Second thoughts on the best treatment

D, it's a tough call no doubt. I can't speak to the radiation side, as I had an open RP 18 months ago. I never even consulted with a RO, as at 51 at the time, I just wasn't comfortable with that decision.

I'm pretty much continent, but have an occasional leak--mostly during something stressful. I joke that I "pee like a girl now" because when I have to go----I have to GO!!!!! My nerves were spared, and I can 'get it up' so to speak, and I understand that the more time the better. The orgasms are fine, though I admit I miss the 'man juice' aspect more than I thought. My wife? Not so much, lol!

So, while I think you'd be fine after surgery, I'm certainly not in a position to tell you it's better than radiation. Just offering that it isn't always so bad, either.

Best wishes on your decision.....

MD

Hello DG and welcome. Sounds like you got a fairly typical sales pitch from your surgeon and you are very smart to look at other alternatives. With your stats the radiation options are likely to cure you just as well as surgery but with a significantly lower chance of onerous side effects like incontinence and ED.

It's pretty clear that most docs seem to specialize these days and it's unlikely that you will get good radiation advice from a surgeon. I suggest you consult with experts in HDR Brachytherapy, LDR Brachy and SBRT. These are all excellent choices.

I tend to oversimplify so please take this with that in mind. I look at the value propositions of the choices. With both surgery and radiation you are likely to get a cure. With surgery you get an immediate pathology and the psychological advantage of "getting it out" (if that is important to you). With the radiation options you get a better chance of living life without bad SE's like incontinence and ED.

RE the age factor, one of our very smart guys here makes a case for younger men to make a choice for radiation since younger men would have to live with the bad SE's for a longer time. Makes sense to me.

Good luck and let us know how we can help.

Jim

DGS50 said...
....How do you decide what treatment to have? - seems young guys go for RP (or are suitable for this) and older guys for RT (not fit for RP). Do any younger guys go for RT?...

This is an extremely stressful period of time trying to figure out what path to take. First step is finding an impartial urologist who won't promote surgery automatically and give you the pros and cons of either approaches. Also be sure and have a consult with a radiation oncologist.

Here's a few random thoughts....

My urologist didn't like to perform surgery on guys say about in the 65+ year old range. He was okay doing surgery on me because I was in really good health. I don't remember the statistics but surgery is the predominant choice for dealing with PCa when intervention is required.

I liked the surgery path, get it out, take a bunch of lymph nodes and evaluate the spread of the cancer with a path report. Depending on the path report, a Decipher test can be ordered providing an evaluation of your risk category. Also you get very quick feedback on the success or failure of the surgery - PSA should be undetectable after about three months (mine was undetectable at six weeks post surgery.)

If you want to go the surgery route, it is critical you have the right guy at the da Vinci console (or actually holding the tools himself). At least 500 RALPs is an informal benchmark for competency, I was looking for a surgeon with 2,000 or more. My surgeon did a fantastic job, I was mostly continent as soon as the cath came out and only have some stress incontinence. Onc side of the nerves were spared and I was on-track to get little willie back in business. Then with subsequent treatments, little willie is MIA.

Unfortunately I had a positive node so I had to go to the next level of treatment with Lupron and salvage radiation so I get to wonder about possible future SEs due to radiation after all.

I just didn't like the idea of radiation as a primary treatment because of possible side effects that might not appear for a few years, then you get to watch your PSA never drop to undetectable.

Hello,

I'm also a surgery veteran, having RALP in Oct. 2016. I saw 4 surgeons from diagnosis to treatment. All felt that even at age 66 I was an excellent candidate for surgery. I was healthy, no prior surgeries, relatively athletic, and average weight. None of the surgeons made any promises about how well I'd do on the SE.

I met with a RO. He spent a long time with me outlining the treatment he could provide, as well as explaining my diagnosis in detail. He was confident that either radiation or surgery would "cure" me. SE from radiation would be less initially, but ED could get worse over time. He said radiation ages the nerves faster than the normal aging process.

I chose surgery because I wanted the cancer out of me, and really thought I'd bounce right back from the operation. I went for a surgeon with over 2,000 operations. I believed firmly that more experience was key.

I experienced some complications from the surgery. I wrote about my experience here. Search on my handle and you'll find my story about surgery at the U. of Chicago.

Now I'm fine, undetectable PSA for the first two tests. I had no continence problems. I'm taking my time on ED therapy, but have a feeling that I'll be as fine as possible with time. Nerves take a long time to heal, and you must be patient.

Pick the treatment you feel comfortable with. Generally, the younger you are, the better surgery looks. But it is personal decision. Talk to a few different RO, as there are several types of radiation treatment. Read what you can here. The forum has a wealth of information about radiation and stories from patients like you.

Good luck.

Congratulations on your self-empowerment - taking responsibility for your own health decisions is a major step. I had a similar diagnosis at a similar age. After meeting with 6 doctors and doing a lot of introspection and study, I decided on SBRT (which I believe is available in Singapore). I don't know if HDR brachy is available there, but that is an excellent choice as well. If you don't know what I'm talking about, you haven't done enough investigation (I and other HW members will answer any questions). LDR brachy and surgery are good options too.

It is even possible to stay on active surveillance, if you so choose. Based on the comment you made about age, you may be interested in the following article that discusses age for active surveillance but also gives age-related info on other therapies, which may surprise you:

Can a man be too young for active surveillance?

As for how to decide, here are some questions to ask yourself. It may be a good starting point.

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, Peyronie's, 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 didn't mention it because it's so rare, if it happens at all. I didn't mention any side effects that occur in less than 1% of patients. That would include such rare events as seeding the cancer via surgical instrumentation and fistulas.

The most recent analysis of 19,538 patients found no evidence of secondary cancers due to radiation. All excess secondary cancers were attributable to age and smoking.

Risk of second cancer following radiotherapy for prostate cancer: a population-based analysis

This was exactly what MSK found in its own database:
Secondary cancers after intensity-modulated radiotherapy, brachytherapy and radical prostatectomy for the treatment of prostate cancer

This is an actively researched area, but all estimates of risk are below 1% if they were able to detect any risk at all:
/pcnrv.blogspot.com/2016/08/the-real-risk-of-secondary-malignancies.html

BT and IMRT is a more comprehensive treatment than just surgery -- similar to surgery and SRT. you have quite a bit of cancer so I would factor in the likelihood of possibly needing SRT. we took the kitchen sink approach to my cancer and i'm in my 7th year of remission and I've never once been incontinent and I can have sex with the use of Cialis, which I take daily. i'll admit i'm biased against surgery and in my years here I can say with certainty there is a higher incidence of permanent SEs with surgery, especially if it's followed by SRT.

ed

If surgeon is experienced, preferably very experienced, surgery effects are very manageable. I started walking 12 hours out from surgery while still in the hospital. Released later the same day, 17 hours out from surgery. Catheter for a week. Pain from surgery was minimal -- never took a pill, no oxy for me, old school. Went diving in the Cham Islands off Vietnam three months after surgery. Never had incontinence. Alas, never got another full erection. Not surprising, I was 66 and nerve bundle taken. Can still fool around, still orgasim, but no it is not as good as it was before. Still not chopped liver though. Still good to be on this side of the grass. You are younger. Tougher thing at your age. Best wishes.

NewspaperLover

It may be challenging to find a Singapore RO who practices HDR brachy monotherapy for prostate cancer - it's not easy to find one in the US either, unfortunately. SBRT/CyberKnife may be easier to find there. There is no reason anymore to endure 40-44 treatments of IMRT (or protons). LDR brachy (like surgery) has a steep learning curve - make sure the RO has done a lot of them.

Incidentally, what I consider to be the best radiation therapy - carbon ion - is available now in Shanghai (it is fairly new there) and in Chiba, Japan (it has been operating there much longer/more experienced). I don't know if they treat non-citizens. FWIW - here's the link to the Chinese clinical trial:
/clinicaltrials.gov/ct2/show/NCT02739659

One point to consider is the likelihood of the cancer extending beyond the prostate into seminal vesicles or other tissues. When that has happened, the surgeon must cut more out and that increases the probability of permanent or long-term ED. Yours does not seem like an advanced case, so perhaps that means you would come out of the surgery with few SEs. This is something you should consult about with your doctor. The cure rates are very similar between surgery and radiation. Good luck.

Thanks for the insights - I am now looking at carbon ion therapy which looks interesting. I will read the Andy Grove story too.
Really appreciate you sharing your knowledge and experience