Why is it hard to see beyond the Western model for treatment?

Best of luck. At stage 4, I agree, what do you have to lose, and at stage 1, you have room to move.

I too rejected chemo and am trying to follow the anti cancer diet......I do believe it is all about the environment and that cancer is an opportunist, but also some of us are more prone to cancer than others, but scientists are finding 505 of it is coninected to lifestyle so why not treatment having same impact - I think doctors are also scared of cancer as they dont like to feel helpless´and also many people will not make lifestyle changes prefering the classic reductionist approach to medical treatment

Good luck with your protocol

To me, much early stage cancer treatment is unpalatable precisely because it does NOT follow the Western medicine model of empirical research. Aside from surgery, most adjuvant treatment for early stage bc has not been subject to the strictest of scientific trials. Chemo has not been tested against placebo, for example. Claims about selective estrogen suppression preventing recurrence came largely out of a study that showed more benefit from progestin - not estrogen - suppression, but these results were and are pooh pooed by many (I have a pet theory that Tamoxifen's effectiveness is NOT due to estrogen suppression but to a by product of that - perhaps protection for the bones). 

Finally, screening mammography has never been shown to be beneficial for women under 50, yet it is routinely proposed, especially by this site.

We like to think that science is inured from politics - and from superstition ("more is better") but to me breast cancer violates the tenets of what we want to believe Western medicine to be: evidence-based, unbiased and empirical. Too much bc treatment is, instead, founded on politics, superstition and fear.

And that, IMO, is why we still don't have a cure.

I, too, would not be alive today but for the surgery.

It isn't the cancer industry alone that anyone should look at. Frequently the scientists are the most avant guarde. But patients, family members and doctors often hold too much sway in emotional ways. Advocacy is great, but if it leads to false beliefs about the disease and the cure, the Western medicine model is compromised.

Ltothek - There have been with and without chemo studies - but not double-blind placebo controlled ones. So they are able to say who did or did not have chemo, but as far as I know, both cancermath and adjuvantonline rely on retrospective data and they express correlations -NOT causation. For reasons that only a Ph. D statistician can explain well, retrospective data analysis lends itself to a lot of bias and errors even in the most conscientious hands. In a general sense, this is because the data hasn't been "controlled" at all stages of the process. Statistical data has value -but it's very narrow and, IMO, overused in cancer. In fact, some of the biggest skeptics in modern cancer conventional wisdom are bio-statisticians. One eminent German one believes that chemo hastens death for many a stage IV patient. For others, it may prolong life. But ALL stage IV patients are offered chemo under certain conditions (such as when hormonals have failed them or they are triple neg). Statistics have forced that all or nothing mentality. ALL patents in a sub-group are being given what easily biased studies show only a narrow majority, or perhaps a minority will benefit from.

I do think rational thinking is slowly creeping into the process, but politics and fear are slowing things down. For example, many women on this forum who were, say, stage 1 with no nodes would have automatically been given chemo just four or five years ago. Today that is no longer automatically the case. Active surveillance for DCIS is finally being discussed between adults in a calm way, and "throwing everything at it" is getting slightly anachronistic - so I hope. So there is progress. Komen is losing power. But no one is pushing for more funding for better studies - the expensive, clinical trials, the costly but risky work that could be groundbreaking but that also has a high risk of failure. Instead, it's all about "this chemo will give you six months more than that one." Talk about slim pickings.

It is still, sadly, hard to post on alt. forums without having conventionalists say that all is satisfactory albeit imperfect. I don't agree that patients really have choices. The only choices most cancer docs give is: do as I say or die. That's not a choice. In fact, the doctor's recommended treatment may often be what kills.  A stage IV sister deserves better than to be told she should be grateful for an extra six months. A stage II person shouldn't be given a do or die ultimatum. These are NOT honest choices. They are about as "free" as choosing your manner of execution.

The other "choice" is given by upper-middle class radiologists/advocates and others: live in a safe (usually expensive) area and eat (expensive) organic and YOU can PREVENT BC. OR: get tested and you can prevent everything. Both unproven. The other myth is that being a vegetarian is somehow healthy; again, this is espoused by people fortunate enough to live near supermarkets where fresh vegetables are chosen. I, too, got cancer young, with no family history. In some ways, I took the "die" option of treatment. I am still here - for now.

I don't believe in non-evidence based treatment, but one can hardly blame "alties" for the sparsely sourced information they have - no one is out there really investigating it.

Edited for clarity.

Breast self exams have also been found to not confer any great benefit in large studies, though for individuals they may prove invaluable (now doctors use the rather vague phrase "breast self awareness").

There is a difference between screening and diagnostic mammograms. I myself have only had a diagnostic one, as part of the workup I received after I found my lump.

Mammograms purely for screening purposes are those one has when there is no suspicion of anything. Those have high rates of false positives. Over the years hte cumulative radiation exposure could indeed lead to cancer.

Many people under 50 think that because a mammogram FOUND their lump, mammograms are useful. But in fact usually one of the following is true: a) YOU or someone else found a lump, and the mammogram is a diagnostic one (more detailed, better imaging) or b) the actual confirmation of it being BC was made using other technology, such as a simple needle biopsy.

I would recommend the following book (thanks, VR!) "The Big Squeeze" which tells of how politics played a larger role than evidence in recommendations of screening mammograms for women under 50.

BCO and its founder are huge proponents of such mammos, though. Both this  site's founder and the author of The Big Squeeze are radiologists. Fortunately, the tide is turning against Marissa Weiss's thinking.

Dltnhm,

Certainly, mammograms are useful when one looks at individual cases, like yours. I believe Athena was pointing out a situation of lack of overall benefit with screening mammos. I had a screening mammo almost every year since I turned 40. Shortly before my 55th birthday screening led to diagnostic, led to biopsy and a diagnosis of dcis and IDC. Two months after that, a bone met, which was probably there all along, was found. That certainly made me question the value of a clean mammo just a year earlier.



Athena,

I understand the generalities you are making about doctors and "do as I say or die" attitude. Patients and families need to feel more empowered to question their oncs and make their own decisions. I have been fortunate to see an onc who laid out several options for me and then put the ball in my court. Even though I'm stage IV, I chose not to throw everything at it. My onc has respected my decision and I am very happy with the fact that it feels like we are a team and I am the leader.

Caryn

Oh my goodness, Athena, THANK YOU.  I really am trying to get a higher level of understanding, and your explanation was helpful.  It is also clear that the methodology is sorta out of my league, but I'm trying because it really does help parse the information in studies.

Here's something interesting to think about.  Our studies report that BSE and early detection may not save lives.  Yet, in the Republic of Georgia (worked there recently), the majority of BC cases are diagnosed later stage out of the gates and patients are dying rapidly. (A lot of post-war societies are experiencing epidemic rates of cancers they believe to be environment and stress triggered.) This seems to me to point to treatments and detection having a role in survival.  And our stats here show cancer survivals are improving.  Clearly, it's complicated.

To the point of alternative vs. allopathic, it would be amazing if we could remove the long arm of corporate profit from treatment.  Only then would we really get unbiased presentation of facts, with more research towards a cure and alternative treatments.

However, I think it's extremely reductive to call chemo "poison". First, some are derived from organic matter (Taxol is the yew tree).  Second, even in alternative approaches, megadosing is often required to have any supposed effect.  Megadosing on anything, from Vitamin C to Taxol, has repercussions.  Cancer happens--it happened to the Egyptians in ancient times--and treating it requires major intervention.  I just can't ever believe that everyone will be saved by good eating and low stress.  The genetic predispositions illustrate that pretty clearly.

To the point of vegetarianism, I have been an educated one--never ate the junk food soy replacements.  So, sorry...still no real logic in my cancer. 

Also probably worth noting that I worked with a naturopath the whole way through. I really had great results--no neuropathy and generally able to bounce back well.  Can I attribute that to supplements and good eating?  Perhaps.  But I was also 15 years younger than my cohort.  The other latest studies indicate patients better watch it during treatment: it is thought anti-oxidants may protect cancer cells as well as the ones we want to work for us.

Not trying to be antagonistic, simply answering "Why it is hard to see beyond the Western model".

Mrs H, there is a fair amount of evidence to suggest that the problem with cancer is that the cancer cells trick the immune system into leaving them alone, so having a strong immune system won't help. Chemo is clumsy and much less than ideal, as a treatment, but for the moment, it is still the best bet for a lot of people, and, from my perspective at least, losing your hair beats losing your life.

"We can all throw stones at "the cancer industry" and what they are doing.  However, a few years ago I would not be alive."

Yep, my dad's aunt died from breast cancer in the 70s. There wasn't much they could do and surgery was not enough in her case. I am glad to have more options than she had.

I am not making a comment on attitudes by doctors. Mine were great. My point is that their ultimatums are delivered because it is the only information they have. For my stage and grade, I was given the adjuvantonline quote, and my questions about chemo were answered by my honest and forthright MO mostly with "we don't know."

When I refused chemo, he finally said, "you are an extraordinary person." Somewhere, deep down, he knew I had a point. But where does that leave me as a patient?

It's often not the practitioner but the orthodoxy. My physicians listened and respected my wishes too. The point is, they could not offer much beyond the standard fare. My BS and PS did a superb job and we had a nice, collaborative relationship. My options for adjuvant treatment were either take it or leave it. The adjuvant/recurrence prevention hodgepodge I came up with was my own and one I came to after following part of the standard adjuvant medical plan almost cost me my life.

I have been a patient in other complicated, life threatening health conditions, and there was infinitely more flexibility and empirical wisdom at work - eve in instances with no cure. Part of the confidence with which I speak out about the breast cancer conventional wisdom is precisely because I can compare it to experiences in other areas of medicine.

Caryn, ironically, I think stage IV patients are treated more in accordance with the Western evidence model, in that they are treated to the scan and/or the symptom. There is recurrence prevention treatment, of course, but it is based on a real event that was observed (eg: you have a spine met, let's give you hormonals to shrink it and to prevent other mets - if the met doesn't shrink, then let's try something else). You know what is there and there is sometimes more than one way to get rid of it. In early stage adjuvant treatment, it is a "just in case," "we don't know" "look at the 'stats' " world of uncertainty. And it's FEC, ACT with or without H. The only guarantee is that you will lose your hair without a cold cap. But the chemo may cause the cancer to spread - or not. So you may end up stage IV - or not.

There are natural substances that work against cancer tricking your impune systemic - if you opt for complementary route you need moré than just good diet......and boosting immune system

The reality is we know very little about how the immune system both inate and adaptive operates. It is extremely complex as anyone with an autoimmune disorder will tell you. There is a lot of research being done now however but we are only scratching the surface. Mast cells are now being studied for their role in cancer which at this point it seems they can either help or hurt but the mechanics  are poorly understood. Researchers are also looking at immunoglobins.  Anyway my point is the immune systems isnt even remotely black and white and these sweeping statments annoy me and they insult those that spend many years study bio chem, biological chemistry and the like. While we are intelligent etc .. if it were that easy to understand this stuff at the level we truly need to, we would all be docs or phds.  

About the immune system:

" ... discovered that leukemia cells produce higher levels of a protein called CD47 than do healthy cells. CD47, he and other scientists found, is also displayed on healthy blood cells; it's a marker that blocks the immune system from destroying them as they circulate. Cancers take advantage of this flag to trick the immune system into ignoring them..."

They have now discovered that this seems to be a trick shared by many cancers, maybe all.

http://news.sciencemag.org/sciencenow/2012/03/one-drug-to-shrink-all-tumors.html?ref=hp

Rdrunner I am fascinated by your experience! I am convinced my BC started in April 2006. That's when my body just suddenly went out of whack. I ended up with severe chronic fatigue (ultimately ended up unable to work), random aches & pains, and a ton of new allergic reactions, some to things I'd never had a problem with, and others to things I couldn't identify, or just vague reactions. I had a lot of blood tests and a saliva test and all my levels were always off, but not consistent with anything obvious... my results were inconsistent/erratic and confusing. None of my doctors, including my naturopath, seem to think there is any connection between my symptoms of the last 7 years, and my recent BC diagnosis, but I feel confident they are somehow linked. I wish I could find someone to help me put the pieces together. I actually feel better (despite recovering from surgery) since my BMX than I've felt in a long time... but I'm afraid to hope I will continue to improve. 

As far as the original question, I feel like I'm one of those people that did everything "right" and shouldn't have gotten BC. I've always been diligent about following a healthy, "clean", whole food, organic, plant-based, natural diet. I was vegetarian for most of my life and vegan for nearly a decade (and not the junk food sort of veg!) I avoided chemicals in my environment... I even made my own toothpaste, household cleaners, etc. and washed my hair with baking soda & apple cider vinegar. I breastfed for over 3 years. I tried lots of supplements, homeopathics, etc., did tons of research, tried whatever was in my means to try. I excercised daily until I got too sick to, and even then tried to at least take walks as much as possible. I'm only 30, but I've been kind of obsessed with being "healthy" since I was a kid. And I still got sick. And then got BC. 

Western medicine has repeatedly failed me. Alternative stuff has also failed me. Nothing I do makes much difference, it seems. I enjoy eating healthy, and probably always will. I imagine I will continue to avoid chemicals & toxins as much as possible. I am not going to suddenly give up my more natural/alternative approach to things. But I am not going to put all my faith in it either. I'm terrified of chemo & Tamoxifen but if there's a chance they could help, I'm taking it. I am still searching to find a balance between allopathic & alternative, but I am learning that for me there WILL need to be some balance, that neither option will provide all that I need to be healthy & whole, that it is now up to me to figure out how to heal myself -- pulling from ALL the resources & treatments available to me.

Indenial and Rdrunner - found your posts fascinating.  I never did anything right, but these things stick in my mind.  I had Mononucleosis twice as an adult and developed chronic fatigue.  I always felt it would lead to cancer if I couldn't get better.  I got all the allergies, hives, etc., too.  But then I did get better.  Move ahead 10 years...had HUGE stress and emotional stuff, in comes a huge tumor and BC.

My father had a similar situation...10 years before his death of pancreatic cancer, he was told he had cancer, they were trying to find the source.  Never could they find the source.  He was put through test after test after test.   He lived healthily for 10 years.  Then he had a major stress event in his live, boom, pancreatic cancer shows itself and he was dead in 3 months.

Can't figure it all out, but know there are connections.

Plus, during Chemo I developed allergies to about everything.  They have since gone away.

I'm taking alternative medicines after chemo...but took nothing during chemo, not even juicing, I was told as it can affect the outcome of chemo.