I hope all of you have had a blessed Christmas and Hannukah season. We certainly have here.
This blog entry deals with taking control and being aggressive in fighting PMP and it’s related diseases. While the words taking, aggressive and fighting aren’t exactly in the holiday spirit, they need to be brought up here.
In June ‘04 I was on a business trip in Scottsdale, AZ. That evening I got around to opening the Wall Street Journal and came across a great front page article about a nurse diagnosed with lung cancer who refused to accept that her condition was “terminal” and “inoperable”. The story related her efforts to take control and starting a search to find physicians and facilities that would help her, not just tell her it was basically over. She was diagnosed in 2001 and as of mid 2004 was doing well. Testimony to her success in finding a surgeon and facility that succeeded in the face of other physicians saying she only had months.
The article motivated me to write a letter to the editor of the WSJ. One paragraph I wrote said:
Those of us with “incurable” or “rare cancers” really have no choice but to be aggressive…..in today’s health care environment patients have to be a driving factor in their treatment plan. You have to fight for knowledge, fight to educate your physician, fight to have treatment approaches approved by your insurance carrier.
Two weeks later 5 letters on the subject were published by WSJ on the subject. Mine was the only one by a patient/non-physician. 3 of the letters were from physicians condeming the physician and the nurse for going forward with aggressive treatment in the face of mainstream medicine saying nothing could be done. Thank goodness the last letter was from a physician who approved of the action. As he said “If you don’t like the answer, get another opinion, as the nurse did.” It is disappointing that 75% of the physician letters published basically said patients shouldn’t question their opinions, or to be aggressive in fighting for treatment options that give them a chance. Obviously, within medicine in general there is a sense by physician’s not to question their judgement. Those of us dealing with these rare conditions need to work very hard to find that 25% of physicians who won’t say “just give up”.
For those of us with PMP and releated diseases, we have a greater battle in being aggressive and taking control. First your diagnosing physician will see only a couple of cases in their professional lifetime. Second, the known specialists and their cancer centers, aren’t well known to mainstream physicians or the general public. Therefore you are sent in one of two directions. You get either “we will treat this like colon cancer” or “there is nothing we can do”. This is where we the patient has to take control, and hopefully why you are here at PMPAwareness.org. Now you have educate yourself, so you can educate your local doctors. You have to find the specialists, set up meetings and ulimately choose who to select. You have to take control and be aggressive, since the vast majority of the medical community won’t do it for you.
Please us our physician listing in the FAQ section to find the true PMP specialists. Ask questions of this community and work hard to educate yourself with information from the research section. Be aggressive and be and active participant in defining your treatment, you will be better off due to your efforts.