“Don’t underestimate patients” is a new blog post on The Health Care Blog web site by George Berger, who is a regular commentator on the posts on this web site.
George and your sitemaster don’t always agree about everything. (Recently we have been disagreeing about the use of the term “miracle”.) However, there is a lot George and your sitemaster do agree about, and one of them is (probably, I haven’t checked with George yet) that some of the comments (by physicians) in response to his blog post appear to have been written by clinicians who don’t seem to have a detailed awareness of the clinical data on the use of ADT + HDR brachy boost radiation therapy in the treatment of high-risk prostate cancer.
They also appear to have missed the entire point of George’s post, which has nothing to do with whether he was right or wrong in his decisions but everything to do with his right to make them and the concept of “shared decision making” in medical care.
Filed under: Diagnosis, Living with Prostate Cancer, Management, Risk, Treatment | Tagged: "patient power", decision, making, risk, shared |
THE "NEW" PROSTATE CANCER INFOLINK 
Kudos George on getting published!
Good work George.
One area that bothers me is respective of an obvious lack of current technical information (primarily Clinical Trials, R&D, and including international data) by many (most) oncologists.
Yes, I do appreciate that the vast volumes of text cannot possible be read concurrent with the daily and the on-going work load of many oncologists … and maybe a good example is the new vaccine via Cuba (CIMavax) which is being used to treat cancer of the lungs (in Cuba). Point: I correspond with two major cancer institutions in North America, and many of the oncologists are unaware of this vaccine, and its relative success story.
I do know that Roswell Park in Buffalo, NY, is currently conducting clinical trials for this new vaccine, but I know many others are totally unaware of it.
Maybe it is time for the creation of a new technical department at major cancer institutions, which might do this pre-screening. What an asset for the direct benefit of providing data which should be evaluated further by oncologists?
I wait for your wisdom and thoughts, and remain with,
Kindest regards,
Hojo
WOW, I just saw this and am half asleep. Thanks Sitemaster, for posting this, and thanks Rick and Hojo, for the fine remarks. I will get back here later today.
Thanks again, folks. Yes Sitemaster, the first comment by a medical person shows a lack of knowledge about the HDR boost. He hardly mentions brachytherapy, and assumes that only RP and EBRT were on offer in Sweden. Then he assures me that my treatment here is fine. But my point was that the Swedes told me about the EBRT + HDR treatment. Maybe he read his limited knowledge into what he thought was Swedish practice. I remained civil and explained that Sweden is not in America.
Well, some good news. Last 20 February the head urologist called me for our normal 6-month chat about test results. I had seen them online, so was not surprised when he told me that the PSA was below detectable levels. Then he said that, seeing that I got the radiotherapy in 2009, he would like to say I am cured. He added though that he of course could not say that as a responsible doctor, as the cancer could return. But, he added, the chance is low [as any distant metastases would probably have shown up by now] and that probability is decreasing with time [as they will have more and more time to turn up, but since they have not, the chance gets less and less]. I knew that, but it was very pleasing indeed, to hear it from an expert I respect. I have been occupied with work for Disabled People Against Cuts, but I hope to celebrate soon. So except for the slight risks, that is that. It took 8 years.
There is more to say, about the ethical matters I mentioned and about side effects, but I must be brief. Radiation cystitis is progressive and serious. I studied up on it when I got the diagnosis. It is a bladder inflammation caused by radiotherapy. Tissue bleeds and dies progressively from oxygen starvation so bladder function keeps decreasing. Risky surgery is required if fistulas develop. The usual treatments, formalin or alum infusions into bladder, and cauterisation of the inner bladder outer skin layers (epithelial), are symptomatic only and dangerous. The sole potentially curative treatment is hyperbaric oxygen therapy, HBOT. I got it in Göteborg, Sweden, at the Sahlgrenska Hospital of the university. It was a pleasure to sit in a high pressure tank, breathing pure oxygen through a mask, watching DVDs. I was with one to three other patients every weekday for 2 hours, for 8 weeks. It seems to have healed the wounds well, maybe completely; I have had no blood loss (hematuria) or incontinence since I got HBOT last November and December. I do know from my reading, that the success rate is high, and apparently highest amongst those cystitis patients who get treated within 6 months after their first hematuria. I got it 11 months after mine.