Respectful Insolence

As I mentioned yesterday, one of the things I do on this blog that I consider to be a public service is to analyze cancer cure testimonials that are used to sell alternative medicine. Indeed, I did just that yesterday for a testimonial by someone Chris Wark, who will probably feature again one more time this week; that is, unless I have another Dug the Dog moment. In the meantime, this being Breast Cancer Awareness Month and all, a related article came to my attention. Although it doesn’t have anything to do with alternative medicine, it does, like the story of Chris Wark, have everything to do with refusing chemotherapy. I knew the article was going to annoy me as soon as I saw the title, I’ve refused chemo for breast cancer because the gain isn’t worth all the pain: After a double mastectomy, one woman defends a hugely controversial choice. Although it lacks the purely magical thinking that Wark’s testimonial exhibited, it’s disturbing in another way.

The woman who refused chemotherapy is named Sally Becker, and she is known, apparently, as the “Angel of Mostar” for her work as a charity volunteer saving hundreds of lives in war-torn Bosnia. I’ll be honest; I had never heard of her before. For purposes of this discussion, though, it doesn’t matter. What does matter is that four months ago she was diagnosed with breast cancer. Eighteen months before, she had felt a pea-sized lump in her breast, saw a doctor, and got a workup. The workup was apparently negative, but that workup didn’t include a biopsy. Not knowing more, I don’t know if this was appropriate management or not, but earlier this year she noticed changes in her breast:

When I noticed further changes in the same breast earlier this year, I went back to the clinic.

The area around the nipple was puckered and I knew this was a bad sign. I underwent two mammograms, an ultrasound and five biopsies and, two hours later, it was confirmed (by the same radiologist) that it was likely I had Invasive Lobular Cancer (ILC), a condition that starts in the milk-producing glands and makes up around 15 per cent of all breast cancer cases.

However, it is one of the most difficult cancers to detect, especially if the tissue is dense, as on routine mammograms it is often ‘invisible’, presenting more like a spider’s web than a single lump.

Two months later I had a 6cm tumour removed. I chose to opt for a double mastectomy because, with this type of cancer, there’s a higher risk of the disease appearing in the other breast. I was also concerned that a mammogram might not pick it up.

The treatment chosen was not unreasonable, although I tend not to be a fan of double mastectomies in the absence of a gene mutation that predisposes for breast cancer at a high probability, such as a BRCA1 gene mutation. However, in a case like this an argument can be made for bilateral mastectomy. Be that as it may, the specific type of surgery Becker had doesn’t matter when it comes to deciding whether or not adjuvant chemotherapy is needed to decrease the rate of recurrence. The specific indications for adjuvant chemotherapy have evolved over the years, but basically the equation boils down to considering the risk of recurrence, whether or not the tumor makes proteins for which targeted agents exist (such as the estrogen receptor, which is targeted by Tamoxifen, or HER2, which is the target for Herceptin), and the potential side effects of the chemotherapy. We know from the rest of the story that Becker’s tumor was estrogen receptor-positive, because if it weren’t she wouldn’t have been offered Tamoxifen. I don’t know for sure what stage cancer she had

We also know that her oncologist has said that she has a 20-30% of her cancer recurring. Going back to Adjuvant! Online, the oncology decision tool that I used yesterday, it takes some educated guesses about her tumor to come up with the risk of recurrence that she quotes. We also have to consider that the risks in Adjuvant! Online are all calculated assuming that standard of care is followed, and standard of care for a tumor greater than 5 cm in diameter does include radiation after mastectomy. I also assumed that Becker’s tumor was lymph node negative, because otherwise the recurrence risks rapidly skyrocket. So I used a tumor that was greater than 5 cm in diameter, estrogen receptor-positive, grade 2, and in a woman who is in perfect health. This produces an estimated 10 year risk of dying of around 30%. In this case, adding hormonal therapy (i.e., Tamoxifen), improves the odds by 7.8%, while adding chemotherapy improves the odds by 3.7%. The combination results in a 10.6% absolute increase in ten year survival. You can also look at it as a 43% relative decrease in the risk of dying.

Given these figures, one can make an argument that maybe chemotherapy might not be worth it, although, I must point out, many women would disagree and do disagree. They disagree so much that they actually do undergo chemotherapy for a smaller absolute benefit than that. Also, these days there are at least two gene tests that can guide decisions regarding chemotherapy. In the US, we tend to use the OncoType test, a test that is currently only approved for node-negative, estrogen receptor-positive tumors. OncoType produces a recurrence score based on the levels of 21 different genes. A high recurrence score, as you might guess, means a high risk of recurrence. These tumors are treated with chemotherapy. A low recurrence score indicates a much lower risk of recurrence, but also is associated with relative resistance to chemotherapy. These tumors generally do not get chemotherapy. Then there are intermediate scores, for which it is not clear whether the risk-benefit profile of chemotherapy justifies its use; clinical studies are ongoing for these tumors.

Naturally, Becker justifies her decision with all sorts of rationalizations. They’re not entirely unreasonable, but I have to wonder if she really understands them:

The oncologist advised having radiotherapy to my chest wall to kill any active cancer as well as chemotherapy to mop up any stray cancer cells elsewhere in my body – and then five to ten years of hormone therapy to prevent the cancer coming back.

At first, I assumed I had no choice but to climb on the conveyor belt to cancer hell. But, after some research and realising that in my case the treatments on offer could do more harm than good, I jumped off.

There are some breakthrough treatments out there, such as Tamoxifen, which have proven to help prevent cancer recurring. But they can have side-effects such as womb cancer, blood clots and bone disease – and I’m not brave enough to go there.

When I told my oncologist about my decision, he just looked at me in despair. He’s not the only one – to some family and friends my decision is both unfathomable and controversial, especially as I have a 14-year-old daughter Billie.

Shouldn’t I do everything I can to make sure I am around as long as possible to be with my daughter, I hear them ask?

My answer to them is simple: I want to be there for her, but I can’t do that while coping with the brutal and even dangerous side-effects of the treatments on offer.

Ms. Becker has a serious case of not being able to weigh risks versus benefits. You get the idea of where she is coming from from her reference to the “conveyor belt to cancer hell.” It’s true that chemotherapy can be rough, but she makes it sound as though it will make her unable to be their for her daughter. True, she might be feeling quite under the weather for the five months or so that it takes to do the full chemotherapy regimen, but then that’s it. Her hair will grow back and she will get back to normal. As for the risks from Tamoxifen, there’s an even bigger disconnect. The risk of clots, for instance, is less than 1% and only a small fraction of these are life-threatening. The risk of endometrial cancer is elevated by Tamoxifen from around 5 cases in 1,000 to 16, cases in 1,000. that’s a three-fold increased risk, but still only around 1%, and nearly all of these cancers are detected at an early stage that can be easily treated. Indeed, in women over 50, the risk of deep venous thrombosis was increased by Tamoxifen from 0.89 per 1,000 to 1.33 per 1,000, an increase of 0.44 per 1,000. Pulmonary embolism (blood clots from the deep venous thrombosis in the leg traveling to the lung) was increased from 0.44 to 0.96 per 1,000, or by 0.52 per 1,000. Are these risks that need to be understood? Certainly. Are they risks that outweigh the potential benefits of Tamoxifen? Certainly not, but Becker makes it sound as though by taking Tamoxifen she’d be taking an enormous risk of these complications that far outweighs the benefit.

The chance of dying in the next ten years is not the only thing to worry about. For instance, combined chemotherapy and Tamoxifen decrease the risk of recurrence from 52% to around 30%. The reason these numbers are higher is because many recurrences can be “salvaged” with additional treatment and not all recurrences kill within ten years. Worse, she is promoting misinformation by saying that “chemotherapy makes a difference of only 1 or 2 per cent to the chances of being disease-free after five years – so, in my case at least, there would be little benefit.” That might have been true if Ms. Beck’s cancer were only a stage I cancer; indeed in that case, barring a high OncoType score most oncologists would have recommended only Tamoxifen, not chemotherapy. However, Ms. Beck’s tumor is far more advanced than that. Again, unless she had a low Oncotype score, the potential benefit of chemotherapy is not that small, and the potential benefit of Tamoxifen is considerably greater, at less toxicity.

In some ways, though, Ms. Beck’s refusal to undergo radiation therapy is as big a problem. A 6 cm tumor is considered a locally advanced cancer, and in node-negative locally advanced cancers, the risk of recurrence in the chest wall is around 15-20%. For a woman with disease like Becker’s post-mastectomy radiation can significantly decrease that. As you might recall from the case of Michaela Jakubczyk-Eckert, chest wall recurrences are a horrible, horrible thing. It’s called en cuirasse carcinoma, a horrible, painful, and nasty manifestation of breast cancer in which the breast cancer recurrence grows on the chest wall 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. By not accepting radiation therapy at least, Becker is taking a much higher risk of this happening to her. Sure, the odds are in her favor; it’s probably only a 15-20% risk that she’s taking, and if recurrences are caught early enough they can be excised and radiated with a decent chance of control; so the odds of her developing en cuirasse disease are lower than that.

So why is Becker so afraid of adjuvant therapy? Well, she does make a not unreasonable argument that, if her chances of recurring are 20-30% her chances of not recurring are 70-80%, which is not bad. Perhaps. It is also her right to make that choice for herself, even if I think it’s not a good choice and is based on a view that makes it sound as though chemotherapy will destroy her life forever and Tamoxifen will damn her to blood clots, pulmonary emboli, and uterine cancer. It is rather amazing how a woman like her can understand her odds without further treatment reasonably well but exaggerate the risks and downplay the benefits of adjuvant therapy. Given how aware she is of the odds, surely she knows the real risks of Tamoxifen and chemotherapy by the numbers. So, no, it doesn’t bother me overmuch that Ms. Becker decided that she didn’t want radiation, chemotherapy, or Tamoxifen for herself. It does, however, bother me to see the bad arguments she is spouting that seem custom-designed to dissuade other women from choosing those adjuvant therapies and thus lead some of them to suffer fates as horrible as en cuirasse disease, distant metastasis, and death.

For example:

For example, standard surgery for breast cancer used to involve removing tissue from the shoulder, the chest wall, ribs – anything and everything that could be removed without killing the woman.

In the Twenties, Geoffrey Keynes, a doctor at Bart’s Hospital in London, refused to follow this standard practice – instead he removed only the tumour and then gave radiotherapy.
He was universally ridiculed, with ‘lumpectomy’ coined as a term of derision by his colleagues.

Today, the lumpectomy is standard procedure. Yet if Keynes did that today, and a patient died down the line, he would probably be sued for medical negligence.

No doubt Ms. Becker got this story from Siddhartha Mukherjee’s The Emperor of All Maladies.

Yes, in retrospect, it’s always obvious that new ways of treating disease that turn out to be better than the old way were better. It’s never so obvious at the time. One also has to remember that radiation was not widely available. The reason why the Halsted radical mastectomy took hold is because back when Halsted developed it surgery was the only modality that could cure breast cancer, and the breast cancers he treated tended to be large and locally advanced. In the absence of effective adjuvant therapy, radical surgery was it as far as potential cure goes. No one argues these days that the Halsted radical mastectomy outlived its usefulness by at least two or three decades, but comparing this issue to her refusal of standard-of-care adjuvant therapies is deceptive. After all, one notes that without radiation, breast conserving surgery is not safe; the risk of local recurrence can be 25% to 50%, depending on the characteristics of the tumor. In the 1920s, radiation therapy was incredibly primitive.

I also have a problem with Ms. Becker using her battle with cancer to promote this:

Following the death of his wife, the novelist Josephine Hart, two years ago from ovarian cancer, Lord (Maurice) Saatchi put forward a Medical Innovation Bill that would allow just this to happen.

This would mean that as long as they have approval from the patient and other doctors – and follow guidelines – doctors could try alternatives, such as drugs still undergoing trials, or a new surgical technique. I will be giving it my full support when the Bill is presented to the House of Commons on Friday, because it could benefit millions.

First off, what Ms. Becker did was not in any way radical, novel, or experimental. It is basically a variant on the old standard of care before adjuvant radiation therapy and adjuvant chemotherapy were developed, minus the removal of all the axillary lymph nodes. We know the risks of what she did, the potential price she might pay, and what the increase in the risk of her paying that price is because she eschewed effective adjuvant therapy. What this bill sounds as though it would do is to give free rein to “medical mavericks,” from the creative to pure quacks, to do whatever they want to do without all those pesky ethics boards and without actually protecting human subjects taking part in what will be in essence research using N of 1 trials without rigor. The very reason for clinical trials and the extensive infrastructure to oversee their conduct and ethics is because just letting doctors do what they want to do results in abuses of human subjects. The way Keynes just experimented based on an idea with little or no preliminary data in the 1920s might have been acceptable 90 years ago because we didn’t know any better; it’s not now.

She also confidently proclaims that this law could benefit millions. More likely it could put millions at risk of being harmed. After all, most experimental medical treatments fail. Only a small fraction of them make it through all the clinical trials. Some turn out to be more harmful than beneficial. Some, like surgical techniques, ultimately turn out to be beneficial, but during the “learning phase” could cause significant injury. (The example of laparoscopic cholecystectomy comes to mind; in the 1990s when it was replacing open gallbladder surgery it carried a much higher risk of injury to the common bile duct.)

Although Ms. Becker has every right to decide what is best for her for whatever reason she wishes, when she uses her experience as a breast cancer survivor who refused adjuvant therapy to promote ideas like this, she needs to be called out, breast cancer survivor or not.

Comments

  1. #1 T.
    October 16, 2013

    While I agree this bill seems a terrible idea, I do think that any adult has right to refuse treatment for whatever reason. That is, if she is truly aware of what it may mean for her. It is her body, her life and her choice.

  2. #2 Lawrence
    October 16, 2013

    “May the odds always be in your favor….”

    Unless you insist on doing something insanely stupid or trying to rationalize using incorrect Science.

  3. #3 Dangerous Bacon
    October 16, 2013

    “I underwent two mammograms, an ultrasound and five biopsies and, two hours later, it was confirmed (by the same radiologist) that it was likely I had Invasive Lobular Cancer”

    Nitpick – but there’s no way the _radiologist_ confirms a diagnosis of invasive lobular cancer two hours after the biopsy.
    A _pathologist_ could give a nearly immediate confirmation upon frozen section evaluation of a biopsy specimen, but that’s still a tricky diagnosis.

    Wonder what else Ms. Becker might have gotten wrong in her story.

  4. #4 Eric Lund
    October 16, 2013

    Google Ads may be up to its old tricks again. To the right of this post, I got an ad that says, “Not all women with breast cancer need chemotherapy,” and points to a web site I’ve not heard of before but which triggers my woo alarm, AskforAnswers.com. In the post, Orac does point out that in some cases a rational argument can be made for not doing chemotherapy. However, “I just don’t want to” is not a rational argument.

  5. #5 Vasha
    October 16, 2013

    I tend not to be a fan of double mastectomies in the absence of a gene mutation that predisposes for breast cancer at a high probability, such as a BRCA1 gene mutation.

    I would want a double mastectomy just so as not to be lopsided — it makes it easier to wear prostheses or not, for example. Yeah, I know that larger surgical area/longer surgical time means more chance of complications, but not that much more.

  6. #6 herr doktor bimler
    October 16, 2013

    Lord (Maurice) Saatchi* put forward a Medical Innovation Bill

    I don’t know which is worse here. That the UK system of institutionalised corruption — a second Parliamentary house with appointments in return for political favours — puts people in a position to legislate according to their personal experiences without concern for wider consequences? Or that the person in question is an advertising sh1tweasel like Saatchi?

  7. #7 Delurked Lurker
    On a gas covered planet whizzing around a nuclear fireball
    October 16, 2013

    Hmmm I had a google ad promoting a quacky woo centered Altie retreat just outside of Sydney.

    Do no evil ……… really ?

    Great article by the way and definitely a keeper as was yesterday article. Nice to see you blogging about cancer especially two days in a row. Onya Orac :)

  8. #8 lilady
    October 16, 2013

    (I’m a novice here)

    Sally Becker states…

    “I’d had a mammogram 18 months earlier after finding a pea-sized lump in my right breast, which also appeared slightly misshapen. I knew something wasn’t right, but the X-ray and ultrasound scan came back clear and the radiologist reassured me everything was fine.”

    She had “a diagnostic mammogram”…was it a 2-D digital mammogram or a 3-D mammogram?

    http://www.massgeneral.org/imaging/services/3D_mammography_tomosynthesis.aspx

    It appears that she had a 2-D mammogram And a 3-D mammogram, breast sonogram and biopsy when she noticed changes (puckering surrounding the nipple), in that breast.

    ” When I noticed further changes in the same breast earlier this year, I went back to the clinic.

    The area around the nipple was puckered and I knew this was a bad sign. I underwent two mammograms, an ultrasound and five biopsies and, two hours later, it was confirmed (by the same radiologist) that it was likely I had Invasive Lobular Cancer (ILC), a condition that starts in the milk-producing glands and makes up around 15 per cent of all breast cancer cases.”

    I recently learned that breast radiologists do needle biopsies. Those biopsy specimens are sent to pathology for analysis. A two hour turnaround time does seem unusual to me.

  9. #9 thenewme
    October 16, 2013

    “Although Ms. Becker has every right to decide what is best for her for whatever reason she wishes, when she uses her experience as a breast cancer survivor who refused adjuvant therapy to promote ideas like this, she needs to be called out, breast cancer survivor or not.”

    Yes, yes, yes, and YES!!!!!!

  10. #10 Jenn
    October 16, 2013

    It might just be me, but I’ve always thought surgery to be scarier than chemotherapy. Being drugged and then cut up seams far more daunting than taking medications that might make you sick (which you can always stop taking if it gets too bad). So why go through the an operation but then refuse the follow-up treatments?

    That said, I’m currently trying new medication so I can avoid more surgery.

  11. #11 Kemist
    October 17, 2013

    Jenn : Maybe because there are very few movies that detail the suffering you can go through from failed surgery or the healing of complex wounds, but there is lots about what the side-effects of chemotherapy from the 1980′s looks like ?

  12. #12 TBruce
    October 17, 2013

    Jenn:
    It’s my opinion that certain medical procedures get a bad reputation, possibly from the past when techniques were not as refined as they are currently. I recognize this from doing bone marrow collections, which many people are terrified of. I find that most people are pleasantly surprised that the pain is not as bad as expected. I think this dates back to when bone marrows were collected from the sternum, which is a very sensitive area. Also, the patient got to watch the doctor boring a hole into the centre of his or her chest. Nowadays, it’s taken from the back of the pelvis, an area out of sight and less sensitive. Chemo has a reputation of causing nausea and vomiting of unbearable severity. The truth, AFAIK, is that it is usually tolerated quite well. There are exceptions in both cases, of course, but they are exceptions and not the rule.

  13. #13 epador
    October 19, 2013

    I still have a problem when quoting statistics to patients using numbers like “50% reduction in risk of dying” when something like this: “without treatment you have a 40% chance of dying, with treatment a 20% chance, so there is a one in 5 chance receiving treatment will help you” is a much more honest and forthright presentation to help the patient understand their risks. It is far too often heard, this “50% risk reduction” when the reduction is from 15% to 7%, which translates to a 93% chance the treatment either won’t help or isn’t necessary.

    I see more of a problem pushing adjuvant therapy in colorectal cancer patients than in breast patients with this technique, but even in this instance, I think its best to standardize the way we discuss risks and benefits with patients and among ourselves.

    I agree local chest wall recurrence is indeed a horrible, horrible thing, and I agree that avoiding it when local recurrence risk is high is a poor choice. But from my experience, when it occurs in a previously irradiated site, it can be even worse. The tissue is less amenable to healing if surgery is attempted, the cancer seems to spread quickly within the radiation ports as if some defense mechanism in the skin is damaged by the treatment. Fortunately this is quite rare.

  14. #14 epador
    October 19, 2013

    Oops, “avoiding it” in last paragraph should read “avoiding radiation therapy”

  15. #15 sally becker
    October 29, 2013

    In response to Orac’s comment on the article that appeared in the Daily Mail. My work in the Balkans has no connection with my diagnosis or my choice of treatment and it is not surprising you have never heard of me as the war has been over for some time. I find it odd that you would consider your blog to be a ‘public service’ when you don’t even bother to check your facts. ILC (Infiltrating Lobular Cancer) has a specific appearance so the radiologist was able to make a diagnosis from the results of the ultrasound. Of course it was another two weeks before it was confirmed by the path lab. With regard to chemotherapy, I stated that ‘in my case’ chemotherapy would have made a difference of only 1% or 2% to my chance of survival. As for Tamoxifen, I actually said, ‘There are some breakthrough treatments out there such as Tamoxifen which have proven to help prevent cancer recurring. But they can have side-effects such as womb cancer, blood clots and bone disease – and I’m not brave enough to go there.’
    I happen to have a history of blood clots so I would be at greater risk than most. And if you checked your facts, you would know that in spite of the benefits, many women have stopped taking them because they have been unable to tolerate the side effects. With regard to your reference to Saatchi’s Bill, I notice you left out the fact that I said, ‘of course, we don’t want to be experimented on by mavericks. However, when faced with a terminal illness that’s not responding to standard treatment, doctors – with the permission of their patients and the approval of multi-disciplinary team of medics – should be allowed to try new drugs and surgery.’ As Epador explained in his post, local chest wall recurrence is indeed horrible, but if it occurs in a previously irradiated site, it can be even worse. And by the way, 15,000 cancer patients die each year in Britain, not from the disease itself but from fatal infections caused by damage to their immune systems as a result of chemotherapy. I am not scaremongering, as you put it. I am simply saying that it’s time people were given a choice in the kind of treatment they have, rather than being forced into taking something that might ultimately cause more harm than good.

  16. #16 Heather
    Brighton
    October 31, 2013

    Everyone is entitled to an opinion but it’s inappropriate and unfortunate to quote inaccurately. Ms Becker is not advocating that everyone should follow her path – check out the full article on the Daily Mail’s website if you want to read what she said. Also along with all the inaccuracies that have already been pointed out, least deserves the respect of having her name printed correctly – BECKER, not Beck!

  17. #17 Orac
    October 31, 2013

    One notes that Ms. Becker’s name was misspelled as “Beck” only twice out of several mentions. Those instances have been corrected. These things happen in a blog that averages 1,500 to 2,500 words a day.

    As for Ms. Becker not advocating that people follow her path, well, to use what you Brits like to say, “Bollocks!” True, she didn’t explicitly advocate that everyone should follow her path. That’s a straw man of what I said in my post. She did, however, spout a whole bunch of misinformation about chemotherapy, how cancer is treated, and represented her decision not to undergo chemotherapy and radiation as brave and informed. “Misinformed” would be a better word.

  18. #18 Orac
    October 31, 2013

    As Epador explained in his post, local chest wall recurrence is indeed horrible, but if it occurs in a previously irradiated site, it can be even worse.

    True, but chest wall recurrence is much less likely to happen if the chest wall is radiated after surgery.

    And by the way, 15,000 cancer patients die each year in Britain, not from the disease itself but from fatal infections caused by damage to their immune systems as a result of chemotherapy.

    Citation, please.

    I am not scaremongering, as you put it. I am simply saying that it’s time people were given a choice in the kind of treatment they have, rather than being forced into taking something that might ultimately cause more harm than good.

    No, Ms. Becker. I’m afraid you are scaremongering, and I stand by my statement that the Daily Mail was grossly irresponsible for publishing your article. You portray chemotherapy as a horrific death sentence and don’t put the tiny risks of Tamoxifen into context with the risk of recurrence and death from cancer.

  19. #19 NancyB
    November 2, 2013

    I have been reading your blog for almost two years now and find it insightful and well-written, and full of so much wonderful information that I often discuss your posts at dinner parties. Today, however, I was dismayed by your comment,

    “True, she might be feeling quite under the weather for the five months or so that it takes to do the full chemotherapy regimen, but then that’s it. Her hair will grow back and she will get back to normal.”

    Having finished chemo and rads a year ago for early stage but aggressive BC, I know that not all of us feel “under the weather;” some of us really do suffer through chemo (but, speaking for myself, it is a choice I gladly endured). And yeah, my hair came back (grey and all, dammit), but life is not “normal” by a long shot. Non-surgical treatments really suck (and I cannot understand those who avoid at the very least surgery to remove the cancer…but that’s another topic for another dinner party) and they’re not fun, and they sometimes leave lingering, long-term SEs behind. Comments such as yours above continue to perpetuate the myth that chemo and rads are an “inconvenience” rather than a true challenge, and that once it’s all over we will be “normal” again. We get back to…life, and living, and loving, but it’s not ever really normal again.

    Additionally, if we chose to continue on with treatment, taking Tamoxifen or AIs, we may endure more painful and debilitating SEs for five or even 10 years (or longer). True, not everyone has SEs, and the risks of blood clots and uterine cancer are very small . On that note I can appreciate the difficulty Ms. Beckers – and all cancer patients – have in making treatment choices. For me, chemo and rads was a no-brainer; Tamoxifen and I did not get along at all, and after several “vacations” Tami and I broke up permanently because I could not endure the crippling joint pain. I’m pretty sure it’s well-known that Tamoxifen compliance is far less than 100%, and I can assume much of it has to do with SEs.

    Anyway…back to the dinner party.

  20. […] “medical heretic”. His opposition to mastectomy and hysterectomy appears to be based on outdated ideas of their prevalence: while the Halstead procedure outlived its usefulness by decades, it had […]

  21. #21 Dominic Nutt
    London
    November 4, 2013

    Dear Orac

    The Saatchi Bill absolutely excludes and forbids any maverick actions by doctors. The test applied within the Bill in order for doctors to legally carry out any non-standard procedure is extremely high. Indeed, it will specifically clarify for the courts, and identify clearly the mavericks and separate them from the sensible and careful innovators.

    I urge you to read the Bill and the explanatory notes prior to making further comment. It can be read here. http://services.parliament.uk/bills/2012-13/medicalinnovation.html

    In regards to the 15,000 figure ref the amount of patients who die from cancer treatments in the UK, this is drawn from estimates. It is not and cannot be an accurate figure. It is indicative. The estimate quoted was derived from specialist ion the filed including, for example, given by Prof Alastair Buchan who is Dean of the Oxford University Medical School. It is an estimate, because figures are not collected by WHO in an easily identifiable way, and death certificates do not identify treatment for cancer as a cause of infections that cause death.

    See:

    http://www.telegraph.co.uk/health/10069585/15000-people-die-every-year-because-of-cancer-treatments-Lord-Saatchi-says.html

    Overall, you raise valid points for discussion. However, none of us have all the information and all of us are expressing opinions. I would therefore ask you to be more gentle and less aggressive in your approach. Please let’s keep this reasonable and discursive. You disagree with Sally. But that does not permit anger. Let us all be a little humble in our comments.

    Dom

  22. #22 Orac
    November 4, 2013

    I’d take it far more seriously if Saatchi’s estimates came from actual peer-reviewed medical studies; he claims 10% of cancer patients die from therapy, which, if true, would be scandalous. There is peer-reviewed literature on this topic. For instance, he says:

    He said new figures would provide better information about deaths following the delivery of chemotherapy while others statistics would give information about death after surgical treatment.

    Uh, there is copious peer-reviewed literature on postoperative complication and mortality rates after cancer surgery. The data for chemotherapy are less comprehensive, but, seriously, if he says this his experts didn’t do a very good job at least at looking at the surgery aspect..

    As for the bill, I disagree. The standard for doctors to legally carry out non-standard procedures under the bill does not appear to be very high at all. It’s also schizophrenic. It says that it is not intended to allow experimentation, but then is framed in such a way that virtually any treatment done under its auspices would be an “N of 1″ clinical trial. It’s disingenuous right at its very heart, whether Saatchi realizes it or not.

    As for your concern trolling about my “anger,” well, let’s just put it this way. Ms. Becker spread misinformation about cancer and chemotherapy in such a way as to glorify her own decision when that decision was based on the aforementioned misinformation. If you think I was unduly harsh, you really are a rather sensitive soul. You’re clutching your pearls at this post? Seriously? Go back and read it again. I rather suspect you just didn’t like that I was critical.

  23. #23 Dominic Nutt
    London
    November 4, 2013

    Dear Orac

    The Saatchi Bill absolutely excludes and forbids any maverick actions by doctors. The test applied within the Bill in order for doctors to legally carry out any non-standard procedure is extremely high. Indeed, it will specifically clarify for the courts, and identify clearly the mavericks and separate them from the sensible and careful innovators.

    I urge you to read the Bill and the explanatory notes prior to making further comment. It can be read here. http://services.parliament.uk/bills/2012-13/medicalinnovation.html

    In regards to the 15,000 figure ref the amount of patients who die from cancer treatments in the UK, this is drawn from estimates. It is not and cannot be an accurate figure. It is indicative. The estimate quoted was derived from specialists in the field including, for example, Prof Alastair Buchan who is Dean of the Oxford University Medical School. It is an estimate, because figures are not collected by WHO in an easily identifiable way, and death certificates do not identify treatment for cancer as a cause of infections that cause death.

    See:

    http://www.telegraph.co.uk/health/10069585/15000-people-die-every-year-because-of-cancer-treatments-Lord-Saatchi-says.html

    Overall, you raise valid points for discussion. However, none of us have all the information and all of us are expressing opinions. I would therefore ask you to be more gentle and less aggressive in your approach. Please let’s keep this reasonable and discursive. You disagree with Sally. But that does not permit anger. Let us all be a little humble in our comments.

    Dom

  24. #24 Orac
    November 4, 2013

    And why did you post the same thing again?

  25. #25 Dominic Nutt
    November 4, 2013

    Hello, Orac.

    My mistake. Apologies.

    Dom

  26. #26 Lawrence
    November 4, 2013

    @Dominic – toll trolling is just as bad as regular trolling….

  27. #27 Lawrence
    November 4, 2013

    Damn…I meant “tone trolling.”

  28. #28 Dominic Nutt
    November 4, 2013

    Dear Lawrence,

    I genuinely don’t know what you mean.I’ve looked up ‘tone trolling’ and I think you are saying that by being polite, I am being as bad as if I were being rude.

    I don’t know where to go with that. What is the correct tone and style of delivery that cuts through the rules?

    I have made my case, as clearly as I can and don’t feel it is helpful to you or others, to comment further. It looks like I’ve offended you and Orac and, probably others. This isn’t my intention – really. I’m not up for arguing, and simply wanted to say that I posted the second post in error. That’s why I apologised. That’s it. Honestly. No agenda. Allow me to apologise again.

    Sorry.

    I will butt out.

    Dom

  29. #29 Lawrence
    November 4, 2013

    @Dom – “tone trolling” is the same as “concern trolling” that you’re not making an argument for or against the facts, just that you don’t like the way the message is being delivered (i.e. you / the author is being mean, so stop it)…..

    How an one nicely say that “quacks kill?”

  30. #30 sally becker
    November 13, 2013

    I am trying to highlight the fact that in many cases women are prescribed radiation and chemotherapy even when there would be little or no benefit. According to the St Gallen Report, which is accepted globally as providing the highest quality evidence-based discussion/consensus on breast cancer treatment, the use of Adjuvant Radiation and Cytotoxic Chemotherapy would not be recommended in my case.

  31. #31 Krebiozen
    November 14, 2013

    Sally Becker,

    I am trying to highlight the fact that in many cases women are prescribed radiation and chemotherapy even when there would be little or no benefit.

    Do you have some evidence to support this assertion? In which cases do the risks of adjuvant radiation and chemotherapy for breast cancer exceed their benefits? I am sure you are well-meaning, but it greatly concerns me and many others that you are spreading misinformation that could easily lead women to make poor decisions that may have devastating effects on their health.

    According to the St Gallen Report, which is accepted globally as providing the highest quality evidence-based discussion/consensus on breast cancer treatment, the use of Adjuvant Radiation and Cytotoxic Chemotherapy would not be recommended in my case.

    I have looked through this article on the highlights of the St. Gallen report, but I can’t see any reference to cases in which adjuvant radio- and chemotherapy are not indicated. In fact the document makes it clear that these treatments are very important (my emphasis):

    Dr Angelo Di Leo updated evidence from the Oxford overview. This latter meta-analysis demonstrated the clear benefit of adjuvant chemotherapy over no chemotherapy; improved outcomes when using anthracycline-based therapies compared with CMF; and a small but significant improvement in disease-free, breast cancer-specific, and overall survival with the addition of taxanes to anthracyclines. In contrast to the increasingly recognised importance of tumour biology in treatment response, all subgroups were shown to benefit from chemotherapy. Although absolute benefits varied relative to tumour stage, there were proportional benefits, roughly equivalent across subgroups, irrespective of tumour size, nodal status, grade or ER status. [...]
    Patients treated with sequential chemotherapy had a significant reduction in relapse or death as compared with shorter duration of therapy. Prolonged chemotherapy appeared to be more efficacious in all subgroups including ER-negative disease. [...]
    Aggressive systemic therapy is often warranted for young women both from a chemotherapy and from a hormonal standpoint, given the substantial risk reduction. Multiagent chemotherapy and biologic therapy, targeting the tumour similar to the treatment in older women, are standard, with careful attention to unique survivorship concerns, including genetics, infertility and psychosocial concerns.

  32. #32 sally becker
    November 15, 2013

    There are indeed cases where radiotherapy and chemotherapy are necessary (until something better comes along) but for patients with my histology where the cancer hasn’t spread to the lymph nodes these treatments aren’t helpful. The St Gallen report states:
    The Panel was content to omit post-mastectomy radiotherapy with pathologic uninvolved nodes even when fewer than eight nodes had been examined and if the tumour was ≤5 cm.
    With regard to Adjuvant Cytotoxic Chemotherapy-the panel was clearly of the opinion that factors arguing for the inclusion of chemotherapy were histological grade 3 tumours,high Ki-67, low hormone receptor status, HER2 positivity or triple-negative status, high 21-gene RS, high-risk 70-gene signature and the involvement of more than three lymph nodes.

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