Show of Hands Please

Gleason 4+3=7; Age 69; Robitically Assisted Radical Prostatectomy (RARP) 3/18; pathology staging after RARP biopsy pT2(organ confined); pN0 (no positve regional nodes).  I went with what the doctors (Surgeon and Onocologsit) said.  Cancer contained to gland.  Surgeon had a suspicious specimen biopsied during surgery near the bladder neck (negative for cancer).  If the suspicious area would have been cancerous, the surgeon would have pulled out of the RARP because in his opinion the cancer would have escaped the gland (no need for surgery). Age and quality of life should always be considered. You are 17 years younger than me.  You need to understand, they removed the gland; seminal vesicles; urethra segment;  pelvic lymph nodes; and had a bladder neck reconstruction.  None of these things are coming back.  Hence some side effects, incontinence; erectile dysfunction; urethra shortening.  At the 20 month point I experienced an inguinal hernia.  Currently, I am fully continent (I do not wear any pads); ED: I was running around 85% recovered, tried some Cialis the other day 95 to 100 % recovered.  More importantly my PSA is undetectable.  So I may have dealt this cancer a knock out blow.  I have another PSA test this month.  If undetecatble again, they will start testing me yearly.  The decision I made was my decision based on what I read; friends (survivors) I talked to; and what the doctors recommended.  I am telling you of my experience, no two are alike.  Good luck on your journey.

Contrktr,

Welcome to the club and this Forum that nobody wants to join.

If you want to read my story, you can go to this link below and scroll down to my January 17, 2020 update.  There are also additional links in that update that will delve into greater detail my own experiences with PCa and its treatments.  I've gone through a robot-assisted radical prostatectomy, radiation therapy, and hormone therapy.  I have encountered just about all of the negative side effects that one can encounter from these treatments.

https://csn.cancer.org/node/299431

Bottom line is that I am still here, and I enjoy a good quality of life, and I expect to be around for many more years of quality life.

One recommendation that I would make to you is to find and engage a Medical Oncologist (not a Radiation Oncologist), as a Medical Oncologist does not have any predetermined preferences toward surgery or radiation treatments. A Medical Oncologist can be your primary source of PCa medical monitoring, treatment advice, and general guidance for your entire PCa journey.

I will cut to the chase by listing below a recent post of mine, regarding looking forward in life, versus backward, as I firmly believe that in time, you will need to make this transition as well.

'I believe that a major part of the solution to anxiety prior to the doctor visit, and to the whole PCa journey as well, is to totally and fully accept the fact that PCa has crossed your path in life.  It does not matter how or why it happened, and the lack of acceptance does not change any of the future outcomes associated with your PCa journey.  Accept the fact that PCa has crossed your path in life, and move forward in life, day by day, making the most of each day.  Yes, it is not an easy acceptance, and some PCa patients may never reach that point, but it is very much required, and the sooner the better, for both your personal state of mind and the relationships with the folks around you.

In my opinion, life is like an extended game of cards.  You are dealt many hands of cards during the card game of game, and you have absolutely no control over the cards that you are dealt in each hand.  What you do have control of, however, is how you play those cards that you are dealt.  Play the cards that you are dealt in each hand in the card game of life to the best of your ability, and then you have done the best that you can do for yourself, and equally important, for the folks around you.'

We are all here for you, as we share a common PCa journey.  Everybody's PCa journey is somewhat unique, based upon individual factors, but overall, we share the same journey.

I wish you the best of outcomes on your PCa journey.

con,

Like everyone above, I will state that no one here can tell you what is "right" or "best" for you.   It is essential to speak with both a surgeon and some radiation oncologists, and then decide for yourself.  There are certain parameters that indicate when a certain treatment mode is suitable or less suitable, but these, in most cases, have significant overlap.  For instance, surgery is in some cases best for cases that are very UNlikely for metastatic spread. RT is almost universally considered better for confirmed (or highly likely) cases of metastasis.

I had a highest-ever PSA reading of 4.1, followed by biopsy.   One core positive, staged at 1.  Robotic surgery a few weeks later proved it was actually Stage 2, but no metastasis.   I am PCa free now at 5 years later.  I have 95% potency with no "blue pills", and have better urinary control today than I had prior to prostate removal.  I was 58 at surgery, 63 today.

I had serious, chronic prostatitis, for 25 years; this was confirmed by the pathologist after removal.  If a urologist told me that I had a PSA of 10, and then said he wanted me to take antibiotics and be retested in six months, I would walk out of his office and never return.   Most prostatitis flares are non-bactrial and non-viral anyway; antibiotics, in most cases, do NOTHING to improve the circumstances.  That is, they are not "infections" of any sort, just inflammed tissue.  I learned this in a book written by the former Director of Surgery at Sloan-Kettering Cancer Center, NYC -- Dr. Peter Scardino.   You need to get away from Dr Dumbo, whom you have been seeing.

You are correct: guide your own health.  An absolute or 'static' PSA result (one result, not compared to others) tells little.  What is much more informative is your PSA vector, or doubling rate:  the degree of increase over a year's time (any given 12 months). 

With a PSA of over 10, you need curative treatment; in other words, no active survellance would be approved by most doctors.  Proton Radiation is starting to be mentioned here a lot more often recently, although it is not available everywhere, and some insurances will not pay for it.    Most likely a R.O. would recommend IMRT or SBRT for you.  These are much more established radiation forms.  Surgeons will recommend DaVinci surgical removal.

max

C,

I have not much to add to what the above survivors have provided. My history wouldn't help in your thoughts as I came from the timings when the PSA wasn't yet used in the screening of prostate cancer (1995-2000), robots didn't exist and the cobalt machines were typical in RT. Very few doctors believed and used the PSA as a marker in PCa affairs. PAP was the traditional screening tool which my doctor used since my 45 years old. This test was negative along 5 years of screenings, but a PSA done at my request in 2000 led to the series of exams and ultimate biopsy diagnosing PCa. This new wave in PSA screening was started at those times (1999) corresponding to the exponential number of positive cases in prostate cancer diagnosis. Staging was different and the prediction tables used by doctors to recommend therapies used different methods of evaluation comparing with those of today.

The above survivors are to be applauded for the fantastic opinions and recommendations they write on (kudos to all of them). Cleveland sets it so well and concise. I wish I was that fortunate in receiving these feedbacks at my timing in 2000. Even books or readily available information on PCa were rare.
I sense some anguish and blaming in your story but the usual young folk never see illness as an issue highly influential in the quality of life. We expect doctors to handle the matters and tell us what to do. In fact it has been like that since we were born. However, you are not alone. We all at some time in life have been suspicious on that doctor's practice. Now it is time to revert that feeling, educate yourself on the issue and try finding that doctor that gives you confidence.

Let us know details and inquire. Above all, prepare your long list of questions to expose when consulting physicians.

Here is a site where you will find the stories of guys listed by age, diagnosis, treatment, etc. however, remember that in PCa affairs no two cases are equal even if similar;

https://www.yananow.org/Experiences.shtml

Best wishes and luck in your journey,

VGama 

my 2 cents//i was in the same boat..being tested every six months,,2 biopsiez came back neagative ..then yearly PSA tests.mine held steady for 6 years then jumped to 5.8 then back down again to 5.2 only to creep up to 7.1 ..went to a different uro. 3rd biopsy bang  PC 3+4..nine started in 2010 49 years old and diagnose in late 2017 at age 56.mine seemed contained after bone scan and mri which you need to do ..i saw tooo many surgeons  and radiologists too many ..very confused i also told too many people and heard horror stories about surgery ..well let me tell you somwthing i did cimbo radiation 25 external and 1 brackytherapy ..I TRUELY REGRET IT NOW ..my bowels are a mess and i cant urinate unlessi take flowmax twice a day ..you say u have had prosyate issues since age 20...dont even think about it m friend have it removed like 70% of all men do ..DO NOT MAKE THE MISTAKE I DID U AND YOUR FAMILY WILL REGRET IT THE REST OF YOUR LIVES..surgery has only 2 side effects which arent that really that bad small ;price to pay for beating cancer and in 5 weeks ypou will get a PSA test if its below 0.1 they cosider you cancer free until if anf when it ever goes above that ..then you have paln B which is radiation..2 chances at a cure  . ME ha my psa is still at 2.0 almost 1.5 years later i dont even know of its gone yet  and i cant pee and i have bowel problems an d a burnt rectum.....and no realgood plan B ..then why did i do it ..because i have anxiety  and i had and still have a deep down fear of surgry which i should have adressed now i feel lkke a coward to my family.....wish i had surgery if i ever have the chance to do it again if i ever comes back or radiation didnt work i will run to the hospital ..this is mental and physical  torture ..if you are thinking radiation..ask them if  can you remove it after ..if they say yes then ask them why obly a handful of surgeons in the country do it..also ask them for the brochere telling you everythign you can expect and all the 10 possible side effect s that may happen and did to me..not good

Well, if Surgery and Radiation both cured the cancer with no side effects.  I would think that most folks would choose Radiation.  This is not the case so we have to choose.  Sounds so simple but it is not.  In any case we live with our choices, the good, the bad, and the ugly and move on.  Just remember Quality of Life, best curative action, and be sure to make your own decision based on your research; people with prostate cancer; and the doctors treating you.  You weigh it out.  You make your decision.  A decision that you must be prepared to live with and move on.  I do not fault anyone for the decision I made.  Good luck on your journey.

I agree that you have to be an advocate of your own health, and of those you love.  I'll try to make this a shorter version of my husband's journey with Prostate Cancer.  He was 56 at the time of his diagnosis.  His father has prostate cancer.  My husband's PSA had been climbing for 2 years before his diagnosis. He was diagnosed in October of 2017.  Initial biopsies showed 4 +3.  He decided to research research/testing programs at Mayo and Memorial Sloan Kettering.  He was accepted in to both for Ablation Study.  MSK and Johns Hopkins both re-tested and he was graded a Gleason 9. He also looked at Ablation procedure in Netherlands by one of the world's leading prostate cancer institutes at Radboud University in Nijmegen.  For my husband, all roads led to robotic assisted surgery at Memorial Sloan Kettering in NYC with Dr. Behfar Edhaie.  Prior to surgery, my husband followed protocols set up by MSK which included a 4 month period post biopsy for nerves to heal from biopsy. During this time, he lost weight and got in the best physical shape of his life.  Doctors orders!  Followed ED pre-surgery protocols which involved daily use of ED products to improve blood flow to the nerve bundles pre-surgery.  Exercise (walking) increases blood flow as well.  And frequent sex during this time -  again - improve blood flow.  His surgery was 1/30/2018.   His recovery was short of incredible.  2 hours after waking up from surgery - he walked two miles.  2 weeks after surgery, he was doing small amount of traveling for work meetings, daughter's volleyball tournaments, etc.    4 months post surgery, traveled to 7 different countries in Europe to celebrate.  Was it a simple journey?  Of course not.  The mind games were awful - the what if's before surgery. We live in TN, and traveling to NYC frequently was financially difficult but it was well worth it.   Today, he has no ED issues at all.  He has very small drips when lifting heavy weights. Otherwise, completely dry.   We are so thankful for his positive outcome, and positive story. All tests show undetectable for cancer.  He was very lucky as his Gleason 9 was in cellular level and had not spread outside the prostate.    I give all the credit to God, and to his amazing surgeon at Memorial Sloan Kettering.  You can search by my user name to get more details of our journey.  My husband's decision to have prostate surgery was based upon the fact that once you go through the radiation treatment, if anything comes up after radiation,  you cannot remove the prostate.  Only treat it.  With prostate removal, if anything comes after removal, you can still have radiation and other treatments.  He weighed side affects from each.  He has not regretted his decision at all. 

I want to reiterate what Max said but for opposite reasons.

In my case, I also had prostatitis  but urine cultures showed it was a recurring Staph infection. And I would go through the same song and dance each time. 1-2 weeks of Cyproflaxacin and catheters.

But I did not know that Ciprofloxacin and  other flouroquonalones should never be used heavily over long terms. The side effects are deleterious and I have posted in this forum before how dangerous this class of antibiotics can be, as their effects are cumulative.

If your doctor's solution to your prostatitis is another round of cipro or similar class of antibiotics, go looking for 2nd opinions or 3rd or 4th.

Eventually my prostate was removed by RP which solved both my PC issues and my prostatitis issues. But that was the decision best for me. But I dodged a bullet by ending the antibiotic cipro merry go round because if I had opted to keep doing that, I might be bedridden by now and in danger of tears in paper thin muscle tissues by even the slightest movement.

This is a URL of Amy Moser who gives her tragic story from cumulative effects of Cipro over long term. Though my side effects were not severe like this, I do have some permanent effects.

https://mountainsandmustardseedssite.wordpress.com/2017/03/18/this-antibiotic-will-ruin-you/