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Steven Roecklein, MNPCC Former President

Steven W. Roecklein, Ph.D. Social Work, Former President, MNPCC.  DOB 1.16.1945

Chapter 1:  2001-2011: Diagnosed, treated with IMRT Radiation. 

I was watching my PSA blood test results slowly climb upward as I aged into my later 40’s and early 50’s.  When my PSA tested at 5.7, my family physician referred me to an Urologist for further examination.  He determined that a biopsy was warranted.  The findings from the biopsy were positive for prostate cancer.  This was in May of 2001, and I was 56 yrs old.

My biopsy showed a 3 + 3 Gleason score, PSA of 5.7, with  3 cores of tissue testing positive for Cancer, and 9 that did not.  Doesn't matter with Prostate Cancer, at that time (2001), if U have a little bit of prostate cancer, the "cure" says U destroy the whole prostate, either by radiating it, or cutting it out.

What a psychological blow it was to discover that I tested positive for prostate cancer.  I was truly in shock, disbelief, and denial upon the devastating news.  As the reality of prostate cancer finally sunk in with me, I began extensively searching the Internet. I also gathered further information from the medical community, friends and from anyone else that could assist me. This was my way of taking responsibility for myself, and fighting back. I also joined the prostate cancer support group at North Memorial Hospital, in Robbinsdale, Mn.  Dr. Tom Swallen, pathologist, was its leader.  He also had Stage 4 prostate cancer and was slipping away.  He did die in 2007, 6 years after I had joined the group.

After agonizing over all of the contradictory information that U discover when U step into this whole crazy experience of "what now?",  I finally decided upon radiation, external beam, IMRT, to treat my cancer.  This is always a real crossroads in one's Journey with Prostate Cancer, when U finally decide upon your treatment choice.  At that time is was either do surgery or radiation.  I also wanted for myself, the least intrusive method, and so I ruled out Surgery.

My course of treatment was 42 individual daily radiation doses, which lasted over 8 1/2 weeks.  Fatigue was the major side effect which lasted well after the 42 treatments ended.

I then lived with the impact of my radiation treatments for the next 10 years, until 2011.  During those 10 years, I had my PSA checked every 6 months.  I reached the nadir, or low point of my PSA’s, 0.52, in 2005.  From that point forward, the scores of my PSA started to climb upward once again and finally reached 2.0 in May of 2011. I then chose to have another biopsy.  Unfortunately, the results of that biopsy came back positive for prostate cancer and now my Gleason score had risen to 4 + 3.

Chapter 2: Brachytherapy. 2011-2016.

Oh no “here I go again”, I said to myself. My heart sank with the news that my cancer was now reoccurring.  Once again, I researched, interviewed doctors and sought out any information that would help me in making another difficult choice on what to do with my re-emerging cancer.  After another  agonizing three months of diligent head-scratching, I decided to have radioactive seeds,  implanted (Brachytherapy) into my prostate gland on September 30, 2011.

Chapter 3: 2016: Surgical removal of seminal vesicles. 

Next, I went 5 years to 2/1/16 when my PSA had risen to 11.3.   I was referred to Mayo Clinic and saw a Dr. Gene Kwon there.  We did a choline 11 pet scan on July 1, 2016.  Results came back with seeing some cancer in my seminal vesicles.  A biopsy was completed and Gleason 4 + 4 was found in both of my right and left seminal vesicles.  Previously my Gleason was a 4 + 3 so my cancer had progressed since my brachytherapy in 2011.

On 11/15/16, I had surgery with the DaVinci Robotic at the U. of Mn. with Dr. Chris Weight.  Both of my seminal vesicles (SV's) were removed along with 10 adjoining lymph nodes.  Both SV's had cancer in them.  All 10 of my lymph nodes were clean, negative for Cancer.

Thus I had high hopes for being able to lower my PSA and remove all of the active cancer in my body.  I completed my first PSA test on 12/15/16.  The score was 7.83.  This was down from the pre-surgery 11.3 but was not as significant a drop as I had hoped for.  I also did a PSA test in January and February of 2017.  PSA had now risen to 8.60.  Thus I was right back to where I was before the surgery, with a rising PSA and not sure where the prostate cancer is inside of me.

I completed the Auxium Pet Scan at the U. of Mn. Nuclear Medicine in April of 2017.  They found two suspicious lymph nodes near my spinal cord, at the midsection of my body.  Too there was one bone area on a rib that looked suspicious.  That was it.  No cancer evidence in my prostate area.  I hope not after two radiation treatments.  BTW, I still have my defunct twice radiated prostate gland which now is a "crushed lime-sized mass of scar tissue."  Which BTW, is not very easy to test or treat.  Another added risk factor in my prostate cancer history to be reckoned with.

My PSA leveled off that summer of 2017.  So I did not do any treatments for the above findings.  Part of it was I could not find a doctor who would do the treatments for either they thought it was too risky, or that they wanted me to take hormones (Androgen Deprivation Therapy) ADT, which I did not want to do as of that point in time.

Chapter 4: Lutetium-177. 2017-2020

My PSA continued to rise over the next two years as I settled into an Active Surveillance status.  Finally in March, 2019, my PSA marker had gotten to 134.  Then I received 2 shots of Firmagon, (ADT) and the PSA dropped to 28 in 17days.

In the meantime I became aware of a new therapy protocol called Lutetium-177.  It is a nuclear radiation treatment delivered with an IV.  It uses the PSMA, prostate specific membrane antigen, which exists as cancer proteins on prostate cells themselves and can be identified with the Gallium 68 PetMri scans.  Upon hearing of this new treatment I immediately did research on it.  As it turns out Lutetium 177 is in clinical FDA trials currently here in the States, but only for the most advanced, castrate-resistant prostate cancer men.  My cancer had not progressed to that level yet, being mostly in my lymph nodes (stage 3).  Thus I did not qualify for any Stateside clinical trials.

The only way I could access this PSMA-Lutetium treatment was to have to travel either to Australia or Germany, where the treatment is currently available commercially.  From January 1, 2019 I tried to qualify for the Australian site to receive my Lutetium-177 therapy.  Finally accepted,  I had my first infusion on May 3, 2019,  a second one on July 19, 2019.  I had my final Lut-177 infusion on October 4th of 2019.

My PSMA Gallium 68 Pet Scan, that I completed with each trip to Sidney,  (2019), showed much of my Cancer gone and/or fading away.  That conclusion was verified by my PSA scores  up until December of 2020.   Then my PSA started to rise again from 0.18 (nadir) to 0.48.  That was a .3  rise in PSA over a 4 month period.  My remission and "honeymoon" were over.  Ugh!  Here I am again.  Same old, same old!

Chapter 5: 2020-2022. Focal therapy for One New Lesion.

The new and current thinking about treating Prostate Cancer is to "show me the Cancer", meaning to get proper MRI and Pet scans prior to any treatment.   Thus I began my year long journey (2021) to decide how to treat, if I could, my emerging Cancer.  The only PET Scan I really wanted was the PSMA Pet which was just getting approved by the FDA here in the USA.  Hence I scrambled to find the PSMA and to have my Medicare Insurance pay for it.  Fortunately Mayo in Rochester was doing a clinical study using this GA 68 Pet.  I qualified for it and as now, I have not had to pay for it out of pocket.  May my Karma hold!

Sure enough the Ga68 Pet found one location for my Cancer.  Back inside of my prostate gland (please recall that I still have 2x radiated prostate gland), was a lesion the size of a crushed lime  riding right up close to my rectum wall and neck of my bladder.

Thus seeing my relapse as both  local and focal,  meaning that my lesion was the only one, but it also lie in a quite precarious position so close to both my rectum wall and bladder neck.  

Reframing my Cancer now as returning and also focal, I sought out that type of treatment.  Well folks it is hard to find.  Focal prostate cancer treatment is just getting going.   Some focal treatments are approved of by the FDA and some are not.  The three primary treatment choices I had were physical surgery, cryosurgery or radiation.

Sorting all three out I chose cryosurgery.  Cryo meaning freezing.  Curiously enough there are two main ways of killing cancer in the body.  Cancer is susceptible to high heat or extreme cold.  By heating up or freezing  the Cancer, one can destroy it

Mayo insisted upon another biopsy to validate the Pet Scan indicating PCa in my radiated prostate gland.  Working  with doctors Lance Mynderse and David Woodrum,  of the standard 12 total biopsy pokes , 9 came back negative for Cancer.  Three came back positive with all three  located in the suspect cancer tumor area.  Thus with a "confirmed" lesion, Cryotherapy was now a choice for me.

On January 13, 2022, I had the surgery with the cryo procedure.  Both doctors visited me after the meeting.  Both were optimistic that they had been able to freeze/kill the area of concern.  Too they believed that they had avoided any damage to my rectum or bladder neck.  I sure have hoped so.  

The proof is in the pudding however.  I have had to wait now three months after my treatment for my first PSA blood draw.  Talk about apprehension, which is true for every PSA draw I complete:  What will be the reading this time?  Is it up, how fast and furious is it?  I do  value the PSA reading as a reference on the condition of our prostate cancer condition.  Once we have PCa , all of us are just one test away from a recurrence.  But most carry on and hope for the best, employing the concepts of our MNPCC support groups and the use of the  MNPCC website, as an assist.

I have just received my PSA results as of 4/20/22.  Prior to treatment my PSA was 5.5 and rising.  Current reading is 0.5, hence a drop of 5.0.  YIPPEE-YAI-AYYYY!  What a relief.  Now I hope for some additional time in remission.  But again, I am just one PSA score away from that all changing. 

August 2, 2022. I visit Mayo again today for another PSA and an MRI ordered by my two doctors at Mayo, Lance Mynderse and David Woodrum.  PSA today is .9 up from the .5 from April, 2022.  Bad news.  The MRI of my prostate bed area did not indicate any Cancer seeable.  Thus it is unclear the reason for the PSA rising.

Chapter 6:  Active Surveillance.    August, 2022-future.

Given the uncertainty of the reasons for the rising PSA, my team of docs at Mayo and I have agreed upon the following:  every 3 month PSA draws, and then meet again after the 6 months, assess the scores, and plan accordingly.  If the PSA continues to rise I will then plan on Imaging of my body using the PSMA--gallium 68 pet scan.  

What really tops off this whole experience with my  cancer and what makes dealing with prostate cancer so rough and tough  is that there are three major side effects from treatment with which each of us may have to manage.  These three are the possibilities of urinary incontinence, rectal incontinence, and erectile dysfunction.  Since the treatment of my reoccurrence with prostate cancer, I have experienced impairment in two of these three areas. My urinary incontinence has increased which appears as urinary frequency and urgency, weak flow, and not being able to fully empty my bladder.  

I  now go through about 4-5 pads/day with my urinary incontinence.  I sometimes use a clamp which does hold the urine back but does cause some physical discomfort as it is clamped around my penis.   I am again thinking about having an artificial sphincter  installed but my docs want me to put that choice on hold until my Cancer is more contained, if that ever will be.  

Sexual prowess is also impeded with me.  I have erectile dysfunction, after having my numerous treatments.  

Being a prostate cancer person myself, I can fully relate to, empathize with and acknowledge the myriad of feelings, thoughts, decisions and struggles one goes through as he and his caregivers cope with the diagnosis of prostate cancer.  Too, every person is unique and different.  Not one size fits all when it comes to treating our cancer.  So each of us has to digest all of the information available, and still “roll the dice” to decide how to respond to his condition.

As the President of the MNPCC, I want to provide information, conversations, support, advocacy and encouragement to all of us who are afflicted by this dreadful disease.  Also, I want to include the loving caregivers around each of us, to be a part of our treatment and healing process, as much as each of us wishes their inclusion.

I am now living with prostate cancer since 2001.  As such I believe that I can talk and walk with all of you as you travel your prostate cancer paths.

Thus I have a commitment to all of us men, and our caregivers, to enlighten, educate, support, and advocate for all who cope with prostate health/disease issues throughout our lifetimes.

Caringly and Supportively:

 

Steven W. Roecklein, President, Mn. Prostate Cancer Coalition, December, 2022.