REZUM--HAVE YOU HAD THIS DONE???????

barrie62598 ChuckP · 2018-01-25T08:11+00:00

I've read pieces of this post with so many participants and found it very interesting but mostly all so long ago. I would appreciate you letting me know what you decided on and how it went. I only found posts from 2 years ago to 9 months ago and stopped and don't know if I am having more trouble negotiating the site. My story is different as we have less options here. There you have both good news and complications with most of your options but thank your lucky stars you have a system that cares enough to have them there for you.

I’m in Australia and find the site’s arrows don’t want to move up or down and the whole site keeps dropping out. I only access discussions reported to me on my email but this one only seems to refer to comments 9 months to years ago??? In Aus we only seem to be offered Alpha1s and 5ARI drugs with an occasional TURP thrown in for BPH. If PCa comes we are only offered Radical Prostatectomy (PR) or radiation until the cancer spreads.

The great range of treatments offered in US and UK makes me believe our intent is to substantially save government and insurers costs by reducing us to third world medicine. Everyone keeps saying how we are all different but it’s really where our prostates are at and the rest of our condition, medications, lifestyle that matters. No one is looking at our previous history, medications etc to compare results achieved from the various treatment options to ascertain what is best for the various starting points we are at?

My BPH treatment went back to 1990. PSA’s were never an accurate indication for my moderate condition (highest 3.8 April 2009 and 2.41 /ft=34% July 2015. A biopsy was cancelled in 1990 because of Urologists lack of faith in the accuracy of ultrasounds ability to detect abnormalities. Yet in 2009 a 6 hit biopsy was prescribed still only on basis of PSA and still useless ultrasounds. In 2015 our government still favoured ultrasound guided biopsies to detect PCa rather than accurate MRI/PET scans due again to the cost difference.

I was prescribed Alpha1s 2006 to 2015 (4mg a day). Urologists had known since 1995 that an increased dosage would be required beyond 2 years. As there was no billion dollar pharmaceutical company benefit no research was done by March 2013. I was then upgraded to Duodart for 12 months to March 2014 together with the Prazosin. This was contrary to Duodart’s CMI and took my 12 months Alpha intake to 8mg a day anyway. I don’t know if this was done on purpose or not. I note from this forum that 8mg a day of Alpha1s is now common. I wondered if they had got around to the research or if you guys are doing that for them.

There was doubt during trials whether 5ARI drug components, Dutasteride, and Finasteride reduced the risk of low grade Prostate Cancer (PCa) or increased the risk of SERIOUS life threatening PCa. Our supplier of Duodart (Dutasteride+Flomaxtra) has referred to this in the drug’s Consumer Medicine Information (CMI) but rejects the serious risk as a result of the study’s design. PCa does not appear in the “side effects” on the drug’s CMI and Urologists therefore do not mention this risk to patients they prescribe the drug to. Our Health Department suggests prospective Duodart users study the very complicated scientific 26 page Product Information (PI) document before taking the drug to learn of the Cancer risk rather than simply having it included as a CMI “side effect”. It seems they have substantially reduced their BPH costs by negotiating a Pharmaceutical Benefit Scheme (PBS) deal with the supplier and this may be their motivation.

The pre-release trials were conducted on men with elevated PSAs and low number biopsy hits. These were all PCa candidates going in and the trials were designed to fail. They were then able to dispel the serious high range PCa risk outcome without redoing the trial with more reliable MRI/PET entry. The release of these drugs without proper PCa evaluation puts Benign Prostate Hyperplasia sufferers in needless jeopardy. The drug’s purpose of abnormal manipulation of prostate cells in itself is a warning. If the only trial they were prepared to use came up with an increased risk of life threatening PCa that risk really must be listed as a “side effect” for the drug and advised to men being prescribed it.

Since the release of the drug here the Australian supplier of Duodart has reported 6 suspected adverse PCa events for the drug. Our TGA accepts supplier’s reports without Gleason Scores and will not seek this information, they say, because of privacy issues. I don’t know how the severity of a cancer can be a privacy issue when all personal data is withheld??? We are left to assume that as the reports are only required for serious adversities the Gleasons must be high. Urologists feel that if only 6 PCas are caused by the drug’s use this is a satisfactory outcome. No one has endeavoured to find out the real situation and confirm the real risk. The company told me they reported mine but reporting dates suggest they didn’t.

International healthcare providers have moved away from 5ARIs for BPH treatment. They offer a whole range of treatment options from, micro or radio waves, laser, electric currents, hot water treatments and restricting prostate blood supply. There is widespread belief that the inaccuracy of both PSA and ultrasounds have led to risky biopsies and PCa spreading. Severe incontinence and other known and unknown adversities are needlessly encountered. Australians are prescribed this treatment with hidden risk when better options are abound. Our Commonwealth Ombudsman says only side effects discovered in trials need to be advised to users. That no matter what adversities surface post-release that risk can remain hidden. No one will tell me what regime is in place to enable the reporting of post-release adversities or how the supplier can isolate their 6 suspected Duodart Prostate Cancers (DPCa) from the thousands of other user PCas not suspected of being drug related. Trials did prove that a very high percentage of 5ARI user types would progress regardless of their treatment.

In Australia drug suppliers are legally bound to report SERIOUS Adverse Drug Reactions (ADR) to our Therapeutic Goods Administration’s (TGA) Database of Adverse Events (DAEN). The regime that allows for this to happen is secret but as Urologists are required to prescribe first issue of BPH 5ARI drugs I suspect they may also need to provide suppliers with adversity details for these drugs. There should be similar type facilities with perhaps different names in other countries

My second biopsy in July 2015 was MRI guided to two 3+4 cancers, the other 18 were clear. Whether they hit malignant or non-malignant areas all biopsy hits bleed profusely for several weeks. They say we don’t then have a magnitude of malignant cancer cells careering around our bodies in the blood from the positive hits spreading the cancer. They say they prove this with survival rates of men after pancreatic biopsies compared to pancreatic cancer sufferers who choose not to take the risk???

I was diagnosed with 3+4 PCa and the gland removed November 2015 by open RP. Though my surgeon was an expert in robotic assistance the equipment was not available in my city. We are that far behind first world medicine. They tell me the difference in robotic outcome would be marginal but forum comments indicate this may not be the truth.

Post surgery there was very little urination control. Constant leaking while upright, general retention while sitting/lying then uncontrolled gushing on rising. The surgery left severe fungal infection of scrotum which could not be treated in the constant wet environment. After weeks of painful endurance emergency was about to re-catheterise before Urology countermanded with “just bear it out”. GP suggested “uridoms” but waste tissue continuing in urine flow just lifted them off. Trying to re-attach then caused other damage. I would likely still be there but for making up a device with plastic PVC pipe, electrical cover and catheter bag which worked like a uridom. It was restrictive but eventually solved the problem but I don’t know if the, at times, suctioning effect of it hampered my incontinence recovery. This has never really got any better after more than 2 years.

Shortly after the RP scar tissue and scabbing at bladder neck completely blocked the passage of urine. The back-up of fluid became dangerous at over 1L and panicky emergency mistreatment again hampered my continence situation. The stricture needed to be followed up with months of self-catheterising due to this mistreatment caused by my post RP being recorded as post-TURP at Triage and staff would not call-in a urologist to perform proper clearance again due to cost restraints. The continual forcing of multiple large catheters eventually breach the scar tissue for urine flow, everywhere. Triage nurse, emergency nurse, doctor and Urologist strangely all not knowing their own jargon.

It seems once you have any prostate problem PCa is a high risk down the track. It’s probably best to put of any treatment for as long as possible then take the minimal option for the level of your condition. Urologists don’t know the full function of the prostate or the parts lost with it. Hormones are important for whole body outcomes and all sorts of complications have followed. The 5ARIs play around with testosterone to unnaturally manipulate prostate cells. I now have other new ongoing conditions on top of the incontinence. Kidney stones, Polymyalgia Rheumatic (PR), joint and muscle problems, highly increased inflammation markers and low testosterone. The PR is requires steroid medication with serious side effects including depletion of immune system and complications with and for fungal infections. No matter what PCa treatment is adopted they tell us to assume that even though the gland is gone we still have to assume we have Prostate Cancer cells waiting in our bodies to declare themselves elsewhere in organs or bones.

My prescribed BPH treating medication likely increased my risk of serious, life threatening Pca. The RP left me incontinent with a urinary system worse than that of the BPH. Masculinity and who knows what other hormonal functions gone. Is any of the treatment put forward worth the risk? They say if we live long enough most men will die with PCa rather than of it.

Barrie Heslop

Guest ChuckP · 2018-01-28T22:00+00:00

Rezum procedure can cause retrograde ejaculation. Do not believe the doctor or Rezum. I picked this procedure over others because I was told no one in their trial group got retro, which I know now is BS.

REZUM--HAVE YOU HAD THIS DONE???????

5645 Replies

Report or request deletion

Thanks for your help!