Well here we are again. After another long hiatus, I thought it was time to update you all. The lack of posts on this subject is purely down to, in part, happenstance and in part, inertia on my part. So, for that, I apologise.
So, my last post was back in 2020, following a five year hiatus. Only 28 months this time, I must be improving.
My previous post ended with me waiting for various scans, which were duly carried out, as follows:
1st August 202 – CT Scan
3rd August 2020 – MRI Scan
11th August 2020 – Bone Scan
25th August 2020 – PET CT Scan
Much as I like playing with all the NHS toys, I could do without the palaver of driving to the hospital, searching for a parking space, then waiting for my turn in the scanning department. Don’t get me wrong, I am very grateful for the attention that I am getting. Anyway, the net result of all these scans was, overall, a positive one. The scans indicating that there was no sign of the cancer around the prostate itself, and, apparently, no sign of metastasis. Prostate cancer apparently tends to migrate to the bones, or so I believed. So also getting the all clear from the bone scan was a positive thing.
Or, maybe the prostate cancer was hiding ?
Although there was no sign of the cancer around the prostate or in my bones, they did discover something in my lung !!! I became aware, very recently, that Prostate Cancer can metastasise to the lungs. So my case became the subject of one of the hospitals multi-disciplinary meetings.
Apparently there was much chin and arse scratching, bone tossing and probably some discussion about how Pompey were doing in the football league. The net is that my urologist talked to the chest doctors. They, the chest doctors, suggested that, whatever it was, was in a difficult to reach place. They further suggested that “we” should wait for 6 months and then have another scan. Then decide what steps to take.
My man, the urologist, didn’t think that was such a good idea. He felt, if this was the prostate cancer, it would be better to be proactive and treat it accordingly. Consequently he decided to start me on a course of Prostap injections.
And so it was that, on the 14th October, 2020, I started my course of Prostap. One injection every 4 weeks. This continued until November of 2021.
During this time, continuing blood tests and a scan showed the “thing” in my chest had shrunk and my PSA levels were dropping. In the words of my urologist, the “thing” had self diagnosed itself to be Prostate cancer. So we continued on with the Prostap jabs until, following a conflab with my urologist, we decided that I should take a break.
Apparently Prostap, along with most medications, comes with its own baggage. One potential side effect is the impact to ones bones, increasing the possibility of osteoporosis. With everything else that’s going on I certainly didn’t need that in my life.
I continued having blood tests to monitor my PSA and each of those was followed up with a telephone consult with my urologist. Always a very pleasant few minutes chatting followed by wishing each other well until the next call.
Latterly the calls included a concern about the fact that my PSA levels were bouncing around up to a new high of 3.2. Thats up from the zero point something I was at once the initial Prostap course was well underway.
At the end of August 2022, during a telephone consult with my urologist, it was decided that I should restart the Prostap injections. I had the first of the new course at the end of September. This time round the jabs are on a 3 month cycle and my next one is scheduled for March.
Following the last blood test, the Prostap, after only 3 months, appears to be working its magic. My current PSA level is 0.4 Great news by any measure..
From initial diagnosis, Brachytherapy in 2015 and thru to Prostap it has been an interesting experience. If, in the future, I have anything significant to report I’ll post again.
Before I go, I would like to thank all of the NHS staff who have handled my various visits to and stays in the Queen Alexandra Hospital, Portsmouth. You have, thus far, been amazing.
The journey, certainly isn’t over, but for now that is it.
So said I, five years ago. A lot has happened in those five years although not a lot in the land of the prostate. Or perhaps I should say, not a lot, to my knowledge.
In 2015 we retired, and since then, we rebuilt our conservatory, holidayed in France – 2months and Italy – 8 days. We have spent 3 stints in Australia. Those 3 Ozzie visits totalled 12 months in all with the last trip stretching into 7 months, in part due to the pandemic.
And so to my prostate …
After our return from the latest Ozzie adventure, I was scheduled for a Urology Consult (telephone) 28th July. As is the norm, these are preceded by the taking of blood samples. As my GP had requested a blood sample to check my blood sugar levels, it seemed appropriate to combine them. So on Wednesday 22nd July, at eight in the morning, I presented myself at my local surgery and provided the necessary samples. I then sat back to await the consult scheduled for the following Tuesday. The next day, Thursday 23rd, I received a call from the GP surgery, could I come in and give another sample.
Apparently they wanted to rule out any potential issues with the analysis of the previous sample. As you can imagine my brain went into hyperdrive, what had the blood sample shown. I duly presented myself at the surgery and gave up some more of my blood. Although the person on the call didn’t know why I needed to give another sample, the nurse taking my blood was a little more forthcoming.
It appears the first sample showed my PSA level was up. This second sample was to determine if there had been a balls up in the lab or if something more sinister was happening.
Friday I received call from the surgery asking if I woud be prepared to have a telephone consult, with my GP Dr Mannings, on Tuesday evening. I pointed out that I also had a telephone consult with the Urologist on Tuesday morning. That’s great quipped the receptionist, you’ll be able to tell the doctor what the results are and what your urologists plans are.
With all this interest in my blood and doctors left, right and centre wanting to speak to me my curiosity was definitely peaked.
So Tuesday 28th duly arrives and I have my telephone consult with the Urologist, Mr Hodgson. Yes, he confirmed, my PSA has risen.
Apparently last June my PSA was 3.6 but these latest blood tests show my PSA at 7.9 and 8.9. A sure indicator that something is going on down in the nether regions although still lower than the 13.3 which was where I was at before having the Brachytherapy
Because of this my consultant wants me to have a series of scans. CT, MRI and full body bone scan. The call is ended with the promise that I will be contacted with appointment details.
Sure enough, later in the day I receive a call from the Scanning Dept., would I be available on the morning of Saturday 1st August, for a CT scan ? Yes of course, and so I am duly booked in for 09:00.
Later the same day I have my consult with my GP. He already knew about the consultants plans but is like a child being handed a bag of sweets, so excited, when I tell him that already have the first of my scans booked.
The NHS is actually working very swiftly and efficiently. Obviously I have Covid-19 to thank for this, the hospitals are operating in a very stripped back mode. All to my advantage.
Over the next few days I receive calls and set up the remaining appointments. Monday 3rd August @ 19:00 for the MRI and Tuesday 11th August for Full Body Bone Scan. The bone scan is in two parts. I have to turn to at 11:15 for a radioactive injection. Go away for a while, then return at 14:30 for the actual scan. Apparently, after the injection, due to its radioactive nature, I have to steer clear of any pregnant women and young children Same advice I was given after I had my Brachytherapy.
I duly attended the three scans. One thing I noted is that I am able to lay completely still during these scanning sessions. They each have taken anything between twenty minutes and forty five minute. At home I find it just about impossible to keep my legs still, whether I am sitting watching TV or laid in bed. Maybe I need to get a huge doughnut installed at home.
For each of the scans I also had an injection. The one administered during the CT, I was warned, would trigger a warm sensation in my nether regions. Something akin to wetting oneself. Not something you want to consider when typically any sensation in the bladder region typically turns into a pee panic. As it happens, the sensation I felt was around the neck and up around my ear. Something like I used to feel when my Mum had caught me out in a lie. For the MRI I was given an injection of Buscopan. When I mentioned that my wife takes Buscopan for her IBS te doctor said it’s the same stuff but won’t hang around as long but that it might affect my eye sight i.e. blur my vision. He assured me it would have cleared my system before I got back to my car for the drive home. As for the bone scan and the radioactive injection I was informed that, other than having to stay away from pregnant ladies and young children, there were no side effects, that I wouldn’t be aware of it in my bod.
All that remained was for me to await the results. I assumed that I would receive a phone call from my consultant, Mr Hodgson.
I did receive a phone call, but not from Mr Hodgson. It was from a yong lady, I assume from the Urology Department reception.
She informed me that she was calling to book me in for a Pre-op Assessment !!!
My heart dropped, my stomach did a flip. “Pre-op ?” I said, “pre-op for what ?” “Well, you came into Urology yesterday” says the young lady. “Nope” says I, “I didn’t, I haven’t had any contact with Urology since the 28th July”. “Oh !” she says “And you haven’t seen the letter ?” Again “Nope” says I, “In fact I would have expected a phone call from Mr Hodgson, not a bloody letter”. She is really apologetic and puts me on hold briefly. When she comes back on line she asks me if I want to wait for the letter, or she could read it out to me. I take the latter option. So, she reads the letter to me. My heart and stomach resume a more calm state.
None of the three scans suggest any spread of the disease.
Needless to say, this news was not what I was expecting. Nevertheless, it was encouraging. The letter, from Mr Hodgson, set out the next steps to be taken to determine if in fact my cancer has recurred.
Those steps are
A PET CT
Template Biopsy (to be carried ot under GA and the reason for the Pre-Op)
The PET CT has been scheduled for Tuesday 25th August @ 15:00 and I have had the Pre-Op. This was in two parts. Part 1 was on Tuesday 18th, a telephone assessment which was then followed up with a hospital visit on Thursday 20th, where they carried out an ECG, swabs for MRSA and took a urine sample.
So there we are, all up to speed. I’ll post my next episode after the PET CT and when I know the date for the biopsy.
So at the end of my last post I had just escaped from the QA following my Brachytherapy procedure. This was to be a temporary escape as I had to present myself back at the hospital for a CAT scan.
So the following Monday I dutifully presented myself for scrutiny. Unfortunately it was organised chaos due to a lack of availability of notes. This is not the first time that my notes have not been available although it is more usual for them to not be available for an appointment that has been set up for weeks.
I did press the radiographer as to why it was necessary for my notes to be available when they knew that the scan was to confirm placement of the radioactive seeds in my prostate. I said that I assumed they knew where the prostate was and therefore where to target the scan.
She, very patiently, explained to me that having a scan 3 days after brachytherapy was not normal procedure. The norm is to have an MRI after about a month, so they needed to know if there were any other issues that they needed to be aware of. They did their best to find my notes, even going up to the ward to search on the assumption that they, my notes, were “in transit” due to the weekend.
My consultant must have foreseen this as he had provided me with an extension number on which he could be contacted, even though he was in surgery. I passed this number over to the radiographer and after a short chat with my consultant we were good to go.
So after nearly two hours pfaffing around I had my ten minutes of scanning and we were out of the hospital. Of course there is then a period of trepidation, waiting to hear if I was going to have to go back in for more seeds. As time passed I relaxed, no news is good news after all.
A month after the procedure I had the MRI. This was a much quicker visit than my previous MRI. I guess because this time they were only interested in checking the prostate itself and the immediate surrounding area.
Once again, there is that trepidatious period of time where you wait for the bad news phone call. And, once again, as time passed I relaxed.
The next check point in all this was to be a visit to the consultant preceded by a visit to the vampire clinic.
Which brings us up to date.
Last week I gave the blood sample required to check my PSA levels and yesterday I visited my consultant. After all the pleasantries, how is your bladder, how are your bowels, etc. etc. we eventually got round to the important business i.e. talking about my PSA.
Brilliant news !!
Prior to the brachytherapy my PSA was up at just over 13. Now my PSA reads just over 1. Which, in the words of my consultant means that the seeds are doing their job. My next check point will be in six months when I will have another blood test and another consult.
My thanks to Clotho, Lachesis and Atropos, the three fates (Moirai) for watching over me. I think they were watching over me last December when my operation was cancelled due to a lack of hospital beds. When I think about all the possibilities I am so, so glad that I have taken this path.
For those of you who are following this saga you will remember that my last post was shortly after attending hospital for surgery. That the surgery was cancelled due to a lack of availability of beds.
I think the fates intervened and the cancellation of the operation was a blessing in disguise. There were just too many risks with the operation and the potential impact to my lifestyle for the following year (at least) were just too much to consider.
So, surgery, which was always my first choice, has now been kicked into touch, and became the option of last resort.
Since December 2014 I have had follow-up appointments with Mr Wilkinson, my consultant. We have discussed fully, my reasons for not going ahead with the surgical option. As a result I was referred to an oncologist, Mr Nagar who talked me through the alternative radiotherapy options.
Given in the hospital radiotherapy department, as daily sessions from Monday–Friday, with a rest at the weekend. The course of treatment would last for just over 7 weeks.
Low-Dose Rate (LDR) Brachytherapy
This type of radiotherapy is sometimes called internal radiotherapy, implant therapy or seed implantation. This uses small, radioactive metal ‘seeds’ that are inserted into the tumour so that radiation is released slowly. The seeds are not removed but the radiation gradually fades away over about six months. There is no risk of it affecting other people.
So after a full and frank discussion with Mr Nagar I was left with a lot of thinking to do, along with more discussions with my wife. The net of this was that I decided that LDR Brachytherapy was the right treatment for me. The following images show the basics of the procedure.
And so it was back to Mr. Wilkinson who scheduled me for a Flow Rate Test. I mentioned that this was somewhat less than successful last time so he suggested that the fall back plan would be a visit to Urodynamics.
As preparation for the Flow Test I had to keep a diary, over three days, of how much liquid I took on board, the type of liquid (tea, beer, wine etc.) and how much pee I produced. On the day of the flow test I thought I would help things along by arriving at the hospital early and drinking lots of water. I spent nearly an hour walking the grounds sipping at my bottle of water. Twenty minutes before my appointment my bladder started to indicate that it would need emptying soon so I headed up to Urology. I let the receptionist know that I might have an urgent need to perform. I was directed to take a seat and to let her know when things became truly urgent. So I sat there and my bladder went to sleep.
At my allotted appointment time I was called through to another waiting area asked to sit, offered tea and told to shout when I was ready to do the test. My bladder snoozed on. It was perhaps another thirty minutes before my bladder woke up. So I looked for the nurse. No sign. Well she said to shout so I did. After all I didn’t want to waste this opportunity. Thankfully the nurse appeared and we dashed to the flow test equipment. Basically it looks something like this….
After successfully performing I was given a quick ultrasound check to see what was left in my bladder and there it was, job done. Although I had a second appointment set for a visit to Urodynamics it was deemed not to be necessary and was cancelled. Instead a new appointment with the consultant, Mr Hodgson, was set.
Time flew by and once again I presented myself for the scheduled appointment with Mr Hodgson. Sadly, not for the first time, there was a distinct lack of notes. At least the computer was working this time and he was able to access my notes that way. However, what was missing was the flow rate test results. Two sets of print outs were found from that date and I had to choose the chart from my test. Thankfully the graphs were very different and I could easily identify mine.
The results were deemed good and I was informed that I would need another rectal (digital) exam as well as having my prostate vital statistics taken.
So there I was again, trousers round my ankles, up on the couch, laid on my side with my knees under my chin. Different room but the scenery hadn’t changed just a blank wall painted in that neutral paint that all hospitals seem to choose.
First up was the rectal (digital) exam and for the first time since this whole process began I actually felt some discomfort, though not for very long. This was followed by an Ultrasound Scan during which measurements were taken of my prostate. These help to determine the shape and mass of the prostate and would be used during the Brachytherapy procedure.
Soon the scan was finished and I was back in the vertical plane. I almost had my trousers secured when I was informed that some of the data from the scan had not been saved. So it was trolleys round the ankles again, back on the couch and staring once again at the blandly painted wall. This time the scan image was saved and once fully dressed we were back to discussing the procedure and timing.
Apparently hospitals don’t keep a cupboard full of these things around and the seeds have to be procured. I wondered if they went to Suttons, Fothergills or perhaps our local garden center to obtain the seeds. I did not vocalise these thoughts. They implant 80 – 100 Iodine 125 seeds @ £30.00 each. That’s dearer than a packet of Impatiens seeds.
When my consultation was over I had to visit with the nurse for nasal & groin swabs. She was less than amused when I suggested that I had saved the NHS money by using one swab for both areas. Either she’d had a humour bypass or had heard it all before.
On 13th May I presented myself for my Pre-Op Assessment and was duly measured, weighed and gave up a blood sample.
Before I knew it a date had been set for the procedure, May 15th. This was sooner than anticipated and I will admit to going through a moment of panic.
On the day I presented myself at reception and was shown through to a consulting room. I was measured and weighed again, blood pressure taken and given some premeds, antibiotics etc.. I was visited by the anaesthetic and the consultant and signed the consent forms after having everything explained to me. Thankfully, this time, the wait was not very long between these consultations and being taken through to theatre.
Preparation for the procedure was a surreal experience, what with me being dressed in the wonderful hospital smock and stockings, also the jokey disposition of the theatre staff. We were actually having a good time and that was before I had any anaesthetic.
It was about this time that I started to misbehave. As usual they inserted a canula, except that they had two goes at that. Then they informed me that I was due to have an epidural, which had not been discussed previously. At the same time they administered something through the canula that they said would make me feel like I had consumed a couple of G & Ts. I remember feeling a little woozy and then nothing more until came to in the recovery area.
I was subsequently informed that the anaesthetists assistant tried on two occasions to set up the epidural. They are supposed to see spinal fluid come out of the needle and on each occasion I wouldn’t give any up. The anaesthetist then took over and tried herself, three more times, and still I wouldn’t give any fluid. At this point they decided that they would give up on the epidural and put me under with a general anaesthetic (GA). Once they had me under, and the procedure was underway, that’s when I really began to misbehave. I decided to vomit.
From what I have heard vomiting whilst under a GA is not good. This required the use of dyna-rod and a vacuum cleaner to clear out my tubes and the upper reaches of my lungs.
As a result of this the procedure took much longer than the estimated two hours which would be normal. A further consequence was that I had to stay in hospital overnight, when I had expected to go home, and I was wheeled up to a ward where I was connected to an oxygen supply with attached humidifier. This was so that they could monitor me and make sure that I hadn’t inhaled any of my stomach contents and didn’t suffer an infection.
So there I was stuck in hospital. Hungry, I hadn’t eaten for over twelve hours. Thirsty, no fluids other than a few sips of water prior to the procedure. Catheterised, for the procedure and for the duration of my observation. Sore throat due to the GA and subsequent rodding out and suction due to my vomiting session.
The nurses brought me a sandwich to alleviate the hunger. A cheese on wholemeal sandwich was the only choice and was so dry that it was very hard to swallow, especially kind to my sore throat …. NOT !!
This was only the beginning of the fun night. Did I mention that I was catheterised ? Through the night I was subjected to hourly obs. Just as I was drifting off to sleep along would come the nurse to take my temperature and my blood pressure. Then, just as I was drifting away again, she would come back and I would feel a pulling at my penis. This was specifically related to the brachytherapy and the catheter. She had to use a Geiger counter type device and scan the contents of bag attached to my catheter then along the length of the tube up to the old fella. Required to ensure that none of my seeds had escaped. Any found would need special handling for disposal. Seeds can escape from their implantation point and move around the body. Supposedly this is not harmful.
Saturday morning arrived and I felt a bit fresher after a strip wash and some breakfast. I was scheduled to go down for an X-ray but someone cancelled it which meant a new booking for later in the day. Hospitals are the most boring places to be when you are waiting to be released.
I was visited by the consultant who informed me that I would need to go for a scan on Monday. This was to ensure that the seeds were implanted in the right place and the right quantity. He also said I could have the catheter removed. Yippee !! His female assistant performed the removal saying “this might feel a little strange”. Decidedly unpleasant would have been my description. Mind you, after my first few pee’s following catheter removal I would have gladly had it back. The sensation is as close to burning as I can imagine and it seems like you can feel it all the way back to your bladder. Thankfully that sensation slowly faded away over the next couple of days.
The consultant also gave me a little blue card, which I have to carry for the next three years. This card informs people that I have “received a permanent radioactive iodine seed (Iodine – 125) implant to the prostate”. This is not because I glow in the dark, but the seeds will show up on various scanners and may even set off alarms at airports.
Back in the hospital, the consultant said he was happy for me to go home but that the final decision was down to the anaesthetist. And he wouldn’t give the go ahead until I had an X-ray.
Well it was nearly 16:00 when I was taken down for the X-ray and it was gone 17:00 before I was finally released. At this time I was given a box of Tamsulosin capsules.
Tamsulosin is used to relax the muscle around the Prostate which, not unexpected, can be a bit irritated following the implants. How would you feel after 80-100 foreign bodies were inserted about your person. Add to the facts that they are radioactive too. The irritation / inflammation can cause the Prostate to swell and constrict the urether making it difficult to pee.
So home I went. What a relief it was to get out of the hospital.