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Richard UKMan lives in Cardiff, Wales, UK. He was 53 when he was diagnosed in February 1999. His initial PSA was 32.0 ng/ml, his Gleason Score was 6 and he was staged T1c. His choice of treatment was neo-adjuvant ADT (Androgen Deprivation Therapy) and EBRT (External Beam Radiation Treatment). This treatment subsequently failed and he chose Cryotherapy for salvage. Here is his story.

January 19, 1999: PSA of 26.0 ng/ml discovered by GP, but no symptoms. Follow up on January 28 with consultant Urologist/Oncologist showed a PSA of 32.0. Sextant Biopsy on February 12, 1999 showed one positive sample out of the six with a Gleason Score of 6. The CT and bone scans that followed in March 1999 were clear. Two top consultants recommended neo-adjuvant ADT (Androgen Deprivation Therapy) with EBRT (External Beam Radiation Treatment) as being the most appropriate, given my early age and they said I could avoid all the side issues of RP (Radical Prostatectomy).

April 8, 1999 I had my first shot of Zoladex ahead of the 20 EBRT sessions which started on July 14, 1999. I had my fifth and final Zoladex shot on August 10, 1999 and my last Radiotherapy session on August 10, 1999.

All went well initially and I had no symptoms or side effects but my PSA starting rising and in February 2008 my PSA had hit 5.9 ng/ml triggering off scans. CT, MRI and Bone scans were all clear, but another biopsy on December 11, 2009 showed that one of the eight needles was positive with a Gleason Score of 7. I decided to have Cryotherapy as a salvage therapy. My blow by blow account is as follows;

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...

UK Hospital Admission Day - That Wasn't!

8.15am 3 hour car trip 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. Wait... wait.....
4pm Ring Consultant's Sec. about delay but on Voicemail only.
5pm three hours in, yet no bed availability, told to go home (150 miles away) 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.

How Did I Feel? Frustrating day with anti climax and disbelief at delay - but Act Of God, giving me one golden last surprise evening of quality life..

The Op Day Finally Arrives - Or does it....

9am Rang hospital from hotel next door only to hear - "No beds"!!!, and now getting very concerned so 9.10am Rang Surgeons Sec. which motivated....
9.50 Phone call from Admissions, "come and wait in Compton ward Day Room". 11am we did that and waited.
12 Noon. Put into private bedroom to wait, 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 doctor one of Surgeon'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 unnerving 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 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...........
"Hello, Hello, 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 days 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.

How Did I Feel? Felt strangely pain free afterwards and lively.

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 Son back with wheel chair for me, a bit OTT, but just for extra steadiness,
1.00 pm 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.

How Did I Feel? 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

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.

How Did I Feel? Alarmed by uncontrolled peeing around the catheter.

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.

How Did I Feel? Bladder spasms and occasional uncontrolled peeing around the catheter continue.

Confidence Gathering Momentum - Friends

Sleep pretty good, reassured by catheter bag being there to prevent embarrassing spills. Daytime catheter spills still a problem.

How Did I Feel? Torso lower stiff and sensitive, catheter with sharp pingy bladder spasms.

Body lower much stiffer, otherwise as previous days.

How Did I Feel? Torso lower stiff and sensitive, catheter with sharp pingy bladder spasms.

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.

How Did I Feel? Torso lower stiff and sensitive, feeling much better now. Enjoyed the car trip - fresh air to GP.

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.

How Did I Feel? Torso, leg tops and perinea stiff and sensitive, but improving.

Goodbye Catheter - Did you hear the scream?

Cancer hospital remove catheter, regrettably necessitating a second nurse to give it an extra tug as it had locked against the sides - ouch! [The uncomfortable removal of the catheter which some, but not all men, report seems to be down to the experience of the staff concerned - and they fact that they may not realise that there is on most catherters an inflatable portion which they do not deflate.] 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.

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 weeing 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 overreaction 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. [It is interesting that Richard was offered surgery as a salvage option given the often expressed views concerning the reported dangers of that option. He could well have been in a far worse condition had he decided to take that path.]

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.

 

UPDATED

March 2011

 

 

March 2011, PSA

5.2, Cryosurgery last year hardly impacted so now just waiting for PSA to Double or reach 10. Frustrated and bewildered as I need to take action over the growing cancer yet nothing showing on scans. Have requested PET scan and CTC blood count tests but Oncologist declines. Considering getting a Second Opinion.

 

UPDATED

January 2012

 

My PSA has grown from 5 last year to 7 now.

I am a young 65 in full time work outwardly healthy, yet it appears that HT is now my only option, so the plan is we wait until it reached 10 or doubles in 6 months, then HT. This horrifies me as I'm basically 'healthy' and from Internet postings, I thought further scans might be productive (PET-USPIO, MRI-USPIO) or an MRI guided biopsy, or a CTC Blood count test. However my Consultant tells me we can have scans but they would be of questionable value as my surgical options are virtually over, particularly as my body no longer has the required healing capabilities following Cryosurgery. Likewise re Radiotherapy.

Back in 2009 all my scans were clear, Bone, MRI and CT. Again from Internet postings one historic phrase has stuck in my mind "Its easier to fight a bush fire than a Forest Fire" therefore naturally I want to continue fighting the current low grade psa of 7 and T1C state, but my consultant says a phrase more relevant would be "No use shutting the barn door if the horse has bolted".

You would not believe the level of frustration I am in in knowing this PCa is growing within, and yet I'm not throwing anything at it. I am hungry for input please. Thank you for your time.

Kind Regards Richard

Richard's e-mail address is: johncouzens@hotmail.com