Molecular
Targeted TherapyThe Cancer-Team Concept
Treating cancer in the most "cutting edge" manner requires a TEAM: in addition to the cutting edge Oncologist, there will be appearances made by any number of specialists.
The premiere cancer treatment facility in the USA, M.D. Anderson in Houston, uses the Cancer-Team approach. Although the various specialists are not themselves Oncologists, the only disease that those specialists treat is cancer, and they all work together as a team under the guidance of the Oncologist to be certain that everyone is on the same page. For example: it would make no sense if the Oncologist were to make use of new drugs that might extend the patient's life, only to have the heart specialist independently decide that now is the time to "let the patient go" based on knowing only about how things are typically done under the FDA Standard Protocol. The M.D. Anderson "team" is involved from the very beginning --- a prospective patient doesn't just meet with an Oncologist, but is examined by all "team members." Then the entire team works out the plan of attack that seems best suited to the needs of that individual. That approach, however, is not typically how cancer is treated elsewhere.
At almost all other hospital facilities treating cancer, the patient essentially has an Oncologist who decides which treatment protocol to use, and that Oncologist then brings in specialists from the other hospital departments as necessary. These specialists, however, are not focused exclusively on cancer patients; nor is there an ongoing "teamwork" approach. The specialist comes in, is told the situation, and does what seems to be called for. These specialists likely have very little in-depth knowledge of current cancer trends and research (most Oncologists have a hard-enough time keeping up with new developments, let alone the specialists not dedicated to Oncology), and would know next to nothing about Molecular Targeted Treatment --- and how this new 21st century protocol might alter the traditionally accepted "odds" of patient survival. After all, it is the goal of Molecular Targeted Treatment to render late stage lung and other cancers a manageable chronic illness, rather than an always fatal disease.
With the exception of a facility such as M.D. Anderson, it is unavoidable that the specialists brought in to momentarily treat a cancer patient in a hospital will generally be of the "old" way of thinking (identical to the thought process of an Oncologist who still uses the outdated FDA Standard Protocol to treat cancer ... which is most Oncologists). The basic philosophy is that a late stage cancer patient has a limited time left to live, and as such the doctor should not make heroic efforts to extend a patient's life if it just places the patient in ongoing pain, when the patient should be as comfortable as possible during the limited time left to them. This is called the "quality of life" issue. This is the prevailing thinking regardless of the patient's age, or how much the patient expresses their desire to try "everything."
But what of a cutting-edge Oncologist endeavoring to practice the first generation of Targeted Therapy within a conventional hospital setting? How well will the patient be served when specialists, who do not really understand the nature of this new protocol, are required to momentarily come on-board?
Cancer is aggressive. The entire team involved in treating a patient receiving early incarnations of Molecular Targeted Therapy must also be aggressive. A chain is only as strong as the weakest link. When a patient is a pioneer undergoing Molecular Targeted Therapy, as Cecily was, the commonly accepted practice of under-treating a "late stage" cancer patient on the grounds of "compassion" is simply not acceptable. Only the Oncologist is in a position to make ultimate life and death judgments, yet in a conventional hospital setting today, the "team" is a patchwork and many individual and differing philosophies of "compassion" may tend to be silently invoked in determining how aggressively to keep fighting. And surely it is up to the patient to determine just how much of that sort of "compassion" they'd like --- especially if they are hit by an illness at a very young age.
By way of example, Cecily said to her last breath that she wanted the most aggressive treatment possible, and would endure any amount of suffering to have a shot at being one of the few today who are long-term survivors of lung cancer. At only age 45 when diagnosed, a year (or even more) of possible hell was worth it to Cecily for a shot at a longer-than-typical future with her baby --- we often talked about the fact that the upcoming 2004 was simply going to be a very unpleasant year with a great deal of physical and emotional pain; Cec just accepted that as a fait accompli. That's the path that Cec wanted to pursue; the price she had elected to pay. So for Cecily, assembling a team that would work towards this common goal was essential. Once a "true" cutting edge Oncologist had been found, (and it was not an easy task!), it was then necessary to hand-pick a team of specialists of like mind. Don't believe for a second that this will be done for you automatically by the facility in a timely manner. It is up to you, the patient, to find your team --- a team that is in sync with your personal needs.
The Oncologist must still be a "bona fide" Doctor in attitude, one who is watching alertly for all of the patient's medical needs relating to each and every organ in the body, including the management of pain. If the cancer doctor is too specialized in only doling out the cancer drugs, (and when that is done you may not even get a chance to SEE the Oncologist), then the timely need for bringing in specialists may very well be missed. Find someone who is a REAL DOCTOR first and always.
A lung cancer patient will also need a heart specialist (to drain fluid build-up from around the heart and to aggressively perform procedures to stop it from coming back), a lung specialist (to drain fluid build-up from around and in the pleural lining of the lungs and to aggressively perform procedures to stop it from coming back), a top radiologist (one not afraid of chemo regimens that change the body's sensitivity to radiation, but who can and will use this "radio-sensitizing" feature of drugs such as Gemcitabine to the patient's advantage), possibly a bone specialist, possibly a pain specialist, definitely a gastro-intestinal specialist (chemo can destroy one's stomach lining if someone isn't watching closely and treating as aggressively as needed, as Cecily found out to her dismay while at the "Cedars Sinai Comprehensive Cancer Care Center"), and possibly other specialists: of the liver, kidneys, pancreas and brain.
Of course this is not to suggest that the patient is to be surrounded constantly by a dozen doctors --- that's why the Oncologist must have the attitude of a "total" doctor who will service all the general medical needs of the patient, plus make pain-control a primary personal responsibility. But at various steps along the way, specialists will need to be called in for specific purposes. For example, it is necessary to drain and prevent future fluid build-up around the heart and lungs from the very start --- not later-on when it has become a problem. Therefore a heart and lung specialist should be called upon to perform procedures to drain and stop all fluid build-ups at the earliest possible time after diagnosis, something not always done in an era of "McMedicine," where the specialist are only brought in AFTER something has already become a complication.
Most importantly, medicine is a very, very political business. Doctors of the same specialty and skill will none-the-less come in all sorts of different "attitudes." The sole loyalty of each specialist that you, the patient, recruit to be on your team must be to the Oncologist and the Patient, not to the Hospital Management and/or the Insurance Company Rep (who goes into each patient's room every day to make copious notes about the patient's survival chances --- a patient should be very, very sweet to this man. His "evaluation" could determine whether all possible treatment is given or not! Usually, though, this daily evaluation will happen at a time when the patient is asleep and no visitors are allowed).
THE ABOVE CANNOT BE OVERSTATED. The administrators of every hospital (in California, at least) rate a doctor in several "disciplines" on a scale of 1- 5. This information on any doctor practicing in California is available to the public. A doctor does not want a conflict with hospital administrators; for them it would be like a retailer getting negative feedback on e-Bay ... bad for future business. A doctor with a strong loyalty to (or fear of) Hospital Administration is not the proper choice when a "late stage" patient desires a practitioner to go above-and-beyond the call of duty to do everything medically possible to help them survive (ie- consuming a lot of insurance money in the process).
A Hospital must stay on very good terms with insurance companies, for the two have a very symbiotic relationship. They NEED each other. They must get along and come to see eye-to-eye. It must be a happy, or at least workable, marriage. They have a common interest ... ongoing financial stability. Neither could stay in business without the other. Both the Insurance Company and the Hospital need to be able to take their share of the premiums paid by patients in order to cover the cost of running their respective businesses, and then must stretch the remaining balance to suffice for the treatment of all covered patients. It isn't just HMOs that are in that position; we just hear more about HMOs.
A doctor who tries everything in the book for all patients who are not given high survival odds isn't going to endear himself to the system. That would be seen as throwing good money after bad, and there just isn't enough money to go around. If every doctor did everything medically possible for every single patient no matter what their odds, then the entire medical system would have to declare bankruptcy tomorrow. Such an idealistic doctor would not prosper long politically in the Medical Business.
Of course, you (the patient) don't care about the big financial picture of the medical system as you lay in Intensive Care on the cusp of life or death ... all you care about at that moment is knowing that "they" are going to employ EVERY AVAILABLE option to help you beat the illness and live ... even if the traditional odds are not on your side. But ... that just isn't the way the system works today, which is why you must hand-pick the team. You must know that each any every team member will not give up on you because of outside pressure or from an attitude that is not on the same page as your cutting-edge Oncologist.
When a concern was expressed that insurance might not continue to cover the long list of off label targeted drugs that were planned to be a part of Cecily's Oil, Cecily's new cutting-edge Oncologist just replied: "You let me deal with the insurance company." Now that is a rarity in the medical profession, I guarantee.
Your entire team must think that same way. It does not help if the Oncologist is winning the Molecular Therapy battles, only to have the patient still lose the war due to complications that were inadequately resolved by the specialists.
Maybe in 15 years --- if Molecular Targeted Treatment becomes the new FDA protocol and all specialists are re-educated to be aggressive even with late stage cancer patients --- the issue will go away. But that's not automatically the way it works today. As the first generation of Molecular Targeted Therapy is approached by just a very few Oncologists today, with courageous pioneering patients such as Cecily Adams, it is simply the fact that there will be problems with the "old ways of thinking" being so prevalent within today's medical "system".
Under today's early implementation of Molecular Targeted Therapy, only the Oncologist is qualified to know how well the patient is doing in terms of the cancer treatment --- the specialists have never been through this pioneering process. So as a failsafe position, focus on the heart and lung specialists first and foremost since it is the lack of proper control of internal cancerous fluids building up around the heart and lungs that stand the greatest chance of leading to complications. Make certain that they "get" what is being done in this pioneering treatment. Make certain that they know that the patient is willing to endure pain for this shot, and is pleading for all possible treatment to be given. And make certain that they have the medical determination of the "little boy who put his finger in the dyke" in going above and beyond the call of duty to plug up those fluids at all costs to give the Molecular Targeted Treatment the longest time to try to accomplish its mission.
Remember, neither systemically delivered Chemo (ie- the standard Chemo method given through an i.v. drip) nor Targeted Drugs work against cancerous fluids freely residing beneath the heart and/or within the walls of the lungs. Even if the Chemo + Molecular Targeted Treatment is succeeding in slowing the cancer down and even reversing it, that won't help if the cancerous fluids remain in place.
A sure sign that a specialist is not of the right mindset to be involved in a cutting-edge treatment such as Molecular Targeted Therapy is if that "team" doctor asks the patient or family to sign a form giving to that doctor consent not to resuscitate in the event of a crisis, (for "compassionate" reasons). Such a "team" member is likely of the old "FDA standard protocol" way of thinking about late stage cancer, even if they are the nicest person and most compassionate doctor in the world, with (in their own mind) only the patient's best interests at heart.
Find a new team member and let the power of life and death decision-making remain in the hands of your trusted advocate and the cutting edge Oncologist, who understand what the Molecular Targeted Therapy is trying to achieve and the importance of the patient being given every possible day of life in order to give this 21st Century protocol its best chance at success. If a patient did not want to be given every possible chance at life, they would not have opted to be a pioneer in this cutting edge approach.
[The opinions expressed above are strictly those of this website creator. They do not represent the opinions of anyone else. There may be patients, especially of advanced age, who wish for exactly the opposite. They may be very satisfied with the long and wonderful lives that they have lived, and may not want a long pioneering effort with a new protocol and an uncomfortable fight in their later years. But the system of treating late stage cancer patients MUST respond to the distinction, and offer treatment accordingly.]
CUTTING-EDGE CANCER INFO
Finding
a 'true' Cutting Edge Oncologist
The
Early Formula for "Cecily's Oil"
The
Need For New Drug Approval Laws
60
Minutes Story: The FDA and Politics
AP:
FDA Silences Internal Critics
Quality
of the Best Rated Hospitals