Newly Diagnosed-Unilateral Nerve Sparing/ Focal Therapies

Hello Portola - Sorry you have to be here. Get as many opinions as possible and as soon as possible. I think we had 5. My husband, could not have surgery. (Gleason 8) There's a surgeon in Columbus Ohio that is one of the best. His name is Abaza - Search for the best surgeon!!
The radiation side effects for my husband were horrible.

Hang in there!
Brooke

I would slow down on all fronts...there are treatment choices other than surgery that could preclude any nerve damage..;My guess is "your" (husbands) doctor may be a basic urologist who is in your "family" of doctors...second and 3rd or 4th opinions are helpful...there isso much more we and yourself need to know ...alas...weariness has set in for me in giving PCA advice...especially when spouses are doing the leg work...we are not a good mix...no worries tho...other "less seasoned"but mo fresher minds should be along to help you along this path...from the little information...of which I hold no judgement either way...You are a rookie in this as you mentioned honestly...any way what is provided...from my perspective... especially your spouses youth bodes well long term for his prognosis...good luck and the need for panic does NOT apply in your husband case...regards logo...Portola Valley...that's a nice place PS ahh I see the needed advice is rolling in like cool fog over the hills and valley of the city by the bay ...it brings a tear to me eyes...memories of a time and place

Hello Portola and welcome to HW. So sorry you have to be here especially at your husband's young age but please know that we are here to help and see you through this. My first piece of advice is, DON'T MAKE ANY RUSHED DECISIONS. Yes, I know I'm shouting but I have seen too many men (and their families) make snap decisions without proper research and come to regret it later. Specifically, here is what I recommend:

1. As Prato said, get the slides read by Dr. Epstein at JHU. He is the best and his reading will let you know as much as possible what you guys are dealing with.

2. Get educated on our disease. There is a sticky thread at the top of our forum for newly diagnosed patients. You mentioned Dr. Walsh's book and that is a good start from a surgical perspective. Get some balance and read Dr. Mark Scholz', "Invasion of the Prostate Snatchers" and/or a more recent book of his, "The Key to Prostate Cancer."

3. Get multiple opinions on multiple treatment options. UCSF is a great place and they offer great doctors with multiple specialties. If hubby's biopsy results hold up then most any of the mainline options will likely cure him. Surgery of course but also SBRT, HDR Brachy and LDR Brachy are options that should be discussed with expert doctors. It is unlikely that your diagnosing uro-surgeon has much expertise in the radiation options hence his immediate recommendation for surgery. See the various radiation experts as well so you can make an educated decision.

4. You are perhaps getting some BS from your doc about the long term effects of a radiation treatment. Ask the radiation docs about this. Studies posted on our forum show the odds of long term radiation damage from modern prostate radiation treatments to be about he same as dying on the table during prostate surgery, i.e. very low.

5. The Big Three in prostate cancer treatment are cure, continence and sexual potency. Other stuff is noise. Surgical advocates will point out that your husband is young so has a great chance of retaining his sexual ability with surgery -- and that is true. What radiation advocates will point out that if the surgery yields a bad sexual outcome then a young man has a lot of years left to live with that. My assessment is that surgery gives the advantages of immediate knowledge of pathology and serves the psychological perspective of someone who needs to "get it out". Radiation cures equally well but you don't get the immediate pathology; you do get a better chance of retention of sexual potency. This becomes a personal decision as to what is important to you guys. My wife initially wanted me to "get it out", i.e. remove that cancer! After we studied the options a bit we both came to the conclusion that what she (and I) both wanted was CURE. Then the other side effects came into play.

Good luck. Please stick around and we will help you get through this. BTW, there are plenty of wives on our forum who have done the legwork/research for their husbands/partners so you are not alone in this. But also please tell hubby that he is welcome here as well.

Jim

Portola - Welcome, you and your husband are now part of the family.

You've gotten great advice from knowledgeable members so far. Good you're reading Walsh's book; he's the grandmaster surgeon. But he is a surgeon. So second opinions from others - radiation oncologists as well as other urologists - is something I would second, third, and fourth. I saw 5 of them.

Others far more experienced than I (not to speak of the docs of course) can tell you more particulars, but on the whole Gleason 3+4 is different, and better, than Gleason 4+3.

Dr. Scholz's book (well, both of them, but especially "The Key") is a valuable resource and I recommend it. It's 30 or so chapters by all kinds of experts so presents a balanced view.

The main thing is not to panic. Yes, you most likely will want to treat this, but take your time to research options. I say most likely because I know of one guy personally whose 3+4 was downgraded by Dr. Epstein to 3+3. By no means am I saying that this is likely or even a strong possibility. But sending the slides to him is the smart move no matter what.

The previous members have also written good things about treatment possibilities. I also know personally of 3 guys who've had SBRT and are in great shape, one is even 10 years out and all are much older than your husband.

There are many, many real experts on this disease out there. Including Walsh and Scholz I would check out a YouTube video or two by Dr. Lawrence Klotz from Toronto.

Please keep asking questions and keep us posted. Everyone is here to help.
David

Rule one. Only get treatment advice from a doctor that is board certified in that specific treatment. In other words, Assessment of radiation Treatment should only come from a specialist radiation oncologist, not a surgeon/urologist. Since there several types of radiation therapy that can be very effective for your husband (brachytherapy both permanent seeds and high dose rate, external beam both traditional and hypofractionated like SBRT) you will have to have a few consults as typically no radiation oncologist does them all.

Radiation therapy does not introduce a greater risk due to his age. After all, if the surgery fails, the same surgeon/ urologist will say “well now we need to use radiation”. If the doctor is saying he can’t spare a nerve, this could indicate greater risk of escape that may mean the surgery won’t be successful. about 35% of men that use surgery also need to have salvage radiation. That is the worst combination for negative treatment side effects and should be avoided.

As to focal treatments, most have proven to be ineffective as PCa is rarely focal. It is most always a multi-focal disease. How many biopsy cores were positive? And remember the biopsy samples only about 1% of the gland and the MRI will not pick up small or microscopic lesions. And also understand that HIFU is not FDA approved for PCa treatment because it has proven to be poor as an initial treatment. My best advice is to stick with tried and true proven methods used successfully by many thousands and millions of men.

You have received excellent advice to learn more, consult with several different providers and get a second read on your slides by either Bostwick or Epstein. When I was diagnosed I met with three surgeons, two radiation oncologists and a medical oncologist in three weeks. With those assessments and my research I was able to make a great treatment method decision that has served me very well. After nearly 10 years I continue to pull undetectable PSA and have no negative treatment induced side effects. All my nerves are intact and everything works just fine.

Relax, take your time, learn. Most of all, live. He has not been given a death sentence.

Thank you everyone for taking the time to respond to me. Your advice and recommendations are so very much appreciated. I have started my notebook and will be following up on all of them.

Your words have also given us comfort and support as we start down this path.

I will keep you posted. Truly thank you-- you have made a big difference to us.

Portola - You've definitely come to the right place. I'm 54 and about to start treatment. For me, the key was to gather as much information as I could about the options that were available to me. A large part of that information came from reading posts on this forum!
For me, there was a sense of relief once I got past the decision of choosing which treatment I was going to pursue, and now I'm fully committed to go forth with confidence and determination. You and your husband will get there too, and make a personalized decision.
I'm glad you found this forum, I feel lucky that I did, there's some fantastic people here.