Which treatment???

I am about a week into the time to treat decision phase (even that is unsure). I had 4 cores 3+3 and one was upgraded to 3+4, decipher test showed intermediate risk. My doc who I trust suggests it is time to treat.

On these forums, I get many different opinions, which is why I am on them. I totally seek diversity of thought and experience to help sort out my next steps. This morning I read few RALP stories and the picture got grim.

The key question and I am sure this has been asked many times, is

How do you sort out the best treatment, not the best docs?

For now, I am assuming treatment is the right answer. I do plan to visit with a Radiation Oncologist.

Thanks in advance for your input. Denis

Thanks Jim that is the approach. It seems each specialist advocates for their specialty. I also read SEs are basically the same for each treatment long term. denis

There is an important sequence, in my opinion.

First, decide for yourself whether treatment is needed based on an informed decision (not based on what a doctor tells you). A second confirmatory biopsy will help clearly answer that.

Second, determine whether there are secondary influences which sway a decision...like heart issues which might make surgery risky. Doesn't seem to be any in your case, as is typical.

Third, age is a consideration. I've told many people that when I decided I needed treatment, I chose surgery because I was 50. If I had been closer to 70, I probably would have chosen radiation for the same case, just because I'd probably be less concerned about late-term effects from RT when I was 80-ish. I'd be less concerned about fecal incontinence (the most common late-term side effect) 10-years later at 80 than I would be at 60. You are already over 60...I imagine you can understand that consideration of not wanting to be dripping from your butt at your age.

Very similar to surgery, one should choose an experienced RT practitioner, but the guys who end up having really crappy results seem to pop up quite randomly from amongst both the more- and less-experienced practices...more from the less-experienced, but big overlap.

Post Edited (NKinney) : 9/29/2017 8:38:28 AM (GMT-6)

Good info. Part of the challenge I face is I am in the middle of everything. Not low risk not old or young very healthy no comorbidites. I certainly could be wrong and would like references on side effects. Any help is appreciated.

Denis - I know that you are active on several different message boards, so all I can say is to get an objective assessment of both the efficacy and potential side effects down the road, then you must bear in mind the apparent bias of each source. One of the replies above mentioned fecal incontinence 20 years later without getting any backlash. I was not so lucky in my reply to a different thread recently.

Each form of treatment will carry side effects and will have certain advantages, as mentioned in earlier replies above. Certainly I've had just about every side effect that could have possibly come from surgery. Yet I value the knowledge that the surgeon was actually in there and was able to adapt treatment to the conditions he encountered. In my case he used a 'broad cut' to remove most of the local spread that he found, at the expense of sparing nerve tissue that led to secondary side effects (ED and incontinence). I can see how those would be of greater importance to a man twenty years younger than us. At my age I was more concerned about what life will be like another 20 years from now.

This board is a tremendous source of valuable information, but take each account in context with the possible bias of each poster. As is often said, surgery will have side effects now, but radiation can have side effects later.

And good luck!

The empowered patient will not look to doctors to make the decision for him. It's not a matter of trust or competence. The doctor cannot know how it is to be you - what's important to you, what you can live with, and what you can't. As Jim suggested, you have to look inward. Here are some suggested questions to ask yourself.

Questions for yourself

• Do I need to see a pathology report to tell me how contained it was?
• If I choose radiation, can I live with the fact that PSA goes down over a number of years, with bounces along the way, and never becomes undetectable?
• If the pathology is adverse and PSA does not become undetectable, am I prepared to undergo adjuvant radiation with all the potential side effects that entails? (Your doctor has hopefully run a nomogram showing the probability of this happening)
• If the radiation doesn't work, am I prepared to have a biopsy and possible focal brachy re-treatment?
• Which bothers me more - the potential for incontinence and ED after surgery or the potential for retention and irritative effects after radiation? (given the probabilities of those side effects)
• Do I understand the other possible side effects of surgery? (e.g., infection, hernia, climacturia, penile shrinkage, stress incontinence, etc.) Am I prepared to take on penile rehab?
• Do I understand the other possible side effects of radiation? (e.g., fatigue, proctitis, hemorrhoids, frequency, urgency, burning while peeing, ED).
• Am I prepared to undergo radiation therapy and its side effects?
• Am I prepared to undergo surgery and its recovery?

I hope you will take your time deciding - there really is no rush, given your favorable diagnosis:

TA I am appreciative of the advice and I am taking my time. Please don't confuse active posting/frequent questions with anything but my propensity to research and seek input. I value both the scientific data and real experiences. I do need to be cautious about the small segment o the population that posts their experiences on these boards, while valuable they are just that a small, actually very small sample of guys who have been treated. However, diversity of input allows for better decision-making. Thanks, Denis

Progressing ! I went through surgery and recovery was definitely not a walk through the park - even at 48 years of age. I have seen threads on this forum and interviews by noted docs saying " if you are above 70, we need to see a parent consent for surgery " - but I really wish you the best and more.

Subdenis - in addition to the excellent points of TA - I would add

- if you want to again start peeing like a firehose - that's one advantage I now have

My suggestion based upon who I am..............And of course that is different from who you are.

First decide what is the NUMBER 1 MOST IMPORTANT issue. Breathing at ANY SE cost or less breathing time but higher QoL. You decide for you. That is not something that ANYBODY can tell you. YOU DECIDE.

Once you make that decision then look over as much data as you can about treatment options, SE's and survival rates. Remember some of the survival rates may be high but at what cost? This is where the data from the real life survivors is important. The Dr.'s can give you the numbers but the patients can give you the real time data.

Make that first decision based on who you are and what is most important to you and the rest of it will fall in to place.
Be well.