3 Month Telephone Consultation

On Wednesday morning I had my 3 month telephone consultation with Claire, one of the Brachytherapy nurses, from Guildford. Claire had booked two previous consultations but unfortunately we missed each other both times.

Claire started by telling me that my PSA (Prostate-specific antigen) level has reduced from 4.1 to 3.9. I was concerned that this wasn't much of a decrease but Claire reassured me that it was bang on target. My Testosterone is classed as normal (I've forgotten the numbers) but I am still taking my Tostran supplement so my pituitary is not quite right yet.

I spoke to Claire about the discomfort I've been experiencing when urinating and she explained that the nerves creating the pain surround the Prostate gland and although the pain feels like its coming from my penis it isn't. Two Ibuprofen tablets 3 times a day should help.

My Prostate is probably at it's most swollen now, the radiation remains effective for about 6 months so I'm at the half way stage. I've been feeling very tired and getting up a couple of times each night for a pee hasn't helped. I'm looking forward to the time when I can sleep through.

I'm looking forward to the Christmas break, I go back to work on the 4th January so should be quite relaxed. Plenty to do though, Bev has lots planned (having a spring cleanout). January is looking busy starting off with 6 days at the Tower Hotel for Eclipse and then prepping for an Education summit in London for CTF.

Also looking forward to the end of February when Bev & I go to our favourite resort in Mexico for 10 days. Hope everyone has a great Christmas & a very happy New Year.

1st December 2015 updateTamsulosin

Today is the 76th day since my BrachyTherapy operation.

For the past few weeks I've noticed some side effects of the treatment, and although not serious they are quite irritating.

I was sleeping quite well and not rising in the night for a pee. Over the past few weeks I have been waking roughly every 3-4 hours and as a consequence I've been tired during the day.

Peeing has become quite painful with a burning sensation which is worse if I haven't been drinking enough. I've upped my fluid intake with water & juices including Cranberry which seems to help a lot. I do have to run to the loo occasionally.

It's quite normal for the Prostate to enlarge at this stage of the treatment and this has restricted the flow when I pass water. I'm still taking Tamsulosin which help reduce the swelling along with off the shelf anti-inflammatory tablets.

Enlarged Prostate also gives the sensation of a full back passage which is a bit annoying, there is also some soreness.

Tomorrow morning I'm having my first PSA blood test since the procedure so I'm hoping it will show a marked decrease. I'm also having my Testosterone checked.

In two weeks I have my second telephone consultation with the Cancer nurse at St Lukes to discuss the PSA results and check my progress.

Thats all for now

Monday 28th September

In my last update I said I was going to write some reflections of my treatment so far. I'd planned to do this earlier but I thought I should wait a few more days.

Today is Monday 28th 11 days post operation and I'm feeling much better.

The senna tablets helped and I had no trouble with my first bowel movement, there was no bleeding. I'm continuing to take Senna tablets as they do seem to be helping. I have experienced some slight incontinence and I have found myself rushing to the toilet several times. The feeling of a full bladder is still present, but nowhere near as uncomfortable as before.

I'd decided not to work in the week following the operation but I felt fine so I went back to work, one full day last week, and although it was a long day I had plenty of energy. Having said that I have had one bad day, yesterday. I was aching all over and felt very lethargic. Today I feel like a different person, much better.

I'm convinced BrachyTherapy has been the best option for me. I consider that I was lucky to have such an early diagnosis through the diligence of my Endocrinologist Dr Wheatley at the Princess Royal Hospital in Haywards Heath. When I first met him we discussed my family history and he agreed that regular PSA checks would be a wise idea. Those first few years formed a base test level so the small increase was spotted and further treatment advised. I owe a lot to Dr Wheatley.

I think the thing that worries me most about Prostate Cancer is the total lack of symptoms. If I had not had the PSA tests the cancer could have silently grown and I would have been none the wiser.

I would urge every man over 50 to ask their General Practitioner for a yearly PSA test. It's a simple blood test which takes a few minutes.

The National Health Service

All of my treatment has been provided free of charge by the NHS. Much is said and written about the NHS, funding, quality of service etc. I can only comment on my experiences so far.

Everyone I have met, Receptionists, Nurses, Porters, Doctors & Consultants have been excellent and I could not have wished for better service. The hospitals appear to have the latest equipment and all of this gives you confidence in the treatment received.

The various hospital infrastructures are another matter. From a service users perspective the first issue is often car parking. With various centres of excellence doted around the country it's often impossible to use public transport so car parking is important.

Hospitals evolve, they are rarely designed from scratch, and this leads to long twisting cold  corridors, hundreds of doors and tons of signage (not necessarily where it can be seen easily). In my ideal world every hospital would be relocated to an 'out of town' site where space wouldn't be a problem.

A good example is the Royal Sussex County in Brighton which is having millions of pounds spent on a huge refurbishment. Surely it would have been better to build a brand new hospital on a greenfield site and sell the existing land to partly fund this. I understand the argument about building on greenfield sites but new planning regulations do allow for this. If we can build a sports stadium surely a hospital can accommodated.

I urge everyone who values the NHS to write to their MP to insist that funding is secured to allow the NHS to improve further. 

I'd like to know what you all feel about this?

Thats all for today

 

Friday 18th September 2015

Sitting at home this evening after the operation at St Lukes Cancer Centre, Guildford yesterday afternoon.

Arrived in St Lukes at 12.00 noon yesterday and shown into the Day Surgery unit where one the the Brachytherapy doctors came in to discuss the operation and have me sign the consent form. There were three procedures during the afternoon and mine was the last so I had a few hours wait. I went to the operating theatre at around 4pm.

I was told the the operation went to plan and 86 x Iodine129 'seeds' had been inserted. I was later given a card showing total activity of the implant is 1350.2 MBq.

I recovered from the anaesthetic quite quickly and I remember thinking about my father who died from complications following prostate cancer 34 years ago. I was quite upset. I was taken for a CT scan almost immediately then taken to the Surgical Short Stay ward.

I'd never had a catheter before and the feeling was quite unusual. The tube is inserted into the penis and up into the bladder. a small balloon is inflated which effectively fills the cavity and without much input from me pee flows into a bag beside the bed. It was difficult to relax and I couldn't sleep constantly feeling the need to pee.

The catheter was removed at midnight which was quite painless however the 'need to pee feeling' stayed for the rest of the night and I suffered from slight incontinence. The volume of pee was measured and ultrasounds taken to measure the pee left in the bladder. This is done to assess the urine flow through the prostate as swelling can start almost immediately. I was given Contiflo XL 400 mgs capsules which counteract the swelling and I will be taking one capsule per day for the next 3-6 months.

I have also been given anti-biotic Ciprofloxacin 500 mgs, Ibuprofen 400 mgs and Senna tablets

I had one unpleasant experience during the night, I suffered some bleeding from the needle entry points. It was substantial but only lasted a few minutes.

Having emptied my bladder several times and the measured flow was acceptable I was discharged at 7.30am this morning.

There is some bruising around the perineum and some appearing on my scrotum which makes sitting a little painful. I went for a short walk this afternoon and felt fine.

I have a burning sensation when I urinate so I have increased my water intake which seems to help. I've also had some Cranberry juice.

I am worried that my first bowel movement may be difficult so I'm hoping the senna tablets will help.

Thats all for today, tomorrow I shall reflect of my treatment so far.

Wednesday 16th September

So tomorrow I am having Brachtherapy at St Lukes Centre in Guildford. I'll try to explain what the procedure is:

In simple terms tiny radioactive titanium 'seeds' about the size of a small grain of rice are implanted directly into the prostate gland using long thin needles. The seeds are left in permanently and the levels of radioactivity decline to almost zero over weeks and months. 

Out of the various options on offer I think the Brachytherapy is the best for me. The procedure is relatively non invasive compared to surgery, and apart from some discomfort there should be (I hope) be no long term issues with incontinence and erectile disfunction which can be happen with surgery.

The service I've received from the NHS has been exceptional. Every Doctor & Nurse involved in my diagnosis and treatment have been extremely professional & courteous . The procedures were explained in great detail in easy to understand layman terms and this enabled me to make an informed decision on my treatment.

I owe a huge debt of thanks to my endocrinologist Dr Wheatley & his team who detected the increase in my PSA level and began the investigation process.

Today I'm at home and currently waiting for the laxatives to take effect (too much detail?) and on a very limited diet until after the procedure tomorrow.

Thats all for now, I will write again following the procedure

Tuesday 15th September

Yesterday I was telling you about the first part of my diagnosis.

The TRUS biopsy (I've just looked up the technical name) was done on the 28th April and I was asked to go back to the Urology clinic on the 1st June for the results.

Mr Ahmed, my consultant didn't beat about the bush and told me that they had found cancerous cells. I can remember saying something like " Oh thats good". He explained that prostate tumours are graded according to there size and position.

Mine was a T2, slightly larger than a T1 and it would show up on a scan and PSA test. The grading also describes whether the Lymph Nodes have cancerous cells. Mine was graded N0 meaning the nodes were clear and also given an M0 meaning the tumour was completely contained within the prostate gland.

The consultant told me that tumours are also graded according to the Gleason system. 

https://en.wikipedia.org/wiki/Donald_Gleason

The Gleason system is the most commonly used grading system. It looks at the pattern of cancer cells within the gland which are graded from 1-5. The biopsy samples are all graded  and the common grade is added to the highest grade and this gives a Gleason score between 6-10. Mine was a 6, which I was assured was slo-growingand less likely to spread.

Still worrying though.

A Macmillan Nurse took Bev & I to a side room and discussed the diagnosis, giving me various booklets and explaining treatment options. It was all a bit of a whirl but it was helpful to talk to someone other than the consultant.

I'd heard lots about the Prostate Cancer charity http://prostatecanceruk.org and decided to call them to get some advice. The lady I spoke to was very helpful and reassuring. We spoke for over 30 minutes and she arranged for a fellow sufferer to phone me to explain how he felt and the treatment option he decided to have. He also said that I should do as much research as necessary.

My first appointment was at the Royal Sussex County hospital in Brighton with a Dr George Plataniotis, a clinical Oncologist, (luckily everyone called him Dr George). It was a very warm day and I'd been working in London in the morning. Bev & I had lunch in a small garden joining the clinic waiting room before the appointment. 

Dr George explained how radiotherapy works and how it could help me. He indicated that Brachy Therapy could be the best option should I choose radiotherapy over surgery. My next step was to see a surgeon and Dr George referred me to Mr Coker in the PRH (Haywards Heath).

My appointment was on the 15th July and Dr Coker explained the surgery option. He explained that most surgery is now done robotically and the local specialist was Mr Rimmington whose clinic was in Eastbourne General. So on the 6th August Bev & I went for a drive, had a nice lunch at the hospital, and saw Mr Rimmington.

Mr Rimmington was very pleasant and we spent some time discussing the surgery options in great detail. he assured me that the cancer was detected in it's earliest stage and there was plenty of time to make a treatment decision.

My next consultation was at St Lukes Cancer Centre in Guildford with Dr Laing. I had a range of tests and an ultrasound was done to check the size of the gland. Dr Laing explained how BrachyTherapy works and the options for me.

My prostate measures 31.3cc which I gather is in the 'cute' range and ideal for BrachyTherapy. It's important to also have a good Pee flow and apparently mine scored an IPSS of 8/35 (I haven't got a clue what that means). When the BrachyTherapy 'seeds are implanted the gland can swell so it's important to have a good flow. 

My mind was made up so I made the decision to have the treatment and an appointment made for this Thursday 17th September.

Tomorrow I'm going to write about the Therapy (I hope you're not too bored already).

Monday 14th September

I've never written a blog before & I'm not known for my ability to write well so you'll have to bear with me.

Today is Monday 14th and my operation is on Thursday. Up to now I think I've been dealing with my cancer quite well, I'm very positive and convinced of a good outcome but as the operation gets closer I have been worrying about the procedure more & more. I know I shouldn't but I'm finding it difficult.

Over the next few days I'll try to write about my journey. 

Here goes:

I have a Prolactinoma (a micro one at that). For those of you that don't now it's a pituitary tumour, in my case completely benign. I see a lovely consultant at the Princess Royal Hospital (PRH), Dr Wheatley. As part of my treatment I tend to have lots of blood tests including a PSA test.

PSA stands for Prostate Specific Antigen and it is an early indicator of changes to the prostate.

The NHS choices website shows the following guide for raised PSA levels:

The amount of PSA in your blood is measured in nanograms of PSA per millilitre of blood (ng/ml). PSA levels can range from 1ng/ml to hundreds of ng/ml.

• If you're aged 50-59, your PSA level is considered raised if it's 3ng/ml or higher. 
• If you're aged 60-69, your PSA level is considered raised if it's 4ng/ml or higher. 
• If you're aged 70 or over, your PSA level is considered raised if it's 5ng/ml or higher.

Dr Wheatley noticed a small increase in my PSA level, raised to 4.1, and suggested a visit to a Urologist for further checks.

At the initial consultation the doctor carried out a physical examination to check the size of the gland. Not a pleasant procedure but a necessary one. My gland wasn't enlarged but the urologist suggested an MRI scan which was carried out quite quickly.

During my followup consultation I was told that the results were inconclusive and a biopsy should be done. Again this was carried out at the PRH. I did a bit of research beforehand and knew roughly what to expect. I think the following image shows the procedure quite well:

( Opps.Not sure the diagram uploaded correctly  so I'll try it again)

The procedure is not painful, just a little uncomfortable. In total 11 biopsies were taken for checking. The doctor explained what he was doing throughout and it took around 20 minutes.