What it takes to be an "Exceptional Cancer Patient"

VinceInMT said...
On that issue of travel, it can be a serious problem, especially for those in sparsely populated states. Another aspect to consider is related to insurance. A relative of mine went to a warm state to escape their home state winter. While there they were diagnosed with a cancer. Insurance is a Medical Advantage plan that refused their request to use out-of-network services and they had to travel back to their home state.

I don't, of course, know all the details, but that strikes me as so unethical on the part of the insurance company. So much for moving to a warm state. I live in a lukewarm state. Or lukecold, if it's winter.

It appears that the remarks or suggestions that are made by individual patients are based on “their” personal experiences; and those experiences may not actually relate to the status of the patient to whom they are directed. Even the encouragement to travel when within a day’s travel away is of little help to one who may not otherwise be healthy enough, may not have a vehicle in which to do so, may not financially be able to afford to hire transportation, may not be able to take such time away from the duties required where one lives (farmers with animals and fields to attend to daily, for example), cannot afford to mortgage one’s home for the finances to afford the care being suggested since may already be having difficulty covering the expenses of daily living, and this list could go on and on with other obstacles. Despite this being the case, it does remain important for those with a computer and internet access to spend time trying to find and better understand (in our case) this insidious men’s disease – prostate cancer. There are several supportive forums available among which are those that provide interaction between participants wherein reasonable discussion of what they have experienced may provide treatment considerations for the reading patient to discuss with his treating physician(s), but one must be cautious to avoid those who, rather than suggesting from their own experiences, appear to be directing the treatment the patient should embark on. There are some very informed patients who, having involved themselves in research and deep study regarding the treatment of prostate cancer, have become voluntary mentors to anyone seeking to better understand their personal status and what may be the best strategy of moving forward based on that status. One should always understand that suggestions they receive from others are “opinions” and should not be blindly followed as the treatment they should pursue. Rather, if appearing sound, should be further researched by the patient then discussed with his treating physician(s). The “informed” patient becomes an “empowered” patient who can then play a personal role with his physician(s) in pursuing the most appropriate treatment rather than simply “doing as the doctor orders.” Unfortunately, there are too many physicians whose egos will accept no other than the treatment that physician is directing, whether appropriate or not. Should a physician indicate “my way or the highway,” take the highway and spend some time finding a physician who is willing to listen to and address your concerns, and in whom you find actually caring and easier to trust. Much more could be discussed on the foregoing, but this is my input from my personally experienced 26 year treatment journey and several thousand exchanges with patients, caregivers, and physicians who specialize in the treatment of prostate cancer.

I read the ground rules, and they do not provide the reasoning in the manner in which I am trying to convey. I am new to this forum but I have been involved in prostate cancer as a patient since 1992, and advocate, activist, and mentor since 1996. My aim is always to make it easier for the patient or his caregivers to better understand this insidious disease by providing in non-medical jargon what the physician or lab/imaging reports may be providing the patient is unable to decipher/understand. I certainly wish to avoid any consternation to anyone on the forum that which I may post.