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Coronavirus delays

User
Posted 05 Apr 2020 at 13:26

Consultants would love more time to spend with patients, but that's just not available (even in normal times). Appointments (at least in a couple of hospitals I know well) are 15 mins before your main treatment, and 10 mins after your main treatment. That includes the dictation time to update your notes and write your GP letter.

I was lucky in that my diagnosis hospital had a couple of urology CNS (Macmillan nurses) who could spend time with patients, but now that I'm involved with supporting more patients and at more hospitals, I'm aware there's a massive shortage of urology CNS, so that support isn't available to many patients. (And in this coronavirus era, many CNS's have been moved back onto coronavirus wards, as they will mostly have done ward work in the past before specialising).

A couple of consultants picked up on me being what they call an expert patient, and asked me to lead a support group session. I picked one of the topics which I had researched very well for myself, because no one told me anything about it, Surviving Hormone Therapy. This went so well, they've asked me to do it again for newer patients coming on to hormone therapy, and I was just starting to run them every 2 months when coronavirus reared its ugly head. This gives patients a whole afternoon to discuss the topic. I'm really pleased to be able to contribute back, and as this developed into something more than just a single support group session, I got access to consultants so I can ask questions and get them to review my materials. I'm hoping to get back into this after the lockdowns. (I'm going to test it out as a Zoom session for one of the local support groups.)

I know of prostatectomy classes run by some hospitals so do ask if there's one at yours. My hospital did a radiotherapy class, but didn't previously have anything for hormone therapy. I know more hospitals are now looking at running hormone therapy classes (or were, before coronavirus).

User
Posted 05 Apr 2020 at 15:55
How are you both coping with everything? Yes, I certainly no what you mean on the telling you & cheerio!

My OH had his diagnosis before all of this, at the end of Feb. Our bums had barely touched the seats when the Dr blurted it out. I appreciate he assumed we were anxious and would want to know “sooner rather than later” but still.

The next Consultant did go through other treatment options, and side effects after that. I’m pleased the forum has helped. Though it can be quite daunting too.

Take care.

Mel

User
Posted 05 Apr 2020 at 16:36

 Going into an appointment expecting to discuss 1 enlarged lymph node ( as per a letter sent previously from oncologist to GP and copied to us ) and then hearing that actually there were 20 showing cancer was like being hit by a train going at full speed. I asked the oncologist a question he didn't even look at me to answer but addressed his answer to my partner. 

When we left the consulting room we were in shock and it was really traumatising we went for a coffee whilst we waited for his prescription and I just remember sitting there not having a clue what to say to my partner. Luckily for us, my partner had an appointment the day after with the urologist for a 12-month check-up on surgery he had had last year for a stricture, the urologist was absolutely brilliant he sat on the bed with partner and answered all our questions with no feeling that either he or us were pushed for time. 

 

 

Some days you just have to create your own sunshine...... 

User
Posted 05 Apr 2020 at 18:16

Hi Mel 

my husband Tim was diagnosed beginning of March at present on HT no op till August September worrying times due to this virus, and not much feedback either just awaiting an appointment for qa Portsmouth just wish virus would go away 

take care 

Tracey 

User
Posted 06 Apr 2020 at 21:54

Hi Carl, thank you for your private message which I'm still unable to answer privately, I regret.  I spoke to my consultant today; he explained that my Gleason score is key.  At 4+3=7 it's OK to wait a while, say 3 months.  I am on the borderline of needing to start taking the antiandrogen, Bicalutamide.  There has, evidently, been some recent  guidance from the EU about the da Vinci robot's aerosol effect.  Apparently it occurs when the patient is deflated.  But my consultant believes if you deflate carefully and slowly there is no such effect.  The length of delay before RARP operations re-commence is anyone's guess, but I believe there will be at least a 3 month delay, meaning July or August.

User
Posted 02 May 2020 at 11:20

Hi The1974, how are things a few weeks on?

OH has had pre-op now but no confirmed date. A bag is packed, just in case of a call at short notice. Not as joyous as the usual scenario in which you have a bag packed waiting for an expected but non predictable trip to hospital!  Relieved that things are obviously being done though. 

Mel

User
Posted 02 May 2020 at 11:51

Hi Mel,

I hope you are well and keeping safe.

It was exactly 7 months yesterday when I had RP and recovery is going well.

I suppose the two main factors which we worry about are ED and Incontinence (which was the case for me).

Viagra now gives me an excellent erection and performs best an hour before sex. I believe it's best not to exceed 2 tablets in one week and works better on an empty stomach.

Unfortunately i'm still suffering from Incontinence and changing 2/3 light (tena 2) pads per day. It's fine when sitting but leaking when standing and on the move.

I'm doing PFE in the morning but failing to keep it up during the course of the day!

Jeff

User
Posted 02 May 2020 at 12:24

Good to hear that things are going well. Yes, they certainly are worries. I’m more worried about the impact of incontinence, as it has social implications for OH. Worried about the other as well but we’ll work through it. 

From a family perspective, how are your children handling everything? They are the same age as ours. 

Mel

User
Posted 02 May 2020 at 13:01

Looking at the forum I see incontinence varies from man to man, some men are dry instantly when the catheter is removed. I required man nappies/pants from day one as i had no control over my bladder, i gushed everytime i stood up and this continued for a few weeks.

After time i was able to hold my bladder and getting to the toilet, once again this takes time to achieve. It was very hard in the beginning because whilst travelling on the motorway i almost needed to stop at each service station!

As months past i wore Depend pants but also inserted a pad which made changing/disposal much easier rather than having to take off trousers/jeans everytime.

I also tried Conveen sheaths for a few weeks but this doesn't help in training the bladder, it was really only useful for long trips on the road.

Ask your council for incontinence refuse bags otherwise your bin will be full in no time.

My girls have been fab throughout, very concerned at the beginning but now totally normal, to the point where they forgotten i had the op. Apart from the scars, the incontinence and ED i feel and look 100%.

User
Posted 03 May 2020 at 10:41

The 1974 Only time will tell on both counts really.  It’s so individual. For every more negative experience there seems to be a more positive, and we’re so grateful to you all for sharing.
I’m glad your girls are ok too. It’s such a worry for them. We have one of each.  Son will have PSA tests from 40 just in case. 

Mel

User
Posted 03 May 2020 at 10:44

Andy62 Apologies, I missed your reply.  That sounds like a fantastic opportunity and a great service too. I hope it continues for you post CV. 

Mel

User
Posted 04 May 2020 at 22:57
New to forum. I'm stage 3a, Gleeson 7, PSA 24.8. BICALUTIMIDE 150MG. Waiting for RP ... delay due to coronavirus.

Anyone seeing surgery restarting at their hospital? Or aware of plans to do so?

Mine suggesting might be possible in June....many variables... Coronavirus... May be delayed etc

User
Posted 05 May 2020 at 07:52

Hi Richy Rich, sorry you are caught up in all this too.

We’re in South Wales.  The impression our Surgeon gave was that high risk PrC surgeries would were still going ahead the week after lock down & were not being stopped for hopefully more than a wk. Not sure how that panned out. There is another person on here from same area, who had pre op around lockdown time but still hasn’t been called in. My OH was called for pre op 2 weeks ago but no date given which would usually be the case at that point.  When he spoke to Surgeon for surveillance results, he gave the impression surgery was still happening but a a reduced rate. 

It is very much variable depending on the area you are in. I have heard of some surgeries taking place in our local private hospital but these would not be with the DaVinci as far as we are aware. So not a preferable option for us due to his age.  England are setting up ‘Covid free’ hospitals but quite how this will fair, time will tell. Given that approx. 60% of infection spread is thought to be by asymptomatic or presymptomatic people. 

Mel

User
Posted 06 May 2020 at 11:30

Hi I'm a newbie and it's good to hear that you have, at least heard something, I'm in Bristol and all I've heard so far is that all consultations will be done by phone. Beats me how that's going to work. 

 

User
Posted 16 Jun 2020 at 13:10

Carl,  I have tried to email you back but your inbox is full!  You need to delete some & make some space! 😁

Mel

User
Posted 16 Jun 2020 at 16:25

All done deleted loads. How are you

carl

 

User
Posted 14 Jul 2020 at 16:18

Hi, first time poster here.

I saw the urology Dept @ Good Hope Hospital on 26th March. Usual ultrasound/DRE/MRI scans. On 20th April I received a letter telling me that my scan showed " 1.8cm lesion, peripheral zone, PIRAD 5 suggesting high grade tumour". This was followed by the following gem

"Unfortunately we are unable to perform a TRUS biopsy due to COVID-19. I will see you again in four months time with a repeat PSA"

Given my family history with PCa ( brother undergoing RARP aged 49, Dad with the disease, uncIe already having experienced PCa) was understandably pretty worried about this. I tried calling a local private clinic to enquire about a private biopsy but none of them were answering the telephone. So, I sat and waited. About 6 weeks ago my local NHS Trust decided to start elective non-urgent surgery, but not diagnostics. Which really p*ssed me off. I sent letters  to national/local media about this but heard nothing. As part of the media "campaign" I wrote to the local BBC health correspondent, who contacted me with a view to doing a piece on the local news bulletin about this.  Mr BBC, after the interview, suggested that I ask my GP to refer me to the Rapid Diagnostic and Assessment Centre at the Royal Marsden.

 

The treatment I have had at the Marsden has been exemplary. Referred on Monday, contacted about my initial appointment on the Wednesday, undertook another round of ultrasound/DRE/MRI scans one week later. Two weeks later had a transperineal biopsy. Biopsy showed the disease in much of the prostate, Gleason 4/3, PSA 7

And 10 days later underwent a PSHA/PET scan.  Scan came back negative and confirmed that the cancer had not escaped the capsule- big sigh of relief!!!

 

Currently awaiting a date for RARP. Should be in the next 3-4 weeks.

User
Posted 14 Jul 2020 at 21:17

Hi music-man so glad you have finally received biopsy and results, whilst its a shame they are as they are at least now you are on the right path for treatment 🙂

Some days you just have to create your own sunshine...... 

User
Posted 15 Jul 2020 at 10:27
Thanks Annie

The Beeb are coming back to do a followup piece this afternoon. Should be broadcast this evening on the local BBC news in the West Midlands. I was lucky to get the Marsden to accept my referral. There's many people in the West Midlands ( and nationally) who have possibly had urgent diagnostics/treatment postponed due to COVID-19 and I think this piece will be about them , more than me.

 
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