gone forever?

[Stellabell]

I'll keep this first post simple. Had an MRI, discovered tumors. Biopsy showed majority of samples Gleasons 8 or 9 throughout prostate, including some small incursion into left seminal vesicle. First recommendation (I will have second opinion in 2 weeks) radical prostatectomy, including both nerve bundles, followed by radiology treatments. I have the same initial questions everyone must face. How long will the incontinence last and are the good old erections gone forever? Will ED drugs work if the nerves are removed?

[Tall_Allen]

You have only a 13% chance of regaining potency if you don't have nerve sparing (37% if you do). It's far from the most curative therapy anyway - brachy boost therapy is by far more effective than RP followed by radiation. You would have to talk to an expert in brachytherapy (either kind) to get this. Read this before you go further:

pcnrv.blogspot.com/2017/02/...

[Stellabell in reply to Tall_Allen]

I have read that brachytherapy is only used when the cancer is clearly confined to the prostrate itself, not the seminal vesicle. Is this incorrect?

[Tall_Allen in reply to Stellabell]

Brachytherapy as a monotherapy is completely different from brachy BOOST therapy.

[AlanMeyer Moderator in reply to Stellabell]

The kind of radiation that Tall_Allen is referring to is a combination of brachytherapy (planting radioactive "seeds" in the prostate) and external beam radiotherapy (aiming a beam of x-rays from an x-ray emitter that is outside the prostate into the prostate or, in this case, especially to the region surrounding the prostate.) So in answer to your question, the x-rays can be aimed at the seminal vesicles as well as at the prostate.

I had that kind of radiation treatment in 2003-4 and have had no recurrence of my cancer since then. I was told by my radiation oncologist that she planted seeds in the prostate and in an extension of the tumor that had penetrated through the prostate capsule wall. She also directed external beam radiation to the whole region one centimeter around the prostate.

There is huge debate between surgeons and radiation oncologists about which technique is better and I have seen studies on both sides.

I'm not an expert but, as I see it, a principal argument in favor of the brachy boost therapy (seeds + external beam) is that it treats the entire region, not just the prostate itself. The treatment of the area around the prostate occurs at the about the same time as the brachytherapy, so there is no waiting for 3+ months for the surgery to heal. Also, although there are radiation side effects the total may be less than for a combination of surgery plus radiation which gives side effects from both treatments.

Whatever you do, it is very important that the treatment be done by a real specialist. Most urologists do very few prostatectomies, just like most dentists do few root canals or oral surgeries. They're licensed and trained for it, but it's not part of their regular practice. They aren't like the guys who do one or more surgeries a week and have seen all kinds of complicating factors and faced most difficult problems multiple times before they see yours. Similarly, there are radiation oncologists who don't do very much prostate radiation. So get yourself an experienced specialist. You can generally find them at the teaching and research hospitals (see: cancer.gov/research/nci-rol... and can also get recommendations here.

Your concerns about ED and incontinence are important, but staying alive comes first. Your cancer is high risk. Be sure you get the best care you can. Also, the best doctors at curing the cancer are probably also the best ones at minimizing side effects.

Best of luck.

Alan

[Stellabell]

Thanks

[Hidden]

Sorry to hear your plight. The information given me when I was diagnosed put me in the same position. As starkly put above, the possibility of erectile recovery following such radical surgery AND radiotherapy are very poor.

There are some options for having "artificial" erections which you could explore if you wished when the time comes, (and if necessary).

For the time being it's best to take one thing at a time and focus on your treatment.

You can prepare some things for what might happen after. Hopefully you've been able to talk to those near and dear to you about everything and how you, and they, might be affected.

You don't have to be alone with this. As well as getting information on this forum, some posts can be quite supportive.

Good luck.

[Jeff85705]

First of all, I am sorry to hear of this diagnosis. It seems the recommendation of RP is appropriate from what you write. I'm glad you are getting a second opinion, hopefully from a medical oncologist specializing in PCa, and also a radiation oncologist to see if that might be an alternative (it might--might--save your erections). With both nerve bundles removed, the chances of getting an erection postop are slim to none I believe, since it is the nerves that stimulate a natural erection. With EBRT or brachytherapy, you might be able to retain potency, but I'm not sure if that treatment is indicated in your case, with Gleason 8 and 9 and invasion of the seminal vesicles, indicating the cancer has spread from the prostate.

In my case (nerve-sparing RALP surgery), I had variable incontinence for about 2 months. Now it is occasional drips. So you may not have permanent incontinence requiring pads or "diapers."

With the nerves gone, ED drugs probably won't help, but there are other treatments available with varying results. You should get a good book on PCa, such as the excellent "100 Questions & Answers About Prostate Cancer" by Pamela Ellsworth, MD. My urologist gave me a copy. I would hope yours would give you something like it.

Good luck on your journey (I used to hate that word, but it fits).

[Stellabell in reply to Jeff85705]

Thanks. The second opinion is at the Duke cancer center where you meet with a team including a radiation oncologist, medical oncologist and a surgeon to review all the options.I have surgery scheduled here locally in early November unless something from that Duke consultation changes my mind.

[ng27868168]

Stellabell, the best advice I can give you is simple. DO SOMETHING AND DON'T WAIT. Once your cancer escaped the prostate it became a whole different and more dangerous disease. Not my intent to scare you, but as a facilitator of our local PCa Support group I have seen more than a few guys wait to see what more docs have to say and look for "easier" ways to deal with the problem and later regretted the delay because the cancer isn't waiting.

[Stellabell in reply to ng27868168]

I understand. I have surgery scheduled for the first week in November, unless something/someone at my second opinion appointment, at Duke University Cancer Center the 12 of October, changes my mind. Thanks.

[tucker_man]

What was your PSA history before that biopsy? Have you been getting tested for years and it was slowing creeping up and then a sudden increase, or what?

[Stellabell in reply to tucker_man]

Yes, I was tested every year and the number increased slightly each time. It still never rose above 7 and I wasn't real worried. If I had not been offered an MRI to see if a biopsy was necessary, I would probably still not know I had a high risk cancer. I had heard so many horror stories about painful biopsies done in the urologists office I'm sure I would have skipped it. Once the MRI showed the tumors, I had a sedated and guided biopsy done. No worse that a colonoscopy, no pain and no ill effects.

[tucker_man in reply to Stellabell]

Wow, I’m surprised it was such a high grade cancer yet a relatively low PSA. I’m almost an 8 now and supposedly low grade low risk. Guess it’s true that the score doesn’t necessarily indicate the severity.