My urologist of 10 years believed that he felt something on the latest DRE (Digital Rectal Examination). My biopsy revealed 10% of core left base with cancer with perineal involvement. Elected to have seminal vesicles biopsy on 8 January 2010 and was found free of cancer.
Elected to go with perirectal CT-guided placement. [The perirectal area is that surrounding the rectum - most brachytherapy procedures are through the peritoneum, the area between scrotum and rectum.] Started ADT (Androgen Deprivation Therapy) on 8 January, 2010 with 3 month shot. The CT method appears to lead to more accurate seed placement which is scheduled for 29 January 2010.
The urologist had me on Avodart for 8 years prior for BPH (Benign Prostate Hyperplasia). which apparently masked any rise in PSA. I am the luckiest guy on the planet not dealing with a more advanced case of PC.
On the 29th January 2010, I was prepped, IV in, Catheter in and the CAT Scanner that was to be used to guide the seed placement failed to boot up after finishing the seeding for the first patient of the day.
5 February 2010, I had 160 Iodine seeds placed monitored by at least 8 scans of the CAT Scanner using a spinal. I was placed on my stomach, my sweet cheeks were taped open and the operation commenced for about 2 hours. Dr. Panos Koutravellis, with offices in Vienna , VA ( Tysons Corner) used the parirectal technique inserting the needles both sides of the anus to place the seeds. Dr. Iver Kasnetz, Falls Church Medical Center, Falls Church, VA., my urologist of 10 years was assisting along with two nurses and a nuclear engineer.
I left with a catheter because 5th February was the beginning of the 50 inch snow in the Washington Metro area. When the urologist pulled the catheter on the 29th after the failed seeding attempt my urine flow dropped to about 2 to 4 mil/sec for 3 days just from the irritation of the urethra from the removal of the Foley. I did not want to go into retention in the middle of the night and have to count on Fairfax County Fire Dept getting me to Inova Alexandria during the snow storm.
Hence, I requested that the Foley be left in and I would have it pulled in several days time (Mon) in the urologist's office. I had the Foley for a week rather than three days. The only problem I experienced was having a BM. Sitting on the toilet caused stinging in the urine flow into the drain bag.
Right now I am getting up every two hours for bladder void; taking a stool softener and doing better than I ever thought was possible. Urine flow tingles now but does not sting. The catheter gave me a front row seat on the condition of my urine in the healing process. The blood clots cleared on the third bag. A little pink appeared the next morning. The scabs from the exterior needle wounds collected in my shorts half dozen every day for about five days. On the fifth day I noticed scabs inside the low point of the drain tube in the urine that must have numbered at least 25.
I used Tylenol several times per day for 5 days and took Flagyl for three days starting the 4th Feb and Cipro for 10 days starting the 4th Feb.
My radiation shield arrives Tues that will allow me to resume my contact with the public as an usher in the Concert Hall. [This reference to a radiation shield is most unusual. Most literature says that the external dose from seeds is so low that it cannot even harm a child sitting on a seeded man's lap.]
I am waiting for problems to fall on me in the next few weeks but so far so good!!! The next step is a flow test mid March to see if I am holding anything in the bladder and another 90 day Lupron shot on 5 April.
Later: Its now 19 February - two weeks after the procedure. I am now able to lift more that twenty pounds. I was able to sleep 3 hours in one stretch last night.
Technical date regarding the radiation pattern. At the time of the implants the nuclear engineer, Dr. Passo measured me at 0.8 Mil Ren front and back and about 0.03 on each hip. The radiation shield was worn into the treatment facility to allow Dr Passo to take additional measurements. The front and back radiation was reduced from 0.8 Mil Ren to 0.015 Mil Ren which Dr. Passo said was safe for anyone at the Concert Hall. I spent the money and took the time for in-situ testing because I wanted to make certain I was not a radiation hazard for the public. It is better than saying I am sorry I believe I did the best thing I could. Now I know I am safe!!
Later:22 FEB update for those persons interested in using the lead impregnated shorts.
I dressed for the Concert Hall using Depends under regular tighty-whities and the two pound lead impregnated shorts. The assignments for the Concert Hall was at 7 PM so I voided at 6:45. It was sold out house: I was busy with 80 patrons for 30 minutes. My contact with each was 5 to 10 seconds, which is well below any kind of threashold that could cause problems making the need for the shield un-necesary. However, because of the shield I was able to safely sit within 3 feet behind patrons with out concern and listen to the program. Otherwise I would had to stand for the performance six feet away from any patron. For those planning on using the shield, be aware that it is impervious to water. I found this out when I voided at 9:30; I was wet from body perspiration that did not evaporate through the shield.
Yes, I did buy a 16 count package of Depends. I used the same one every night for a week starting the day my catheter came out! I am 38 days into a 90 day Lupron shot as part of the ADT. I have not had any side effects from the shot. My Uro wants me to have another 90 day shot in April. Maybe the Advodart interacted with the Lupron and reduced the side effects?
5 March 2010 marks 4 weeks living with the seeds and the 90 day Lupron shot. I had a PSA test much too early but since I had scheduled an annual Physical before I was diagnosed, I had them add the PSA test to the blood work order.
PSA 24 Feb 2010 was 0.2 down from 0.3. I am up 4 times a night for a visit to the tinkle station! During the day I have learned to recognize that when I get out of a chair I have 90 seconds to find a toilet. Stool softeners helped the hemroid. No accidents yet.
The Lupron kicked in this week with Hot Flashes at several a day. Flowmeter test the end of next week before I see the Uro. I am wearing the leaded shorts to the concert hall until 5 April.
My urologist took a Urine sample on the 15 March 2010, grew the culture; prescribed Macrodantin on 25 March and I spiked at 102 on 26 March after two tablet. and wound up spending quality time with the great emergency room crew at Inova Fairfax Hospital, Fairfax VA. I was admitted to the hospital and the intravenously administered antibiotics from the ER needed help over the next two days to knock down the fever.
I am not sure who I should reach out too when I have the next Urinary Infection. This is the second UI I have had using my Uro's medication and both times it has gotten out of control.
I was able to park my car today and hold voiding for 5 minutes while I walked to a rest room. I was very happy I made it with no leakage.
I am currently on 750 MG of Leviquin for 10 days from the hospital to finally clean up the infection. Maybe that is why I got 3 hours of undisturbed sleep last night. Things are better.
Apr 2010 my PSA had dropped to 0.1. Received a 90 shot of Trelstar on 8 April. Still having urinary tract issues.
May 2010 The Trelstar has hit be harder with hot flashes that the Lupron. I got very concerned about UI after my hospitalization about early detection. I have made arrangements to see my GP rather than my urologist regarding UI.
Jun 2010 The Trelstar is still kicking hard and will until early July. Urinary problems starting to get a little better.
I have changed my diet to more salmon, fewer potatoes and lots of dark green veggies and more fruit. I have not gone to the vegan diet but have replaced beef with chicken. As add more aerobic exercise to my program and change my diet I wonder it any of these changes will make a difference as to the probability of having a PSA rise several years out that will signal my participation in life ADT! [Trelstar® is a form of ADT]
22 JULY Urinary issues predominate with stress averted just in time; it controls my life.
The 90 day shot of Trelstar is now still active 114 days after injection. The hot flashes are getting lighter but they are still waking me at night. I have been getting Urinary infection too often, but caught last one very early and was treated with Leviquin, 500mg.
I am not sure that I will have any worthwhile future comment regarding my treatment unless my PSA starts to rise. [Hopefully Robert will continue to comment as time goes by - the best thing that newly diagnosed men can hear is that "Life goes on after a prostate cancer diagnosis"].
I was treated almost 2 years ago and have been attending local USTOO chapter meetings.
My Uro uses Quest Labs which has returned a PSA of >0.1 each time. However I used INOVA system through my Primary Care provider last fall and got the latest PSA reading of 0.008! I am waiting for the PSA bump to emerge. So far so good!
I was told by my Urologist that the 160 seeds provided me with radiation dose of 100 to 120 greys of radiation. The radiation proctitis that started to hit me 18 month ago was more annoying rather that debilitating. It comes and goes; the last time being reduce to bouts of gas discharge with no fecal material issues. The best news is that I am sleeping 4 and 5 hours at a stretch instead of 2 to 3 hours for the last 2 months.
I have been taking 2000 units of D-3 each day that has built by D level from 29 to 39, eating blur berries and raspberries for breakfast. I am avoiding beef and pork, embracing salmon, tilapia and chicken to a point that my wife is fed up with my diet.
I have reflected on what I should have done differently after listening to several hundred stories of attendees at all three of the support groups. I should have held off and accumulated more information and conducted more tests.
- Should have sent my slides to Bostwick labs for a 2nd opinion rather than a local radiation Oncologist. One of our group was diagnosed Gleason 9, Bostwick assessed his slides at Gleason 7. That was an eye opener.
- I did not pay enough attention to side effects and quality of life issues prior to treatment, just a "cure". I have had two years minor difficulties that may have been avoided by going the Proton Beam treatment route. Suppose I survive 10 or 15 years, I have spent a major chunk of time dealing with side effects.
- I did not seek out the recognized center of excellence for the treatment of PCa that had the lowest recurrence rate of Advanced PCa 10 years after treatment. I used my local provider.
- I did not seek out a PCa patent advocate that would dig holes in my research and point me to the best treatment options available.
- I needed somebody at the USTOO groups to slap me hard up the side of the head and point me in another direction.
Yup!! I am expecting much too much of a bunch guys that want to help the newly diagnosed by sharing our stories that I hang out with monthly. I have spent two years in three different groups listening to everyone stories before I recognized how I might have improved my own situation.
There is a limit to what a newly diagnosed PCa patient can digest and your smiling Urologist is not going to explore with you a lot of what ifs that he believes are not germane for your condition. I needed professional help from a trusted agent with no financial interest in my choice of treatment who did not smile at me who would bring up to speed in two or three days before treatment.
So, maybe all my gnashing of teeth is for naught. Maybe I am "cured" and I will never have to join the ranks of the tough guys and their heroic spouses who are dealing with the management of their advance cancer!
SO FAR SO GOOD! Happy New Year everybody!!
The proctitis I experienced previously seems to be backing off to periods of gaseous discharge without any fecal material every few months. It has been three years since treatment. Each PSA at Quest is >0.1.
I seem to be experiencing low flow, 8ml/sec (gress) with frequent urination. When to see a different Uro to check for retention and found that I had no retention.
My D3 got up to 64. I stopped the 2000 Units of D3 and take only the 700 Units in the multi-vitimin.
It took several months to have the d level drop to below 40. Uro want me between 30 and 40!!
The rest the PCa patients I know are taking 2000 to 5000 Units daily and maintaining a blood level well over 50.
I have been waiting for the PSA bump 18 to 36 months after treatment. I have a visit to the Uro this month for blood work and flowmeter test.
I have reduced my Advodart consumption by about 50% to improve my libido.
I am taking 1000 microgram B12 to ward off neuropathy, unrelated to PCa.
I am still taking 400 mg of cranberry twice daily to ward off UI.
Recently, sleep has started to improve; once a week I sleep for 6 hours straight.
I follow the activities of the Advance PCa patients so that I have a knowledge base if every l join the ranks of the tough guys with Advance PCa!
Radiation Proctitis is appearing less frequently with reduce intensity. I stopped the Avodart in Feb 2013 which improved my libido. However, my urine flow is starting to slow. Sleep is slowly getting better in that I can some time get 6 hours.
I have provided my blood work for PSA last week; results on 8 Sep; I have been taking Cialis 5 mg for BPH and it has helped.
I signed up for 23andme before the FDA shut down the medical report function.
Risk of PCa recurrence was set at 25%, about 8% higher than average.
Risk of Corectal cancer was about 6%, about 1% above average.
My proctitis has gotten worse this year. More frequent gas and small discharges of fecal material than I have had for the past several years.
Unable to sleep through the night; up at least once or twice a night.
I wiill report if my PSA rises.
Since going into retention Nov of 2014 I have been self catheterizing twice daily to void my bladder.
My Uro indicates that the radiation from the seeding has damaged my bladder. I am uncertain if this is an activity I will be involved with for the rest of my days.
I had a UTI in April 15 that is clear now.
I boosted my cranberry ftom 450 to 800 mg.
I now use an iodine wipe on the effected are before cathing.
My Ero had me drop flowmax. I take rapaflow and proscar currently.
Additionally, I take versecare calm my bladder which in turn allows me to get 4 or 5 hour sleep at night.
I may well have a long term durable remission, ie no Adv PCa, after 63 month since treatment.
I just knocked on real wood!!!
I went into retention 1 year ago and have been performing self catheterization morning and night to keep the urethra open since then. The bladder muscles are damaged and are not strong enough to push the urine out of the bladder.
The goal is to open the path by increasing the size of the catheter over the next six month to reduce the volume of urine in the bladder.
I searched this site for references to self catheterization and did not find very many references that related to my situation.
I continue to self-catheterize seeking the most suitable coude tipped catheter. My new uro inspected my plumbing and suggested that a curved tip catheter would be more suitable than the the straight tipped catheters I had been using previously. Since I changed my wash and lube technique with smaller diameter devices my UTIs and bleeding have abated. My uro suggested that I have learned more about catheters than any patient he has ever treated. Enough about catheters unless you are having problems and want to reach out.
No issues from any blood tests.
I am starting to get dribble after voiding. My old Uro was concerned that I was not doing Kegel exercises. I try to do one every time I void for 10 seconds. I am assuming that as I get older my old Uro was concerned that the break down of small blood vessels from my radiation treatment in the urinary trac might eventually lead to incontinence.
I am currently a coordinator in one support group, on the planing committee for another and the oldest recovering PCa patent in another. I have noticed that more newly diagnosed patients have advanced PCa than I saw 5 years ago.
It would appear that I might be enjoying a durable remission, not a cure, that may last a lifetime! The side effects from treatment may always be with me.
Robert's e-mail address is: email@example.com