Breastcancerchoices.org |
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| Scrutinizing the evidence for breast cancer procedures and treatments |
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One defining question arose from our mission, a question which had been avoided when most of us were diagnosed because we were swept along in our treatment: How will any procedure or treatment my doctor recommends extend my overall survival and at what cost to my quality of life? |
Where did these FAQ come from?
From pro-active, research-oriented patients in an online group
who decided to bring all the essential information they'd compiled
over the years to one place.
- Why? There was a need. This information doesn't exist any place else.
- Why? Patients do not receive full disclosure on the procedures and
- treatment they receive.
How did they research the FAQ?
1. By asking fresh questions about the pros and cons of standard treatment.
2. By going to the source for answers, the National Library of Medicine's
Medline Database, then laying out the information, thousands of articles,
from the existing medical literature, then winnowing them down. By
challenging our assumptions, then researching even more.
3. After 16 years of accumulating scientific information and factoring in over
a thousand patients' experiences, a body of FAQ emerged. We found ourselves
reexamining the current way of looking at breast cancer diagnosis and treatment.
If we had asked that question in the orange box on the left side of this page most of
us would have made different screening and treatment choices.
What Does Breast Cancer Choices Mean?
The concept of "choices" encourages women to consider all their options. Breast
Cancer Choices offers an alternate way to approach the whole process of being
diagnosed and treated for breast cancer by asking questions and reviewing the
available information with your doctor. We don't advocate any specific treatment.
Conventional medicine has some statistical success with certain cancers such as
testicular cancer (Lance Armstrong) and the blood cancers. Unfortunately, with
breast cancer, mainstream medicine has a poor track record. The currently
prescribed toxic adjuvant therapies have minimal, if any, "overall survival" value.
If the survival statistics had improved from 50 years ago there would be no need to
discuss options in breast cancer therapies.
We look forward to a time when conventional medicine gets better results and
there won’t be a need for a question-based site like this. The main goal of Breast
Cancer Choices is to put ourselves out of business.
If your physician is well-versed in the literature, she will be able to tell you what
these particular statistics are without blinking.
How is breastcancerchoices.org different from all the other breast cancer
websites?
Breastcancerchoices.org is a question-driven resource site. We are committed to
scrutinizing information given to breast cancer patients. The information here relies
heavily on the veteran patients from an online group who raised questions and
researched the answers. But the questioning continues. Some patients choose not
to take radiation therapy, chemotherapy or have lymph node procedures. This site
begins the dialogue and documents the reasoning behind those non-standard
choices.
Please note, the Breast Cancer Choices scrutinizes non-standard medicine as
carefully as it does conventional medicine. We don't support any conspiracy
theories about "Big Pharma" or "natural is always better." We are not "pro"
alternative medicine or "pro" conventional medicine. We are only "pro" scrutinizing
the facts. The facts speak for themselves.
- Also, as veteran breast cancer patients, we’ve all made mistakes along the way in
the procedures we went along with. Hopefully, visitors to this site can learn from
our mistakes and will benefit from the information many of us learned after the
damage was done.
Since 1996, when the online discussion group began, many of the same questions
came up in discussion every few months as newly diagnosed patients signed on.
We tried to answer them by researching the medical literature and posting it to the
group. Although most of our stockpiled studies answered the questions, new ones
kept appearing so we needed an efficient, easy to use place to keep all the
questions, documented answers and the medical studies.
But, more disturbingly, we realized some important questions almost never came up
because we never thought to ask or we believed the answers we were given. Only
through time and more research did we realize that these needed their place too.
That’s why questions are the centerpiece of this site.
Where do I start researching?
There is no one place to begin researching. Each person has a slightly different
attitude about research. Some love the sleuthing out of new information and
verifying its value. Others find sources they respect (such as certain health care
practitioners) for information and follow that course. This website houses links and
resources to accompany your fact-finding journey.
While researching, you might want to join several of the online breast cancer
communities, email groups or bulletin boards and find one that fits your personality.
Beware of "sound off" groups where the participants make claims without supporting
facts.
If you have the inclination, reading actual studies may provide you with information
as well as confidence in your choices. This can be easily learned.
- Who am I to question my doctor's suggestions (that I have radiation therapy,
take chemo or use hormone blockers) ?
You are the one whose very life and quality of life are at stake. You are an authority
on your own peace of mind that you are getting the facts.
What about my doctor’s place in my research?
Often patients don’t tell their doctors about their non-standard research or intentions.
This is not a good idea because she may alter her treatment decisions based on your
choices. For example, if you give your surgeon The Lancet radiation statistics article
and say you’ve decided against radiotherapy, she would most likely cut out a little
wider piece of tissue on the assumption radiation would have “sterilized” any cancer
cell colonies she might miss in a smaller section surgery. You should also tell your
doctor what herbs and supplements you are taking,(keeping in mind some may say
they don’t want to know), because some herbs and supplements may increase the
chance of bleeding after surgery.
Does my doctor know about the medical studies posted on this website?
Most doctors are too busy treating patients to evaluate the most recent literature. A
breast surgeon may see 30 patients a day. That’s 60 breasts to examine, charts to
note,staff to supervise. Then there’s surgery days, hospital visits, phone calls, and a
life outside the office. Plus, if the doctor knew about the new information, she might
have to change the way she practices and the average doctor wants to fit in with the
standards practiced by her colleagues, not stand out by pursuing innovation or new
literature. Standing out means trouble.
Essentially, doctors are afraid of you dying while under their care because you don’t
go through the standard breast cancer treatment mill. They’re afraid of getting sued
for departing from the medical community’s standard of care. If you go through that
standard of care and die anyway, they’re safe.
So when you consider that your doctor’s life is too busy to read much, and their
standing in the medical community is too fragile to stray from the herd, you may get a
doctor who is not on close terms with the medical literature. Also, they may not be
used to reading actual studies. Doctors subscribe to online news services that give
them the pre-digested medical news which often gives them the wrong kinds of
statistics. See The One Thing You Should Know About Statistics
The actual studies have only been widely available from the Internet Medline
Database of The National Library of Medicine for fifteen years. So when your doctor
went to medical school, patients weren’t able to learn the way they do now.
The way to tell a good doctor from a poor doctor is the way they treat the information
you bring to the patient-doctor consultation.
It gets back to the premise of this website. In the real world, only a patient has the
true motivation to read and ask questions. Because her life depends on it.
What do you recommend as treatment?
We make no treatment recommendations whatsoever. We suggest breast cancer
patients carefully research and review the evidence for any treatments they are
advised to undergo, whether they are standard or non-standard, then make
educated choices.
This website contains some of the official medical literature your doctors have access
to but may not have seen. Of special interest is the literature on needle biopsies,
lymph node procedures, radiation therapy and chemotherapy.
What recommendations do you make?
Read, then read more. Question, then question more.
- But I'm already overwhelmed with information. What do I do? My doctor's plan
for me was so simple compared to the scrutinizing approach you suggest.
We are preparing a web page to help with this problem.
Stay tuned for, Overwhelmed?
- What integrative protocols may be helpful?
Complementary Medicine, also known as Integrative Medicine, involves combining
conventional and non-standard treatments. Which combination of these a patient
may or may not choose is strictly up to the individual and her practitioner. If you
have a specific question, such as whether Tamoxifen is beneficial or necessary,
we can’t answer that.
- These statements have not been evaluated by the U.S. Food & Drug Administration. The information discussed is not
intended to diagnose, treat, cure, or prevent any disease.
This website is intended as information only. The editors of this site are not medically-trained.
Please consult your licensed health care practitioner before implementing any health strategy.
The information provided on this site is designed to support, not replace, the relationship that
exists between a patient/site visitor and his/her existing physician. This site accepts no
advertising. Contents of this site copyrighted 2004-2010 by Breast Cancer Choices, Inc., a 501 (c) (3) Nonprofit Organization.
Contact us with comments or for reprint permission at admin@breastcancerchoices.org
Web page updated July 13, 2010.
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| General FAQ |
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| Who am I to question my doctor's suggestions? |
| The person whose life is at stake gets to ask questions of anybody. |
Take notes at every practitioner visit. Have a friend or family member there to take notes separately since patients may be concentrating on the interview and miss details. |
