Prostate Surgeon Strongly Urging Radiation, Says RP Could 'Put Me In Diapers the Rest of My Life'

I've been in active survelliance for prostate cancer for about four years, and have decided it's time to take action. Like everyone else in my position I have been weighing surgery vs radiation, and was very surprised when my prostate surgeon strongly recommended radiation. I have had an enlarged prostate for years, and he says it is so large that surgical removal of my prostate could require bladder surgery as well. YIKES!

The surgeon said the risk is permanent incontinence and therefore radiation is the wiser choice for me. I was both taken aback and thankful for his advice. Not all surgeons will turn down business. However the news was also a bummer in a way, because I had decided to go with surgery in just a few months.

So now I am thrown for a loop and trying to get my head around radiation. I realize there is risk either way, and there could be temporary incontinence after radiation. I just don't want to be wearing pads the rest of my life.

I don't know what I am going to do. The surgeon has referred me to a radiation oncologist -- so we will see how that goes. I may also seek a second opinion from Dr. Vipul Patel, whose office in Central Florida is about 45 minutes from my house. He and his team claim to have performed more than 10,000 prostatectomies -- although my current surgeon cautioned me that Patel is a high-volume provider and may not perform all the surgeries himself.

It will be good to get another perspective. I think Patel and his team are fully comfortable with all types of situations while my current surgeon is super conservative.

Even my close friends who have been treated are of little help helping me decide. One had radiation and swears by it, and the other had surgery and wouldn't do it any other way.

Decisions, decisions! I appreciate all comments. Thanks

You might inquire about Prostate Artery Embolization (PAE), which has only been in use for a few years, but seems to be gaining fast acceptance from radiologist practices.

It is not a cure for PCa, but a way to drastically shrink the prostate. An outpatient procedure performed by an interventional radiologist.

I am mentioning this because your very large prostate appears to be influencing your treatment options, and also maybe a desire to be rid of the gland.

I just recently heard of PAE being used to shrink the prostate as the first stage of a treatment plan. You may want to research it for that purpose.

I also had a very enlarged prostrate with a prominent third lobe incrustated in the bladder. I recovered almost complete continence, no pads, in a maybe a slightly longer than average time of two and a half months. But every case is different and you may have some particular features that motivate your surgeon opinion.
Before surgery I read an article predicting exactly my incontinence evolution. It also claimed that people with an enlarged prostate and a third lobe may have an extra benefit from surgery, due to our previous urinary issues. It is possible that, if you have radiation, you will need some treatment to decrease the prostate size. I consulted two ROs specialists, one on EBRT and another on SBRT, the first one wanted a size reduction previous to treatment and the second one wanted it after radiation. One of the factors in my decision to go to surgery is that it offered a simpler fast primary procedure for my enlarged prostate. As others advised I would consult with a very experienced surgeon and also with different radiation specialists.

Hi guys,

Thanks for the great comments!

BillyBob@388: Yeah, I was surprised the surgeon, who I was referred to by my urologist, was so candid. I even asked him why he was turning down my business. He looked me in the eye and said, "Look, I treat people, not sicknesses. I also have to live with myself. The last thing I want is to bump into you in Walmart 10 years from now, ask how you're doing, and hear you tell me you're still wet."

jmadrid: Thanks for your advice on making a very careful decision with lots of input. I'll be sure to discuss the size of my prostate with all the medical professionals I talk to. Your comments provide a great deal of insight. Best of health to you.

Tall Allen: I follow your posts and am excited reading your comments about my situation. Based on your note I looked into SBRT (had never heard of it) and I'm pumped! That solution seems perfect for me. I am definitely going to discuss that with the radiation oncologist I have been referred to. I'm about two hours from Tampa and may contact Debra Freeman, who you recommended, as well. Thanks!

ASAdvocate: Yes, my very large prostate is affecting my decision making. I have had an enlarged prostate for years, and it has led to frequent urination -- so much so that my adult daughter noticed. She is a medical professional (not a doctor) but consulted with some prostate surgeons at her hospital. Now she's asking questions which means I am going to have to tell all three kids soon.

InTheShop: Yes, I got lucky when I was referred to my current surgeon. Clearly, he is not motivated simply by dollars.

Thanks again, everyone!

Cigar56 said...
I'm about two hours from Tampa and may contact Debra Freeman, who you recommended, as well. Thanks!

I live in S Florida and have heard only great things about Dr. Freeman. If I was looking for treatment now she would be at the top of my list.

Jim

Tudpock18 said...

Cigar56 said...
I'm about two hours from Tampa and may contact Debra Freeman, who you recommended, as well. Thanks!

I live in S Florida and have heard only great things about Dr. Freeman. If I was looking for treatment now she would be at the top of my list.

Jim

Jim, thanks for the recommendation! I am going to reach out to Dr. Freeman.

Tudpock18 said...

Cigar56 said...
I'm about two hours from Tampa and may contact Debra Freeman, who you recommended, as well. Thanks!

I live in S Florida and have heard only great things about Dr. Freeman. If I was looking for treatment now she would be at the top of my list.

Jim

Ditto......

It's a relief and good to be at peace with your decision. Good luck with your treatment and keep us posted.

Great news!

All things considered, HDR wasn't that big of an inconvenience to me.

I'd definitely do it again. Other great suggestions above too.

Take some suggestions, but do your own homework.

There's a little thing called the "Stockholm Syndrome" that leads patients to defend-their-doctors-to-the-death! Remember Patty Hearst and the SLA? In the cases here, it happens even, for example, if they were overtreated and ended up with an unnecessary treatment. There used to be a guy who posted here frequently who continually claimed his doctors were "top notch." That was the phrase he used over-and-over. They were in charge of everything. Not necessarily that he was overtreated, but he thought he was getting the best care even though everyone here was urging him to look elsewhere. Well, turns out he was getting crappy care, but it took him years of suffering afterwards to realize that.

Another guy here had what probably is one of the top surgeons in the country...but he had a little accident—a little slip-of-the-knife—during the procedure and he didn't really tell the patient about it. Left it very obscure in the report; the patient had to figure it out himself (with the help of HW/PC). To me, that's kinda a problem. The patient defended him robustly...for a while.

Take some suggestions, but take them with an appropriate grain of salt...especially if they say their doctor is "top notch"..., then do your own homework.

Post Edited (NKinney) : 5/23/2018 7:39:16 PM (GMT-6)

Good advise from NKinney!

Many halo reports are based more on emotion, than on fact. Usually self congratulating, soon after treatment, so no extended experience. Well meaning but misleading. Do your own in-depth research..

With that said, you’re in excellent hands with SBRT by Debra Freeman. Good luck.

Hi guys, thanks for all the comments!

Tall Allen: I am a big fan of your posts and knowledge. I've even followed you on other sites and you're a big reason why I settled on SBRT. Thanks for your valuable insight.

InTheShop: I appreciate your encouragement! My wife is so delighted that I have decided to end the active survelliance and move on to treatment.

NKinney: Your advice about conducting careful research is spot on! I'm confident that in Dr. Freeman that I have made the right choice for me. Thank you for your insight.

19tarpon47: I'm going to take you up on that offer to contact you by email! I won't be going under the cyberknife until later in the year, but I know I will have lots of questions as that day approaches! Thanks again for being willing to share your thoughts.

garyi: Thanks for the thumbs up on Dr. Freeman. I'll be meeting with her in about three weeks, for the first time. I'm excited!

three 5's and a jack: Thanks for telling me that incontinence usually isn't an issue with SBRT. The prospect of being wet all the time is one reason I opted against surgery. As I said in my original post, I have a good buddy who opted for surgery and incontinence was never a problem for him. But the surgeon I would have opted for talked me out of removal because of possible complications with my bladder. I'm glad that Cyberknife will remove that risk. Thanks again for your input.

Dewayne: Man, your PSA has dropped like a rock! I am hoping for the same success!

Busted1: Thanks for the encouragement, and yes, I will be posting updates!

Hopefully I didn't miss anybody, but I will be checking in often. Here's to continued good health for all of us!