Relative risk v. Absolute Risk in decision-making

Here is a simpler explanation that does not suggest that mammograms are of no benefit:

http://www.breastcancer.org/treatment/planning/understand_risk.jsp 

One good example is tamoxifen vs an AI. The relative difference is something like 30-40%. The absolute difference is 3-4%.

If you can't take the SE of the AI or if you are paying and it's breaking the bank tamoxifen is a just about as good alternative.

Drug companies like to advertise relative differences because it make their newer and still under patent drugs looks much better. Another good indicator, that I don't have a good example of is "numbers needed to treat". That's how many people must take a drug for how long to prevent one person from getting whatever the drug is intended to prevent.

Alyad, I understand exactly where you are coming from. It sounds like you are early in the diagnostic/treatment process. I had very similar feelings when I was at that stage too.

I read and researched quite extensively, various treatments. I bombarded my oncologist with questions. He is a patient man and always answered my questions.

Early on, I had no basis on which to trust him, and this is why I was prompted to do so much research. I needed to understand everything I could. 

What I discovered along the way was that my onc. could be trusted. His judgment about my breast cancer was exact. He chose the perfect treatment. My cancer responded dramatically. He earned my complete trust.

I do not believe there are a vast number of doctors who are purely motivated by compassion, who are at the height of their "game" in their knowledge, who are gifted diagnosticians, who have vast amounts of patience, who exemplify everything you want in a doctor. I got very lucky in that regard. Many oncologists are condescending, have limited patience, are somewhat closed to new thinking, they can be arrogant and some are completely devoid of compassion. 

It is critically important to find the best oncologist out there. It allays so much of the fear and indecision. You must find someone you trust. That's the most important advice I can give.

Without their level of knowledge of oncology, it is foolhardy to rely on the limited information available to make one's own treatment decisions.

Knowledge is a good thing. Provided you have knowledge.

Many people mistake pseudo-medical babble for knowledge, and are swayed by hucksters peddling false remedies.

Odd to recommend not trusting one's oncologist. What knowledge is that based on?

Althea, there is a wise saying that goes: the plural of anecdote is not data.

Did Susan Komen have a bad doctor? If so, that is unfortunate. But some good came out of it, after all, eh? Still, you have no way of knowing that her outcome would have been different with the finest doctor on the planet. Outcome is never entirely predictable.

But the odds are stacked against those who choose to rely on quack remedies as opposed to what you call "mainstream medicine" (and the rest of the world calls "medicine"). Proponents of alternative remedies should be able to defend the worth of this approach with objective data. Until then, it remains uproven and risky for those with early stage disease.  This is not the Stage 4 forum, so most women with early stage disease should be looking hard at the proven benefits of chemo, surgery, and radiation as recommended by their doctors. And as I have said numerous times, choice of doctor is critical. 

Stage 1/2/3 gets to Stage 4 in many ways.

Some women delay their conventional treatment while wasting time researching alternatives. By the time they start conventional treatment, the tumors have metastasized.

Some women choose not to get conventional treatment at all. Virtually all of these women will end up at Stage 4.

Some women rely upon unproven alternative remedies DURING conventional treatment without understanding the impact on that conventional treatment. Many so-called alternative remedies (one HUGE example is antioxidants) inhibit the action of chemotherapy and radiation. They compromise the efficacy of the conventional treatments, allowing cancer to continue to thrive. So-called naturopaths and homeopaths and whatever other names they go by don't know this since most of them lack medical degrees or any other formal study in pharmaceuticals and biochemistry.

Some women are prescribed incorrect treatments. It is important to do research and ask the doctor questions. If there are unsatisfactory answers, a second opinion should be sought. I never advocate blindly accepting any doctor's advice.

Some women are misdiagnosed. I know of a woman who was diagnosed with DCIS. She might have opted to treat it alternatively, but she chose to follow a conventional route. When they went to remove the DCIS surgically, they found invasive cancer cells. Thank god she opted for conventional treatment ... a different choice might have cost her her life.

Some women choose not to follow important advice on lifestyle/general health changes. If you continue to be obese, the extra fat creates extra estrogen. For the 3 out of 4 women who are estrogen-positive, this is a bad thing according to numerous large studies. Some women refuse to exercise, and claim they just don't have time, have other health issues, whatever. Exercise has been shown in numerous studies to reduce recurrence and to keep the immune system healthy and active. There are many ways to reduce risk.

And finally, the fact that a cancer recurs is not an indictment of the failure of conventional medicine. Conventional medicine does not claim it can cure breast cancer, only that following a proven treatment plan offers the best chance of long-term remission. But it is still not a guarantee. Some women are going to recur, and some are going to die. Cancer is a vicious disease. A vicious disease must be fought with tools that are up to the challenge. 

It is not rational to choose alternative treatments in early stage disease over conventional treatment. There is no burden of proof in alternative treatments. No  burden to prove it works. To offer rates of recurrence. To provide a list of side effects. There is no dosage that has been established in large randomized clinical trials. It's all guesswork for dosage, and a crapshoot for efficacy. Is that what you want to stake your life on? If so, then I'd say natural selection is at work.

Many, perhaps most clinical trials are ineffective. If any trial manager promises that something is going to work, then run away, run away quickly. However, every effective and proven treatment that we have that works, got to market because courageous women volunteered to participate in the clinical trials. I consider these women true heroes. And I consider the medical researchers who toil every day to find new cures to be heroes too. If my cancer returns, and if I am ever at Stage 4 myself, I will find whatever valid clinical trial I can qualify for and volunteer. I owe that to future generations, just as the women who volunteered for Adriamycin, Cytoxan, Taxol, Herceptin, and Radiation trials paid it forward for me to benefit from these treatments.

40 million? What is that number supposed to represent?

Bitterness is a sad way to live.

I am stage I, totally follow and believe my oncologist, and also see a naturopathic doctor at a Cancer  Treatment and Wellness Center.  The naturopatic doc DID prescribe a lot of vitamin/minerals but also told me to stop 2 weeks before starting chemotherapy if I needed chemo (I saw her as soon as I was diagnosed).  I think these is a place for both, but like all things one has to be very choosy on who to see.  This naturopathic clinic is cancer only, and has oncologists on staff (not that I see).  I am interested in their take on the supplements/vitamin side, not oncology side but really appreciate that they GET cancer and APPROVE of the standard treatment set out by my team at Seattle Cancer Care America (part of Fred Hutchinson).  My naturopathic also approves of tamoxifen in er/pr+ cases.

The naturopathic doctor totally approves of the chemotherapy.  Not her specialty - she will support my dietary and nutritional interests as a cancer patient, and now as a chemo patient.

I do know a woman, who had Stage 1, IDC, 1cm, er/pr+ and her2-.  Just like me.  She had a lumpectomy with radiation, but her oncologist left chemo up to her, and she declined.  She figured she had negative nodes, why do the poison. They did not oncotype it (this was 2 years ago, and she doesn' t know why oncotyping wasn't offered). She also declined Tamoxifen.  She chose all alternative, did supplements and a vitamin C infusion (I have never heard of that) and lost 50 pounds.  Recently, she broke her tailbone - stage 4.

She is doing well, had her tailbone radiated and is doing chemo.  She has been an inspiration to me.  

That is why I am so happy my tumor was oncotyped, showed high intermediate and I am doing chemo.  I love this board, and this thread (when we are all nice!!!!) because I do think both conventional and naturopathic treatments can go hand in hand.  I would NEVER do all alternative treatment - just goes against my education and all of the physicians in my family.  But, I have an open mind.  I would NEVER chose to disregard my oncologist - I may argue, and question the studies she is citing, but this is her world that she knows and has been working to fight cancer for 20 years.  I just started.

I find it fascinating that antioxidents are a no-no during chemo - must mean they do work.  

I also think that diet and exercise are really important, but there has to be something else - environmental, or something that contributes to BC.  I truly have none of the risk factors, and I know many of us don't.  (okay,  I could lose 20 pounds, but my BMI is within normal). Yet here we are.

Stage 1 does go to Stage 4.  That is what has me on this thread - so I can learn how to stay at Stage 1.

Um, that would be about 40 thousand in the US, and about 500 thousand worldwide. But that's not bad. You only missed by 39, 500, 000.

anomdenet:

Indeed, chemotherapy is possibly the most dangerous quackery that mainstream medicine has come up with. It is absolutely outrageous; you are right: chemotherapy is not evidence-based at all; otherwise, they would not have discovered after 20 long years that it does not work for ER+ tumors. I suspect that it does not work for any tumor, for that matter, if they would only use ABSOLUTE statistics instead of the relative ones that they keep on using, but they cannot say that: they would get a lawsuit in the millions of trillions of dollars.

If you look closely, a drug does not have not "work" for more than a limited number of patients (in ABSOLUTE terms) to be called a "life saver." A large number of those drugs will extend life by 2-3 months at best, at the cost of quality of life (not to mention skyroketting insurance costs). Such drugs have been banned in Europe.

It is the sad truth that when a patient reaches the point where he or she "needs" chemotherapy, that means the end of life.

Problem is: a lot of women are mislead the same way I was: I had never been a cancer patient in my life before my diagnosis. I had never even thought of cancer as a possibility for me (doesn't cancer only happen to others?). So I was numb with the news that my biopsy had come back positive. It hit me like a ton of bricks. And that's the case for a countless number of other women.

 ..............................So I got trotted into chemotherapy before I could start gathering my strength to do any kind of research. It is only after several rounds of poisoning that I realized that it did not add up. So I started moving. Doing my own research. Questioning. Looking around. Thinking. Reasoning. And finally, I set up an appointment with another highly respected oncologist here in my area.....................And I found out from him, that my "benefit" for what I had been put through is between 0 and 2 percent. At best.

That truly is great - I'm happy for you!  Everyone should feel their tumors dissolving - Now let these other women get the same relief what ever way they need!  This is exactly what I was speaking about - again a great example of projection - you are amazingly happy with YOUR choice and won't allow other's the same freedom of choice.. PROJECTION - 2 weeks old??  I don't think so...  Please stop attacking. 

Well I guess like all defense mech. you can't see it..  

Timothy,

Chemo seems to work better on the more agressive subtypes of BC. Like ER- or Her2+.

Not to say that all ER+ woman have NOT benefited. I have read a couple of articles myself. I myself am an example . Im what they call Triple Positive, ER+Pr+and Her2+. My tumor was 8cm before my chemo, at the time of sugery there was 1cm tumor + DCIS left. Now, was my response to chemo from being Her2+? I'll never know, because of my ER status.

And yes the purpose of neo adjuvant chemo is to kill / shrink the tumor so it is easier to remove come surgery. They base your wifes prognosis at what they find at surgery.Ex. how much did the tumor shrink, lyph nodes, clear margins ect...

LOL...

Timothy,

I guess I'll chime in here to say chemo did work on my ER+ tumor. My neoadjuvant chemo shrank what was measured by PET/CT to be a 6cm+ tumor to less than 2cm after surgically removed. I had 4 doses of TAC before surgery, and two more afterwards.

Complete pathological response is usually not the case with neoadjuvant chemo and is not expected. As lexislove says, the purpose is to shrink it to make complete removal easier. But Yazmin, you have to admit shrinking it more than 2/3 is not exactly not responsive. Chemo isn't the complete answer; it won't completely remove cancer, ER+ or otherwise (no part of the current solution is complete unto itself). But it certainly seems to be an integral part of the solution.