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
This is for members who may be interested in my little adventures with this disease. Since my salvage prostatectomy, cystectomy, appendectomy back in November 2014 my PSA remained undetectable until 2016 and then started rising. Over the past 18 months the PSA was doubling approx every four months. In March 2017 when my PSA was 0.26 I had a PSMA gallium 68 scan that was negative so I was back to just hanging about. My PSA recently hit 1.8 and I have just returned from Townsville after another PSMA scan that returned positive results. The news was good and bad news. Bad news because there were two mets discovered with another area suspicious. Good news because my mind was expecting much more invasion than was found. I have one 10mm tumour adjacent to my S3 vertebrae and another 10mm tumour adjacent to my rectum. The suspicious reaction was in an area near my left ureter of my urinary diversion. Interestingly no bone reactions just tissue related stuff.
Members of this forum may be surprised that I had almost made up my mind not to have any treatment based on the results of the scan if it was real bad news. My previous experience on eligard ADT and search information on chemo that I have read about led me to that decision. I was not looking forward to a downward spiral in my quality of life on these treatments. I figured my QOL at the moment was reasonable and the fact that I will turn 71 in September will do me nicely thank you and I was not looking forward to senility with adt and chemo brain.
Discussion with my urologist in Townsville has changed my attitude somewhat. He was sympathetic to my arguments but has suggested I go back on ADT using firmagon which is different than the luprons etc. The downside is of course the injections are monthly and painful for some patients, he then gave me two things to ponder about while making a decision. Firstly he guaranteed that firmagon would put these lessions to sleep for at least two years and secondly I could always choose to stop the firmagon at any time. So I have re-thought this matter since my visit and the fact that the lesions are small in number I have decided to give firmagon a go and see where it leads to.
On a related matter the patient travel subsidy scheme recently declined my application for this latest visit to Townsville. Their reason for this decision is that the Mackay Base Hospital now has a resident urologist and my treatments should be done locally. I have appealed this decision and am hoping to take this further. While I have no issues personally with the resident doctor my preference is to stay with my urologist in Townsville as we have built up a mutual respective doctor patient relationship. He was the surgeon who demonstrated great skill in my salvage surgery in 2014 and has carried out numerous other procedures prior to and since that time. My belief is that this medical relationship should continue for the betterment of my chronic condition. While I will be able to afford to travel the 1000km return trip and pay for accommodation there is sure to be other chronically ill patients who will not be able to do so. I accept that the public system has the bureaucracy to rigidly adhere to rules and that I am a public patient now. The original reason I went to this doctor was because I was then in private health and the Base Hospital in Mackay did not have a resident urologist at the time. Thank you for reading this.
Popeye
Since my last update very little has changed PSA readings since starting Firmagon injections are from 1.6 to 0.23 then 0.12 with the latest at 0.58. It appears on the rise again that might indicate the cancer is hormone resistant but the urologist and I are happy to wait until January 2020 to see where it is heading before discussing treatment options. The latest rise may be just a flare and in any case we are still dealing with low numbers so a wait and see options until January seems on track to me.
Health wise for me seems a little like a song title "Some days are diamonds, some days are stones" with the Firmagon injections it will depend on the skill of whoever gives the injection how it will effect me. A good injection will give a small amount of pain, swelling and rash for approx 2 days. A bad injection could give side effects lasting up to 10 days with issues in controlling body temperatures from hot then cold. These injections are given every 28 days.
That's about all the news at this time for my update I hope to have more interesting news on my next report. My options could be that the latest PSA was just a flare if not most likely chemo. (Which I am undecided about) or perhaps stereotactic radiation. Cheers for now.
Well its been a while since I have updated my travels through treatments for my disease. It's been a bit of a trial over the past year but for anyone interested here we go.
Back in 2018 my PSA figures were doubling every four months although they were still low they had gone from undetectable to 1.6 so I had a Gallium PSMA scan that reported three areas of interest one near my rectum, one near an area adjacent to my lower spine and one near my left ureter. My urologist recommended to me to re-start ADT with Firmagon injections every 28 days. I did this for the next year and my PSA fell to 0.2. My PSA began rising slowly again in July 2019 and reached 1.5 in January 2020 and he recommended that I should now be handed over to a medical oncologist here in Mackay.
You might remember that I had salvage surgery back in 2014 where my bladder was removed along with the remains of my prostate, appendix and lymph nodes. I had been given a stoma and urostomy bag to replace the bladder. About six months after this surgery I suffered what is called a parastomal hernia. In February 2020 I suffered a bowel blockage when this hernia became strangulated and was admitted to the emergency department for emergency surgery which thankfully saved my life. Just after I was released from Hospital I had an appointment with the medical oncologist here in Mackay and we discussed future treatments (Chemo, Zytiga and enzalutamide) she also had me start cosodex and continuing the firmagon injections. The oncologist also arranged a PSMA scan here in Mackay but it was a Fluoride based one slightly different to the Gallium one I had in Townsville in 2018. The scan returned results confirming mets to two of my ribs, rectum wall and weirdly to my left arm?
A surprise present to me at this time was a swelling on my cheek on up to the top of my nose which my GP thought might be an infection in my tear duct and I was on anti-biotics for a period that had no effect. The swelling continued to grow and a CT scan returned a finding of a cancerous tumour in the sinuses in this area. The oncologist organized for an MRI and postponed chemo for the PCA. The MRI confirmed the tumour in the sinuses and concluded that PCA met could be a possibility however a separate type of cancer is suspected possibly linked to radiation treatment I had on my nose back in 2013. I am faced with having a biopsy but seemed to have fallen through the cracks a little as they are deciding how to do the biopsy either internally or externally and two more weeks have gone by.
I have had talks with an ENT specialist and treatments for this type of cancer are a bit rough to say the least either / or combined radiation and surgery. Radiation treatment may be crossed out due to the level of exposure I had with the earlier treatment in 2012. Surgery may involve losing the eye, nose and/or top jaw bone with re-constructive surgery.
I have had time to digest all this and it is likely depending on the biopsy (when and if it gets done) to drop all further treatment entirely and head off to palliative care. I will update this further when things become a little clearer.
Lee aka Popeye
PS. My latest PSA is 2.6
Sadly, we were notified that Lee passed on in May of 2022.
