What patients on a surgery path have a right to expect as standard of care - my view

I thought it might be useful to share MY THOUGHTS about what surgery candidates for prostate cancer treatment should be looking for in their treatment. It is NOT a post to advocate surgery. That's a whole separate issue. But if that is the direction you go, you need to minimise the side effects and – critically – understand how bad they might be so you can weigh them in your decision. The path you take – the path you insist on being allowed to take – can make a massive difference.

ONE man, “12 needles in the rectum, pop pop pop, G6 prostate cancer – cancer OMG – needs to come out – oh yes Doc – pads for life: erections forget it” is one too many. And there are more than one. But as Mother Theresa and many others say, save one and you save the world, so here goes. My aim will be to edit this in response to subsequent posts so take your best shot!

So your PSA is rising, you come up with all the excuses but there is a chance you have Pca. Start doing Kegels NOW, whoever you are, and get in shape more than you are already. Both will help you whatever path you take. Here is a top UK surgeon on preparing for surgery. https://www.youtube.com/watch?v=388jbb7gaa0

If your urologist wants to pop pop pop 12 needles in his (yes) office, find a new one.

Because the next stage these days is NOT a biopsy but an MRI. (I know many guys have insurance issues, so I am idealizing slightly but this is your LIFE - and not just the cancer: suicide is a major complication of a prostate-cancer diagnosis.) Ideally multi-parametric and 3T, but not essentially.

Then things get complicated but I am talking about the path to (and through) surgery so for these purposes there’s a PIRADS 3-5. THEN you have a target for a biopsy.

You will also know how at risk your nerves are. Very roughly, any surviving nerve has a 50:50 chance of giving you erections after surgery. So with two, you have 75% chance of recovering erections (because you only need one to work so the chance of NEITHER working is 1 in 4). https://www.santishealth.org/prostate-cancer-information-centre/nerve-regeneration-after-radical-prostatectomy/. DEMAND this assessment off your MRI (unless you don’t care).

Also DEMAND that they tell you your free urethral length and the implications for regaining continence. If the radiologist and urologist look at you blankly, take the images to someone who doesn’t. If that length is <10mm, surgery risks lifelong incontinence. >12mm was shown as desired in this study. https://wjso.biomedcentral.com/articles/10.1186/s12957-018-1523-2. As it goes up beyond 14mm, the chance of incontinence drops towards zero and the chance of immediate continence rises to 3 in 4. https://www.sciencedirect.com/science/article/pii/s2287888218300461. Standard of care is now an informed discussion on this topic. You are owed it and it is VITAL. It might make radiation mandatory.

So on to the biopsy: best standard of care is a saturation transperineal template biopsy of some sort, with extra needles for the MRI target. (Yes you’ll suffer but if there is cancer there you need to find it and a negative biopsy, particularly the 12-needle or worse, is NOT the all clear; there are many false negatives).

For the purposes of this post you find a cancer that needs treatment.

Now you need a surgeon. There’s an awesome thread on here with great names. PLEASE PLEASE PLEASE do not be “railroaded” by your existing “team”. And if you listen to recommendations, check them against DATA. Don’t worry about hurting feelings: this is your LIFE. Do not entrust it to anyone who does not do a LOT of RPs. (open, laparoscopically or robotically is secondary – see below.) By a lot I mean have they done 100 in the last 12 months? And have they done many hundreds overall? Will they share their outcomes as to the “trifecta”? Will they actually do the surgery? (A full list of questions is available elsewhere on here: I do not want to repeat them all.)

You need a hospital (heavily related to the surgeon of course). But the hospitals do vary and ideally you want one with a good ER and of course an outstanding infection record.

They will probably have a robot. The latest model is not vital and there is a lot of marketing around. For example the Da Vinci SP (single port) eliminates the four (tiny) secondary incisions. You will still have the only incision that matters, and there appear to be issues with the thing. On balance, avoid. At the other extreme, open surgery is a bigger scar (pubic bone to navel) and longer recovery but 300 times over take the good high volume surgeon with no robot than someone who hides inexperience behind a flashy tool.

Now the fun part – and there is a lot of misinformation out there. Speaking directly or indirectly to a lot of people who really know about this stuff, you need erections NOW. Best standard of care starts you on tadalafil (and again, I know there are huge issues Stateside here) 5mg/day BEFORE surgery and if you are not getting some erection action within 6 weeks tops, get the pump involved https://www.nature.com/articles/3901561 and the injections. The thing MUST get the blood flow or it will atrophy. Shrinkage, I am reliably informed, is not an inevitable effect of surgery, but it is a very common one. Again, if you don’t care, God bless and I envy you your easier life… It is NOT GOOD ENOUGH to be told to be patient, that erections can take up to 2 years to return, etc. See eg https://www.nature.com/articles/3901561 referring to https://www.jsm.jsexmed.org/article/s1743-6095(15)33881-9/fulltext or https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5664996/.

Good luck and God bless but they can’t do it for you. In this area of medicine more than any other I can think of YOU have to help yourself avoid some potentially very bad outcomes. Fire away so I can start improving this post.

Post Edited (ShawsUnprostatedMan) : 12/5/2021 1:55:23 AM (GMT-7)

SUM - "My aim will be to edit this in response to subsequent posts so take your best shot!"

The concepts are good but the presentation is too lecturing from a specific point of view. Some will follow blindly and some will reject before getting to the end. No telling what the newbies and middle will do. For example, "So your PSA is rising, you come up with all the excuses but there is a chance you have Pca. Start doing Kegels NOW, whoever you are, and get in shape more than you are already" may lead someone to think that you have proposed a holistic method of treating cancer and thus does not have to see a doctor right away.

To be a guide document or post, you should provide references to every major concept supporting your statements. The difficulty many times is there is a pro, con, and/or no conclusion study for many concepts thus it is not really honest to pick just the one that support one's position and ignore the others.

Most of those new to PCa will get crushed by a doctor when they say "I read it on the internet from an English fellow" and go home with their tail between their legs. As I write this, I see you have your first customer.....

Thanks for the requested follow-up information.

I, too, think you're lecturing a bit much, using a bit more "you must" than "you should" statements. Being one of those guys who got my start with a small town/small hospital Urologist, there is a piece of this that gets missed by those who don't live in flyover country.

It's difficult for those who don't live there to grasp that top tier care might truly be too far away to be useful. People have jobs, they have limited vacation/time off available. Relatively few people have the resources, financial or otherwise to travel hundreds of miles to get diagnosed and treated. Implying that people who do not go to literally any length to get treated by 'the best' are somehow failing is dangerous.

One fundamental reason I chose surgery had to do with this very thing: When I was diagnosed 7 years ago tomorrow (!), MRI was not offered, I had a standard 12 core TRUS biopsy at the Urologist's office. I was treated at a Center of Excellence--a 2+hour drive away, in midwest wintertime. I explicitly turned down EBRT because the prospect of making that drive daily for 6 weeks --taking 6 weeks off work for all practical purposes--was just not possible (never mind all those endless miles of nothing but miles of concrete in the winter was daunting to say the least).

If I sound like I'm ranting, I guess I am, a little. It's easy to assume that everyone has the levels of access, ability to pay for, and support systems that "I" might have. Truth is, many don't. Don't push too hard.

Most of your points I agree with. This forum is all about, and has been ever since I joined, telling men to do their research, find a treatment and a treatment team that works for them, get in shape before treatment, and work hard on the recuperation process afterwards. This is basically a good start to summarize everything--but I'd lighten up a little.

halbert - in a similar vein, almost all studies use data from the top surgeons and/or medical institutions around the world to arrive at their conclusions. Thus to validate the conclusions, one has to use the top surgeons and/or institutions. Your mileage may vary if you don’t.

Example - My son was going to the Univ of Wyoming (flyover town in a flyover state) and saw an orthopedic doc about a shoulder problem and the doctor recommended surgery. We had him see a orthopedic doc in the Twin Cities on his holiday break who said they did not do that surgery any more due to poor results and better options so no one should recommend it. The Twin Cities are not NY or CA but it helps to have a major medical school in town and Mayo nearby to stay somewhat current even in flyover country.

Thanks for the additional follow-up reference.
The studies you reference suggest sphincteric length influences early continence recovery (one to three months) after prostatectomy.