After being diagnosed on 26 August 2009 PSA 6.2 Free PSA 13.7 Gleason 7(4-3), biopsy showed tumor in 4 out of 12 cores, located in right lobe (stage T2a) the VA set an appointment for today (6 Oct). The Urology Surgeon was pushing open prostatectomy, selling the fact that I was in very good health for my age 71 (72 in November) Also that I would have radiation as a back up, if the cancer returned after surgery.
When he realized I wasn't in favor of surgery-he backed off. Also I pointed to the fact I had two double hernia operations in the past and that could result in a lot of scar tissue, making prostate surgery more complicated. I had many questions with regard to Brachytherapy in conjunction with different types of radiation. He was unable or unwilling to address these issues and set up a consult with the VA radiologists. I requested a bone scan, to insure the cancer cells had not leaked in surrounding region. He said in my case a bone scan is unwarranted and countered with a pelvic scan- the scan & radiology consult are being scheduled.
My question is: Am I on the right track by discarding surgery and holding out for radiology options?
I would sincerely appreciate hearing any advise with regard to my case.
Tues (October 6, 2009) I met with a VA Urology Surgeon, he offered surgery or watchful waiting - I rejected both.
Today (October 9, 2009) I met with a VA Radiation Oncologist. A new PSA was taken -down from 6.2 (August 25, 2009) to 5.6 today. After much discussion of the different types and combinations of radiation therapy, we decided on a plan that worked around a cruise we have scheduled for the end of November to mid December.
My treatment will be IMRT (Intensity-Modulated Radiation Therapy), which the VA is farming out to 21st Century Oncology to allow me to receive treatment in my hometown. As a side note, the VA was willing to pay for out of town lodging, in the event I selected treatments, that required living away from home. I will meet with 21st Century Oncology on 22 Oct to discuss a treatment schedule-plan.
Today the VA gave me an injection Zoladex 10.8 mg, The purpose of the injection is to suppress the cancer cells, until I start the IMRT after the travel. The VA Urologist scheduled a pelvic CT scan for 9 November. The Radiation guy said it was optional if I wanted to keep an appointment for the scan, if it made me "feel good" to have it. Since I really wasn't certain how to respond, I left scan pending, at least, until the appointment with 21st Century.
I am very comfortable with having the IMRT. Based on what is known here about my case, is this considered a good plan? Thanks for any comments on this.
Later: Additional research revealed a more advanced radiation therapy than I had previous opted for. I switched from the IMRT (Intensity Modulated Radiation Therapy) to the more advanced IGRT (Image Guided Radiation Therapy). I will be treated by the same doctor with 21st Century Oncology, only in a town some 40 miles from our home- small trade off for the more advanced technology.
I will actually begin the treatments end of Dec '09/Jan '10 when we return from our travel. The Zoladex will bridge the time gap.
We enjoyed a great 12 night cruise and started IGRT radiation treaments 28 Dec 2009. Completed the 41st & final treatment on 26 Feb 2010.
My follow up appointment to the Radiation Oncologist on 12 Mar 2010 indicated no side effects or damage attributed to the radiation treatments. Every day during the treatment period, I continued with my usual routine of working out at my health club (1 hr cardio and 1 hr strength training) 7 days per week. I would say less than 5% of the time, I felt I had to push myself to finish my routine.
My wish, for every guy with prostate cancer: to experience such an uneventful treatment experience. I am scheduled to have my first PSA test 11 May 2010. I have been cautioned not to expect a significant drop to below 1% for a year after the treatments ended. In the interim, I will forget I had ever heard the words prostate cancer associated with me and I will resume enjoying life as I always have.
After completing 41 IGRT radiation treatment at the end of February 2010, my first 90 day follow up visit to the Oncologist was scheduled for 12 May 2010.
My PSA went from 6.2 at diagnosis to 0.05 No further Zoladex injections were ordered, beyond the original one. The follow up will be a PSA every 6 months.
The treatment produced no side effects, with the exception of occasionally being fatigued, causing me to shorten my daily two hour work out at the my health club, along with the "old guy" stuff that was there before the treatment.
One last comment - this treatment proved to be right for me, it doesn't mean it is right for you. If you are newly diagnosed - explore every treatment option AS IT RELATES TO YOUR CASE. When you feel you have exhausted all of the resources available to you, independently make your own decision. Not to be influenced by your spouse, friends and especially not by any medical professional. The treatment decision will then be yours and only yours to own.
My sincere wishes are, whatever, the treatment selected- your out come be at least as good as mine and better.
I am happy to report my latest PSA is now 0.03 - 6 months out from the end of radiation.
Since my PSA data news has been holding I tend to forget about keeping you up dated, for this my apologies. Occasionally I do get an inquiry from someone in your data bank. Here is the good news since reporting Aug 2010:
Dec 2010 - 0.43
Jun 2011- 0.62
Oct 2011 - 0.63
My next scheduled PSA test at the VA will be in Feb 2012. I will report the updated score at that time. I believe you have the best reference data bank for prostate cancer patients and you should be very proud of what you have accomplished.
The very best of health and success in 2012
As I promised, here is an update as of Feb 2012.
The PSA reading is 0.70 up slightly from 0.63 in Oct 2011.
Wishing you my best- Del Mancuso.
My 6 Jun 2012 follow up with my VA Oncologist revealed a PSA of 0.86 up from 0.70 a year ago and 0.30 following radiation treatments. He advised a 6 month follow up vs 1 year. If the trend continues he suggest an injection every three month. My hope is that all of you guys out there having great successes as you continue your journey with prostate cancer.
Since my last update my PSA;: 06/2012 .86, 12/2012 1.19, 05/2013 1.88 my next PSA reading will be Nov 2013. The VA continues to be my care provider. My VA Oncologist recommended a treatment of Zoladex injections in Dec 2012 and again May 2013. He explained "radiation failure" is define when the PSA; is 2% + the lowest PSA; following radiation (in my case 2.3). At age 75, I live a very energenic life style 2- 3 hrs at the gym everyday, hiking mountain trails and extensive travel plans. I have elected to postpone any treatment with the usual side effects, at this time, pending my next PSA; reading. Quality of Life, is priority one for me.
I continue to see my VA Oncologist. Since Jun 2013 my PSA; has been climbing (10/13 2.70; 12/13 3.5 & 2/14 3.9). During this period I had decided to nothing. The new plan is to have a bone scan & pelvic CT to determine my next course of action. Suggestions were Zoladex treatment or freezing the prostate. Also the PSA; will be monitored every 2 or 3 months.
I have had the scans - good news no cancer found in the bones! Not so good news- PSA; is now 7.0 from 3.9 in the last 90 days. Next I will have biopsy to determine if the cancer has returned to the prostate. If this is the case, I will consider cryo therapy (freezing the prostate) - a prostatectomy, as it has always been with me, not a treatment option. If cancer is not found in the prostate and the PSA; continues to rise at next PSA; is scheduled test (27 Aug 2014) ADT (Zoladex) will be an option treatment for consideration. On a personal note (if it is permitted): Whatever your opinion may be with regard to the VA system in the USA, I have great confidence in the continuing this journey under the care of VA (mine is Asheville, NC rated #5 out of 139). As everyone's experience is different with prostate cancer, so will their treatment at the VA or any other treatment facility.
Since my last entry, my PSA; has increased from 7.0 to 8.8 in 90 days. There was a "mix up", the appointment to see a Urologist about a biopsy- never happened. Now rescheduled for 9 Sept 2014. I still maintain, my same active life style. Next Oncologist appointment is Nov 2014. Will update when I have new information, 'til then make today the best day of your life and make tomorrow even better!
I had my 3rd prostate biopsy. A "small amount of cancer" was found in the left side of the prostate. I have an appointment with the Urologist on 21 Oct, where these results and my future options will be discussed. I am eager to see the PSA; reading at that time. I also have a follow up appointment with my Oncologist on 2 Nov as a follow up. Until my next update, as we used say in the Navy- "Smooth sailing to Safe Harbors"
Discussed the biopsy results with the VA Urologist. A small amount of cancer cells are present in the prostate and PSA; increased from 8.8 to 13.6 in last 60 days. This indicates the surrounding area of the seminal vesicles, should be explored. If cancer cells are present, the recommended treatment would be cryotherapy, to eradicate the cancer. The VA is setting up a referral to Duke Medical, Durham, NC for this procedure. Other options were "watchful waiting" (my call) or ADT (androgen deprivation therapy) considered to be "over kill" at this point.
MRI was largely inconclusive. The appointment with my VA Oncologist, revealed another increased PSA; going from 13.6 to 17.6 in less than 45 days. In few days I will have a double biopsy (prostate & seminal vesicles) at Duke. The biopsy results will determine if cryotherapy is the next course of action or perhaps there will be new twist on the road of this journey. Until my next post, everybody make each new day - the day possible!
My PSA; is now at 22.9 from 17.6 recorded just 60 days ago. I continue to be seen at Duke University, Durham,NC (funded by the VA, Asheville, NC. A biopsy was preformed on the prostate & seminal vesicles. 16 cores were extracted- 3 cores (in close proximity to each other) all 3 had a Gleason score of 7. None of seminal cores indicate cancer to be present. The cancer being contained in the prostate, made me a good candidate for cryo surgery. To this point, my age 77, I have been able to enjoy my lifestyle choices (going to the gym 2 hrs per day - 7 days per wk and doing some hiking on our mountain trails) without interruption. The PSA has been monitored every 3-6 months, since radiation failure Dec 2012, employing "watchful waiting". The rapidly rising PSA called for a more proactive treatment. Focal cryo surgery seemed to be the next step. The process employs inserting hollow rods, into the prostate directly to the cancer location. Liquid is passed through the rods and frozen to form crystals that destroy the cancer. The rods are inserted through the perineum (area between the anus & scrotum) under a general anesthetic. This cryotherapy can be used as a "first time" treatment, if the cancer is contained in the prostate. It can also be used, as in my case, after radiation failure has occurred. Tues 10 Feb 2015 I had this procedure at Duke Unv Hosp. by Dr James T. Polascik, MD. A key to the success of cryo is the experience of the doctor. Dr Polascik, is well qualified having background at John Hopkins. I have a catheter bag in place until 25 Feb. Testing the success of this procedure in removing the major amount of cancer, will be in 3 months, if the PSA is significantly down. If the PSA; is not down, the next step would be resecting the pelvic lymph system. I will report the findings in 3 month.
A quick update - Weather prevented having the catheter being removed as scheduled, on 3 March, three weeks after the cryosurgery, the catheter was finally removed, to reveal that I am now experiencing incontinence. A special note to anyone considering cryo surgery: be award if you had radiation as a prior treatment (as I had) the risk for incontinence is 10%. If no previous radiation the risk reduces to 3%. I will try to regain my bladder control with the Kegel exercises, otherwise this comes with the territory of managing the cancer.
Post-op apt. at Duke Unv Cancer Ctr- no problems, with the exception the continuing incontinence. Working at correcting that "bump in the road" New information: to determine if the major portion of the cancer was located in the prostate and was destroyed - the PSA must be at .5 or below not 0.6 or higher down from 22.9 - I will have this information on 19 May '15, my next VA appointment.
Didn't get 0.5 PSA reading I had hoped for after the Focal Cryo Surgery, the PSA went from 22.9 in Feb 2015 to the current PSA of 37.7! My doctors at the VA in consultation with my doctors at Duke University Cancer Center presented a plan that I can buy into 100%. A new bone and Ct scan is scheduled 4 Jun along with a 6 month injection of Lupron with continued PSA monitoring. Another positive is that the Docs are no longer considering any surgery such as removal of the pelvic lymph nodes. The "bump in the road" incontinence is still present, looking for a positive outcome, as I have somewhat learned to manage the condition, making my day to day life more enjoyable. No matter what state your condition is in, it is always good to have something on your horizon - I have two: my Navy Destroyer's reunion in Sept '15 to reunite with some of 1950's shipmates and a two week Caribbean with friends in Jan '16. Remember:
There are always "blue skies" behind the darkest of clouds!
Results of the scans indicate cancer in the spine and lymph nodes. 27 Aug 2015 we will have another PSA;, which will indicate if the Lupron (ADT2) is doing its job- if not- what is next? The Urologist's response was chemo - my response was "chemo is off the table, as I will not consider it an option for me". His response, if necessary we can consider other options - OK Doc - I get it "stay positive"! On that note - there is steady progress being made on the incontinence problem - I'll take success where I can find it! Make today the best day of your life - more important - make tomorrow even better!
Finally some good news! Having had my first Lupron/Elgar (ADT2) end of May 2015 I had the first my first PSA going from 37.7 down to UNDETECTABLE!! The next PSA; and ADT treatment is scheduled for 3 Dec 2015. The incontinence side effect from the Cryo is now under control. The prayers of the many, who have supported me on this journey, have been answered, for their support I will be ever thankful. Wherever you are in your PC journey, know if you have today - you have hope - for hopes lives in your all tomorrows.
My latest update - Dec 2015 I had my second injection of Lupron/Elgar (ADT2). PSA as of 8 Feb 2016 is still at the undetectable level. Indicating that the ADT is continuing to contain the Stage-4 cancer (spine & lymphatic system), not without consequences. A condition called Osteopenia causing the bones to become very brittle. Now taking 5,000 units of vitamin D daily. Further treatment being considered, a yearly infusion of zoledronic acid. Since I don't tolerate infusion very well, this type treatment will not be decided until April 2016. I also have spinal stenosis and Parkinson's with certain interactions. What is remarkable, none of this has diminished my ability to continue to maintain my "quality of life". At age 78 I continue to travel: just returned from a 2 week Caribbean cruise with an extended 2 week stay in Florida; Sept 2015 travel to San Diego to my Navy ship's reunion and I am looking forward to this year's reunion in Oct in Norfolk. Now back home, I have resumed my routine of working out at my local health club 7 days per week. No matter where you find yourself on this journey - Never allow your life to be defined by cancer! Live life on your terms!
PSA again still undetectable! Bladder cancer suspected. Tests pending in May to confirm the new diagnosis. Continuing to enjoy my active life style. Until my next update - make sure you are living life on your terms - keeping negatives and negative people out of your life.
Diagnostic tests verified, I Do Not have bladder cancer, as previously suspected. 17 July 2016 I received another 6 month treatment of Lupron-Elgar (this is my 4th treatment). My PSA remains undetectable, as previously reported. My minor conditions (Parkinson's, spinal stenosis & osteopena) are still present showing no changes. Thanking God, I am able continue my active lifestyle: gym (6 days per wk), yard work, hiking & traveling to another of my Navy ship's reunion (Oct'16 time in Norfolk, VA). Next PSA; & Lupron scheduled for 17 Jan 2017. I am so positive PSA will remain undetectable. I booked a cruise for March 2017, with friends, we will all be turning 80 during 2017. Live the life of your choosing - not the life cancer chooses for you. With a cure, one day, cancer will be dead not you!
I received my 4th 6-month Lupron (Eligard) treatment at the VA. My PSA remains undetectable (down from 37.7). I cut my gym workout back to 6 days (even God rested on the 7th day). I did not cut back on the time (1 hour on the tread mill and on the better part of the 2nd hour on other equipment). Since my last post, I traveled to Norfolk,VA to attend my Navy Destroyer's 25th reunion. The cruise, set for March 2017 is still a go. I plan to attend my ship's next reunion in Oct 2017. I will be turning 80 in Nov. I always like to keep an event on the horizon. My next Lupron/Eligard scheduled for July 2017. All said and done, I feel very thankful and grateful to God for allowing me to live life on my terms. As we all travel this prostate road..... the operative word is "Together- no one is traveling this road alone". The second best thing is we are still "traveling!!". Until my next post- if you make Today better than Yesterday.....just imagine what your tomorrows will be!
My appointment at the VA on 17 July 2017 my PSA reading again was <0% (as it has been since May 2015 down from 37.7). I had the expectation of receiving another 6 month's Lupron/Elgard (Leuprolide 45mg/6M LA- ADT2 [Androgin Depression Therapy surppresion]) treatment. Here after referred to L/E. I was told, I had tolerated the L/E treatment well, during the last couple of year, another plus factor is - I will reach age 80 (Nov 2017). The VA position is to now discontinue L/E and monitor with a PSA every 6 months, until the PSA rises to 10-15% at which time, the latest treatment option will be offered. I countered with: (1) a PSA every 3 months (2)OK! No L/E for 6 months and then a L/E (Jan 2018) and again no L/E 6 months (Jul 2018) i.e. L/E on - off every 6 months based on the PSA reading (my call). I obtained a second opinion from a non-VA doctor. This is my current update 4 Nov 2017): On 17 Oct 2017 psa remained <.0%. Another PSA on 17 Jan 2018, if psa is <4.5% I will continue without the L/E- if the PSA is higher, I will resume L/E or whatever the appropriate ADT is available at that time. I feel secured my choice of this plan of treatment. Once YOU make YOUR select a treatment plan - Own it! Put it away in a drawer and get on with the business of living life. Until Jan 2018 - God's riches blessing on all of brothers in this community and all who support them.
PSA on 1 Dec 2017 was still <0.1 with no Lupron - Elgard treatment since 2 Dec 2016. A new PSA reading of 0.1 taken for 17 Jan 2018 for a VA follow up appointment. The VA statistics indicate, once the PSA begins to rise, the average is 18 month before it is necessary to resume treatment (when PSA reaches 7.0 to 10.0). To continue without treatment, the VA's policy is: a yearly follow up appointment with a PSA. This was not acceptable to me. A compromise treatment plan was agreed to: a PSA every 90 days with a follow up a appointment every 6 months (next follow up 17 July 2018). Now at age 80, I still do 1 hour on the treadmill at the gym, 6 days per week- along with a few other workout machines (now limited by my osteoporosis and spinal stenosis- I also have Parkinson's which will limit my Mountain trail hiking this summer. All things considered- I am pretty fortunate guy! I get to, for the most part, live life on my terms. I am looking forward to another of my Navy ship's reunion in Sep 2018- this time I will be traveling to Salt Lake, Utah. As you travel this journey, NO ONE IS BETTER QUALIFIED, TO MAKE THE IMPORTANT DECISIONS....... THAN ARE YOU!! Never allow yourself to be defined by "Prostate Cancer" - You are a guy, who happens to have been diagnosed to have prostate cancer! Until my next post, to all my fellow travelers in this community- I wish you best of everything. Del
Del's e-mail address is: del1937 AT frontier.com (replace "AT" with "@")