behconsult wrote:...Twice so far I have had to battle my oncologists for alternative treatments such as cryo or SBRT consultants
My second opinion onc states that many oncs aren't interdisciplinary and have research to support there narrow views of chemo only.
NCCN guidelines for treatment of colon cancer only to discover the board who makes the decisions on best practices for colon patients are themselves are ALL oncologists, many list the drug companies that support them, and excludes the other cancer treating disciplines.
I go to...a nationally recognized cancer institute and they have extensive treatments in other departments. It makes me nauseous to think of patients who could have benefit [another] approach that may be much more effective... with a higher cumulative quality of life and just might be alive today,
...but passed away because of narcissistic or rigid oncologists chemo only approach.
Stage 4 patients deserve a Bill of Rights where information on the various treatments, with efficacy details, are provided to them regardless if there facility can or is able to provide the service.
various self interestsThe guideline ONLY recommend chemo! In other words, oncology as the gatekeeper of treatment recommends for the treatment of cancer only their elixirs and potions, and excludes the competition like Interventional radiologists or regular radiologists from their board. Typically this is an Antitrust issue as competition is squelched. ... As it is now, most patients are getting a very limited informed consent that protects the providers but not the patients.... It is just everyone else I am concerned who is not able to advocate or views their onc through rose colored glasses when it really is a case of...
behconsult wrote:...Can I hear an Amen?
O Stoma Mia wrote:behconsult wrote:...Can I hear an Amen?
Yes, I agree with you. What I would like to ask is this: Realistically, what can be done about the current situation? How can we shift to a different paradigm that will give more rights to cancer patients? Any idea?
betsydoglover wrote:You have a point. You should not tar all oncologists with the same brush. Many are open to all kinds of treatments as they view their main job as curing the patient. All of us Stage 4 patients are different, but oncs are very different also.
behconsult wrote:... If my senator or state rep calls me back, I will share an earful. I think all the change can occur from a bottom-up initiated force. Requiring a detailed pro-patient informed consent and required disclosure about treatment options.
Pyro wrote:I support this BUT there are some issues. You would have to constantly change the “Bill of Rights” if it includes the effectiveness of treatments because it’s always changing. I’m not saying it’s impossible, but it may not include this.i was talking to a cancer researcher the other day (neighbor, I’ll find out where, a lot of people here might be interested) and he was telling me cancer was a moving target due to its mutations, which tells me treatment will always be different between individuals.
O Stoma Mia wrote:behconsult wrote:... If my senator or state rep calls me back, I will share an earful. I think all the change can occur from a bottom-up initiated force. Requiring a detailed pro-patient informed consent and required disclosure about treatment options.
Good luck on your contact with your Senator. If you don't get a reply, you might try contacting one of the people who visited his office during the Call-on-Congress event last month. There were seven of them, including the Colon Club manager for the Kimberly Fund.
Photo credits: FightCRC.org
One thing your Senator or congressman could do is to sponsor a comprehensive bill on Informed Consent. (More on that later.)
behconsult wrote:.. I got in. Appt with my Senator on April 16 for a 1/2 hour proposal.....after my onc appt in the morning-- Irony. B
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