Gleason 3+4, Age 50

I've been on AS with Gleason 6 for 8 years, but now (Since March) have Gleason 3+4=7 (grade group 2, pattern 4: 5%) involving 2 cores (combined:9 mm, 30%). I've seen all the doctors, done all the research, and I'm set for surgery Sept 26. Yet I'm still hesitant because of the side effects. I have received plenty of good advice on this forum over the years. Right now, I'm most interested in hearing specifically from those who had a lower grade cancer at my age. What did you do? Why? How did it go?

I have the benefit of having a close friend who is a urologist who I have had extensive discussions with, and who I know will shoot straight with me. He agrees with my Dr. (Dr. Roehrborn) that while radiation has come a long way and would be effective, at my age and given likely organ confined disease, surgery is the best option. That may be true, but it still seems like side effects are less for radiation, and so I'm having a hard time letting that go. But I also understand the side effects with radiation happen further down the road, so you can't compare them right after treatment.

-Jason

Thank you Tudpock. Yes, I've done everything you suggest, but it's still a difficult decision. The only thing I didn't do but wish I had (and may still do) is find someone like Scholz who has no dog in the hunt. When I talked to surgeons they recommend surgery and seem to downplay the positives of radiation, and emphasize the negatives, while the radiologists do the opposite. Very frustrating. Even my friend who is a urologist is a surgeon so he is biased in favor or surgery, so I have to take what he says with a grain of salt, too.

One thing I keep reading and being told is the the side effects from radiation can occur down the road rather than right after the treatment. Have you experienced that at all?

Michael,

I have seen a radiation oncologist, but they are biased too. I would like to see a Dr. who was neither a surgeon nor a radiologist, but still an an expert in the field, if I could find one.

JRK said...

One thing I keep reading and being told is the the side effects from radiation can occur down the road rather than right after the treatment. Have you experienced that at all?

Jason, in specific answer to your question -- no, I have not experienced any significant side effects ever (14 years). I mentioned reduced ejaculate, which is common to all treatments, but that is no big deal since "it" still feels the same. Early on I had some mild urgency and frequency, handled by Flomax, but that subsided fairly quickly and did not interfere with my life at all. My sex life has remained vigorous and urinary/bowel functions normal. So, for me what's not to like about my choice - easy procedure, quick recovery, cure and no side effects.

You mentioned that you saw a "radiation oncologist" who of course was biased. But I'll also tell you that RO's are specialized as well and may or may not have experience or expertise in all radiation procedures. That's why, with a "mild" case of PCa like you have, that it's probably worth the time to seek out experts in 3 radiation procedures: LDR Brachy, HDR Brachy and SBRT. All of those have excellent results and generally relatively mild side effects.

It's rare for patients with your stage of disease (same as mine) to consult with prostate oncologists (like Dr. Scholz) since those guys generally handle more severe cases. But it certainly is possible. Dr Schlolz and Dr. Lam in his office do telephone (video?) consults but I think from Dr. Scholz videos you can guess what he would advise. In the back of his book, "Invasion of the Prostate Snatchers", there was a list of prostate oncologists. That list is probably a bit dated now but it's probably a good place to start if that's your intent.

BTW, did you get your latest biopsy slides read by Dr. Esptein at Johns Hopkins? Since you've been here awhile you know that he's the gold standard and it's important to make sure that diagnosis is correct.

Again, good luck. We are here to help. Most of us have our biases but our final intent is to help you thru this so that you are cured with a remaining quality of life.

Jim

JRK, The risks of side effects was key in my decision. I estimated surgery had a fifty percent chance of leaving me with reduced urinary or sexual (or both) function. For SBRT the problems I could expect were minor and short lived. I did hear that with radiation ‘problems’ were further down the road. When I checked with the radiation experts at Cleveland Clinic, they assured me that modern radiation is highly effective and extremely safe and that long term side effects are extremely rare. I have seen estimates of ‘problems’ being <1%. In more than 6 years on this forum I have not seen a single case of a serious complication from anyone treated with modern guided radiation as a monotherapy. No question that sexual and urinary issues can be serious and all too common with surgery. No matter what choice of treatment you decide I always recommend seeking out the very best practitioner and team you can find.

JRK, this is the dilemma, isn't it?

I was diagnosed just after my 56th birthday in the fall of 2014. I opted for surgery, and I have had a really good outcome. I've been non-detectable since, and I have no significant side effects. 2.5 mg/daily of Cialis keeps things working just fine.

I know there are some in here who say pretty awful things about surgery, and who suggest that it should be banned. IMO, actual data is hard to come by, but I suspect that most surgery patients, particularly with low to intermediate grade disease have decent outcomes, and so we never hear from them. If you've made your decision and are at peace with it, then spend the next few weeks eating healthy, walking a lot to maybe lose that pound or 5 you need to lose, and then go get it done!

Mattam,

You are correct, I'm still not certain about surgery. I scheduled it because it's now been 5 months since the gleason 3+4 biopsy and I still haven't started treatment. But I think I am leaning towards putting it off a little longer until I'm certain. Maybe I'll go down to MD Anderson. Nothing wrong with UT Southwestern here in Dallas, but I understand MD Anderson takes the "team approach." Just FYI, I do have weak stream issues and having to get up a lot during the night, so I guess that's a factor in favor of surgery. Just not sure it's enough.

I agree with everything above — all good advice. I was 50 when I was diagnosed with 4+5, organ-confined. Later downgraded by MSK to 4+4 and required ADT and SRT only months after surgery. I suffer from ED and some incontinence. If I were to do it all over, I would’ve consulted with a major cancer center after biopsy, such as MSK or MDA. With that said, you mentioned MDA — go there and get a team-based recommendation. If radiation is a viable option, I’d take a very hard look at that if I were you. Wishing you the best.

JRK, no doctor that does not do prostate surgery or perform radiotherapy can possibly be an expert on either. Quit looking for such an unicorn. Specifically go to the true board certified high volume specialist for the expert assessment for that specific treatment in making your decision.

As has been earlier stated, you appear to be a great candidate for two of the very best radiotherapy options, SBRT/Cyberknife (external beam radiation) and High Dose Rate brachytherapy (interstitial radiotherapy). Each provide equal cancer control to surgery, better if some of the cancer is already outside the surgical area, and each present generally less significant treatment based negative side effects. Both are much better in delivering more convenient treatment then surgery with essentially no significant physical invasion and inherent tissue damage or recovery time. SBRT can be done in 5-6 30 minute procedures over a 10-14 day period and HDR-BT can be performed in one mono-therapy outpatient procedure. Neither require cutting, overnight catheters, recovery restrictions on lifestyle, etc. Both are very effective for cancer control and minimal expected treatment side effects.

If you have specifically been assessed by a radiation oncologist that does SBRT each week and a radiation oncologist that does HDR-BT each week, then you have done your homework. If not, then I suggest you get these done. Never let a person/doctor who does not specialize in and regularly perform a specific treatment to advise you on that treatment. Go to the true expert that does in each case. When I was diagnosed I met with three different surgeons, two different radiation oncologists and one medical oncologist all in a three week period. Then, my treatment decision was made.

And as to bias, of course it exists and much of it is positive. It is your job as a patient to distinguish undue and incorrect bias from professional confidence that may appear to be bias. A simple way is to ask for the actual tracking and experience of the doctor in treating men in your situation. If the doctor or clinic can not or will not produce and provide such information, then move on to someone that does. And appreciate the very positive nature of high volume procedure performance. Use the true specialists for specific procedures they do several times each week. These are the experts.

Not knowing anything about your education, training and professional-vocational expertise, you strike me as someone that works within an objective, measurable and results and evidence based vocation/profession. If my presumption is in line, then expect from the doctors what is expected from you in making decisions, allocating and utilizing resources, and considering the cost-benefit and risk-reward of alternative choices and actions. Best wishes and continue to ask of us information based on our specific experience that can be of use for you.