Topic 1, preparation, recovery, and reconstruction

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Without getting into any details about side-effects, from what I understand, a lot of prostate cancer patients experience them, and many exit treatment feeling unprepared for the physical and psychological burden associated with them.

What’s worse, some “don’t want to talk about them” even to the extent of living with side-effects for years without being aware that there are sometimes recovery options available.

Is this really any wonder? Someone is told they have cancer… big cloud of white noise, and the words “potential for cure” are thrown in there – of course cure sounds more important than side-effects… then the guy goes home with his surgical or radiotherapy appointment(s) on the calendar – he still has a few weeks to “think about it and do some research” so he goes online and starts looking for unproven treatments that claim to be “side-effect free…”

Now let’s be sure to note that side-effects from the past decade’s shiny new wonder treatments (HIFU, Chryotherapy, proton therapy and the like) are showing up more and more…

So… he then either decides to go with proven approaches that have years of solid data to support their use, along with the data re side-effects and treatment failures… or to undergo some new/experimental approach (hopefully within the context of a clinical trial so he can contribute to future improvements and moving promising approaches to care into the arena of general care)… and irrespective of choice, sooner or later he will usually experience some sort of side-effect…

He might not complain because in his mind the doctor saved his life, and bringing up side-effects just seems petty…

Well – here is my first idea for how we might take a lesson from the breast cancer patient advocates on this issue…

Some of you may have heard of the Commission on Cancer. This accrediting body basically provides a stamp of approval on cancer centers that have programs in place which “focus on the patient.” These are NOT about technology… they’re about thoughtful little quality check points that support good patient care.

Needless to say:) breast cancer has its own special set of guidelines specific to those diagnosed with breast health issues…

A few jump out as having a possible “prostate parallel” that could have a monumental impact on patient care. Regarding the above… here is one of them…

Standard 2.18 Reconstructive Surgery
All appropriate patients undergoing mastectomy are offered a preoperative referral to a reconstructive/plastic surgeon. Reconstructive surgery is provided by or referred to reconstructive/plastic surgeons that are board certified or in the process of board certification. Compliance is evaluated annually by the BPL.

POSSIBLE PARALLEL PROSTATE GUIDELINE…
All appropriate patients undergoing prostatectomy or radiation therapy are offered a preoperative referral to a medical professional specializing in recovery for advice on treatment preparation and recovery options (such as biofeedback therapy, assistive technologies, medications, etc.).

The idea is, when presented this information within a focused interaction, the man if far more prepared to generally take charge by being physically and psychologically prepared… and is better aware that there are options for dealing with side effects.

Anybody have any thoughts?

By | 2011-10-06T18:04:55+00:00 October 6th, 2011|Activism, Newly Diagnosed, Tools for Activists, Treatment News, Uncategorized|0 Comments

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