Davekc10’s diagnostic journey

User

Posted 01 Nov 2022 at 11:44

I have found the ‘journey’ type threads quite useful so I thought I would start a couple about my own diagnostic and treatment paths.

Prologue

Some people may think my reporting is not too serious. Trust me, I have been living under this shadow for almost a year. In the beginning I had all the “ I have cancer” thoughts. I have worried about my family, I have worried about myself, I have quietly sobbed to myself at 2am and I have stared out of windows at nothing. I became lethargic and lost interest in my hobbies.

Being diagnosed with cancer does change your outlook and priorities. However I have now used up all my tears and decided it is what it is. I do not mean to offend, just inform. If this post and the ones that I have planned to follow helps one man to get a PSA test or give him a better nights sleep I will be happy.

I am not an expert, just experienced and all views are my own. My PCa is being treated by NHS Scotland so you may find some U.K regional differences in procedures and timeline.

At the time of writing I am 63 years old and retired for almost eight years.

Diagnosis Chapter 1

09/12/21 I was called back to take another blood test ( nothing to worry about, just another check! ) by my GP after I had attended a previous “ well man clinic “. I did not realise that the clinic included a PSA test ( not all do ).

14/12/21 Blood test result PSA 5.2

17/12/21 GP Digital Rectal Examination (DRE). Oh good I thought the surgery has gone computerised, how wrong was I😳. I am convinced many men put off checking for PCa because it’s “down there” and are frightened or embarrassed by the examination. Get over it! It is not an issue. Just recite this happy tag line I thought up.

“Do not linger get the finger”☝️It could save your life.

Referred to Urology dept of local hospital which is apparently a Centre of Excellence for this sort of thing.

06/01/22 DRE by doctor at hospital.

31/03/22 Latest blood test result PSA 5.4

28/04/22 Pelvic MRI.

10/05/22 A 1cm suspicious lesion in my prostate. The doctor took the liberty ( his words, not mine ) of arranging an ARTEMIS targeted biopsy for me. Some people have told me that I should have been included in the decision making. I later found out that the doctor involved had a very old school paternal view of medicine i.e I am the doctor I know best. To be perfectly honest on this occasion what would my input be, something like “ I think I will try drinking ginger tea for a month”

I am really grateful that the doctor put me on the waiting list early.

End of chapter 1. I am doing this in chunks so that I can get enough posts to enable me to use private messaging and that boredom does not set in for me and of course you the reader.

Top Tip: Do not look at American YouTube videos about prostate cancer 🤔😂 ( I know you already have 🤬)

Rgds

Dave

Edited by member 13 Nov 2022 at 18:13 | Reason: Not specified

User

Posted 01 Nov 2022 at 13:38

Diagnosis Chapter 2

The dreaded biopsy!

29/08/22 Biopsy at my local Hospital. I was not looking forward to this. Historically I have a problem with hypertension and my B.P was through the roof. Luckily the nurse managed to calm me down and I got relatively “normal” readings for me.

This was going to be an ARTEMIS targeted biopsy which meant my MRI scan was going to be used in conjunction with a real time ultrasound probe up my rectum. A device would also take the core samples from the prostrate.

I turned up at the hospital at 1330hrs and told that I would be patient number four ( i.e last ). I put on my fetching surgical gown ( does my bum look big in this? ) and if your ship called dignity has not departed by now it will today! I was asked if had brought a urine sample and a pair of slippers, negative to both these questions. Could this be the start of a pattern of a lack of detail in the appointment letters🤔.

I gave a sample and put my shoes back on. Blood was taken and I was given some intravenous antibiotics and some water to drink. I had gleaned from the internet🤬 that the ultrasound was about the size of a thumb, aye the thumb of a fifty foot tall giant!

I was wheeled into the theatre and saw a young girl holding something similar to curling tongs with two condoms on the end! At least I was not going to get pregnant.

I have now reached the stage in life that police officers etc look so young. This girl was of course the doctor. She did a DRE and as mentioned before I had to ask is it in yet because her fingers were so delicate and not the size of a rugby prop forwards fingers that I had experienced in previous DRE’s. A local anaesthetic was administered to the nerves around the prostate, I did not feel anything and then sixteen core samples were taken. I honestly did not feel a thing. The experience can vary from man to man. The guy next door in the recovery room thought it was painful.

I was taken back to the recovery room at about 1530hrs. Another trend you will find is that you will not be able to progress until you have passed urine. Because I gave a sample at the beginning of the afternoon my bladder was somewhat depleted. It took numerous cups of water and I eventually passed urine at 1830hrs much to everyone’s relief, it meant some nurses could go home and I didn’t need a catheter fitted ( the thought of a catheter gives me the willies 🤔😂 ) I was sent home with a course of oral antibiotics.

I had slight blood in my urine for three weeks.

15/09/22 Had a meeting with the specialist nurse to discuss the biopsy results. This meeting was taking place during mourning for the Queen and the nurse was wearing a black armband. I was praying that this black band was for the Queen and not an indication of how my meeting was going to go. I thought it might be something symbolic like the black hat that hanging judges would wear before sentencing.

Biopsy results 8/16 cores had cancer Gleason 7 ( 4+ 3 ) PSA 5.5. Could be better, could be worse🤷‍♂️

Rgds
Dave

Edited by member 23 Nov 2022 at 10:52 | Reason: Not specified

User

Posted 01 Nov 2022 at 17:12

Originally Posted by: Online Community Member

Top Tip: Do not look at American YouTube videos about prostate cancer 🤔😂 ( I know you already have 🤬)

Rgds

Dave

Great post Dave. Glad you are on the other side of diagnosis now and looks like your treatment plan in place.

I don’t agree with your top tip though 😂 of course I looked as I did at every possible thing I could when my husband was diagnosed 🤦🏻‍♀️

My husband was diagnosed advanced, PSA 8.3 with spread to lymph node and pelvic bone. I watched some American YouTube videos on Oligo metastasis, so from that tried to find a surgeon that would still remove his prostate and then deal with the mets later. By taking this route we got a second opinion and they disagreed about the bone met so he had the op and lymph node removal and touch wood still has an undetectable PSA. He’s recovered really well from the op and didn’t find the whole thing too bad really. It saved him a lifetime of HT and also chemotherapy. So for us it really did change everything. Still no idea of what the future holds of course but for now life is good again ☺️

Best of luck with your upcoming treatment. Will watch for your updates. 👍

User

Posted 02 Nov 2022 at 11:27

ears on fromHi Dave,

Looks like you are getting to grips with the system that can be very worrying for men on the same trip.

I am a few years on from you and found the less i knew about the next procedure the better i felt.I was diagnosed by a private inspection by my Doctor so i could renew my 7.5 ton HGV license and microscopic blood was found in my urine with PSA 2.19. Biopsy found 5 out of 20 samples positive.

I was given a choice of Robotic surgery or Brachytherapy and went for the Brachytherapy after a lot of reading up on the side affects .I am 6 years on with PSA 0.04 and was signed off by my Specialist in January 2021 with yearly blood tests.Not at the end of the journey yet ,but at 76 not to bad.

Good luck John.

User

Posted 02 Nov 2022 at 17:35

Diagnosis Chapter 3

23/09/22 In Depth Pelvic MRI.

28/09/22 Full body bone scan at local hospital. I was beginning to get worried again because at the time I thought this meant the prostrate cancer could have migrated to my bones. I eventually discovered that this scan is almost routine.

The procedure started with a visit to Nuclear Medicine in the morning and I was injected with a radioactive marker. Luckily I am a 10 minute drive from the local hospital so I was sent home and told to return in 3 hours time for my scan. I found the scan very relaxing compared with a clunky MRI scan.

Was sent home to drink lots of water to get the radioactive dye out of my body.

10/10/22 Results day!😳

Before I had a meeting with a specialist nurse to discuss my scores on the doors I had to take an International Prostate Symptom Score ( IPSS ).

This is a questionnaire which consists of seven self assessment questions about your flow rate over the previous month which you mark 0-5 i.e

Incomplete emptying, Frequency, Intermittency, Urgency,Weak stream, Straining and Nocturia.

If your total score is 0-7 it’s mildly, symptomatic 8-19 moderately symptomatic, and 20-25 severely symptomatic.

I think I scored 7 or 8.

These scores are used to help plan your treatment options. Nobody actually told me how important this questionnaire was, if they had I may have taken a little bit more time over it.

The conclusions of the Multi Discipline Review Team. T2A, NO, MO. PSA 8.3 ( it’s beginning to rise ).

I was told that I could have any treatment I want. I really did not want a Radical Surgery so my first choice was Brachytherapy and if I could not have that I would then choose Hormone/Radiotherapy Treatment.

Handover of control of my cancer was now given to the hospital in the big city, The Beatson West of Scotland Cancer Centre in Glasgow.

Top Tip: Apparently “brachy” means short distance in Greek👨‍🎓

Thus ends my diagnostic journey. I will shortly start a new thread in the treatment section. I feel like J.R.R Tolkien.
“Onward Bilbo to the next thread” 🧙‍♂️

Rgds

Dave

Edited by member 06 Jan 2023 at 16:45 | Reason: 5/1/23 just found out about IPSS

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