·By Recovered Patients
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Volunteer Support for Cancer Freshmen by Cancer Graduates
PATIENT PROTOCOL STEP 1
SELECT A WINNING TEAM
INTRODUCTION AND TEAM ROSTER
There are 4 parts to STEP 1, SELECT A WINNING TEAM:
Part 1 - Introduction and team roster, continuing below.
Part 2 - Cancer hospitals, HMO's, and insurance.
Part 3 - RE-selecting a new team after our "terminal" prognosis.
Part 4 - Guide books to find alternative doctors and hospitals
First we want to repeat our special welcome to fellow "terminal" patients.As we paraphrased Mark Twain in the PROTOCOL introduction, the news of our demise was greatly exaggerated. Don't miss Part 3 of STEP 1, where we discuss RE-selecting a winning team after our first doctors ran out of ammunition.
INTRODUCTION, Part 1 of 4
A. Getting started can be the most confusing part of getting well. Feedback from email and other patients has helped us to re-draft Step 1 to make it more useful. We will describe typical plans of action based on experiences of several patients. That may help you to make your own plan.
Do not waste time re-inventing the wheel. We looked for practitioners experienced in treating cancer successfully and for treatments with an established track record. We each found that there already are many successful cancer treatments, both conventional and alternative, if we looked around with an open, but critical mind.
In order to win, we had to insist on a winning team. We do not recommend placing your future in the hands of a single doctor. Or trying to do it yourself.
If you are a religious person then God will be the most important member of your team. If you are not religious, hopefully you already know other paths. If not, this is a good time to find one, because winning is very much an inner game.
B. PARTNER / OMBUDSMAN
The most important person on our winning team was a partner to help manage our campaigns to get well. It takes a lot of work to recover - more than one person can normally handle, especially if you are not feeling well. Often when we were the most tired was when we need the most help. If the patient does do it all, that leaves much less energy for healing, making it counterproductive.
So first of all, we found a partner, and the sooner the better. We left the door open to change later, in case things didn't work out, or the partner burned out. It is a challenging job, requiring strength and tact, compassion and discipline. Your partner may be someone to talk with about options. Ideally they should be skeptical about both conventional and alternative therapy, (since both have their duds) yet open-minded to actual track records.
It could be a spouse, or an outspoken relative or friend, or a knowledgeable consultant you hire. Occasionally an older child has suspended high school temporarily until someone else could be found.
A registered nurse may NOT be a good choice for a partner. Often their indoctrination made them too pessimistic about cancer, and especially about alternative therapy. Also they can be too unquestioning of doctors.
Partner/ombudsman/project manager activities might include:
2. To keep everyone on track - patient, nurses and doctors. For example, the patient must be fasting for certain tests, other tests must be completed before treatments are begun that could change the test results, etc. In a hospital, this can involve double-checking everything - from making sure the sheets get changed when necessary, to reviewing the blood-type before a transfusion.
3. To ask the tough questions, like how many times have you done this before, doctor? What results are you getting? Can we speak with some of these patients?
4. To fight for the desired tests and treatments. The patient must conserve energy and the doctor - patient relationship. See Part 2 on HMO's for tips.
5. To make sure the patient and the ombudsman and the home care provider each get enough Rest and Recreation. Be aware that this adventure can be harder on the caregivers than the patient. Regular attendance at local caregiver support groups can make up for the effort it takes to go there, many times over. On the other hand, caregivers must have regular time away too, preferably daily.
Once we had our partner/campaign manager, things immediately seemed easier.
Our next task was for the two of us to launch our search for a Primary Physician, again leaving the door open to change later.
C. SELECTING THE PROFESSIONALS FOR YOUR TEAM
Intuitively, some of us felt we would be tying one arm behind out back if we excluded either conventional or alternative medicine. Others believed in only conventional or only alternative medicine, until later in their fight, when one turned out to insufficient by itself.
For those who wanted only conventional medicine initially, the task was simplified. In that case, an important tip is to include a doctor who works at a regional Cancer Center. Studies show that the synergism of many cancer specialists working together greatly increases both the safety and the success rate over a single doctor or too small a hospital.
THE PATIENTS' PROTOCOL is flexible about both conventional and alternative schools of medicine. We have seen that it went much easier when there was time to start with the alternative therapy first. This approach built up our health and our immune system, before undergoing the invasive conventional therapies. In those cases where the alternative medicine was sufficient, we were able to avoid invasive therapy entirely.
OUR CHOICES FOR PRIMARY PHYSICIAN INCLUDED:
OPTION 1. Finding a primary physician who knew either conventional or alternative medicine, and would work with both a conventional oncologist, and an alternative oncologist on our team. This was probably our favorite option, since many of us were able to use our family physician to head the team.
A Naturopathic Physician may also be able to fill this role, delegating the actual cancer therapies to the oncologists. Unfortunately there are some phonies out there, so make sure they are board-certified and licensed.
OPTION 2. Finding a primary physician who knew both conventional and alternative cancer medicine. Such qualifications are getting easier to find. On the other hand, sometimes two heads are better than one.
OPTION 3. Finding an accredited hospital which provided physicians experienced in both schools of medicine. This is more convenient, especially for tired patients who find it hard to get around. They may need a few weeks stay for testing, treatments, and training in the therapy. Some of these hospitals are international. Better insurance policies may cover the standard costs in licensed international hospitals. It can seem expensive if the patient pays out-of-pocket, (which many of us did) but actually total costs are usually far less for alternative therapy than full conventional cancer therapy.
Smaller clinics were used for more limited parts of our therapies such as nutrition, or detoxification or immunotherapy.
Much of this is technically possible on an out-patient basis, provided someone else can drive the patient to and from treatments.
On the other hand, some us were so ill we had to be stabilized at one hospital for a while, before we could undergo specialized therapy at another hospital.
Sometimes we had two "primary physicians." one for conventional medicine and one for alternative medicine. In most cases doctors have been very interested in the opportunity to work together and learn each other's techniques. But they do like to be discreet.
Your primary physician can:
The chart below lists some of the places where we found our primary physicians.
HERE'S ONE REQUIREMENT WE ALL AGREE ON:
A conventional oncologist must already have experience treating cancer successfully and have a track record to prove it. Ask about actual results and statistics for your case. (Some conventional treatments do not really help!) Ask to talk with their recovered patients.
An alternative oncologist must already have experience treating cancer successfully and have a track record to prove it. Ask about actual results and statistics for your case. (Some alternative treatments do not really help!) Ask to talk with their recovered patients.
Typically the patient selects team players by visiting candidates for "second opinions." A referral from another doctor may be required for some specialists. Often this can be verbal, "Dr. Jones referred me to you." In making appointments, explain that you have just been diagnosed with cancer and you would like an urgent appointment to ask the doctor for his opinion about what to do. This should take you to the head of the line. If it doesn't, that may be the wrong doctor anyway.
In meeting with doctors the first time, explain your ideas. If you want to strengthen your immune system before risking a biopsy, discuss this with the doctor. Be sure to ask for an opinion on how much time you have to explore options. Of course, see what course of action each doctor recommends. Always ask about statistics for other cases like yours, compared to other options and compared to doing nothing, which is sometimes the best choice.
Let's walk through the "second opinion" process. Many initial second opinions are wasted opportunities. Patients just go to another doctor with the same training and same background. Almost always they end up getting the same opinion for the second time. This can give them a false sense of security, but it is not what we would consider a particularly useful second opinion for this stage.
What we needed for a second opinion initially was another option, so we would have a choice of treatments. The time to focus the second opinion process on the same option is later, after we have made the choice of what option to try and now are trying to select which practitioner of that option we want on our team.
For example, in the case of heart disease, modern hospitals and modern insurance companies now offer heart patients the options of undergoing a bypass operation or reversing the heart disease by diet and lifestyle programs. If the patient keeps asking surgeons for second opinions, they are most likely to all recommend surgery. Only by asking someone with a different perspective are they likely to lean about the reversal programs available now days.
Here's a typical example of how things work in cancer, drawn from our actual combined experiences with prostate cancers in the years between 1980 and 2000. Prostate cancer is a little unique, and that's why we choose it for this example. Most prostate cancers are tiny and grow very slowly. Studies show that over 85% of cancer patients will die of something else before they have any symptoms at all from their prostate cancer. Most expert panels, government and private, recommend NO treatment for these patients, because the serious side-effects of treatments are far worse than the disease. They include impotence, urinary incontinence, fecal incontinence, infections, rare deaths, etc.
Instead experts recommend "Watchful Waiting." Watchful means they should have regular check-ups to make sure they don't slip over into that other group, under 15%, who do develop medically threatening, aggressive tumors. If they do, then prompt medical intervention is definitely recommended.
Let's say John Doe, our combined-experiences patient, has been informed by his urologist that his tests have come back positive and he has prostate cancer. For the first time John hears a refrain common among urologist/surgeons, " If it were me, I'd get that thing out of there right away." John is still sitting there between daze and panic, but his wife Jane asks about getting a second opinion. "Sure, I can recommend a urologist who has 10 years more experience than I do. I'll give you a referral."
Sounds good, but almost inevitably, the second opinion from another urologist/surgeon comes back recommending the same thing - surgery. That would be an example of getting one opinion, a second time.
Some of us were lucky enough to be told by our urologist about "watchful waiting." That gave us time to shop around for the kind of second opinions we needed at this stage - other options.
For each option, we always asked about track records. This can be a big advantage of conventional medicine. They have to develop hard statistics to get FDA approval, and you are supposed to be given the expected results under full-disclosure ethics guidelines. So an FDA approval of that specific treatment indicates it should prolong survival time for that specific cancer, on average.
LAPSE IN MEDICAL ETHICS?
However many of us learned the hard way about a tragic waiver of medical ethics permitted only when treating cancer patients. It appears that these treatments are then allowed to be used for other cancers where they failed to earn the FDA approval, even when their track record says they just make things worse or shorten survival time!
The policy that permits what we consider unethical behavior, claims to be allowing it for "research" and to prevent patients from going to "charlatans." Apparently that includes competitive international hospitals and alternative therapies that helped so many of us to get well.
In actual practice, we were never told about this, so the patient had to bring up the important question at each second opinion appointment:
"How will this treatment affect my survival time
and quality of life
compared to the other options,
including doing nothing at all. "
When we went to oncologists specializing in chemotherapy, chemotherapy is what was usually recommended. Radiologist usually recommended radiation. Very rarely did any of them recommend what the expert panels say they should recommend for regular prostate cancer - watchful waiting.
According to the physicians' treatment reference manual, CLINICAL EVIDENCE for the year 2000, there are no "gold standard" randomized clinical trials that show a positive benefit in survival time for surgery, chemotherapy or radiation in cases of regular, non-metastsized prostate cancer.
All of those treatments can reduce quality of life significantly and unnecessarily for the rest of the patient' life. John and Jane didn't like any of the options so far because of the side effects they had read about by now. They continued looking at more second opinions. In cancer support groups they got second opinions (other options) from recovered patients.
John and Jane had always assumed that conventional therapy would provide everything they needed. But the side effects of conventional therapy and these living success stories led them to look into the alternative therapy option.
Initially John and Jane had used second opinions to figure out options and to find new ones. Once they decided to try the alternative therapy option, they used second opinions to decide which practitioner to use for that option. So second opinions can be used two different ways at these two different stages.
They interviewed a famous woman author on alternative cancer therapy. She offered a vague diet, anti-parasite herbs and electrical zappers, which she claimed to kill only cancer cells, but not the surrounding immune system or healthy cells. It sounded too good to be true. She was unable to produce a track record to prove that it was. Saddest of all - she wasn't able to provide John and Jane with recovered patients to talk to. No wonder she is considered to be a fraud by legitimate alternative cancer doctors. No wonder conventional doctors are so skeptical about alternative therapy.
Another practitioner was in an alternative hospital that offered some very powerful high-tech diagnostics and therapies. But they included meat and eggs in their meals "because the patients want it" and they didn't do detoxification "because patients don't like enemas." It sounded half-hearted, and had a weak track record to prove it.
John and Jane found a couple of international hospitals that included serious IV infusions of laetrile, vitamin C, potassium, etc., along with a Gerson-type vegetarian diet, juices, and more medical procedures, including conventional medicine if it should be required. Their track records were really impressive, including thousands of recovered "terminal" patients. John and Jane decided these hospitals would be great if the cancer were out of control, but for now it seemed like too much power for a small, slow-growing tumor like prostate.
Then they found a couple of smaller practitioners who had long track records. They only provided vegan meals and education, juices and detoxification, but little in the way of additional immune system therapy or serious medical procedures. "You will be pleasantly surprised by what this diet will do for your immune system. If you need more, you can always add it later. Basically we teach nutrition - a vegan diet, as raw as possible - which many nutritionists believe is best for reversing cancer."
There seemed to be no down side to starting so conservatively in John's case, since he was doing "watchful waiting." The price was right. So they consulted with their family doctor about these nutritional options.
Of course he didn't know enough about either one to recommend it, but he agreed to monitor John's progress. He noted that vegetarian diets were reported to be very helpful for cancer, and that it might be a great opportunity for John to loose some of that extra weight. Like most of us when we were meat eaters, the doctor worried about protein. "It might be good therapy to starve a tumor, but not for too long," he cautioned. He suggested John come back after a month on the program to see how he's doing, and to come back earlier if he felt too weak or spacey.
Jane decided she could loose a little weight too, so she decided to come along. After all, a little extra health never hurts, and as a companion, she got a special rate.
Each patient's situation is unique, and what is appropriate for one patient is not necessarily good for another. We hope this combined example of many of our experiences will help to illuminate the path to getting started.
Be sensitive to your conventional doctor's professional constraints. Do not expect conventional doctors to believe that alternative therapy will cure cancer and do not ask them to try to use it for treating cancer. In many cases, there are medical association or governmental pressures to stick with conventional therapy. Instead, we let our doctors know that we wanted to get healthier and make our immune system stronger before undertaking invasive therapies. That is something they are permitted to do. If the tumor shrinks, they will be pleased. If it goes away, that speaks for itself.
As one doctor later warned a patient who reversed his cancer, "Better be careful. You might make me a believer."
If patients do want to use alternative therapy, it is essential that all doctors be informed about it. If they object, hear them out. There are definite possibilities of conflicts in treatments. Often they are solved simply by scheduling treatments farther apart to avoid canceling each other.
But if the doctor is just being closed-minded about alternative therapy, you want to find out early. A good team needs team players. It is becoming more rare to run into a doctor who refuses to cooperate with doctors from other schools of medicine. When we did, we just explained that we didn't want to foreclose our other options at this time, but we would be glad to let them know how it turned out when it is over.
D. OTHER PROFESSIONALS FOR THE TEAM.
1. SPECIALIST FOR OUR CANCER SITE. A gynecologist or urologist, for example, may be a valuable team member. However, they may not be the best choice for primary physician, who's job is to worry about your total health. They may be experienced enough in cancer to do the job of the oncologist in some cases.
2. ONCOLOGIST / HEMATOLOGIST. This is a cancer specialist. Some of us selected an American oncologist to provide conventional testing, even if we wanted to postpone invasive treatments until later. And then we added an international oncologist, who could provide treatments not yet available in America.
Oncologists can be helpful for diagnosis and for scientific monitoring of the recovery. The oncologist is more critical in conventional therapy where they can help to weigh the more serious risks and benefits before facing invasive therapies. They may be the best qualified to evaluate blood tests, but in many cases, any doctor can understand the results. If chemotherapy becomes necessary, that is a specialty of oncologists.
3. PATHOLOGIST. They perform many of the advanced tests and in particular, grade biopsies. In alternative therapy, biopsies are often postponed until just before invasive therapy for several reasons, including a small risk of spreading cancer cells. More reasons for postponing unnecessary biopsies will be discussed under PROTOCOL STEP 2, TESTING.
A John's Hopkins study has found that up to 20% of biopsies are read incorrectly the first time. Over the years, it appears to us that about 30% of all medical test results are wrong for various reasons, beginning with the patient ("Of course I was fasting. All I had was a few cups of coffee.") This will be covered under TESTING. But the point here is that we think it wise to consider a second evaluation from another pathologist or lab specializing in your condition, before making any major decisions about invasive therapy. Other conditions can be confused with cancer, even in a biopsy.
So another "member" of your team might be a web site like www.FindCancerExperts.com. They provide free referrals to specialized pathologists for that kind of second opinion.
4. NUTRITIONIST. Even if you have an alternative physician or cancer hospital, a nutritionist may be necessary. This is not a hospital dietician whose view of nutrition may be limited to balanced meals and a few special diets. Nor a well-meaning clerk at the local vitamin store.
This is someone who knows how to heal with nutrition - particularly how to help cancer patients. Usually they also know about herbs, which are very powerful tools in fighting cancer. As always, ask about track record and results. And ask if they have recovered cancer patients to talk to.
5. PSYCHOLOGIST. Consider professional help when it comes to designing a new life style. Be wary of psychiatrists who may look for a quick chemical fix. There is not a lot of hard science in this field, and some specialties, such as Freudian psychoanalysis reportedly may make you worse. Cognitive therapy is the most scientifically tested, and proven to get results, especially in areas such as depression. It works much faster than most psychological therapies. ( PROTOCOL Step 5, Lifestyles, will discuss this further.)
6. IMMUNOLOGIST. If you have trouble stimulating your immune system in STEP 7, you may need an immunologist to analyze it in detail for abnormalities. Once the problem is identified, if the immunologist can't fix the problem with drugs, an alternative practitioner may be able to fix it with herbs and nutrients.
7. DENTIST. Dental infections in root canals or cavities must be cleared up if the immune system is to concentrate on eliminating the cancer. This can be very important. Dental infections are reported to release powerful carcinogens. We do NOT recommend having mercury fillings removed at this time, unless scientific tests show they are leaking significantly, and depressing the immune system. It takes an experienced specialist to do it without INCREASING your current level of mercury.
8.MANY OTHER healthcare providers can help, from acupuncturists for pain, to zen teachers for tranquility, but it's unlikely they will cure your cancer. Homeopathic doctors are not likely to have a role in fighting cancer either, but may be able to help with other problems. Such alternative therapies are not cancer therapies, and should not be allowed to get in the way.
E. HOME-CARE PROVIDER
For an outpatient, or an inpatient returning home for further recuperation, help is usually needed. Just the new diet - finding sources, shopping, meal preparation and hourly juicing - is usually too much work for a patient alone.
Sometimes the ombudsman also takes on this job. Do not be afraid to admit it, if both jobs turn out to be too much for one person.
A home-care provider can supply some of the energy and enthusiasm any patient needs to get well. But if the provider is fearful or skeptical, they can be a very real threat to the patient's recovery and we think they must be replaced promptly.
Be careful of brainwashed RN's and other visitors who may transmit powerful negative doubts. Patients who flourished in alternative environments and came home cancer-free, have withered and died from something else under the daily skepticism of non-believers, including well-meaning relatives.
Misguided relatives flew in at great expense to see a patient already declared "terminal" at a conventional hospital. They wanted to save her from alternative doctors, all of whom they believed to be quacks. That was one hell of a family fight. But the patient and her partner held firm, and in six months the "quacks" saved her life.
F. REGULAR SOCIAL SUPPORT
We are social animals and we need to keep up our social contacts to be healthy. Patients can't expect caregivers to shoulder the whole burden. Many of us were shocked at how many friends and relatives disappeared once they heard about our cancer diagnosis. Never the less, seek out some for your team who will at least ask you how you are doing, and really let you tell them. Maybe they can help in other ways such as driving to the doctor or fixing a meal, or relieving another member of your team a few hours a week.
We all knew that support groups were very, very helpful to us. But even we were surprised by the hard scientific studies that showed they can have just as much influence on survival time as the treatments! Support can double your chances, so don't miss this bet. Hopefully you can find a cancer support group that is open minded about both conventional and alternative therapy. Otherwise you could try a vegetarian support group, a church support group, or whatever, just so you really get a chance to share problems and solutions with others. It takes about 3 visits to get comfortable and decide if you are compatible. Once you find a group you like, attend regularly, as they will be looking forward to seeing you.
Thank you for the feedback that helped us re-write this page. We hope these new examples of how we built a winning team will help others to win at cancer too. But don't stop now. Please email more comments, suggestions and success stories, etc., to:
END OF Part 1 of STEP 1
To continue with Part 2 of STEP 1, about Hospitals, HMO's and Insurance, click on "Next Page" below.
PATIENTS NATIONAL CANCER INSTITUTE
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