rude) retired teacher was reacting after hearing *la diva*'s usually protracted tales about how her own actions are "recovering"** her child and about her heroic life in general.

I can't imagine that the Moms are pleasant to be around: if their writing expresses their true personalities I would venture that there's LOTS wrong. Notice I don't hang a dx on anyone: this isn't AoA.

I suppose if I ever met up with one, my responses to her drivel might either be, "I see." or a rather less refined- but truthful- "You're out of your frigging mind!"

** such clumsy language.

By Denice Walter (not verified) on 11 Oct 2012 #permalink

“You’re out of your frigging mind!”

I'd pay good money to hear you say that too.

Sadly we can't discount the possibility that Ms. Godess left out some crucial aspect culminating in such a response (if it was indeed that) however I would think that the insult would have been directed at her rather than her child. Given their "accuracy" of reporting and their perpetual victimhood, who the hell will ever know what happened.

By Science Mom (not verified) on 11 Oct 2012 #permalink

@ Bronze Dog:

Sure. I often catch a hint of social naivete and black-and-white thinking. But I won't speculate on the ramifications thereof. And there also seems to be premediated tailoring of their message to their intended audience: saying what AJW would like, as they style themselves upon him or other thought leaders of their movement.

I have to watch what I say about these extremist parents** because I suspect that they burn their enemies in effigy and I'm sure they'd get get my hair and skin tone all wrong. We can't have that. ( sarcasm).

** fortunately, there aren't that many of them.

By Denice Walter (not verified) on 11 Oct 2012 #permalink

Thank you for sharing your story, Terryg. It touched me.

@ Science Mom:

Believe it or not, I used to have to speak publicly more frequently and people DID appear to like it - although good money wasn't really involved, I usually tossed in a few finely honed phrases, as I'm sure you can probably imagine.

By Denice Walter (not verified) on 11 Oct 2012 #permalink

terry g - I thank you too for sharing those beautiful and heartbreaking tributes to your wife Ruth. Orac's stories about cancer sufferers who refuse treatment until it's too late often make me cry as well, but those are tears of rage and frustration. The tears from reading about Ruth's courage and your love for her are good ones.

By Edith Prickly (not verified) on 11 Oct 2012 #permalink

@ Mrs. Woo:

I took care of a patient who arrived in a local hospital with a fungating breast cancer that covered one half of her large breast. Her son was a resident physician who had come to the USA after attending medical school in a foreign country.

She was a sweet lady and very *understanding* when I was changing her dressing in her hospital room and left her bedside momentarily to change my gloves. (The stench emanating from her wound was overpowering and fetid).

Count me a terryg fan too.
I study cancer and that served to increase my resolve. More often it's seeing kids with cancer, or the damn brain tumors killing folks in their prime. It's something like anger that I feel (anger against something I don't even believe in).

terryg, thank you for sharing your story.

I was diagnosed with bilateral breast cancer in 2010. I've been through chemotherapy, surgeries, bilateral radiation, and now take Tamoxifen. My prognosis isn't great (locally advanced), but I'm here and right now I have no evidence of disease.

I could have refused all of these conventional treatments and gone the woo route, because I had the option. IMO, the people who choose woo-only are delusional and narcissistic - they are the super-special ones for whom conventional medicine and regular old physicians aren't good enough.

At the same time, they are cowards. Look, I understand the fear. I've lived it. No one wants to go through chemo, or have a breast amputated, or to spend life being wary of lifting anything heavier than a tuna can for fear of developing lymphedema. But I can't imagine looking my loved ones in the eye and telling them that no, I'm not going to do whatever it takes to try to beat this thing because some quacktitioners have assured me that they can cure me, and expect those loved ones to support me while the quacks (and I) hasten my (painful) death. They would have told me I'm nuts, and they would have been correct. They would also have been livid with me, and rightly so. It isn't all about me.

But I had the choice. I'm an American with really good health insurance in a part of the country renowned for its quality health care. I was very fit, otherwise frighteningly healthy, well-nourished, and young for the dx (50). Another dimension of my rage at these quacks has to do with all the women and men worldwide who don't have access to conventional medicine to treat their breast cancer, and who would give everything for the chance to be treated and, perhaps, live. All they have is woo - herbs, talismans, rituals. And they die horrible deaths. They don't have the choice.

terryg, you and Ruth are to be admired. I am sorry for your loss.

Well said JK; I wish you and your family the very best and a long healthy stretch. It takes a lot of guts to share such a personal story and I admire those who do it.

By Science Mom (not verified) on 11 Oct 2012 #permalink

Marry Me, Mindy said -

The fact your nutrition/supplement/alternative approach is not working is evident long before your tumor breaks throuh and starts oozing. Is it denial that makes people continue? Ignorance?

In North America, it is usually a combination of lack of access and lack of information, frequently in combination with undertreated psychiatric issues, with the denial present as a defense mechanism, but not necessarily the primary cause.

The privileged denialists are few in number relative to the downtrodden.

And the usual activity of a denialist is to egg someone else on into dangerous behavior, not to take high risks themseves.

I don't have a good statistical study, but it's my subjective impression that the number of people who spontaneously decide to deny themselves treatment is low.

It's far more common for healthy, privileged denialists to be manipulating the vulnerability of someone else.

Most active vaccine denialists are already vaccinated and have been since childhood, for example.

While it's true that vaccine denial puts everyone at risk, it puts the children who don't get vaccines at a relatively far greater risk. A five year old child who has never been vaccinated is at a far, far greater risk for, say, measles, than some already vaccinated Gen X Thinking Mom.

@ harold:

re denalists

What you describe "healthy, privileged denialists to be manipulating the vulnerability of someone else.." etc

This seems to be right in line with what Kalichman has found amongst hiv/aids denialists who encourage hiv+ people to stop taking ARVs. He catalogues how many of the so- entranced succumb to aids-related illnesses without resorting to SBM's HAART or other readily available options .

By Denice Walter (not verified) on 11 Oct 2012 #permalink

The Australian link is locked. It's pay or play.

By Kelly M Bray (not verified) on 11 Oct 2012 #permalink

Ah, weird - I found it on a Google search and accessed it ok. Try your own Google search using terms Jess Ainscough Starwoman then choose The Australian article on the first search page.

By janerella (not verified) on 11 Oct 2012 #permalink


"Most active vaccine denialists are already vaccinated and have been since childhood, for example."

A good friend of mine had an experience with this at a childhood expo she went to. The Australian Vaccination Network had a booth at the expo, and both the people manning it had had vaccinations "but wouldn't vaccinate now they knew the truth!"

My friend's response was "right, so you want me to endanger my kids to diseases you are protected from? Are you evil or something?"

One of them actually followed my friend around the rest of the expo catcalling her. My friend was so un-nerved she got the expo security to escort her to her car so they wouldn't be able to get her licence plate or any identifying information. And let me tell you, my friend is very fearless - hence why she confronted them in the first place and called them evil.

She wrote a letter to the expo organisers to tell them of her experience and that she would never be back, and would be telling everyone not to go to this expo if they were going to give space to groups like the AVN.

By Christine (the… (not verified) on 11 Oct 2012 #permalink

@ terryg

Add me to the growing list of people who have been profoundly affected by your story. I am truly sorry for your loss.

If you are considering donating your body, please be sure to arrange it in advance, and make sure your family knows as they can over-ride your wishes.

I'm not sure of the conditions at Auckland Uni, but Otago has info here:…

If you haven't seen the "Donated to Science" documentary on TV here, it is available at…

By aunt benjy (not verified) on 12 Oct 2012 #permalink

Thanks Aunt Benjy. its amazing what you can cope with when you have no choice.

I saw half of the doco (thanks for the links), and was impressed. very impressed. Its what got me thinking about the debt I, as a recipient of so much medical practice, owe to so many people. which lead to the comforting thought that pretty much every cancer death increases our knowledge, if by no other means then by providing another data point for statistical analyses.

Thank you so much for sharing your story. You and your wife were clearly an amazing couple. I lost my brother to cancer two years ago. We didn't get much time but we had enough to say what we needed to say and the chance to give him what I consider "a good death" as far as is possible with cancer. He died at home with his family around him and the most marvellous palliative care from his GP and his team, after choosing not to have what, in his case, would have been futile treatment. I hope you know, and are comforted to a degree, that you also did everything you could to give your wife that same peace.
Luckily no-one ever suggested seeing one of the charlatans, from Burzynski to coffee enema pushers, who prey on the most vulnerable at the worst time of their lives. I would not have been able to hold back my anger if they had.
Best wishes to you and your family.

By frozenwarning (not verified) on 13 Oct 2012 #permalink

Coincidentally I just came across an egregious example of chiropractic cancer quackery:

This Chicago chiropractor states on his website: "Dr. LeRoy, a holistic doctor in Chicago, specializes in identifying the factors that have contributed to your illness, and then designs a personalized treatment approach that emphasizes general health. This integrative treatment often includes dietary recommendations, nutrition, acupuncture, breast thermography, chiropractic and massage--depending upon the condition for which you are seeking assistance."

And here's a link to his page on breast theromography:

I'm not a medical professional but I've had enough experience investigating quackery, especially chiropractic, to have serious concerns about seeking treatment for any type of cancer to a DC!

Oh come on, after 25 years of the Simpsons on TV, nome in their right mind would use the name "Dr Nick" would they?

By Marry Me, Mindy (not verified) on 14 Oct 2012 #permalink

Damn. Terry, I read your incredibly moving story here, and then again at grant's blog. Teared up both times.
Stay strong, and carry the memories with you always.

MrsWoo: *hugs*

FrozenWarning: *hugs* yeah, its a superpoposition of "the best of times" and "the worst of times" (sorry to plagiarise but it fits so well) - that you had enough time to say what needed to be said is wonderful, priceless & precious.

JK: *hugs* I'd add "and/or ignorant & gullible" to your list, but yeah, we really do owe it to our loved ones to do our best, as hard as it may be. kia kaha (be strong) brave lady.

rork: *respect*

terryg, your post about your wife ... truly a story to make people think properly. Thank you for sharing it with us.

My dad died nearly 6 years ago of cancer and its complications. He was an army medical corps nurse, and so he wouldn't have any truck with bullshit. He had surgery, forllowed by radiotherapy. The cancer came back and was all over his body. And he died within months of telling us this. But we had him for many years more than we would have if he'd followed the ideas of the bullshit-mongers.

I echo your sentiments.

By David N. Andre… (not verified) on 16 Oct 2012 #permalink

When I was first diagnosed with breast cancer, I went running to the nearest NCI cancer center (local) for all that they could offer me. Mastectomy, chemo, rads, and Tamoxifen. Im done with active treatment and hoping for a long cancer free life. Woo? No freaking way.

Jess Ainscough’s blog immediately sprang to mind when reading this post. She has a recent interview Wellness Warrior TV: What Women Must Know About Breast Cancer With Dr Sherrill Sellman…
that concludes you can heal cancer (via repairing telomeres) with gratitude and compassion. Gratitude and compassion = the cure for cancer. Who knew?

By Sarah McKay (not verified) on 22 Oct 2012 #permalink

11 days later, my comment on Jess' blog is still in moderation. And she has replied to others in the meantime. La la la head in the sand if I ignore it and eat green things and smile insanely all the time it will all go away. This is what I wrote with a link to this article:
"With all due respect, sometimes it is important to acknowledge the other perspective, to read and digest the below – just as heartfelt – observations, without writing someone off just because they are a provider from within the conventional field of breast cancer therapy. Their insights into stories about breast cancer are just as insightful and I think everyone owes themselves, as respectful seekers of information, to remember to include their perspective. They after all are fellow humans with relatives and loved ones to whom cancer has not discriminated, and would not have reason to lie to anyone regarding a disease that touches us all.
Particularly poignant is the first commenter’s experiences with his wife’s illness."

By janerella (not verified) on 22 Oct 2012 #permalink

Ahhhhhh, none of you or anyone else for that matter can actually say that conventional treatment would outlast alternative therapy because you don't know.