John1947



Personalien und Diagnosen

Personalien

Sichtbarer Name: John1947
Land: Great Britain
Bundesland/Kanton: South Glam
Geburtsjahr: 1947
Alter: 76
Beruf: Commercial Property Manager
Hobbys: itunes, music, steam fairs, country walking
Meine Homepage:

Daten bei Erstdiagnose

Datum: 01.01.1999
Alter bei Diagnose: 51
PSA: 26.00
Biopsiert? Ja
TUR-P? Nein
Gleason Score:
TNM-Diagnose:
Bemerkung: Varied

Maximal gemessenes Prostatavolumen

Datum: 01.02.1999
PSA: 32.00
Volumen in ml oder cm³:

Postoperative pathologische Daten

Datum:
Gleason Score:
pTNM-Befund:
Schnittränder:
p-L-V-P-G-Befunde:
Siehe Bericht vom:

Prostatakrebs - Behandlungen

** PSA-Wert zu Beginn der Behandlung
von bis PSA** Art Klinik Ort
01.06.99 01.07.99 32.00 IMRT + HB Velindre Cardiff UK
28.02.10 01.03.10 5.40 andere Behandlung Surrey County Surrey UK
16.07.13 16.07.13 9.90 HIFU UCLH London



Medikamente

NEM = Nahrungsergänzungsmittel
von bis Medikament + NEM Menge / Zeiteinheit
Menge pro T/W/M/J etc.


PSA-Verlauf    ng/ml    logarithmisch

PSA-Verlauf    ng/ml    linear

PSA-Verdoppelungszeiten in Jahren

Verdoppelungszeit ist zur Vorperiode gestiegen.
Verdoppelungszeit ist zur Vorperiode gesunken.
* Berechnet auf 1, 2, 4 und 8 Perioden rückwärts.

Grenzwert = 3 Jahre


Berechnung der Verdoppelungszeit in Tagen

Verdoppelungszeit in Jahren:
Verdoppelungszeit in Tagen:
Datum PSA 1* 2* 4* 8*
01.01.99 26.00
30.01.99 32.00 0.27
01.12.00 0.70 -- --
01.12.06 1.20 7.72 --
01.12.07 1.80 1.71 5.14 --
01.12.08 2.80 1.57 1.64 --
01.12.09 5.40 1.06 1.26 3.06
01.01.10 4.90 -- 1.34 1.52
01.11.10 4.50 -- -- 2.21 --
01.12.10 5.20 0.39 10.67 2.24 --
01.01.11 6.90 0.21 0.27 3.07 3.06
01.04.11 5.30 -- 12.06 11.01 2.02
01.07.11 5.10 -- -- 3.67 2.38
01.01.12 6.90 1.16 1.98 2.66 2.37
29.05.12 7.50 3.39 1.64 11.71 5.26
01.04.13 9.90 2.10 2.40 2.22 3.20
01.07.13 10.10 8.64 2.54 2.03 2.29
01.10.13 0.10 -- -- -- --
           
           
           
           
           
           
           
Datum PSA 1* 2* 4* 8*
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           
           

Mein Bericht

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Datum Δ 

letzter PSA vom

Erfahrungsberichte

       
23.03.2010 4.90 01.01.10
Prostate Cancer †“ Reoccurrence treatment - Cryosurgery †“ †˜Elective Targeted Cryoablation†™ - (Iceballs).....

Tues 23/3/10

Last Day Preps and Farewells
Stressful last day at the office, countered by nice thought of being escorted through all this by my Son
Resignation that I might be waving goodbye to sex life and continence, a major turning point in life....

How Did I Feel?

Surreal, edgy, mild panic, resignation...
Wed 24/3/10

Hospital Admission Day - That Wasn†™t!
815am car trip Cardiff to Guildford, arrive at 12 at Holiday Inn alongside Royal Surrey hospital.
2pm Admissions hospital Check In appt, told to sit and wait for bed allocation.
4pm Ring Consultant†™s Sec. but on Voicemail only.
5pm three hours in, yet no bed availability, told to go home and phone in morning!
Surprise night of †˜holiday†™ type experience with my Son, Swim, Sauna, Steam, Italian meal plus cinema †“ Wow! then Holiday Inn hotel next door to hospital.


Frustrating day with anti climax and disbelief at delay †“ but Act Of God, giving me one golden last surprise evening of quality life..
Thurs 25/3/10

The Op Day Finally Arrives †“ Or does it....
9am Rang hospital from hotel next door only to hear †“ †œNo beds†!!!, and now getting very concerned so 9.10am Rang John Davies†™s Sec.
9.50 Phone call from Admissions, †œcome and wait in Compton ward Day Room†. 11am we did that and waited.
12. Put into private bedroom, pretty rapid succession of 4+ med staff taking ECG, BP, Blood samples, repeated basic personal med history, and great interest in my tooth bridge which they said may become dislodged / damaged by various devices put down my throat etc. Young lady Dr. Gemma Price, one of John Davies†™s team had chat and got me to sign Consent Form.
2.10pm Quite stroppy †˜scrubs†™ gowned theatre lady came, surprised to see me still in civvies, so a gown given in haste..
2.20pm Rushed departure which was a bit un nerving plus my glasses removed which disoriented me, making me blind from here on in... Corridors..lift...corridors... then to large 007 type chamber with recessed arched holding bays, 2.30pm Surgeon John Davies says brief hello, 2.35 am wheeled away to Pre Op anaesthetic area, back of hand jab junction box fitted, stare at bright lights through door panels ahead.. then gone........... †œJohn, John, your Operation has been completed† †“ Recovery Room.. Nurse gives me cups of water, tells me I now have Catheter.
5.15pm My son arrives back at my private room whilst I†™m still in Recovery, alarmed to see all my belongings gone, some of my stuff had been moved to a pile in the general ward, however my clothes had been overlooked and left in the en-suite private room and were still there.
6.30pm I return to Compton ward from Op, and my son said I had good colour and fully awake. Having missed dinner was given snack pack, thankfully my son had bought load of nice fruit so had that instead. Strangely had great difficulty in swallowing bread †“ possible sore throat from Op pipes, grapes were perfect. I received morphine for bladder spasms and a face mask of air for short period.
10pm My son goes back to his hotel.
10.40pm Finish IPod music break and text my son, Go to sleep at 11 equipped with eye shades, ear plugs etc.
Through night seemingly 30 minute checks on everyone in ward, BPs, temps, bags etc.

Concern as unsure now that Op was infact
going to happen this week!!..

Felt strangely pain free afterwards and lively.


Fri 26/3/10 (1 day after C)

Discharge, to Travel Home
6am Ward rises to high activity, 8.30am Cryo team of 5+ arrive saying my Op went well in all ways, recommended my drinking Actemol every day to prevent the beta blocker prostate pill upsetting my system which I take for a month.
9.30am My son arrives, notices all the food he bought for me was eaten. 9.45am Am on my feet packing but felt a bit woozy so lay down a bit.
11.15am Drugs arrive, my son goes back to hotel to collect his bits and car. Nurse takes MRSA test swabs. 12.30 Ant back with wheel chair for me just for extra steadiness, 1pm set off for return, non stop. 4.30pm home. Me? tired and highly apprehensive of catheter, perinea felt hot and sensitive after long drive, bed at 11.

Overview of Hospital; 9/10 for quality and number of nursing and surgical care and cleanliness, but really appalling Admissions procedure. Overhead bed free internet was a nice touch.
Drugs; antibiotic Ciprofloxacin 500 mg 2 a day for a week, Tamsulosin Hydrochloride 400 mg 1 a day for month.


Felt tired, little sleep, no pain but back of legs and groin felt tight and stiff.

Mixed feelings on my leaving the medical security / reassurance of the hospital environment, but positive keenness to go home
Sat 27/3/10 (2 days after C)

Home Sweet Home †“ Niagara
No pain, I can only think the anaesthetic still works, lower torso and top of legs stiff, the catheter presents a major hassle with many loo errors, bladder spasms give †™ping†™ short pain at end of most catheter run offs. For guaranteed sleep am using c.bag through each night.


Alarmed by uncontrolled peeing around the catheter
Sun 28/3/10 (3 days after C)

Bathroom Love Affair
No pain still, just stiff torso and top of legs. Perinea very sensitive. Catheter overspills are still an alarming problem. Noticing occasional strange mini blood skin offcut bits in blood resembling 10mm long tadpoles, these occasionally continue through for a few weeks †“ †˜sloughing†™ I am told.

Bladder spasms and occasional uncontrolled peeing around the catheter.
Mon 29/3/10 (4 days after C)

Confidence Gathering Momentum †“ Friends
Sleep pretty good, reassured by c.bag being there to prevent embarrassing spills. Daytime catheter spills still a problem.

Torso lower stiff and sensitive, catheter with sharp pingy bladder spasms
Tues 30/3/10 (5 days after C)

Body lower much stiffer, otherwise as previous days. Torso lower stiff and sensitive, catheter with sharp pingy bladder spasms
Wed 31/3/10 (6 days after C)

GP Check
I ring and go and see GP re concerns on catheter as I felt it had been descending and irritating inside of penis, assured and appt. made for its removal at Velindre hospital next week, otherwise day same as previous.

Torso lower stiff and sensitive, feeling much better now. Enjoyed the car trip †“fresh air to GP.
Thurs 1/4/10 > Mon 5/4/10 (7 > 14 days after C)

Take It Easy Days but....
Everything coming into more acceptability, lower torso remaining stiff but improving, still uncomfortable to sit down flat so using tilted ½ a cheek contact, conscious of bladder spasm liability so keeping bladder fill to minimum. Venturing out for 3 mile walks, pubs etc. The catheter experience continues to be annoying, strange also in plumbing yourself in each bed time to a pee pipe and bag †“ my mug tree proved to be an ideal bag holder upper! Annoying, as the pipes stopped you naturally turning/rolling over in bed so you remained semi conscious of the plumbing.

Perineum area continued to feel sensitive each day in shower.

Torso, leg tops and perinea stiff and sensitive, but improving.
Thurs 12?/4/10 (14? Days after C)

Goodbye Catheter †“ Did you hear the scream?
Velindre remove catheter, regrettably necessitating a second nurse to give it an extra tug as it had locked against the sides †“ ouch!

Fri /4/10 >

Recovery days quickly improving now, but still some blood in urine including strange 10 mm long tadpole like things that I can only imagine are bits cut/dislodged by the operation process. Thankfully resume to almost perfect continence, and will leave catheter damaged penis for week or so before testing any erection possibility.

Mon 26/4/10

Back To Work
After 4 weeks recovery ( 2 of which were vital, 2 of which were luxury break) Bum still sensitive with long term sitting, plus certain occasions of pain after wee†™ing provokes me to re commence the anti biotic Ciprofloxacin 500mg as I have 6 tablets left.
Two weeks later post pee pain continues, so get another 28x Cipro†™s from clinic in UHW.

Thinking Back;
The advice from prior patients proved absolutely golden, particularly in submitting to a lazy 2 weeks following, though my self motivated over reaction in buying such gadgets as ice gel bags, donut cushion etc proved wasteful.
Having the Holiday Inn next door was a real bonus, as was having a Tesco supermarket as a neighbour.
The 3 hour car trip home was a trauma so I†™m glad I pre packed a pee receptacle, but again this proved to be not needed but its existence was mentally comforting.


Aftermath - Summary 4 months on;

†¢ The Op? †“ Far less troublesome than anticipated, apart from the horrible catheter experience. No surgical dressing used for leaving hospital, no pain pills needed after hospital at all, but needed the 4 weeks off for swellings etc to settle, and for confidence to return.

†¢ Every day life? †“ Pretty perfect, energy, comfort, working life all resumed. Partake in weekly 7 mile walks, swimming and full time work. You would not know I had, or indeed have anything wrong.

†¢ Continence? - thankfully 100%. Though system weakened and psychologically you now pre plan long business meetings, walks or travel.

†¢ Potency/ED? †“ Regretfully virtually wiped out, even using Cialis. Possible small indication that something may come back in time. Penis unfortunately appears to have shrunk by at least a third †“ possibly partly withdrawn into body.

†¢ Bowel? †“ 99.9% Ok. But weakened and an aspect of life one must be careful of.

†¢ Cure? †“ Not immediate in my case regretfully. My psa was 5.9 before Op, 4.9 three months after, 4.5 four months after †“ so its reducing. My Op was described as †˜Focal†™ i.e. targeted via biopsy therefore leaving some prostate living on, that might of course still contain some †˜Positive†™ material. The equipment utilised was described as †˜3rd Generation†™. Advised to monitor for 3 months and biopsy again if psa dictates.

†¢ Mental State? †“ Very sad (understatement!) that this seems not to have the outcome hoped for. Particularly as I turned down the option of a radical prostectomy which would have completely removed my prostate, but I considered the Cryo option was overall less invasive, therefore at 63 and having an active life style I still think it was a reasonable choice made.

†¢ The Future? - As said, I am advised to wait another 3 months to see if psa is moving. Then to consider fresh biopsy the result of which will direct thoughts onto possible repeat Cryosurgery, or simply watch and wait, or commence Hormones.

†¢ PS. I did a †˜Decision Making †“ Choices ?†™ Spreadsheet before the Op, copy available if you so wish.
johncouzens@hotmail.com
       
01.02.2012 6.90 01.01.12
Initial diagnosis through zero symptoms, just joining Gym! 3 month HT then RT for four weeks, clear then for 8 years or so then psa rising, when it got to higher level underwent Salvage Cryo which reduced psa fractionally but also nuked my sex life, psa now rising, but MRI says area is 'Clear' so in May 2012 I'm trying to get PET scan to double check if its localised - I'm suspicious of lymph glands etc, though still zero symptoms. If its proven to be localised expensive surgeon in London says I could be considered for Laparoscopic RP, but counter advice warns me that such after Cryo would be dangerous, so much deliberation currently
       
15.05.2012 6.90 01.01.12
Initial diagnosis through zero symptoms, just joining Gym! 3 month HT then RT for four weeks, clear then for 8 years or so then psa rising, when it got to higher level underwent Salvage Cryo which reduced psa fractionally but also nuked my sex life, psa now rising, but MRI says area is 'Clear' so in May 2012 I'm trying to get PET scan to double check if its localised - I'm suspicious of lymph glands etc, though still zero symptoms. If its proven to be localised expensive surgeon in London says I could be considered for Laparoscopic RP, but counter advice warns me that such after Cryo would be dangerous, so much deliberation currently
       
04.10.2013 0.10 01.10.13
Salvage HIFU performed by top surgeon Prof Mark Emberton. Transacted in one day in brand new McMillan Cancer Centre alongside UCLH so latest equipment used. Back in my hotel at 4.30 that day a little dozy but no pain. Three days later developed not a pain but tight sensation in groin so tended to walk a bit like John Wayne for a week, Super pubic catheter was more of a nuisance having plumbing hanging from belly button area. No pain killers ever needed and now just awaiting a PSA three months after to see if it worked. I had a 50% chance taking into account prior RT and Cryo. VERY happy and relaxed about everything as this guy is the BEST.
       

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