3 months of Hormone Treatment then Prostatectomy

It is very rare to have HT prior to surgery so perhaps it is worth contacting your nurse specialist (if you were allocated one) and / or ask for an appointment with the urologist to discuss whether you can stop taking the hormones.

Thanks for your concern as always Lynne. The A&E doctor didn't see a connection between hormone therapy and raised blood pressure or even nose bleeds but these things are rarely understood. In any case stopping hormones is not an option because I was given 3 months treatment in a single shot.

I did a search on here for nose bleeds and found just one post asking if there was a connection with hormone therapy. 

Following my initial post in this thread I did query with my support nurse if hormone therapy was usual before surgery and her response was that although it was not the norm, if my surgeon had prescribed it then it was for a good reason and that my treatment plan was discussed by the multi-discipline team at their weekly meeting before offering it to me.

Hi Peter, Good idea to summarise my appointments in my profile. I've prepared a summary and pasted it below but will also add it to my profile:

21/02/2018 Day 0,     with: GP, Haematospermia. DRE. Blood taken for PSA.                                                                                                

22/02/2018 Day 1,     with: GP, PSA result 33. Referred to GP Care (NHS) Ltd.

06/03/2018 Day 13,   with: GP Care (NHS) Ltd, Consultant nurse. DRE. Referred to Southmead for MRI.

21/03/2018 Day 28,   with: Southmead Radiology, mpMRI Scan.

24/04/2018 Day 62,   with Southmead Urology, mpMRI Scan results: T3B M0, N0. TRUS Biopsy arranged.                                                      

10/05/2018 Day 78,   with: Southmead Urology, TRUS Biopsy.            

21/05/2018 Day 89,   with: Southmead Urology, TRUS Biopsy results: Gleeson score 3+4 = 7. NM Full Body Bone Scan arranged.                           

02/06/2018 Day 101, with: Southmead Urology, NM Full Body Bone Scan.

05/06/2018 Day 104, with: Southmead Urology, Results of NM Full Body Bone Scan. Consultation with Oncologist Urologist.

18/06/2018 Day 117, with: Southmead Urology, Consultation with Surgeon. Surgery path opted for. Hormone treatment started.

Edited by member 30 Jul 2018 at 16:29  | Reason: Referencing quote

Hi Hillsrob,  The dates are interesting, Prostate Cancer UK should ask for this information from everyone and create a scorecard to highlight areas for improvement   

Your timescale is about 106 days from GP to a hormone injection.   In my case it took about 65 days from GP to operation.  It's supposed to take 60.  

Anyway you are now being treated and as your surgeon said he's throwing everything at it, which includes the hormones.  Also you're confident in your surgeon which is important.  All the best.

Regards Peter

 P.s  I didn't notice you'd added the day numbers when I wrote the above. Mine is slightly different.

Edited by member 31 Jul 2018 at 12:30  | Reason: Added post script.

When I complained on the phone to GP Care UK Ltd about how long things were taking, they advised me that they met the NHS requirements and added that if I didn't like it I should go private.  I emailed them twice asking for answers to some specific questions and they didn't have the decency to reply. I copied my GP in on the questions and he did at least ask me if I had received a response. My email dated 24th March 2018 edited to remove names etc. is copied below:

On 22nd February, 2018 I was referred to your NHS Community Urology Service by my GP - Dr <n1>.  My PSA test result was 33.

Without a prior consultation with a Urologist, I was asked to visit the GP Care clinic at Yate on 6th March 2018 and given instructions to prepare for a Trans-rectal Ultrasound Biopsy. 

At the clinic I met with Consultant Nurse – <n2> and I queried a statement included in the information sent to me i.e.

These tests are the only way to obtain these results. No other test is available. 

I had seen in the news and through the internet that  a Multi Parametric Magnetic Resonance Imaging (mpMRI) scan may be less invasive and possibly a more accurate initial test: 

In January 2016, the results of the Prostate MRI Imaging Study (PROMIS) were published in the Lancet and showed that giving a man a multi-parametric Magnetic Resonance Imaging (mpMRI) scan before a biopsy can radically improve the accuracy of the diagnostic process for prostate cancer.

<n2> performed a digital examination which indicated that my prostate was enlarged and proposed sending me to Southmead for an MRI scan which I attended on 21st March 2018. I now need to wait for up to 4 weeks for the results.

I have a number of questions about my treatment at this stage which I would be grateful if you could answer.

     1.  Do I have a Consultant Urologist overseeing my case? If so who is he/she? Which organisation does he/she report to for my case?

On my MRI scan reference information it stated GP Care - Dr <n2>. I have contacted his secretary at Southmead but was advised that his name would just have been used as a doctors name is required in order to access the radiology facilities at Southmead.

     2.  I would like to know if my scan was carried out using a multi-parametric Magnetic Resonance Imaging (mpMRI) scanner or a different type of MRI scanner?

The notes on my appointment say: MRI Pelvis Prostate , MRI Pelvis Prostate with Gadolinium.

     3.  According to the North Bristol Trust – NHS – Urology website there is a One Stop 2 Week Waiting Urology Service available at Southmead.  Could I have been diagnosis sooner if I had been referred there?

https://www.nbt.nhs.uk/bristol-urological-institute/urology-patient-services/urology-one-stop-clinic

Edited by member 30 Jul 2018 at 23:24  | Reason: paragraph numbering tidied up.

With hindsight, I can answer all of my questions Lyne:

Q1. Did I have a urologist overseeing my case at that time? Answer: NO.

Q2. Did I have an mpMRI scan? Answer: YES.

Q3. Could I have been diagnosed sooner if I had been referred directly to the 2 week waiting service at Southmead? Answer: YES.

I didn't even know about this company until I was directly affected by it. You couldn't drag me there now.  

Edited by member 31 Jul 2018 at 19:41  | Reason: Not specified

I had my Prostatectomy last Friday the 3rd September 2018. 

On arrival at Southmead at 7am I waited just a few minutes before I saw the familiar face of my surgeon. He cheerfully ushered me and my partner into a 'medi' room and explained that he had one procedure to do before mine so there might be a short delay. He talked about my Triptorelin injection and said that if my PSA were to be taken today it would probably be negligible. I said that I was still experiencing hot flushes and he explained that the overlap period after a 3 months injection is about 4 months. He said again that I had a significant cancer, my PSA had been very high but the cancer cells would now be lying dormant having been starved of testosterone for nearly 3 months.   He told my partner that he would call him to update him as soon as his part of the procedure was completed which took about 2 hours. I signed the authority to proceed with the operation and he left the room. 

I then saw the anaesthetist who went through a few checks and explained that I would also be having an injection in my spine it help with the pain after the op. Within half an hour the surgeon was back and helped me into my gown and put on my elasticated stockings. The anaesthetist came back into the room and fitted a canula to my left wrist.

I then started the short walk to the operating theatre. I kissed my partner goodbye and entered the room and immediately recognised the Da Vinci equipment.  I was asked to sit sideways on the table and heard the words "Don't worry if you fall, we'll catch you". I then saw my canula being pumped with some liquid from a syringe and woke up back in the 'medi' room a bit dopey but completely out of pain. I had pipes and wires connected all over.

My sister arrived to see me and eventually the surgeon came and said the procedure had gone completely to plan using the words 'nothing mischievous'. I thought afterward he must have meant nothing more mischievous that Prostate Cancer.

The last few days have gone quite smoothly. I was discharged the next morning but was re-admitted when the catheter stopped working and I leaked quite a bit of fluid from one of my 6 wounds. I stayed in under observation for two more nights but am now comfortable back at home. Walking a bit and resting a lot.

The district nurse called today and changed by catheter bag to a valve saying it would help my bladder to work again on it's own. I called the Prostate Cancer UK helpline nurses and they said that post Prostatectomy it was not a good idea to do this. I called the support nurses at Southmead and they confirmed that although the method without a bag is good for some catheter cases it was NOT good after a Prostatectomy where open drainage is recommended to allow the bladder to heal.  I have now changed back to a bag as originally planned and my Trial Without Catheter is planned for next Wednesday 3rd October at 8:30 AM.         

Edited by member 27 Sep 2018 at 19:49  | Reason: Not specified

Thanks Peter. I remember the term pleasant gentleman being used in a letter to my GP so thanks for spoiling the allusion.  

I seemed to have reached a plateau of improvement at the moment as it's now over 7 days since the operation. I seem tired most of the time but push myself to walk the few hundred yards to get a bit of shopping every day. At least with the catheter and bag fitted I am getting a complete nights sleep. I've switched to decaffeinated tea which tastes awful and am drinking plenty of water knowing it can't get me up in the middle of the night. 

The district nurses are coming round on Monday to remove the staples from my wounds. I seem to have gained about 2kg in weight since before the operation even though I am eating less. I can't wait to get back on my bicycle and to go to the gym but that's probably 5 to 6 weeks away at least. 

My partner has been wonderful, cooking and cleaning, waiting on me hand and foot, helping me dress, administering my Clexane injections and putting on my anti-coagulant stockings etc.  This disease obviously tests the strongest of relationships.

Edited by member 28 Sep 2018 at 20:36  | Reason: Not specified

I'm now 11 weeks post surgery.  At 8 weeks I had my second PSA test in preparation for the post op consultation with my surgeon on 19th November. I was worried about asking for the result but was relieved to hear that it was less than 0.1 ng/mL.  In February 2018 it was 33.3 ng/mL. 

The surgeon started the consultation by asking me about my incontinence. I explained that I wear Tena pants for men at night and get up 2 or 3 times for a pee but am otherwise mostly dry at night or when sitting.  On the move it's a different story and my bladder quickly empties.  He assured me that things would gradually improve over the next few months and recommended that in the meantime I try using Sainsbury's nappies for 3 to 4 year olds during the day. 

I was keen to ask about my pathology results which confirmed the original T3b N0 diagnosis but I was concerned to hear that although the surgical margins were mostly negative there was a very small area where the margin was positive. The surgeon said that he was not concerned about this and was very pleased that my PSA was now undetectable. He told me that he was a worrier by nature but he was not worried about me. I said that I didn't know if this was due to the 3 months pre-op hormone treatment or the surgery.  He was a bit non-committal on this but proposed a follow up appointment with him in 6 months time to ' make sure everything was progressing nicely'. 

I am now waiting for the effects of the hormone treatment to wear off and hoping my PSA remains undetectable. 

Well certainly some good news J. I'm obviously worried about the 'positive base margin'. I'm thinking of asking for another PSA test in three months time. My hormone treatment should be out of my system by then. 

It's now nearly 9 months since my surgery. I had a PSA test at 2 months post surgery and two more at 5 months and 8 months. All results have been undetectable at < 0.1. I plan to have another test at 9 months just before having a check up with the surgeon. I face each test result with some trepidation but have to remind myself that in February 2018 my PSA was 33 probably rising rapidly and with hind sight my operation was still 7 months away.

I have now almost recovered full continence. I wear the smallest of Tena pads in case I cough or perform extreme gymnastics. I ride my bike to the gym and walk my two energetic Staffies (Sky and Oscar) 3 times a day. Both I and my partner gave up drinking alcohol a year ago.

ED is an ongoing problem but I'm having some success with a pump. Life is good for now and I'm living it just one day at a time.