My story starts 25 years ago when I first began having annual Prostate checks. Up until 2014 my PSA was stable with only small rises each year which the Urologist put down to age progression.
In 2014 my PSA had risen to 4.5 but a normal DRE had the Urologist satisfied it was still age related. In 2015 the PSA had risen to 5 but again with a normal DRE. My Urologist put me on a course of anti-biotics but after six months my PSA had risen to 6.3 but once again with a normal DRE. He sent me for an MRI which came back with a highly likely result in one area of T3b Prostate Cancer. I was referred to a Urological Surgeon, who specializes in da Vinci Prostatectomy, and he carried out a biopsy which confirmed the presence of cancer, Locally Advanced and a Gleason 7 (4+3). I was offered the choice of surgery or radiation therapy but had decided from when the cancer was first suspected I would choose surgery, if it was offered, because I just wanted the source of the cancer gone!
I had da Vinci surgery on August 22cd but unfortunately the pathology on the prostate increased the Gleason to 9, meaning the cancer was very aggressive and put m in the high risk category of it still being present and will require further treatment. My first post op PSA test is due at the end of October so until then it is a waiting game.
My post op symptoms have been the following. The pain level was managed easily with panadol and only lasted a few days. A week with a catheter with no unpleasant side effect and there has been very minimal incontinence since its removal. I am only wearing a shield and this has been since a few days after the catheter was removed. It is very important to do the Pelvic Floor exercises before and after treatment as I believe this has helped me to regain continence so early. I am experiencing emotional swings which is having an effect on my wife Gale but hope this will improve as the days go on.
I have received my first PSA test result since surgery and is 0.03. Considering the pathology result after surgery indicated the cancer was very aggressive and increased the Gleason to 9 (5+4) from 7 at the pre-surgery biopsy I am quite pleased with the PSA result. Obviously the Urologist would prefer the reading to be 0 but I was expecting it to be higher.
He is suggesting I have Adjuvent (mop up) radiation done now instead of waiting for the PSA to start increasing even though, in his words, there is no conclusive evidence yet to say it is beneficial. His thoughts are with my age, 66, my fitness level and no incontinence now would be the best time to try and zap any remaining cancer cells. I agree so now I am off to see an Oncologist.
My experience since surgery has been a mixed bag. My continence returned very quickly and from only a few days after the removal of the catheter have only been wearing a shield which is just in case of but not because of any dribbles. My emotions have been a bit up and down but my state of mind has improved as the weeks have gone since surgery. I have dragged my Wife, Gale, through these fluctuating emotions and can't express enough the Love I have for her and how she has and is supporting me.
My advice to any about to start treatment, what ever that might be, do the pre and post pelvic floor exercises as I think this has helped considerably with my continence but I must also heap praise on my Urologist who is also the surgeon, he is brilliant.
It has now been almost four months since my surgery and I must say I am feeling great, emotionally and physically. My only side effect from surgery is erectile dysfunction which I am dealing with, I think, quite well. I am 99.9% continent and have been almost from when the catheter was removed. I have now stopped wearing any form of protection which I was wearing just in case. The only time, and happens very rarely, I might pass a drop is if I leave it a bit too long to empty the bladder and a drop squeezes out on my way to the loo! I must strongly recommend the Pelvic Floor exercises both before and after any treatment as I think this has brought about my continence.
I am about to start Adjuvent Radiation Therapy. This was recommended to me by my surgeon, even though he did explain there isn't conclusive evidence to support this or Salvage radiation as the best treatment. My thoughts, considering my PC being so aggressive with a Gleason 9 and post op pathology results of being to the extremities, are why wait for the inevitable PSA rise to begin radiation when there is a chance any remaining cancer can be dealt with now. Anyway, I am going to be zapped for the next six weeks and hopefully not have too many side effects to deal with.
It has been twelve months since my last update and in that time I have had Adjuvant Radiation in January/February. My post radiation PSA was the same as my post surgery result, 0.03, which suggested to me the cancer had moved outside of the prostate bed. My PSA has now risen to 0.08 but my Urologist wants to wait until it reaches at least 0.15 before doing a PET scan. While I realize my readings are very low it is obvious to me the cancer is still present and I am in for more treatment.
I haven't any side effects from radiation and my only side effect from both procedures is seemingly permanent erectile dysfunction, even though the nerves on one side were spared.
Physically I feel great and emotionally I think I am positive 99% of the time. I do become frustrated occasionally with the thought I do still have cancer but not having any treatment but understand the process being followed by my Urologist.
The result of my latest PSA test is 0.13 which has risen from 0.08 over the last four months. The urologist is sending me for a PET scan and will determine what is the next step. He has told me I cannot have any more radiation if there is cancer found in the area of the prostate bed so I assume the next step will be ADT if that is the case. Still dont have any side effects other than ED and I feel quite well.
My PSA has risen from 0.13 in March to 0.88 in October and even though the numbers aren't high the concern is the speed the PSA has risen. My doctor/Urologist sent me for a PSMA PET scan which has shown five lesions, three on my spine, one on my left hip and one in my right groin. I am now under the control of a medical oncologist who has started me on hormone treatment and soon chemo as well. The hormone treatment started with two injections simultaneously into my stomach which left me a bit sore for a few days but other than that there has been no other problems.
I am now on a combination of Taxotere and Firmagon. My first chemo treatment started in February and will have six treatments, every three weeks, ending in May. So far the side effects have been, constipation for a few days after the treatment but controlled by Movical, heartburn controlled by Nexium and Gaviscon. Each of these symptoms only lasted a few days. From about day nine to day thirteen after the treatment I start to suffer fatigue and shortness of breath if I exert myself so I keep my activities to a minimum but from day fourteen I can feel my energy level returning. I assume this is because of the low red cell count.
I have read an article regarding the treatment I am receiving and the success rate in extending life expectancy (not a cure). My attitude through my journey with this cancer has been, I'm not fighting it but living with it, so willingly will try any treatment which may extend my life.
I am currently having three monthly Zoladex implants. Since the chemo and ongoing hormone treatment my PSA has been undetectable.The side effects from the Zoladex are fatigue and minor joint pain. These side effects have very little impact on my lifestyle.
Michael's e-mail address is: michael.rust AT bigpond.com (replace "AT" with "@")
