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Re: New Diagnosis - Looking for Advice

My Goodness, what a great discussion. Onr thing I didn't see mentioned here is the benefit of getting to know guys who have already been treated for PCa and how it affects their daily lives. I wasn't a "youngster" when I was diagnosed 5 years ago at 67, but I go to the gym and watch my diet
and unless I crashed my motorcycle, I expected to live more than 10 years. I was diagnosed with GS 6 in two cores each < 5%. ALL my Drs recommended treatment, but I decided to attend a meeting of the local PCa support group UsToo. I would highly recommend this for anyone weighing the pros and cons of any form of treatment including AS. And I would recommend attending many meetings--get to know the guys. They will be more than willing to share their stories with you. In the five years I have attended
UsToo meetings I have yet to find anyone who regrets being treated or their particular choice of treatments. I don't how it is in other chapters, but
in my Us Too chapter out of 50 or 60 guys, I was the only one doing AS. I remember one guy in his mid 50's who was extolling the virtues of robotic RP who told me that total ED and complete incontinence (> 3 pads a day) was a small price to pay for his life.

I wished I could have stayed on AS forever but unfortunately I apparently
had an agressive form so that after 2 years on AS, my last biopsy showed lots of GS8 with many cores positive, several with over 90%. I knew then I must choose a treatment, but after 2 years talking with with PCa suviviors (and reading Bob Markini's book) I chose proton therapy--a treatment that not a single guy in my UsToo group had ever heard of at the time. Now 3 years post-treatment I can join my brother UsToo'ers
in saying I'm glad I chose the treatment I did. I guess the bottom line is to do the "research" until you are comfortable with your course of action-whatever it might be.

Re: New Diagnosis - Looking for Advice

Rene
My husband (in his last 40's) was recently diagnosed with prostate cancer. Gleason index 3+3. Five percent of 1 core was positive. We are thinking about surgery so far. Please help with suggestions, recommendations for surgery and life after surgery.


I forgot to add something important. My husband had a septic shock during his biopsy and had to take a lot of antibiotics to come out of the ICU. The prospect of another septic shock is scary.

What is the probability of ED and recovery from ED?

Re: New Diagnosis - Looking for Advice

If you use a top surgeon your husband may be able to function relatively normally as he is young. Perhaps need to get assistance from Viagra etc. Lose about one inch from his erection. My operation lasted less than one hour and I had no real pain afterwards. Catheter is a nuisance and stool softeners are important for about a month afterwards. Patient needs to walk a lot after surgery to get rid of gas which could be painful. Your husband must use a very top surgeon however if he chooses surgery.

Re: New Diagnosis - Looking for Advice

Hi Rene…and all

I have done my best to keep this brief, but there is still a lot of pertinent information to cover. I do not have Dr. Marckini’s book, but I do have Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer". For the record, Rene, he is a world-renowned RP surgeon at Johns Hopkins, arguably, one of the best cancer centers in the world. They did a sexual function (and urinary incontinence) study of younger men with an average age of 57 (89% of these patients had both of their neurovascular bundles preserved). At three months, 38% of these men were potent. At six months, 54% were. At twelve months, the number increased to 73%, and at 18 months, 86% were potent (potency being defined as an erection sufficient for vaginal penetration and orgasm). Keep in mind that these figures reflect surgeries performed by top-notch RP surgeons on staff at the hospital. The doctor himself stresses what bobbyboy pointed out to you in his post, and that is that it is imperative to use a surgeon recognized for his excellence in this field in order to expect these kind of results.

The Dr. also has this to say on the subject in another section of his book, and I quote: "In most skilled surgeons hands, if both neurovascular bundles are preserved during a RP, potency should return in at least 80% of men in their 40s and 50s, and in 60% of men in their 60s". He is also quoted as saying that you should "be very patient. It can take up to four years for some men to experience FULL recovery of potency. Your body has been through a trauma; it needs time to recover". (FULL is the key word there as he points out that most patients experience an improvement in their erections over time, adding that the quality improves month by month).

Speaking of the quality of a man's erection after RP, he says that when a younger man undergoes a nerve-sparing radical prostatectomy, it's likely that about 20% of the nerves involved in erection are damaged, 60% are preserved normally, and 20% are temporarily disabled but eventually recover. So, at best, a younger man after prostatectomy has about 80% of these nerves left for erection. There is also another problem he points out with erections in men after RP and it is called "venous leak". In a nutshell (this is me talking since the quote is a bit long) the penis must be fully engorged for the veins to clamp down so as not to allow the blood to flow back out. Early on, after RP, the blood flow into the penis may not be rapid enough to cause these veins to automatically close. So, if a man never gets a full erection, there is a constant leak of blood out of the penis that affects the quality of the erection even more.

Now, in finishing, the Dr. has so much more to say, including recommendations for how you can continue to enjoy your sex life during this difficult transitional time, but that is something that you would have to buy the book (or check it out at your local library) to read about since it is far too detailed to go into here.

Best wishes
Alan M in the USA

Re: New Diagnosis - Looking for Advice

Rene:
I'm attempting to get an authoritative answer from an author who thoroughly researched your question. See a copy of my e-mail below:

Today at 8:09 PM
D. M.

I'm in Texas without a copy of Marckini's book. I would appreciate knowing what he says about the DISAVANTAGES of surgery in order to answer a wife's question she raised on YANA.

I hate to inconvenience you like this. but I would like to answer her question. She is particularly interested in the likelihood of ED if her husband opts for surgery.

Regards Don O.

P. S. Maybe another participant on this site can provide us with MarcKini's research findings on this topic.

Re: New Diagnosis - Looking for Advice

Rene:
I asked Bob Marckini if he could help me respond to your question; his response appears below:
"Huge mistake to do surgery for a Gleason 3+3 in my non-medical opinion, Don. One thing they should consider is Active surveillance. With surgery, including (and maybe especially) DaVinci robotic surgery, the likelihood of impotence is about 75% and incontinence about 35%."
Mr Marckini also sent references to 17 technical articles describing outcomes of surgery and proton therapy. If there is any interest on your part I will do my best to see that you get them.
Regards Don O.

Re: New Diagnosis - Looking for Advice

Remember that in ten years, when you may need treatment, the treatment will be better and the side effects less.

Re: New Diagnosis - Looking for Advice

Hi,

When I was diagnosed in early 2014 my wife and I went on a search for information. Talked to our family Doctor, a radiologist, a urologist (laperoscopic) a urolologist (robotic) and several friends who had been through what we were going through.

In our quest for information we found a book called "The Decision" by Doctor John McHugh. He is a urologist who had Prostate cancer. The book is not about Prostate cancer per se but is about how he made his decision on what treatment to undergo. His decision making process helped us reach a treatment plan that was the best for us ... and probably saved my life.

Through all of this process keep this in mind. What worked for your friend or other Prostate cancer patients might not work for you. You must know your cancer details, you must understand the benefits and risks of each treatment, you must know your underlying health issues and you must know what you are willing to live with.

Doctor McHugh's book will lead you through the process of making the best decision for you.

best regards,

BW

Re: New Diagnosis - Looking for Advice

Hello Rene

I have a couple of suggestions, from when I was in your situation in 2008. I'mow starting my 6th year following my Proton Radiation treatments and my PSA is 0.09. (You can find this also under my history page.)

I found a couple of books that were of great value to me. The first is by Robert Marckini, about Proton Radiation, which was my choice of treatment 6 years ago, and I went down to the Proton Center at the University of Florida at Jacksonville. Very powerful book which sent me in the right direction. Basically the proton beam travels only 1/2 of the way through the body, and when it reaches the target point in the prostate gland it explodes, instead of going completely through the body. A lame description I know but you can research a better definition.

Another book I examined was Dr. Patrick Walsh's Guide to Surviving Prostate Cancer. Written in 2001 and updated in 2007, I suggest this book as it is, or was, the bible regarding prostate surgery, and it provides a number of drawings of the prostate area which show how delicate this operation is. Beginning on page 273 of this 500 plus page book there are 8 drawings of the surgery required for the removal of the gland. I found it very sobering to see these drawings, believe me. And one other book from 2005 is a Primer on Prostate Cancer, written by Stephen B. Strum and Donna Pogliano.

I wish you the best of luck......

charley coryn, 77, lancing, Tn. USA

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