Hi,

I had what I thought was a urinary tract infection, painful to pass urine and needed to go every few minutes. Turned out to be a pseudomonas infection and went onto Ciprofloxacin. Cleared up slowly.

After about three weeks I went back to the doctor and the infection had cleared. I still had problems passing urine and he gave me a PSA test. I've just had my first post PSA urologist test and will have bone and MRI scans within the next couple of weeks prior to meeting an oncologist for staging. No back pain, or pain anywhere for that matter, hope that's a good sign.

Finding your site very helpful.

Thanks,
Dave C

Later: Just back from the urology results consultation.

Bone scan and MRI both clear. Much relieved as I expected the worst with my high PSA but the consultant thinks the PSA may have remained high following my initial psuedonomas infection.

Starting three weeks of Casodex on Wednesday May 25 2011, and then a three month injection of (probably but not decided yet) goserelin (Zoladex) on May 28.

Also booked for a TURP (Trans Urethral Resection of the Prostate) to help increase flow before any radiation treatment. Operation should be in about one month. Also next PSA test booked for end September. Hopefully a much lower number.

Any comments very welcome.

Thanks Dave C.

It is three weeks since TURP and seven weeks into HT (Hormone Therapy aka Androgen Deprivation Therapy) with Prostap.

Much improved flow but still waking two or three times per night. Limited side effects from the HT, some tiredness. I hope it stays like this. Waiting for start of my RT, should be in around three weeks. Keeping positive attitude.

Had some great news - Expecting our first grandchild in February 2012.

TURP side effects cleared up after 3 months. Became an expert at finding public facilities.

New PSA test done on 31st August - Fallen to 1.9! Urologist very pleased.

Started 37 sessions of RT on 17th October. Just completed 20 sessions so in the home stretch. Last day is 6th December.

Well into the routine now and time is flying. Very limited side effects. A little fatigue and urgency but all very manageable. Excellent care received at the Northampton Radiology unit.

Just completed RT which was fairly uneventful. Oncologist meeting in 8 weeks then 2 PSA tests (March & August 2012) and a URO meeting in October 2012.

Diary a lot less full than over the last few months (medically speaking).

First post RT blood test shows PSA of 0.30 down from 1.9 and 76 at diagnosis. Very pleased with the drop and told to expect a further reduction at the next test in July. I understand that it can take over 18 months to reach a nadir.

Good wishes to all.

Latest PSA test down from 0.3 to 0.2. So moving in the right direction. Uro specialist nurse appointment due 10 August and next PSA test in February 2013.

Latest PSA test result: Fallen again to 0.1. Delighted to join the 0.1 club. Next Onco review on 1st February 2013

Met with Oncologist On 1st February. Delighted with my PSA of 0.1 and lack of serious side effects. Next review in 12 months. Time for a holiday.

Latest PSA result undetectable (less than 0.1). Just had review with URO specialist nurse. She is delighted with my progress and suggests I discuss ending HT during my ONC review next February.

Recent PSA test still less than 0.1. Has been for a year now. Onco meeting on 14th February. Hopefully stop HT. The jab I just had will take my treatment to 34 months.

Latest update. Had Oncology review on Valentine's day. PSA still undetectable. Letter says "a very good response" Taken off HT and will be reviewed in 12 months. If PSA remains low will be discharged back to Urology. Next PSA test and Urology review in July 2014. Feeling very well overall. Just some fatigue from the HT. Hopefully that will start to improve.

Latest PSA test result remains at less than 0.1. Hopefully discuss discharge at Onco review in February 2015.

PSA has risen to 0.4 but hopefully a bounce. Next test due in February 2016.

Problems with blood in urine and poor flow. Had a flexible Cystoscopy in October 14 where a stricture was found, Had optical urethrotomy in May 2015. Mostly recovered within 6 weeks. Worst part was having to have a catheter in for 4 weeks. Bleeding completely stopped by end of July. Still have a slight issue with frequency. Need to pass urine about every 1.5 to 2 hours during the day but only up once at night at about 4.00 am.

Otherwise not doing too badly.

PSA continuing to rise slowly. Now up to 3.2 (November 2016). Checking every 3 months with a view to restarting Hormone Therapy when it reaches a certain level (perhaps 10 or 20).

Almost 6 years since diagnosis. Hopefully not have to start HT for a while and then it will reduce PSA and keep control.

Next Consultant review in March 2017.

PSA continued to rise and went back onto HT in April 2017 when PSA was 6.1. Latest test in January 2018 down to 0.4 so quite pleased. Had a repeat urothrotomy and also doing ISD which is much easier than I thought. All in all quite happy. No significant side effects from either the HT or the urethrotomy (greatly helped by overactive bladder meds). 4th grandchild expected in June. I'll update more frequently than in the past year.

Latest Urology review 11th March 2018. Current PSA again down to 0.33. No side effects other than loss of libido. Urologist very happy and wants to see me again in 12 months.

New PSA test today. Fallen again to 0.19. Very pleased. Uro review next week.

4th Grandchild, Joshua, born in May. 4 Grandchildren in no time.

PSA has risen to 0.64 over the past year. Urologist believes hormone therapy remains effective. Next PSA and URO nurse review in April 2020.

Update 2020.

PSA slowly rose throughout the year to reach 2.48. Planning Docetaxal Chemo.

Update February 2021

Started 6 cycles of Docetaxal. Went pretty well until cycle 5 which left me very unwell resulting in a case of Sepsis and a stay in hospital. 2 days in intensive care and 3 days on a ward. Recovery was thought to be extremely fast. PSA at end of Chemo in June 2021 was 0.40. Left with mild neuropathy in toes.

Update 2022

PSA rising again. Between June 21 and February 22 rose from 0.40 to 7.01. Offered a choice of either Enzalutamide or Abiraterone.

Started Enzalutamide in February 2002. PSA dropped to 0.75 after first monthn and has fallen to 0.08 by June 22. No noticable side effects.

Update - July 2023

been on Enzalutamide since Feb 22. Also remaining no Decapeptyl.

Main side effects are fatigue and Chemo induced neuropathy in toes.

PSA stable at 0.1.

Remaining on Decapeptyl and Enzalutamide.

PSA slowly rising but very low. Currently 1.3.

Recent scans show no disease Progression.

Fatigue challenging but feels like it perhaps happens a little less often but occurs randomly

Dave's e-mail address is: dave.chappell AT btinternet.com (replace "AT" with "@")