I was symptomatic from August 2011 initially dignosed with BHP following an ultrasound with recommendation to follow up in 6 months. January 2012 extreme urinary problems presented to GP and referred to urologist. Biopsy done in March 2012 18 out of 18 segments positive all gleason 9. Cancer volume in each segment was between 80% and 100%, PSA 4.4. surgery not an option. perinueral invasion present, lymphovascular invasion present.
Imediately began eligard injection and daily tablet cyprostate ( later changed to Anandron) elected to have HDR brachytherapy and external beam radiology. However urinary symptons precluded this until I underwent TURP in May 2012.
Urinary symptoms and infection took 4 months to sort out. HDR brachytherapy now out of the equation as risky because a large amount of prostate material was removed during the TURP creating a high risk situation for incontinence.
Original CT scans, bone scans and chest Xray were negative for metastatis apart from lymph gland enlargements to be followed up in 6 months.
Treatment will now begin October 22nd with IMRT radiation treatment over 8 weeks and continuing ADT for approx 18 months.
Further update to follow after IMRT treatment begining 22nd October 2012.
It is the 2nd February 2013 and I have just received my PSA results since completing radiation treatment on my prostate on the 28th December 2012. I am also on ADT and expect to remain on ADT for at least the next twelve months.
My PSA came in at 0.04 as opposed to my last test carried out in July 2012 of 0.08. So it appears that things are as they should be. During treatment I experienced the following side effects: Urinary pain and frequency so I began Flowmaxtra tablets and ural satchets. I experienced a lazy bowel syndrome (which I still have and just put up with it) Increasing fatigue in particular in the later stages of treatment. I had attacks of nausea and was fortunate enough to discover the benefits of "Ginger" in particular brewed ginger beer and raw and processed ginger pieces which relieved these attacks greatly.
So at this point in time I am prepared to just get on with the rest of my life monitoring my PSA every 4 months or so. I will continue on my 4 month Eligard implant to continue my ADT at least for the next 12 months and then re-evaluate the position. I continue to manage my side effects of the treatments and ADT as best I can. I will endeavour to update my health position if any changes ocurr otherwise I will report in 12 months.
Update 5th August 2013
For personal reasons I have left the care of my former urologist and now am under the guidance of my GP for all my health matters and monitoring indispersed with visits to the urological department at the local hospital.
Over the past couple of months I have been experiencing bouts of increasing side effects from the ADT plus increasing aches and pains and sleep disturbances. Because of these increasing symptoms I have undertaken blood tests and scans to find some answers.
The following information is a brief description of where I am at the moment. If anyone is interested in the nitty gritty of my health update I suggest you go to my public blog on this link and look for the article "My Cancer Voyage...........How's it Going".
My latest PSA result is 0.03 which is great. A bone density scan indicated I now have osteopenia a precursor to osteoperosis.
I have been diagnosed with type II diabetes and to top all this off I have been diagnosed with an enlarged fatty liver.
The good news in all of this I suppose is that the cancer is still in remission but I now have multiple medications and lifestyle changes to attend to. It never seems to stop does it?
Update 27th April 2014
The last sentence written in my previous update " It never seems to stop does it" is very true. Since that was written I developed symptoms of blood in the urine that has now been diagnosed by a procedure called cystoscopy as radiation induced bladder cystitis. This is a rare side effect these days as radiation delivery methods have improved so much and dosage is able to be modulated and distributed so accurately. I am now awaiting final treatment for this condition in a hyperbaric chamber.
As a result of the diagnosis of radiation cystitus I was able to discuss my options with a radiation oncologist who has recommended the hyperbaric chamber with oxygen. Before I can begin treatment I will be having a colonoscopy in the next few days to investigate any bowel issues I may have related to the radiation treatment I received in 2012. The results of this investigation will determine how long my treatment will last.
Hyperbaric oxygen treatment is basically treatment received in the chamber where atmosheric pressure is increased and a patient breathes pure oxygen for a period of time daily for approx 30 to 50 daily treatments. The science behind this treatment is that by breathing pure oxygen under pressure allows the oxygen to reach the blood vessels in the wall of the bladder and assists the healingg process.
Radiation Cystitis is a rare complication of the bladder caused by treatment of radiation therapy to the pelvic region. Reports indicate it may occur in approx. 7% to 10% of prostate cancer patients undergoing this procedure. The side effects of treatment can be immediate and acute or perhaps develop months or years after completion of treatment. In some cases radiation side effects can be resolved fairly easily but in other cases they may be more difficult to treat and this can have lasting effects on a patients quality of life and there is a possibility of mortality from urinary blockages causing kidney problems and also a life threatening infection called urosepsis
After my prostate cancer diagnosis and regarding the decision making process we had to make. We made our decision based on advice from specialists and our own rushed but thorough learning curve of radiation coupled with ADT. We were aware of the radiation consequences just as we were aware of the surgical and ADT consequences but at the time there really was no other alternative. Today having come this far down the track experiencing most of the side effects we read about then and now here we are with this issue needing to be dealt with: BUT EVEN WITH THE BENEFIT OF HINDSIGHT WE WOULD STILL MAKE THE SAME TREATMENT DECISIONS TODAY.
In other news updates:
My last PSA result was in February 2014 and the result was steady at 0.02, as a result of this I have stopped my ADT (Eligard) as of the 14th March and will monitor the situation as it develops. My two year diagnosis anniversary has just passed and caused a bit of philosophic thinking. However I am still here and looking forward to the next few years to see what they bring
Update: April 2015
Since my last report where I had been diagnosed with radiation cystitis and began Hyperbaric Oxygen Treatment in May 2014. Toward the end of the two month treatment I was hospitalised on two occasions for urine retention and bleeding. Another Hyperbaric patient recommended a local urologist in Townsville to me as it was obvious that the hyperbaric treatment had failed. I subsequently attended the urologist who performed a series of procedures using diathermy with the green light laser to cauterise the blood vessels to try and stem the bleeding issues. The urologist also performed another TURP to alleviate urinary pain and symptoms. All of these procedures took place between June and October 2014. During the same period I was hospitalised on several different occasions in three different hospitals with urinary bleeding and blockages. My blood count was falling and I was given blood transfusions, it was clear these events were becoming life threatening.
In late October 2014 I had an MRI scan by a new type of imaging machine for Townsville. It was a 3 tesla multi parametric MRI. This scan was amazing with such clear definition and revealed a bloated thick neucrotic bladder that was fragmenting and sloughing away. It also revealed active cancer cells and tumour in the prostate bed and the bladder neck. My last resort was big time surgery to remove the bladder and the remains of the prostate. My urologist had the experience and skills to perform this delicate procedure and had performed many similar operations successfully. I was concerned as all my previous reading had led me to believe that major surgery in the pelvic area after radiation treatment was not an option. This was because radiation treatment can cause tissue in the organs to fuse and make surgical separation highly risky. In my case the urologist was confident there was a plane between the rectum and the prostate bed but we had a colorectal specialist on stand-by just in case.
The operation took nearly twelve hours to perform and two weeks hospitalisation to recuperate well enough to go home. The surgeon successfully removed the prostate, the bladder, lymph nodes and appendix. Repairs were made to two small hernias and a stoma was created using an ileal (part of bowel) conduit that will provide a urinary pathway to an outside pouch. I was extremely thankful that all went to plan and the prostate was able to be separated from the rectum saving me from having two stomas to deal with.
The Pathology report was unable to clear the margins on the organs as they were fragmented but it appears that all the previously identified cancer tumours were successfully removed. The lymph glands were clear as was the appendix. I just may have got away with this by the skin on my teeth. I will be forever grateful to the extremely gifted and skillful Townsville urologist.
It is now May 2015 and I am feeling better health wise than I have been in the past three years. My PSA is still nearly undetectable as it had been throughout this ordeal. My future for now is six monthly monitoring and fingers crossed. I don't mind as I am feeling so good and the urostomy and pouch are not creating any real issues.
It is interesting to me that my original primary treatment radiation and ADT had not eradicated fully the cancer cells and tumour. During and after primary treatment my PSA readings were consistently negligible even though the cancer was still active?? Still I have read that some prostate cancers do not express much PSA.
I have read that less than 5% of prostate cancer patients will suffer radiation damage to the bladder or colon. That may be correct, but I can say being in the so-called less than 5% is a horror story of gigantic proportions. Since I have had my surgery I have been contacted by two other men with the same problems who were scheduled for the same surgery, and they were seeking advice from me. I have a near neighbour who was diagnosed with prostate cancer at the same time as me and also had radiation and ADT as his primary treatment. He saw me recently seeking information from me as he has just started to bleed along with clot retention.
Things have been quiet for me since my last update,basically on active watch and wait stuff with PSA tests every six months. Unfortunately for me my PSA; readings since July last year have been rising ever so slowly or so it seems. Since ceasing ADT in March 2014, when my PSA seemed stable at nearly undetectable of 0.008, all the way through to July 2015 at 0.008, then rose to 0.026 in December 2015 and then to 0.043 in March 2016. This is a little concerning for the moment as I wait until my next test due in September 2016. There are really no more treatments for me at this stage until and if I prove to have biochemical recurrence. Then my options will be to recommence ADT and/or chemotherapy and other drugs as may be required.
As for my immediate health things seem to be going OK. I have become an expert caring for my stoma and appliances and as this has hindered some activities at times, it has been a real blessing for me in every other way. Fatigue issues continue to knock me down a bit from time to time and seem to appear suddenly. I had to have cataracts done in both eyes late last year as a result of damage due to radiation treatment received for skin cancer of the nose back in 2014. This was an expected side effect of the treatment as I was informed by the radiation oncologist prior to treatment that this would be the case at some point in the future. I do not have much else to report at this time but should have more news after my September meeting with PSA news and my urologist. So until then I wish everyone the best of health in body and mind.
My apologies for not updating my position earlier but things have remained fairly constant with me since my last update in 2016 apart from my PSA readings which have continued to climb with a doubling rate of approx 4 months.
My PSA nadir occurred in 2013 at 0.008 when I stopped ADT in March and remained at this figure for some time even during and after they found the radiation damage and active cancer cells in my bladder. I had salvage surgery in November 2014 removing my bladder, prostate gland, appendix and lymph nodes. The PSA remained at 0.008 until August 2015 when it rose to 0.013 and then slowly proceeded from there until my last reading in February 2017 when it was 0.25. In March 2017 my urologist and I agreed I should have a gallium 68 PSMA scan done. This type of scan is very new and can pick up mets at about a PSA reading of 0.20. I had this scan done and the results were negative for me so there was no other option but to continue to watch and wait. The PSMA scan here in Australia is very new, expensive and not covered by Medicare so it is a personal cost for patients
I am due for another review in September 2017 including a PSA test So I really have nothing much else to report for the moment. Health wise I feel much the same, still have episodes of tiredness, Difficulty bending and doing physical work, If I do too much physically I usually pay for it over the next couple of days. I continue to get aches and pains from time to time that come and go but I have to remind myself of my age.(70 in September)
I am still off the ADT but I am expecting to have to decide if I will go back on it if my PSA continues to rise. I am not sure of the decision I will make when faced with it as the side effects of it are still fresh in my mind. It was five years ago last March when I was diagnosed so I have had that time and am grateful. It has been an unusual rocky road for me with the issues I have faced caused by the radiation damage and installation of the urostomy stoma. I have seen it written in a lot of places that everyone's experience with cancer is different and in my case I have to agree. Still - here I am still waiting to see how it all pans out in the end. I will try and update my story as it unfolds with any changes to my condition or treatment as they occur in September
Lee's e-mail address is: lee.popeye AT bigpond.com (replace "AT" with "@")