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3 months of Hormone Treatment then Prostatectomy

User
Posted 21 Jun 2018 at 07:37

PSA 33,Gleeson 3+4 =7, T3b L0 M0.

I was offered a choice of radiation or surgery but on balance decided on surgery.

The surgeon warned me that I had a 'significant' cancer and he planned to throw the 'kitchen sink' at me. 

I started taking Bucalutamide 3 days ago and need to visit my GP in 2 weeks for  a lutenising analogue injection which will work for 3 months in conjunction with the Bucalutamide which I will take for 1 month. 

My Prostatectomy is planned for the end of September.

While I'm happy to have at last started treatment after 4 months in the diagnostic stages, I am bit concerned that my operation is still 3 months away!

Has anyone else had hormone therapy before surgery and how did it go? I've been told that nerve sparing surgery is not advisable for me.

Edited by member 03 Aug 2018 at 20:57  | Reason: Not specified

User
Posted 28 Sep 2018 at 18:25

Hi HillsRob, you got there in the end.  Your surgeon is a pleasant gentleman helping you into your anti-coagulant stockings and seeing you post op.  I've never seen my surgeon since he interviewed me before the operation, not that I'm criticising him because if it gets one more operation done it's for the best.   I didn't have an epidural either and had no pain at all, interesting how they use different techniques.

I used the term 'pleasant gentleman' as the surgeon who saw me post op used that term in the letter he sent my GP.  I'm told they use the term a lot in letters so I'm not sure it's a compliment.

All the best for the trial without Catheter, don't strain those wounds including the sphincter.

Regards
Peter

Edited by member 28 Sep 2018 at 18:31  | Reason: Not specified

User
Posted 28 Sep 2018 at 21:36
There are hidden codes in letters because they canโ€™t share patient opinions without getting slapped.

I was a polite professional gentleman, shows he didnโ€™t really know me ๐Ÿ˜‚

At least you werenโ€™t GFPO ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Carpe Prostatem

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User
Posted 29 Jul 2018 at 20:56

4 weeks ago I had a Triptorelin injection (3 month 11.25 mg) and to start with things seem to go quite smoothly. I am scheduled to have a Prostatectomy towards the end of September.

In the last 36 hours however I have had 4 quite severe nose bleeds and this morning I was taken by ambulance to A&E for one that I couldn't stop after trying in vain for 30 minutes or so. The diagnosis at A&E was high blood pressure i.e. 180/104. In fact my blood potassium was 2.8 mEq/L and should normally be in the range 3.8 to 5 mEq/L.

I am now 68 and have been on medication for raised blood pressure since I was 46 but the A&E doctor was clearly not happy with the way my BP and electrolytes have been allowed to get out of control. I'm not sure to what extent the Triptorelin has contributed to this but tomorrow I will be back to my GP for an urgent review of my meds.

Today the A&E department pumped 1 litre of a sodium chloride (0.9%) and potassium chloride (0.3%) into me over a period of 4 hours and doubled my daily Amlodipine dose from 10mg to 20mg which I take together with 2.5mg of Bisoprolol Fumerate and 100mg of Losartin Potassium to try to control my BP. It looks like I will need a Potassium controlling tablet from now on or eat lots of bananas and avocados. http://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-smile.gif

Edited by member 30 Jul 2018 at 09:15  | Reason: Grammer

User
Posted 29 Jul 2018 at 21:05
Sorry to see this and also that no one replied in June when you posted the first update.

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.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 29 Jul 2018 at 23:33

Hi,  I was reading your profile and that you had a psa test in February.  It would be useful to put the dates of your appointments on your profile.

Assuming the psa test was at your GP the hospital should see you within 14days. They then have 30 days to diagnose and 30 days to treat.  Instead of about 74 days your treatment is taking about 200 to your operation although the hormone treatment might be allowed as the treatment date.

If you asked to go to another hospital it might lose your slot and take as long so it's difficult. Although you could ask why it's taking so long.

Perhaps others might have a better idea.

In theory hormones are treatment, it's  unconventional but that may be their excuse.  I noticed a private surgeon offered hormones before surgery and when I mentioned it to my Consultant he said they must be very busy and holding for time.  Perhaps that's true and is the case for you but your treatment has been slow all along.  I hope you don't mind me saying the above but nothing can be done unless it's made known and it might effect us all.

All the best.

User
Posted 29 Jul 2018 at 23:47

Originally Posted by: Online Community Member
Sorry to see this and also that no one replied in June when you posted the first update.

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.

User
Posted 30 Jul 2018 at 00:24

Originally Posted by: Online Community Member

Assuming the psa test was at your GP the hospital should see you within 14days. They then have 30 days to diagnose and 30 days to treat.  Instead of about 74 days your treatment is taking about 200 to your operation although the hormone treatment might be allowed as the treatment date.

 

The target of starting cancer treatment within 30 days is correct, but hillsrob's clock stopped ticking as soon as he was placed on HT so there is no target for when he has the surgery. As for reasons, although it is rare, some surgeons like men to have HT to reduce the size of the prostate before keyhole surgery. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jul 2018 at 00:30
hillsrob, high blood pressure is an uncommon side effect of triptorelin (more than 1 in 1000) and nose bleeds are a rare side effect (more than 1 in 10,000) but both are known and listed on the patient leaflet. You need to speak to your nurse specialist or urologist about whether to stop taking it after this injection has run out of steam.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jul 2018 at 08:31

Re the hormones this is because it's a T3B? I think hormones will shrink the tumour and make it more likely that negative margins can be achieved

 

User
Posted 30 Jul 2018 at 15:04

Originally Posted by: Online Community Member

Hi,  I was reading your profile and that you had a psa test in February.  It would be useful to put the dates of your appointments on your profile.

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

User
Posted 30 Jul 2018 at 16:44

Originally Posted by: Online Community Member

Re the hormones this is because it's a T3B? I think hormones will shrink the tumour and make it more likely that negative margins can be achieved

 

 

Hi francij1, That's was the reason the surgeon gave me.   

User
Posted 30 Jul 2018 at 20:03

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.

User
Posted 30 Jul 2018 at 21:04
The NHS trust has commissioned urology services out to GP Care UK Ltd in an attempt to manage cases in the community. It is an absolute scandal and men in the South-West area are being failed. However, the company gets great ratings in its CQC inspections so nothing will change.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Jul 2018 at 23:14

Originally Posted by: Online Community Member
The NHS trust has commissioned urology services out to GP Care UK Ltd in an attempt to manage cases in the community. It is an absolute scandal and men in the South-West area are being failed. However, the company gets great ratings in its CQC inspections so nothing will change.

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.

User
Posted 31 Jul 2018 at 00:49
I can answer some of your questions so it is terrible that they didn't respond.

As I have posted previously, men in the South-West should try to avoid getting prostate cancer. Of course, this company has had the contract in your area for a number of years now and I suppose people tolerate it until it affects them directly.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 31 Jul 2018 at 19:38

Originally Posted by: Online Community Member
I can answer some of your questions so it is terrible that they didn't respond.

As I have posted previously, men in the South-West should try to avoid getting prostate cancer. Of course, this company has had the contract in your area for a number of years now and I suppose people tolerate it until it affects them directly.

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

User
Posted 03 Aug 2018 at 20:56

GP put me on 3 x Sando-K tablets a day to try to improve my blood Potassium levels. Suffered another nose bleed (5th in 7 days) last night at about 18:00. Put the nose clip on kept from previous episode and it seemed to stop quite quickly. Blood pressure was quite high maybe 160/100. I called 111 and a non-emergency ambulance was scheduled to take me to the BRI in Bristol where they have an ear nose and throat (ENT) department. By 01:30 the ambulance hadn't arrived and I got a call from a paramedic to check how I was doing. We agreed to cancel the ambulance so that I could get some rest. Visited GP nurse today to get results of blood test for Potassium. This was 3.4 so much better that last Sunday when it was 2.7. We agreed that the moment I got another nose bleed I would drive myself to the BRI with a peg on my nose and demand a cauterisation.http://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-smile.gif

Edited by member 03 Aug 2018 at 20:57  | Reason: Not specified

User
Posted 27 Sep 2018 at 19:34

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

User
Posted 28 Sep 2018 at 18:25

Hi HillsRob, you got there in the end.  Your surgeon is a pleasant gentleman helping you into your anti-coagulant stockings and seeing you post op.  I've never seen my surgeon since he interviewed me before the operation, not that I'm criticising him because if it gets one more operation done it's for the best.   I didn't have an epidural either and had no pain at all, interesting how they use different techniques.

I used the term 'pleasant gentleman' as the surgeon who saw me post op used that term in the letter he sent my GP.  I'm told they use the term a lot in letters so I'm not sure it's a compliment.

All the best for the trial without Catheter, don't strain those wounds including the sphincter.

Regards
Peter

Edited by member 28 Sep 2018 at 18:31  | Reason: Not specified

User
Posted 28 Sep 2018 at 20:32

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

User
Posted 28 Sep 2018 at 21:36
There are hidden codes in letters because they canโ€™t share patient opinions without getting slapped.

I was a polite professional gentleman, shows he didnโ€™t really know me ๐Ÿ˜‚

At least you werenโ€™t GFPO ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

Carpe Prostatem

 
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