Guest Ruach Posted March 7, 2003 Share Posted March 7, 2003 If this is the wrong place to post this -- please advise and I'll copy it elsewhere (it's a bit of a "vent session" for me). Conventional Denies Complimentary and Alternative I've been helping my mother deal with her Oncologist since diagnosed with Stage IV Adenocarcenoma for about a year now. Her Dr. only supports the conventional 3 treatments (chemo, radiation [+gamma knife after some coersion] and surgery) as options, the last one not being an option in my mother's situation. Any mention of vitamins or complementary thearapy gets the standard response "don't do it... we don't know what else might be in there that could counter what we are doing". I'm sick and tired of Drs. recommendations preventing patients from getting potentially helpful treatments just because they are ignorant on the subject. IMO, Drs. have a responsibility to learn and understand these things, especially when introduced and asked about by their patients (and their families). I'm sick and tired of Dr's stripping a patient of the confidence to raelly make educated choices that might extend beyond the scope of that Dr's expertise. What can be done to help educate Dr's in this area, and help bridge the gap between the "conventional 3" and the rest of the world? Delays in Deployment of New Treatments I've read about "cancer vaccines" which alter a biopsy of a patients tumor so that once modified and injected back into the patient, the patient's own immune system learns to recognize the cancer cells as "OK to fight", and the body cures itself. I haven't been able to find much about availability, but if this is as promising as it sounds -- why must it wait to go through the long process to get into the public's hands. Some things seem to make sense, but it seems that policies, politics and finances keep things from reaching market, quickly. What can be done about this problem? Need "Patient Advocates" Throughout my mother's treatment, her schedule has been turned upside down and around over and over. This is a high-stress period, and often is accompanied by added pressure to act without delays, presumably to quckly address a problem (e.g. brain mets. can lead to seizures or proress to other complications quickly, or a blood clot must be cleared). Immediately after the diagnosis of any new problem, the stress level peaks, and frequently scheduling and transportation must be arranged. I was surprised to witness just how uncoordinated medical care can be. When several Dr's are involved, it becomes a full-day affair trying to schedule appointments. Sometimes they are setup incorrectly -- sometimes human error leads to failure to be properly setup. Even within a single facility, there are scheduling complications. And the patient is left in the middle. All the patient wants is help, and sometimes they want to prove they can still help themselves -- our health care professionals make this a difficult task, even for those with a clear head and sound thinking (like my mother). I pity patients who are in a more confused state -- I suspect they are pulled even worse, sometimes receiving incorrect treatments, sometimes too many, sometimes insufficient, just because of human error. During a recent birthing experience, my wife and I hired a Deula -- she acts as an advocate for to-be parents, and the parents learn to trust her to help them achieve the pregnancy experience they want. She's trained and being trained and can offer educated guidance. Cancer patients need Patient Advocates to help. They need this to be offered as standard part of treatment, covered by insurance. And their families need this too. I recognize that many/most patients and families wish to learn and make choses on their own -- having a personal advocate can assist. Quote Link to comment Share on other sites More sharing options...
ginnyd Posted March 7, 2003 Share Posted March 7, 2003 Here, here Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted March 7, 2003 Share Posted March 7, 2003 My friends aunt is a patient advocate. She was a day tarder in boston making tons o money until her parents go sick, he dad had Mesothelioma. so she helped her mom take care of him. after a few months she noticed her mom's face sagging on one side and thought she was havign a stroke, turns out she had brian cancer. So the aunts parents (my friends grandparents) died 3 months apart. she decieded to become a patient advocate. so i think they are great! Quote Link to comment Share on other sites More sharing options...
Rosanne Posted March 7, 2003 Share Posted March 7, 2003 The advocates would be invaluble, especially right after the initial diagnosis. That is the most confusing, and stressful time. Even after almost 5 months it would be great. Rosanne Quote Link to comment Share on other sites More sharing options...
David A Posted March 7, 2003 Share Posted March 7, 2003 I agree so much with a patient advocate. I see 4 differnt doctors at the same institution and it seems like none of them want to do follow up, they keep passing the ball. My wife works there also, the Rad onc. and Surgeon were planning on doing chest x-rays for follow ups she raised a stink and asked them to do at least cat scan. I think I've mentioned to each doctor that the institution needs cordinators for paitients who see more then one doctor for their care and a few of them have agreed, sometimes I don't know who to call when I have question being a layman and all. Thanks for listening, David A Quote Link to comment Share on other sites More sharing options...
jane Posted March 7, 2003 Share Posted March 7, 2003 Iagree with alot of what you said. However, my sister is being treated in a large medical cancer center and DID get assigned a patient advocate. In her case, when she requested a change in doctors, the patient advocate (being an employee of the institution) was more concerned about doctor #1's feelings about being dismssed, than my sister and basically told my sister and mother that it couldn't be done..... You should have witnessed my mom's reaction to that! Now some MOM's can be a stronger advocate than a hired one, and in the end, a doctor switch was made, but NOT due to the patient advocate. Needless to say, we no longer use the patient advocate....... About alternative treatments, particularly with advanced cancer patients, I agree wholeheartedly. My sister is currently pursuing some of them, and at the very least, she is FEELING better..... hopefully getting some response too. Her oncologist (#2) was at least somewhat supportive of my sister looking elsewhere, at least temporarily. She is not "giving up" her primary oncologist, but is exploring/trying other things. After all, she knows her grim prognosis with conventional medicine..... Quote Link to comment Share on other sites More sharing options...
Guest Tammi Posted March 13, 2003 Share Posted March 13, 2003 There is an article in this month's Spirituality and Health magazine that gives 2 patients results with Qigong. The instructor is associated with Dana Farber. Here are some links: www.ramelrones.com www.healingtaousa.com wwwenergyarts.com www.qigonghealing.com Good luck. Quote Link to comment Share on other sites More sharing options...
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