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Worry about meeting the consultant on Monday

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User
Posted 19 Apr 2022 at 18:58
Hi, OH had also requested a referral to a hospital for Brachytherapy. This afternoon he got a phone call from Dr Y from that hospital out of the blue just for a chat to see if he is suitable. OH is very impressed with the speed of Dr Y's response and the long and informative chat they had. He has been told this is only a preliminary chat and he is not committed to anything.

He has been told quite firmly that there is a big difference in outcome between Brachytherapy and Brachytherapy with boost. He is not overwhelmed by the idea of CC, but if it has to be it will be.

No decision will be made if HDR or LDR as according to Dr.Y as he needs to examine OH himself to see which he would recommend.

Due to Dr. Y's speedy response, caring attitude and comprehensive Information Brachytherapy (even with 9 month CC) is now 2nd choice.

User
Posted 19 Apr 2022 at 19:06
What is "CC"? Lots of abbreviations around here, but that's a new one on me.

Thanks,

Chris

User
Posted 19 Apr 2022 at 22:38

I assume Chemical castration ? DW refers to it in her previous posts.

Thanks Chris

User
Posted 20 Apr 2022 at 05:53

When we saw Dr X at our local hospital he gave us leaflets for HT tablets and injections and the first line on the leaflet description for the injection is "chemical castration used for violent sex offenders, prostate cancer and breast cancer" 

User
Posted 20 Apr 2022 at 07:09

Yes a shame they have everyone lumped together....

User
Posted 20 Apr 2022 at 07:15
Thanks. Never come across that name for HT before!

Cheers,

Chris

User
Posted 20 Apr 2022 at 07:39

The brachytherapy option sounds interesting. I guess it’s a curative option without the need for surgery. Are the side effects lower than surgery did he say? 

User
Posted 20 Apr 2022 at 08:06

Also noted the MRNA vaccine trial has arms for those with Local prostate cancer (LPC) heading to a RP

https://clinicaltrials.gov/ct2/show/NCT04382898#contactlocation

interesting BioNTech use of this technology that we are all so familiar with now following COVID.

 

User
Posted 20 Apr 2022 at 08:15

Hi Claret, according to Dr Y there is less chance of incontinence and recurrance. (Sorry for the spelling, but English is a very difficult language for a poor foreigner) 

User
Posted 20 Apr 2022 at 08:23
It's a form of radiotherapy, so the side-effects are completely different to those of surgery. If you download the PCUK info sheets on the different treatments for PC you'll find out more about it.

Best wishes,

Chris

User
Posted 22 Apr 2022 at 08:53
Hi, I am worried as the oncologist's treatment options seem to be very intense. Our Dr X treatment is 60 gr in 20 sessions and 6 month Ht and Dr Y is suggesting LDR Brachy, 15 lots of RT and 9 month HT.

User
Posted 22 Apr 2022 at 09:10

For a not very advanced prostate cancer, 6 months of hormone therapy followed by 20 sessions of radio therapy with no further hormone therapy, does not seem overly aggressive or intense to me. In fact this is exactly the treatment regime which I received for my cancer (PSA 18.5, Gleason 4+3, T1c m0 n0).
Hermit.

Edited by member 22 Apr 2022 at 09:16  | Reason: Not specified

User
Posted 22 Apr 2022 at 12:46

Hi Hermit of Eyam, I agree with your regarding the RT, (PSA 8, Gleason 4+3, T2a M0 N0), but in comparison the Brachytherapy sounds a lot more with Brachy LDR, 15 session RT and 9 month HT.  That is the one I am regarding as intense. 

User
Posted 22 Apr 2022 at 13:45
Sounds to me as if he's making a determined effect to eradicate the cancer by combining brachytherapy with EBRT and HT. That's exactly the sort of "multi-pronged attack" on the cancer that you want to maximise the probability of a successful outcome.

Best wishes,

Chris

User
Posted 22 Apr 2022 at 14:40
You only get one chance of administering full RT and although it may be done in different ways, it's best to ensure what is given does the job rather than leave some cancer cells to survive and possibly require salvage treatment in due course. Oncologists have considerable experiance of PCa and what RT can achieve. It does not necessarily follow that a slightly less advanced case requires less RT, although sometimes a shorter period of HT may be advocated.
Barry
User
Posted 22 Apr 2022 at 20:25

Dear Desperate Wife,

I fully understand your anguish, which can almost be worse for a partner.

I, now 67, had unuilateral nerve-sparing surgery in 2018, with PSA 7.02 and Gleason 3+4 and no lymph nodes affected. I started doing pelvic floor excercises a few weeks before the operation, and - almost 4 years on - am still doing them.

My bladder control is almost better than before, except when I've had too much whiskey :)

To my great surprise, my erections were almost as good as before (they weren't great sometimes anyway), but with the help of Sidenafil they are absolutely fine.

I opted for surgery because I wanted to keep the option of Salvage Radiotherpay in my back pocket, which I'm glad of, as I am now facing further treatment, my PSA having started rising again.

 I decided against HiFU at the time, as the cancer was breaking out of the prostate, and they would have had to damage the nerve on that side anyway, making surgery a no-brainer for me.

I coped well after surgery, although my wife took time off work, but the blood thinner injections were easy, and I had to deal with the catheter myself anyway.

I went on my first foreign trip after 3 months, and felt absolutely back to my normal strength after 6 months

Every choice is personal, and - as fellow patients in a support group and the extremely helpful people on Prostatecanceruk said - once you've made your decision, it'll be right.

All the very best,

Peter

 

User
Posted 23 Apr 2022 at 06:54

Hi PeterJM, thank you very much for your positive message.  

Wish you all the best and hope your PSA behaves it self and stops rising.

Have a good weekend

DW

User
Posted 26 Apr 2022 at 06:21
as OH is now getting impatient and wants it over with he has decided to follow the advice of the urologist and go for RP first leaving RT as a back up. Now waiting for a date. I am scared. It is a major operation with lots of potential complications.
User
Posted 26 Apr 2022 at 06:49
It is major surgery, but it's a routine operation that your urologist will probably have performed hundreds if not thousands of times. You can look him up on the BAUS website and see what his success rates are - I'm sure you'll find that they're excellent.

Best wishes,

Chris

User
Posted 26 Apr 2022 at 08:54

One of the reasons, DW, I chose surgery was to get it over and done with. Also, so that I would know the final grading of the cancer that was present. There are potential complications with whatever treatment is chosen and in my case, and for many others  that have posted on here and for people that I know that do not post on here, the complications  have either been non-existent or quite minor.

 

Ivan

User
Posted 26 Apr 2022 at 18:00

Hi Chris, that is one reason I am very worried - by his own admission he is inexperienced and will be supervised by one of the senior surgeons.

The other problem I have is that we went to the April support group meeting and there were 2 gents with major problems.  One is on the waiting list for an artificial spinster and the other one has a suprapubic catheter. Not reassuring at all.  

User
Posted 26 Apr 2022 at 18:02
Got a date now - 18th May 2022. Just hoping it goes well and OH has no extra issues (we know of incontinence and ED)
User
Posted 26 Apr 2022 at 23:19
Pleased you now have a date and can start to prepare as best you can. OH must religiously do the pelvic floor exercises (my hubby uses the squeezy app). It has been proven that incontinence issues are reduced if you get those muscles working.
User
Posted 30 Apr 2022 at 03:57

Hi Desperate Wife, It’s good to have a date and it’s not long to wait. Doing the pelvic floor exercises and generally keeping fit are the very best preparation and in my case, is certainly leading to a speedier recovery. I’m 73 and was diagnosed in January  - Gleason (3+4). I had the option to have the Robot Assisted Radical Prostatectomy at the Royal Surrey in Guildford. Hormone treatment and radio-therapy didn’t appeal. It would have taken the best part of a year to complete and I didn’t want to put on weight and have a daily 40 mile trip for six weeks of radio therapy in the middle. I also run 3/4 times a week and need the activity for my mental health.

My RARP took place on 23 March. I was in and out in 24 hours. The surgery and care I had were outstanding. I had the catheter removed on 1 April. Now, 5 weeks post-op, my continence is almost back to normal and tomorrow, I shall do Parkrun very gently. The incisions in my abdomen were tiny, apart from the one where the surgeon exited the prostate. All healed well within days. I found swimming every morning for the last three weeks really helped. Psychologically, it helps because every day I felt stronger. From doing just two lengths to start with, I’m  now happy doing 50. I can’t seem to get an erection any more, but it’s probably early days and I’m sure I can recover that in time. Next Thursday, I see my consultant to hear the details of the pathology results. I would encourage you to trust in your surgeon and the team. Ask all the questions you need to. They want the very best outcome for your husband and will do everything to achieve that. One final point is that anaesthetics and post-op pain relief are so sophisticated now, that in my case at least, I only experienced discomfort after about a week - but really no pain. The only pain I experienced was  briefly when the spinal block went in - women in childbirth have this and don’t complain! I wish you and your husband well. We really do have world-leading cancer care on the NHS and are so fortunate to live in the UK.
Best wishes, Ian

Edited by member 30 Apr 2022 at 03:58  | Reason: Not specified

User
Posted 30 Apr 2022 at 07:11

Hi Ian, thank you very much for your very positive post regarding RP.  My OH did not fancy HT/RT either.  It is very encouraging that after such a short time you are doing the park run and that you are up to doing 50 length swimming.

May your excellent recovery carry on and reassure others facing RARP.

User
Posted 02 May 2022 at 10:40

I use CC  on my blog all the time. In fact I've crossed out the Hormone therapy incidences and replaced with CC.

I'm thinking of doing the same for radiotherapy..to..... Radiation Treatment!

I don't want to put guys off but we need to de-sugar these terms!

My blog won't help the OP's husband much but it help others....it becoming more of an encyclopedia now! Quite a bit on the Radiation Treatment, even a video or two of me!

I've stopped CC early because of how it's affecting me but all men are different....

 

Edited by member 02 May 2022 at 11:27  | Reason: Update

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 02 May 2022 at 12:10
I don't think it is "sugar coated" Esteban. It's called "radiotherapy" because it has a therapeutic intent. Prostate RT doesn't have any particular dire side-effects for the overwhelming majority of patients. Did you have any particularly bad RT side-effects?

Nobody enjoys cancer treatment, but it's a hell of a lot better than dying from cancer!

All the best,

Chris

User
Posted 02 May 2022 at 12:23
Esteban,

We must agree to differ about that!

Cheers,

Chris

User
Posted 02 May 2022 at 12:33

'I'm sorry but the word therapy conjures up whale music, crystals, essential oils....gentle massage ..'

 

No it doesn't. It is another word for 'treatment'. Merriam Webster defines it as 'therapeutic medical treatment of impairment, injury, disease, or disorder'.

Using terms like 'chemical castration' instead of 'hormone therapy' is hugely emotive for most men. Calling radiotherapy 'ionising radiation - x-ray photons created from bremmstrahlung' is just scary and not at all helpful. Most people will have no idea what 'bremmstrahlung' is, by the way, and will be no better off when they have looked it up. I knew when I signed up for radiotherapy that I would be getting very short doses of hard x-rays for 20 days. So what? The therapy is designed to destroy cancer, not the patient!

'Hormone therapy' and 'radiotherapy' are the commonly accepted terms, and I can't see any point in using other terms which will just add to the fear and anguish of those who have recently found themselves to be prostate cancer sufferers. Call it 'radiation therapy' if you prefer - but it is still therapy and has saved many hundreds of thousands of men.

Hermit

Edited by member 02 May 2022 at 12:35  | Reason: Not specified

User
Posted 02 May 2022 at 13:06

Originally Posted by: Online Community Member

Using terms like 'chemical castration' instead of 'hormone therapy' is hugely emotive for most men. Calling radiotherapy 'ionising radiation - x-ray photons created from bremmstrahlung' is just scary and not at all helpful. Most people will have no idea what 'bremmstrahlung' is, by the way, and will be no better off when they have looked it up.

Hermit

Totally agree. I have a PhD in physics and I didn't know what "bremmstrahlung" meant!

Cheers,

Chris

User
Posted 02 May 2022 at 14:07

Ok but read my blog. I'm not alone in suffering miserably with ADT, to the point of being treated as a mental health patient now. On mirtazapine and counseling .

And to finish me off... Covid! Day 8 and still positive! Grr .

 

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 02 May 2022 at 14:31
I hope that now you're stopping the HT that it's not too long before you start to feel better, Esteban.

Best wishes,

Chris

User
Posted 02 May 2022 at 17:12

Hi Hermit of Eyam, you confused me a bit with bremmstrahlung as there is no such word in the German language.  You are talking about Bremsstrahlung for which a simple translation is braked radiation (Bremse = Brake and Strahlung = radiation)

User
Posted 02 May 2022 at 17:27
Which is, of course, much clearer.

User
Posted 03 May 2022 at 10:28

Yep. I got ticked off by one radiographer during one of my RT sessions for saying the machine's power was 6 MeV. He said no it's measured in MV.    I had to go home and look that up....if a radioactive element decays, it can give out some energy...this is fixed and is quite precise.  In the RT treatment they use a linear accelerator to produce the x-rays. They accelerate the electrons to very high speeds then fire then at a target, usually a lump of tungsten. The electrons decelerate.. very fast ...if you like, they scream when they do this...this scream is x-ray energy....it can be anything from zero up to 6 MeV ..so a whole range if energies. Hence the ticking off....6 MV and not 6 MeV. Simples. eh. End of physics lesson!

Steve

Blog: prostatecancer.vivatek.co.uk

User
Posted 03 May 2022 at 17:47
Hi, got the date for RARP, his Covid swatch and pre op check, but no meeting before hand where everything is explained to both of us.

When I rang one of the nurses in March to ask some questions, I was told there would be a meeting where everything would be explained and that somebody would ring me when OH is out of theatre to let me know how things went.

This is not happening either instead I have been given a number, which I may ring with their kind permission to find out if OH is ok, or wait until he is on the ward and he can ring me.

Also I am not allowed to visit him. On the 19th I can drop him off at the hospital and then? Not sure what happens then. Will somebody ring me to let me know when I can pick him up? Or does OH ring me?

When does the hospital decide when to remove the catheter? Time given is 7 - 10 days. I will have to drive OH to the hospital (about 17 or 18 miles), when will they let us know? I work full time so I need a time frame so I can arrange time off with work.

Sorry for the rant.

User
Posted 03 May 2022 at 18:52
He'll probably be given the appointment for the catheter removal when he's discharged. That's the usual procedure. It would be a good idea, in the mean time, to go to the chemist and buy a pack of Instillagel. This is a local anaesthetic gel that can be squeezed into the tip of the penis if the catheter makes it sore, which is very common.

I hope everything goes smoothly for the surgery and recovery.

Very best wishes,

Chris

User
Posted 03 May 2022 at 22:51
Hi DW, I know all hospitals are different. We had a telecon with surgeon prior to surgery where everything was explained. Lots of info sent in the post too (exercises, what to pack in hospital bag etc.) We were given tel nos of nurse specialists who we could ring at anytime to ask questions, After the op, the Surgeon called to tell me everything had gone well with no complications and he was in recovery etc....... I then called the ward, 2 hours later to check he was back. I didn’t speak to him until the morning after surgery. When he knew he was being discharged and had all his drugs, I collected him. Just under an hours drive.........As CC says, appt to remove catheter was given before he left hospital. The instillagel is a must, we got some from district nurse who called us to let us know they were there if we needed help with the catheter. Speak to the prostate cancer uk specialist nurse and ask for a post surgery pack. They will post you one out. They are super helpful and will answer any questions you have. Hope you can fill your time between now and the op. Hoping it all goes well X
User
Posted 04 May 2022 at 06:14

Dear Jayney P,  thank you - pack arrived yesterday. Will get the instillagel.   Been told already the district nurse will not be involved, so will have to rely totally on the Prostate Uk and MacMillan nurses.   Wishing you a good day

User
Posted 13 May 2022 at 12:43
got a question for all who have had RP - we ended up having a video conference with a nurse going through all the details. I asked about visiting OH afterwards and the nurse asked me why I would want to visit him as I was going to pick him up the next day. I told her because I love him and want to give him comfort. Her reply was he might not feel like having a visit the same day.

OH has indicated that he really would like me to sit next to his hospital bed when he is brought from the recovery room.

Questions to you guys - how did you feel about your partner visiting you after RP. Were you glad to see them or did you wish they had not come?

Thank you

User
Posted 13 May 2022 at 12:55

Hi,

I was in and out of hospital within a day, but the reason my OH did not visit, was that my surgery wasn't until the late afternoon, and by the time I was awake and out of recovery it was well past visiting hours. My surgeon was kind enough to call her after the surgery to say all had gone according to plan, which was appreciated. By the next afternoon I was home. 

 

P.

 

User
Posted 13 May 2022 at 13:00

DW, I haven't had an RP, but I did have a nephrectomy operation (kidney removal) in 2018 after my prostate MRI scans also showed that I had kidney cancer. The first 12 hours after my surgery I spent being violently ill as a side-effect of the general anaesthetic. The last thing I would have wanted was to have any visitors! My surgeon was also kind enough to phone my sister (my next of kin) to let her know that everything had gone fine. 

Best wishes,

Chris

Edited by member 13 May 2022 at 13:02  | Reason: Not specified

User
Posted 13 May 2022 at 16:23

DW, I was in for two nights after my RARP, my surgery was in the morning and my wife visited in the late afternoon. I was given some tramadol which instantly disagreed with me , my wife grabbed a sick bowl and I managed to get the vomit in the bowl but it was going that fast it came out the other side all over my wife. I seem to recall falling asleep while she was there. My recovery seemed to involve alot of sleeping, perhaps because the wards are so noisy at night and the nurses disturb you to take BP etc. 

My ward was a 4 bed bay with a reasonably friendly bunch of people, to keep us all occupied.

I did go out of area for another op a few years ago and spent two days and nights in hospital without any visitors, again plenty of sleeping and some friendly inmates.

Make the most of a bit of You time, he shouldn't need much looking after when at home but make the most of the peace and quiet.

We are all told to do pelvic floor exercises, at one of Andy's zoom meetings Victoria the physio expert also suggested practicing tensing the pelvic muscles when standing up and lifting.

Hope all goes well. 

User
Posted 13 May 2022 at 18:01

I had surgery start at 9 a.m. by 4.30 p.m. I was in the ward after being in high dependency for a few hours.
I was over the moon to see my wife and my three boys that evening. If you want to visit that is surely your right? 

Ido4

User
Posted 13 May 2022 at 18:25

I had RARP in Guildford. My wife dropped me off in the car park at 11.00. The surgeon saw me and I signed the forms. He asked who he could ring afterwards - and he did, personally, which was very kind of him. I was in theatre at 12.00 having my spinal block and other attachments. I came to at 4.00 in recovery. I was just happy to be out of surgery. My wife knew everything had gone well, so wasn't worried and I received a text from her. To be honest, I did not want her there afterwards. I was processing everything. She had already been fantastic in keeping me cheerful in the run up to the operation and I felt we both needed a bit of space. The other guys in the ward (of six) were good company and although the night seemed to drag, you're so drugged up it doesn't seem a problem. At 11.30 the next day I was discharged. I walked with my bag to the car park and met my wife, who drove me the 1.5 hours home. Sometimes, you just need some space. I didn't want to see anyone from my family in the hospital environment because I would have felt responsible for their worry and concern and that would have been another pressure on me. Selfish or what... I don't know. But I was so pleased to see her when she came to pick me up. And she was pleased to see me!  Ian

Edited by member 13 May 2022 at 18:27  | Reason: Not specified

User
Posted 17 May 2022 at 01:14
I think a lot depends on the time slot - whether he is on the morning or afternoon list. John was an afternoon list patient - he didn't come out of theatre until after 9pm due to complications; the surgeon rang me to let me know he was okay.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 May 2022 at 07:57
I didn't know at the time but my wife was having an affair with my neighbour, needless to say she didn't want to visit me at all and was pleased when I ended up staying in hospital for 3weeks with complications. Because I was seriously ill (or maybe because I knew deep down our relationship was dead?) I felt very vulnerable in hospital and lived for the visits I did get.

When I was in for 3 nights recently for a new hip my lovely second wife was keen to visit but wasn't allowed because of covid. Because I was confident in my wife and my treatment I never once felt vulnerable and hence was more than happy with WhatsApp calls.

I guess what I am saying is do what's right for you two! I must say though hospitals seem to work better without visitors!

User
Posted 20 May 2022 at 05:45
OH had RARP yesterday, all went well (we have been told, but it took 4.5h). We got the appointment letter for the catheter removal, it states that it is an all day affair. Is it normal that it takes that long?

User
Posted 20 May 2022 at 06:08
Mine took over five hours. It was nerve sparing one side

Cheers

Bill

User
Posted 20 May 2022 at 06:08
Mine took over five hours. It was nerve sparing one side

Cheers

Bill

 
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