Update #4 in my continuing journey. ... - Prostate Cancer N...

Prostate Cancer Network

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Update #4 in my continuing journey. Decision made.

PCInPA profile image
PCInPA

If you read my prior posts those will provide more background.

healthunlocked.com/prostate...

Since my confirmed diagnosis earlier this year I have been doing extensive research and met with a variety of specialists. The info and support here has proven extremely valuable.

As I started my research I quickly put surgery as my least favorable option.

I first explored newer procedures like FLA and Tulsa. Unfortunately, the factual efficacy data for those does not support the anecdotal evidence. The recurrence rates are very high. There were plenty of clinics willing to take $40k or more to perform these proceedures. I would have gladly found a way to pay for them if they actually worked. The data just does not support it and I am too young to accept that risk.

My next great hope was radiation. What I did not plan for was the complications of radiation with a 96cc prostate. One of the worlds leading brachytherapy specialists ruled that out for me. I then looked at SBRT / Cyberknife. Met with 3 Radoncs who all said the same thing, that they would not recommend hyper fractionated RT due to my prostate size and history of BPH. They all felt that a traditional 8-9 week course if radiation would effectively kill the cancer but they were also open about the side effects and longer term risks.

So, it seemed that if I was being honest with myself that the best course for me, in my situation not necessarily yours, would be surgery. Now it came down to who and where which drive more research. Recently I learned about a modified robotic procedure called Retzius sparing. I read more and it seems to have significantly improved incontinence outcomes, most men needing no protection within as little as a week after. Also less shortening or pyronies risk. ED seems about the same. I corresponded with a surgeon in the UK who, even though he would not be getting my business from the US, felt that I would be a good candidate even with the enlarged prostate. I then reached out to surgeon at Georgetown who I also met with today. He is now exclusively using the Retzius proceedure having done 200 to date with excellent outcomes. We went over my MRI and he seems confident about successful Retzius sparing and nerve sparing.

And so, the decision is made. I now just need to schedule the actual date. I will not say I am happy with the decision, I would have likely done SBRT under different circumstances. However, I am very much at peace with my decision. I researched the hell out of options, talked to many specialists and, in the end, have made what I think is the right decision in my situation. Again, I emphasize that right for me may not be right for you. There is no perfect option here so in the end there is always a bit of a dice roll.

I will likely enjoy the next approx 8 weeks before going under the cyborg knife. Once that happens, I will be sure to share me experience and outcomes with all of you.

Thanks again for all the information and support even though I still wish I never had to know any of you. Hahaha.

8 Replies
AlanMeyer profile image
AlanMeyerModerator

It sounds to me like you have made a very well considered and rational decision.

Best of luck with the surgery.

Alan

Don't bet on your (quoted) prostate volume. They routinely calculate it using the ellipsoidal formula when the gland is more of a pear-shape. This is one source of error. The second is the calibration of the machine. My mpMRI estimated my prostate volume at 59.465ml. Yes, with 3 decimal digits of accuracy !!! Solely from the "accuracy" of this figure I could tell that the radiologist, in terms of measurements, was just for the dogs. Long story short, at prostatectomy it was measured at 33gr/35ml.

I appreciate your entry here and describing the way you made your decision. My husband wanted surgery and does not even want to talk to a radiologist. When we interviewed our surgeon he made an effort to describe in detail the process of radiation, length of treatment, possibility of hormone therapy and side effects. We found out that if the cancer does come back it takes longer to find that out, wasting valuable time. If the cancer comes back after surgery, he would know right away from a PSA test result. My husband has his operation at the end of July so we are enjoying the summer, knowing he made the best decision possible for him. I hope you enjoy your summer too!

PCInPA profile image
PCInPA in reply to Larrywife

Definitely pros and cons to each approach. My original urologist, who I did not consider for surgery, was vehemently anti-radiation. Most of the center of excellence surgeons and RadOncs were far more balanced. While they each had their biases, they were reasonably honest. In my case, which I would not have expected, the RadOncs talked me into surgery moreso than the surgeons. Like I said, not my first choice but probably the right choice for me. For others, it will be different. The trick is to avoid getting tripped up by any one person's outcomes be they good or bad. People have had great outcomes and horrible outcomes going down both paths.

redonthehead profile image
redonthehead in reply to PCInPA

Good job on making a decision, I know first hand the agony. Time to back off on the studying and prepare as best you can for the operation.

I'm getting SBRT starting next week. 62cc prostate per mpMRI, 50cc per ultrasound the year before.

Good job self advocating ....you do you .. Good luck on improving your health .

I agree. We each need to know as much as we can and then advocate for ourselves. I’m still learning. I pass on as much as I can to my 2 natural born sons who now have the risk of Pca. But from the time my Dad had Pca and had his prostatectomy (open & 5 hours long) to when I had mine last year, the Robotics made a big difference in healing. Even in the past 1-2 years we have seen changes in scans.

Thanks for all the comments.

I have schedule my procedure for 05 August. This way I can at least enjoy most of the Summer.

As I have said before, no easy or great options. What is best for one person is not best for the next guy. If you asked me 6 months ago, or even 2 months ago, if I would pursue the surgical path I would have said absolutely not. Unfortunately, we have to play the cards we are dealt. Do your homework, keep an open mind and eventually pick the poison which best meets your situation.

My dad had his prostate removed 20 years ago. He had no issues with incontinence so hopefully there is a genetic factor playing in my favor.

It will be interesting to see what develops in the next 20 years. I keep envisioning that a week after my surgery that some biotech company will announce an mnra injection that fully eradicates prostate cancer with no side effects! That is pretty unlikely, but hopefully it is closer to reality by the time our own sons have to deal with this.

In any event, come August I will share with you all of the gory details. Stay tuned!

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