TUVP experience and question

While prostates are a difficult nut to crack I have a problem with this “everyone’s different” phrase that keeps coming up. While our conditions have reached different stages we are “all the same”.  We are prescribed different treatments because our governments/insurers want to reduce costs. Even when we are prepared to pay the entire costs ourselves to get best treatment success eventually forces them to follow.

I am in Australia and it seems most forum contributors are UK or USA based. I was offered medication for BPH and told RP for PCa was a better option than radiation. Radiation was said to fuse prostate to bladder wall complicating any return of the cancer. At age 72 in November 2015 the only likely RP side effect advised was a “couple of months of incontinence.” I took urologist advice all the way without any personal research. My post surgery research has led me to suspect my faith in our healthcare system had adversely affected the rest of my life. Losing a prostate is much more than the loss of say an appendix I had expected it to be. I now find no one knows the full function of the gland and the parts you loose with it. Your masculinity gone no matter what your age or sexual situation. The incontinence goes on and on. No matter how careful you are and how much padding you use you don’t know when you are going to foul someone’s car or lounge. Overnight stays anywhere are a thing of the past. You begin to understand why that officer in “Dances with Wolves” was portrayed to blow his brains out.

My surgeon was a robotic expert but I didn’t find till months after my open RP that the equipment was not available in my city at that time. I should have known all this. It came to one hospital here in late 2017 though not I think for government or insurer cases. Post-op I was told the difference was minimal but forums indicate it was much more than that.

Every time I enter forum sites I discover another option first world sufferers have over our prostate afflicted men. This time the TUVP turned out to be also Green light. We had never even heard of either name or this or many other procedures available elsewhere. More options must make treatment more efficient but not because we are different, because the problem is at a certain stage. Today should not be about having best treatment not offered relative to cost.

I suffered BPH since 1990. Alpha1 blockers Flomaxtra then Prazosin (4mg a day) were prescribed from 2006 to 2015. Urologists had known since 1995 that Alpha1s would need increased dosage after 2 years use. As there was no pharmaceutical company billion dollar benefit no one had bothered to do this research. When I sought an increase I was prescribed Duodart March 2013 to March 2014. As Duodart’s components were 5ARI drug Dutasteride and Flomaxtra my Alpha1 intake went to 8mg a day anyway. I was advised Duodart could cause dizziness. No mention over doubt it may initiate high grade Prostate Cancer (DPCa). This is still being withheld from the many thousands channelled to this drug by government and insurers today.

I was diagnosed with Gleason Score 3+4=7 and the gland and its associates were removed November 2015. In pre-release trials of 5ARIs participants all had previous medium hit biopsies and elevated PSAs. They were of prostate problem specific age. The numbers came out that the drug reduced the risk of low grade PCa but increased the risk of high grade PCa. Instead of a redo with a smaller number of participants with a previous MRI to eradicate this ridiculous outcome our government simply accepted their best position. They fobbed off the high grade risk. Our Duodart supplier has since reported 5 or now possibly 6 cases where they suspect the drug caused serious PCa yet users are not allowed to know the ever increasing risk.

Our Commonwealth Ombudsman has been led to believe only adversities detected in pre-release trials need to be advised to drug uses. That post-release serious adverse events can be withheld and this is what is happening.

So research then research again and take your time with every step in the BPH > PCa trip if it comes to that.

Barrie Heslop

Day 25 update - I'm still bleeding some with minor pain when urinating. The rectum pain is now minor also so everything is getting better.

I guess like I read, everyone and every surgery is different so that makes all recovery different. Starting to get my energy back and feel more alive!

I really do thank everyone for the replies and encourgement and I will let you all know how this story ends . . .