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contrktr
Posts: 3
Joined: Jan 2020

Hello Everyone,

This may start as a vent then a questionaire, so my apologies for being all over the place but I am still in the initial shock phase and still seeking out professional opinions.

I am a very active, in good shape, 52 year old who just found out last week that I have stage 2TC Prostate Cancer with a Gleason Score of 3+4.  This is a complete shock to me as I have had chronic prostate issues (chronic prostatiits) since my early 20's, and I get a PSA every six months along with a DRE at the urologist visit. 

I have had two biopises before on scares when my PSA rose from a 1.56 to a 2.37 the first time in 2012 (biopsy negative) and again in 2014 when it rose to a 3.34 (biopsy negative).

They actually sent the second samples to a DNA analysis lab that also came back green lights across the board.  

I have had 15 PSA's done since then and have seen the doctor every six months as directed.  I actually thought my last biopsy was in 2016 but it seems I lost track of time and just took it for granted that my doctor was on top of things.

Upon receiving my diagnosis (which was like getting told I had a flat tire by my doctor, whom then gave me a book and a stapled bunch of copies that had been copied so many times the pictures were unrecognizable, and then told that no matter what course of action I chose he'd be there for me) i asked for my records so that I could begin the process of getting second opinions.  It was in these records that I found this one chart that i had never seen before that just blew me away.  

I had two biopisies as mentioned before in 2012 and 2014 when my PSA went to a 3.34, but looking at my graph, my PSA since then rose steadidily form a 3.34 to 4.19 in 2016, a 5.01 in 2017, stayed around there in 2018, and then went to a 7.92 in January of 2019.  My latest PSA was in 11/2019 and it shot to a 10.03.

My doc always calls me with my PSA results and after that call his recommendation was to take a round of antibiotics and wait 6 months to get another PSA.  I asked him if there was some test we could do other than a PSA and a random sample biopsy and he said yes that we could do a MRI if I wanted.  I said yes please and that lead to a MRI guided biopsy two weeks ago that yielded my diagnosis. 

 

So this is the vent part, please forgive, but it is also a warning to always stay on top of your own health and get second opinions and don't always rely on your doctor to look out for your own health.  

If my PSA rising from a 1.56 to a 2.37 and then to a 3.34 was alarming enough to warrant two biopsies and DNA mapping in 2012-2014, why was not the doubling and then tripling of my PSA in the following 6 years not a red flag to warrant another biopsy or MRI (which I didnt even know was an option for the prostate)?  I had to actually say no to waiting and ask if there was someting else to do, or I'd still be waiting until May to get another PSA.  

Ok, that was the vent part, and I guess since i don't understand it, and nobody else I show the graph to does either, I just want to say that i cannot emphasize enough that you have to stay on top of your own health and not blindly follow your doctor.

 

Ok, so here I am, blindsided by a diagnosis that my retired urologist (one who originally diagnosed me with chronic prostatitis in my 20's) told me I would probably never face since I was one of those guys who would get checked twice a year because of that condition and as a result if indeed I ever did get diagnosed with prostate cancer, it would be in extremely early stages and I'm guessing more options would be available?  (I'm still in information gathering strage but have seen 2 urologists and one radiation oncologist so far and have a third urologist consult next week althought even the radiation guy said he would do a radical prostatectomy since I have a 4 in my Gleason score).

 

My question to all you guys is who here has had treatment, what were your results, what were your regrets if any, and what do you think about the options that are available?

I have talked to so many people already and they mostly agree surgeons want to operate and radiation guys want to radiate, but they all also say that the information on the quality of life afterwards (incontinence/sexual effects) are sketchy at best and a lot of them were shocked at the learning curve afterwards on things like urine flow and the different damages associated with each form of treatment, whether it be open surgery, robotic or radiation.

 

So if you don't mind, can each of you tell me your stage, type of treatment you chose and why and the results after (or during if you are currently in treatment).

I am trying to learn as much as I can, but am finding that the prostate is a "drama queen" as my radiation oncologist just described it, and there is just no simple answers on outcomes.

 

Thank you all for reading this.  i am still bouncing back and forth from disbelief to anger and back again, so I apologize for being all over the place.

 

 

 

 

     

 

Clevelandguy
Posts: 583
Joined: Jun 2015

Hi Contrktr,

First of all there is no right or wrong treatment nor can we pick the best on for you. As I always say great doctors+great facilities = great results(usually). I will try and keep it short.

I was a 3+4 with perinural invasion(cancer ready to leave the barn)

Had robotic surgery in 2014 with a uncomplicated recovery, cath for 10 days

The reason I chose surgery was because I was told by both my Urologist and Oncologist that surgery was a good option with my set of parameters to remove my cancer.

Took about two years to recover a usable irrection and I would say I am back to about 90% of where I was at before surgery.  Still drip a little urine under heavy lifting or making odd movements so I wear a light pad every day.

I have had undectable psa readings ever since 2014 with psa testing now done once a year.

if I had it to do over again I would choose surgery but there are good radiation treatments also. I think both Cyberknife and Proton radiation are excellent.

In closing just remember that every case is different and there have been members on this board with bad surgery and bad radiation results.  I feel it all depends on the details of each case and that not any treatment radiation or surgery has a guaranteed outcome. The only thing we can do here as cancer survivors is tell you how various treatments have worked for us and then you have to decide on which direction you will go in.  Your team(doctors,family,facilities) should help you make the right decision.  Once you do pick, move forward with your life and stay out of the should of, could of.  Look positive forward and stay out of the negativity as much as possible.

Dave 3+4

lighterwood67's picture
lighterwood67
Posts: 264
Joined: Feb 2018

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
Posts: 3
Joined: Jan 2020

Thank you Lighterwood for your story.

Gforce
Posts: 21
Joined: Jan 2020

Hey there. I was diagnossed with statge 2 TC at age 53. First PSA ever done came back at 17. I had 12 out of 12 cores positive. 10 cores 6 but 2 cores 3+4. Cancer was contained. I chose Proton Therapy. Given my extent of cancer throughout both my nerve bundles would be gone and that was not attractive to me. I am 8 treatments in and no real issues. I am on ADT right now to improve cure rate. Your docter may reccommend that for 6 months. Major side effect is hot flashes as your testosterone will be around 20. If you go this route you will get Spaceoar gel inserted to protect your rectum and 3 seeds implanted to line up your treatment. That was no fun but the Spaceoar will really help. 

contrktr
Posts: 3
Joined: Jan 2020

Thanks Gforce, I was told by a radiologist that because of my chronic prostatitis that the seeds were a bad option for me as forign bodies would most likely make it worse.

So I am still educating myself here, nerve bundles are inside prostate or around it?  The surgeon said that the robotic surgery was "nerve sparring".  I am not wanting surgery but it seems all the doctors inclduing the radiologists are pushing me that way.  My cancer is is both hemishperes but only 6 out 0f 12 samples came back positive, but a couple were at 50%. 

Gforce
Posts: 21
Joined: Jan 2020

Bundles lay on top of each side. If you have a positive margin and sounds like you would, then surgery is a great option. However, while you are in surgery, your surgeon will decide if he can spare the nerves. So technically you could wake up and no natural errection the rest of your life. If your surgeon is 100% sure then I would have that option on the table. 

lighterwood67's picture
lighterwood67
Posts: 264
Joined: Feb 2018

Prior to my surgery, I had to sign papers on the risks and potential side effects of my RARP.  For instance, 10 % chance of being incontinent; 30 % chance of ED.  If you folks know of a doctor that is 100 % sure you will not experience these side effects please post. 

Josephg
Posts: 228
Joined: Jan 2013

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3469
Joined: May 2012

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

ASAdvocate
Posts: 139
Joined: Apr 2017

With your pathology, almost any treatment has a good chance of non-recurrence.

I have never read any study that showed that surgery could match the non-recurrence rates of the two advanced types of radiation, SBRT/Cyberknife and protons. Some here may take issue with that because those treatments don't have centuries of history like surgery has, but, what is known is fact.

What I am seeing around the PCa support internet is a rapidly growing interest in the recently FDA approved TULSA-PRO protocol. It's USA clinical trials included both low and intermediate risk men, and it was effective with very few side effects. Some men have been flying to Germany for treatment, where it has been available for several years. But, now it is becoming available at some USA locations. Insurance is the problem, and may take years. The men who went to Germany paid $20,000 total out-of-pocket, and highly recommend it.

Just something else to be aware of.

L1917
Posts: 4
Joined: Jan 2020

ASAdvocate,

Your comment on TULSA-PRO led me to do some digging around.  It looks encouraging but of course doesn't have the history of the more conventional treatment options.  My biopsy showed a 3 positive cores out of 12, Gleason 7 (4+3; 4+3: 3+4).  Confirmed by a second opinion.   Prolaris test came back outside the range of AS (8.3% risk of mortality following AS versus 5.1% with treatment).  Have had one consult with a surgeon; another scheduled today.  Have a consult with Sean Collins at Georgetown Cyber Knife; Director of Radiation Oncology at Suburban/Hopains; and Michael Zelefsky at Memorial Sloan Kettering (SHARP).  Based on what you know about TULSA-PRO do you think I am a candidate?  If so I would go to Germany or Finland for the procedure.  Just not enough experience in the US.  

Thanks for any thoughts. 

 

VascodaGama's picture
VascodaGama
Posts: 3224
Joined: Nov 2010

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 

 

Steve1961
Posts: 301
Joined: Dec 2017

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

hewhositsoncushions
Posts: 356
Joined: Mar 2017

As alaways there are two sides to the coin.

MK1965 will say exactly the same thing about surgery.

Both sadly are outliers inside effects to the negative side.

Both modalities have risks.

lighterwood67's picture
lighterwood67
Posts: 264
Joined: Feb 2018

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.

graycloud
Posts: 42
Joined: Jan 2018

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. 

Georges Calvez
Posts: 458
Joined: Sep 2018

Hi there,

You can read other peoples' stories as long as you like and look at the statistics all day everyday.
At the end of the day like the poor cat in the adage who would eat fish but does not want to get its feet wet you have to choose.
Looking at the two dominant forms of therapy, radiation and surgery, they both have their proponents and detractors, their success stories and failures.
Generally they are both pretty successful at least at achieving short term cures.
They do have downsides as well, radiation risks secondary burns and effects that can be nasty, surgery has more risks of incontinence and impotence.
The majority of patients will do very well with both, a minority will have a bad result that may be more or less recoverable.
You have to weigh the choice up and make the decision that you are most comfortable with, at the end of the day it is your choice and you will have to live with the consequences for good or ill.
I had to face that choice and make my decision, just like every other man with prostate cancer, I would not wish that decision on anybody.
So far I have not come out too badly, I have to accept the fact that my life is diminished, but I am still here for my wife, etc.

Best wishes,

Georges

Grinder
Posts: 457
Joined: Mar 2017

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/

 

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