Well, I'm officially in the club now.

Hi Gumby, sorry you had to join this club. Since you have been on here a while, you probably already now that most of us would chime in and say watchful waiting sounds great with your diagnosis. The last thing you want is any treatment and associated healing and possible side effects. That said, some guys just mentally can't wrap their heads around waiting and "doing nothing", even though that is not what happens in that program. I honestly don't know if I could do that program and a small part of me is glad I just had to choose a treatment path, not IF I was going to choose a path.

I wish you luck with this new journey. Keep us posted. Take Care! -JR

Sorry to hear that news.

Having nodule often ends the active surveillance conversation. Surgery at you age should be fine. My brother had RP with Kasier here in NorCal and is doing just fine.

Still, before deciding on surgery, you should at least get a consult with the RO folks. You have options there that might be better.

Hang in there,
Andrew

A small nodule felt on DRE just means you are stage T2a (as I was). It is not a high risk factor. You are still low risk, in fact you are "very low risk." Don't let a surgeon frighten you - you have a lot of other doctors you should be seeing before making a decision. To be blunt about it - only a fool would make up his mind about something this important after a conversation with just one doctor.

It's actually called "active surveillance" rather than "watchful waiting" - a technical difference. Active Surveillance is the first route that a younger man like yourself ought to consider.

/pcnrv.blogspot.com/2016/08/can-man-be-too-young-for-active.html

Be sure to get a second opinion on the biopsy slide from Epstein's lab at Johns Hopkins.

I think Dr Castanos at Kaiser LA is now offering SBRT to low risk patients. But better yet, with your diagnosis, there is no rush, and you might want to consider changing plans next year so as to broaden the range of doctors you can avail yourself of.

Gumby, sorry you had to join the club.

The second opinion service at Johns Hopkins cost $250, unless it's changed in the last 2 years. It's money well spent. Reading biopsy slides is as much art as it is science, and you want an expert verifying the opinion.

You are getting good advice from the guys above

Gumby,

Very sorry about your latest results! You've gotten such great advice from the others here. I don't know that much your situation or treatments, but just wanted to let you know I'm think about you.

October 1, 2012, I was diagnosis with Advance Prostate Cancer (Adenocarcinoma) high volume, very VERY aggressive metastatic, Stage 4! My PSA was 130 and Gleason score 9. Numerous skull lesion most prominently on my right occipital lobe (skull); cervical spine particularly and thoracic spine, multiple ribs; fourth vertebral and my T12 vertebral was eaten up with cancer and I had 10 rounds of radiation and surgery (Kyphoplast on 11-6-13) to rebuild my T12 vertebral. My urologist told me that I had four to five years at best! 10-1-12, I started hormone therapy: I started Bicalutamide (Casodex) 50 mg daily and on 10-3-12, had my first monthly injection of Firmagon and Xgeva. Per my urologist, first told me the first line of defense of hormone therapy would only last 6-18 months before having to go to something stronger! MY WIFE, FAMILY AND I, WERE DEVASTATED to say the least!! As of today, I’m still on my first line of defense and my PSA has been <0.064 the past several years!!

Having several bulged disc, my pain doctor has found the right combination of medicine to allow the pain in my lower back, right hip/butt to be manageable! Have had several nerve block over the past several years at no avail!

During my journey with PCa, I've put my faith in God, a positive attitude, my doctors and medicine.

I'll keep you and your family in my thoughts and prayers!

Dave, in Bartlett, TN

Quite frankly, surgery for you is the very definition of overtreatment. This is what has sparked the marked decrease in general PSA testing and screening. Major invasive surgery for a very low risk cancer that may never need any type of invasive treatment is simply over the top.

If you do use treatment with curable intent, the various radiation methods will serve you very well. Permanent seed brachytherapy, High Dose Rate brachytherapy, SBRT/Cyberknife, traditional external beam IMRT/IGRT all are as good or better for cancer control and present far less in the way of side effects for most men. Your age of 50 is no factor in the decision as radiation therapy is used everyday for many people to treat cancer far younger than 50.

To really learn you must see the specific doctor that provides the specific treatment. And by all means do not rely on a surgeon to tell you about radiation therapy any more than you would rely on a radiation oncologist to counsel you on surgery. Your Kaiser membership may impose significant restrictions due to the HMO structure and closed provider network. We have other members on the board that have had difficulty getting to out-of-network specialists in other Kaiser areas. Not a knock on Kaiser, just an alert that you need to be aware of. That is why TallAllen suggested you may have to look at other insurance plans to get a broader range of specialists.

To help you look at radiation therapy options that are well suited for you I direct you to www.cetmc.com. This is the site that will teach you about radiation and more specifically High Dose Rate brachytherapy. This treatment can be used at you risk level with only one or two procedures so it is very convenient. It is also very effective. The website is by Dr. Jeffrey Demanes, the HDRBT pioneer who has been using it since 1981 and is the head of the department at the UCLA Medical Center.

And please, watchful waiting is not what you should do. The term is Active Surveillance and is significantly different. I would only pursue AS with a urologist that has a specific AS program with well stated protocol and can show you how many men have been in the program ad how they are doing. That your urologist uses the term watchful waiting is a bit alarming to me. I want him or her saying Active Surveillance from the start.

Hello Gumby and sorry for the news. You have already received some great advice so I will just emphasize two points, (1) get a second opinion from an expert on your biopsy pathology and (2) take your time and get expert opinions from different RO's before pulling the trigger on surgery which is the most radical and invasive choice.

Jim

Gumby26-

No one suggested getting just another second opinion anywhere, what was suggested was Epstein's lab at Johns Hopkins (Bostwick labs would also be a good choice). It is the gold standard. The cost is $250. Here's the link:

pathology.jhu.edu/department/services/secondopinion.cfm

Sorry, I got the name wrong - it is Dr. Cosmatos.

There is no problem waiting until January for treatment. I would highly recommend the doctors at UCLA. So whatever insurance plan allows you to use them would be best.

A small nodule does not raise your risk level, especially after biopsy confirmation that it is low grade.

The National Comprehensive Cancer Network (NCCN) is an organization of many of the top US cancer centers of excellence. Often, what they say is the standard of care. In their patient treatment guide (link below) see page 50 - Primary treatment for low risk. It clearly states: "The criteria for low risk include T1c and T2a tumors."

/www.nccn.org/patients/guidelines/prostate/#52/z

The active surveillance program at UCLA is run by my urologist Leonard Marks. He includes annual multiparametric MRIs read by one of the foremost radiologists in the world -Daniel Margolis, with confirmatory targeted biopsies as warranted.

Island Time-

You are misconstruing what I, and the medical community are saying. What I said was that a DRE that only finds one small lump, which is stage T2a, still keeps the patient very much in the low risk category and certainly allows him to be a good candidate for active surveillance.

DREs are use to stage prostate cancer and there are many other stages that a DRE could have come up with.

The American Society for Clinical Oncology guidelines for someone in your situation are as follows: "For most patients with low-risk (Gleason score ≤ 6) localized prostate cancer, AS is the recommended disease management strategy.

"ASCO qualifying statement: It is known that there is heterogeneity within this population and therefore factors such as younger age, high-volume Gleason 6 cancer, patient preference, and/or African American ethnicity should be taken into account in this recommendation. Young patients (younger than age 55 years) with high-volume Gleason 6 cancer should be closely scrutinized for the presence of higher-grade cancer, and definitive therapy may be warranted for select patients. For patients with limited life expectancy (< 5 years) and low-risk cancer, watchful waiting may be more appropriate than active surveillance."

Since we're telling DRE stories here I actually had my GP feel a nodule during a routine physical in 2013. She sent me to a urologist, who with my then-low PSA scores in hand (<1.5) did his own DRE and found nothing. I just shrugged it off until I had another physical last November in which my GP felt the nodule again, and figured it would be better to send me to a different urologist this time. My GP feeling the nodule twice, coupled with my now-elevated PSA (3.66), was enough for the new guy to schedule a biopsy without even doing a DRE.

If I were in your shoes I'd be awfully hesitant to treat this now just based on the information you have. AS should include another biopsy within a year, and I'd want to see that result before opting for treatment.

I think you are overestimating the accuracy of DREs. And some doctors are good at it, some are not so good. They may be useful as an initial screening tool to help decide who to biopsy, and how to stage the patient. But its use for ongoing AS management is controversial.

Most major AS institutions now believe that the decision to come off AS ought to be based solely on predominance of gleason grade 4. The use of DREs as part of AS maintenance has been questioned, and some no longer do it because there is no proof that it is useful for that. If you are getting periodic mpMRIs, and targeted biopsies, what is its value?