Worry about meeting the consultant on Monday

Hermit

Hi DW, I have been following your post with interest. I guess everyone handles it differently...

It is a lot to take in and having just been through the early part of 'the journey' before Christmas, I can sympathise. 

I was seen under the 2 week wait process and had MRI, bone scan and biopsy all within 7 days. I then had a further CT before my final options presented by the consultant.

My diagnosis offered RP or EBRT with HT.

I opted for Radiation which starts the end of April.

I am currently going along with Hormone Therapy until then.

My condition was T3a M0 and gleason 4+5 with a psa of 22.

There has been no suggestion of anything terminal (although I know where I am going if it is!) but more focussed on cure than anything else. I have no symptoms and only found out through mass testing which my wife suggested I might like to attend.

I am eternally grateful.

I have no symptoms at all and am 71 years old .

My prayer is that you both find peace in this challenging time and that you make all the right decisions with much wisdom. This forum has been amazing and although I contribute very little, I find much assurance from the contributions made here.

With every blessing for you both in the future,

Ian

Have to say I think one or two comments above about DW expressing panicky feeling were a little harsh There is no getting away from it, the C word is pretty damn scary and it's 100% normal to feel panicky at times, regardless of whether or not you have been told everything there is to tell.

As someone who has been on the receiving end I can strongly empathise with the feeling that you are not being told everything. It is very much what I felt prior to my treatment. And it has been widely acknowledged in previous discussion on this forum that urologists and oncologists can sometimes lack the reassuring 'bedside manner' one might be hoping for.

But as others have said. the problem is, medics have to be clinical in their assessment and can only pass on information once they are in full possession of the data themselves. It is all too easy when you are in an understandably heightened state of anxiety about potential outcomes to make the assumption that the medics know more than they are letting on, and that they are not keeping you fully in the picture.

However, the chances are things may well turn out to be a lot less ghastly than seems possible beforehand. Hindsight is 20/20 vision, meanwhile until you get to that stage, your mind is always going to be beset with anxieties. It is only natural.

So please DW continue to voicing your anxieties. This forum is a fantastic resource for anyone needing advice about the dreaded PC and we are all here to help each other get through the difficult times as best we can.

For the record, I was diagnosed with PC 14 years ago and underwent a robotic RP followed three months later by RT in 2009. Though I cannot pretend it has ALL been plain-sailing ever since, what I can say is that life has never been better. Just recently though, the dreaded PC has returned, so now I await news of when to start HT treatment.

But I remain as happy as the proverbial sandboy, because if my experience of PC has taught me anything, it has taught me not to worry. Things seldom turn out to be anything like as bad as it seems they might beforehand, and that was certainly how it turned out for me.

Edited by member 25 Feb 2022 at 21:35  | Reason: Not specified

I don’t think you bleat about it at all francij; it was a terrible thing that happened to you. As you may remember, our dear friend’s wife left him after the RP - she said that having seen him with his penis in a vacuum pump, she would never be able to feel the same way about him again. He also went on to find a kind, supportive and loving new partner and is now very happy but to be rejected when you are most vulnerable is dreadful. 

Hi DW, don't worry about unloading your negative thoughts on this forum. There are plenty of members here we all have our own experiences and thanks to this forum can empathise with anyone elses varied experiences.

I'm of the opinion that it ain't worth worrying until you know you have something to worry about, and even then it ain't worth worrying unless you personally can do something about it.

Get the full diagnosis, get the proposed treatment plan, then research the options. I suspect your husband may either be clamming up emotionally or just have the same attitude as me, outwardly it would look the same but inwardly they are totally different attitudes. Ask him if he thinks you are making more fuss than he thinks it deserves and if he says yes, don't make a big fuss about it (at least not to him, but say what you want here).

Hi Desperate Wife...there is no point being angry. My hubby is also a good man,husband,father and has always worked to give us the very best. At no point have we questioned"why him?" bearing in mind that one in two people are likely to get cancer in their lifetime. We have had tears and I have had tears alone ...usually at 3am. We have made sure we have told his brother to get tested and our son and other male family members when they reach an age.Our main frustrations have been down to the fact that we got very little information at the time of diagnosis,particularly about making treatment decisions. Contact with anyone on the telephone has been a nightmare with answering machines or no one answering and waiting around for days to get a call back.We read everything we could and I follow lots of people on the online community. My cup tends to be half empty while my husband's is half full. We eventually opted to pay for a private consultation (I couldn't go due to COVID restrictions)where hubby got more details of his situation and an almost agreement to his decision to go for RP. Diagnosed before Christmas at Gleason 9,grade 5,T2 and therefore high risk and as the consultant said,"as aggressive as it gets",we have chosen to dip into savings and he will have his op 12April. I appreciate we may be more fortunate than others in that we can pay privately but as many people here say,this is a journey and you have to take it step by step. We know it won't be all plain sailing and we know all the negatives,but we also read about the positives and I am trying to get some of my husband's attitude of make a decision,get the cancer out and move on with no looking back. Please try not to be angry. It is sad but take it one step at a time. I too was panicky and afraid but am slowly getting my head round it

Edited by member 22 Mar 2022 at 10:02  | Reason: Spelling mistakes

The blood thinning injection takes about 10 seconds to do, and the hospital will show him how to do it. You basically just pinch a fold of flesh on your stomach, stick the needle in and press the plunger. Couldn't be simpler, and doesn't hurt at all. It's all designed for use by "non experts".

If your job allows you to work from home, and you'd feel better doing so, then do so. All I'm saying is that there's absolutely no medical necessity that you do so. To be honest, when I was recovering from my surgery, I just wanted to be left alone!

Best wishes,

Chris

Edited by member 22 Feb 2022 at 09:27  | Reason: Not specified

At every stage there have been fresh things to worry about, what kept me positive during this time was my absolute intention not to be a passenger. I've researched, asked questions of nurses and consultants and requested procedures where I felt they were necessary and they agreed. There were many things that frightened me, first DRE, first MRI, First Biopsy and of course every PSA monitoring blood test. I soon realised that you leave your dignity at the door, when I'd accepted this the process was a little easier to handle.

I suppose the message here is, your husband will be afraid, he may dread every stage of the process but my experience of the NHS and particularly the Urology Dept is that these people are caring and supportive. I think you need to see yourselves as part of the team, this amazing team of professionals who, collectively will ensure the best possible outcome.

My outcome is that 2 years on and PSA is still undetectable, I'm fit and well, continent but sadly defunct in the erection department. We knew this was a distinct possibility, my consultant gave us an option, accept the probability of a lack of function or face a significantly shortened retirement. Not an option for myself or my wife, immediate decision which we don't regret for a moment.

My wife has been amazing, most of all she's recognised the moments when nothing needed to be said or done, those moments when I just needed to stop and process my thoughts without any outside influence. We're as happy now as ever and determined to enjoy the rest of our lives together.

I hope you both have an equally amazing outcome.

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

You and Bollinge may be of personalities that just take it all in your stride but the vast majority of people diagnosed with cancer will find some aspect of it horrible. John's coping mechanism is to immediately wipe all negative information from his mind and live in blissful ignorance - this has served him well for 12 years now but it does mean that every so often, a PSA rise or the news that the cancer had come back came as a huge shock to him because he has only retained the bits of information he likes 🤣

If he is T2a M0 with a Gleason 4+3 and a PSA of 8, it is not terminal! And why would the consultant 'not tell you the truth'? The consultant is waiting for the bone scan results to complete the picture before telling you the full facts and outlining your husband's options. If your husband remained untreated for months, it would probably make no difference to the outcome. Prostate cancer is very very slow-growing. In the meantime, you have gone into full-on panic mode. Would you be able to understand and interpret his biopsy and pathology report? I wouldn't, and I am reckoned to be pretty smart. That is what the consultant will do when you meet him / her. That is his / her job - they know what they are doing! They do it practically every day, and have no doubt treated dozens, maybe hundreds of similar cases.
What 'answers' do you think you are not getting? You will get them all at the meeting with the consultant / oncologist / surgeon. They will explain the various options for treatment and your husband will choose the one he prefers. If you have any questions then or later, the treatment team will answer them, or the specialist nurses from Cancer UK or Macmillan - just a phone call away.
In the meantime, calm down. You are not doing your husband or yourself any good like this.
I am sorry if this sounds harsh. I can tell how worried you are. But I have been through it, starting from a similar point to where your husband is now. He will get through it. He is not going to die from this. If you don't believe me, ask LynEyre. She knows a lot more than I do about it.
best wishes,
Hermit

Edited by member 25 Feb 2022 at 21:39  | Reason: Not specified

Hi DW I'm glad you are supporting him rather than taking the lead. If he has lost 1 stone, and as you mentioned earlier I'd fit and goes to gym then I don't see a problem here. I think RP is over used, because it's simplicity is very appealing to patients, but other methods are equally effective with fewer side effects. However all treatments can have side effects, and any treatment may fail; so it is best to leave the decision to the person who will have to suffer the consequences of their choice (as a couple you will suffer some of the consequence s but he will suffer them more).

Sadly the administration at many hospitals is lacking. I do hate it when politicians say they want to cut bureaucracy and spend it on front line services when often the problem is in the administration not the front line.

I'd honestly suggest that you let him deal with it as he sees fit. Everybody comes to terms with a cancer diagnosis in their own way, and the fact that he isn't handling it the way you'd like him to  doesn't mean that he isn't thinking about it. At the end of the day it's his body and his decision to make. 

Best wishes,

Chris

No, when getting anything new: medicine, TV, car, electric drill... Open box, use item. Leave instructions in box or unopened on table. In six months time find button or feature and say "I never knew it did that".

I agree fantastic work by all at our nhs hospitals keeping us all here off course not pleasant at times need to be ruthless at times to try to cure but my weekly visits to the cemetery  a reminder how greatful we should be off the tenacity and the fantastic care provided by our nhs I for one is truly greatful 👍

That made me laugh since in the last couple of days we have had posts from 2 men who are having or have had penile implants, a man who hasn't had an erection since 2019, a man who can't urinate asking what to do if he goes into retention, and a couple of men dealing with recurrence. I guess we all just see what we want to see. 

 Desperate wife, have you managed to get any clarity yet on why the surgeon said the RP would not be full nerve sparing? The answer to that will also indicate the likelihood of the main side effects that impact on QoL after the other treatments as well. Assuming that it has turned out to be a misunderstanding and the surgeon had not said the op would be non nerve sparing, I would have thought the brachy option is a no-brainer. 

The bical wouldn't usually be 2 x 3 months - stopping bical and then starting it again can feed the cancer so it will probably be a continuous 6 months of daily bical tablets with RT (or brachy / RT) in month 4. John had 6 months of bical - he didn't like it but managed to continue working full time, going to the gym 5 nights a week and playing rugby. He had hot flushes and grew some moobs (our NHS CCG doesn't allow tamoxifen or RT to prevent this) - the flushes have turned out to be permanent but he has learned to manage them. The moobs were also permanent but he is a big rugby type and already had pecs so it is hard to tell which is muscle and which is breast material! Moobs tend to be more obvious on slim men or men who don't do gym work. If he is getting tamoxifen from the start, the risk of moobs is very much reduced although tamoxifen has its own side effects :-(  

Edited by member 08 Apr 2022 at 22:01  | Reason: Not specified

And, Lyn ,with your glass half empty mindset you only see the negatives rather than the positives. There have been many examples of men on here that have undergone surgery and have not experienced major issues just as there are men who have not experienced issues when undergoing other forms of treatment. A balanced view goes a long way you know!

Ivan

Best wishes,

Chris

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

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

'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

I was probably about the same at that stage after catheter removal. A long walk would gradually cause my bladder virtually  empty  Being on your feet and active for long periods (walking,  gardening etc) are the hardest hardest to master. I'm now eight weeks down the road. I'm not there yet but I'm still gradually improving. I can now do a 12 mile walk and not worry about a pad change. I do all my pelvic floors in the standing position. I think that helps. Chris.

Hi Everybody, my husband and I are meeting his consultant on Monday to get the results of his tests.  I am petrified.  Is that normal?  

Also so far we have had absolutely no support from either our GP (unless calling us in for a blood pressure test) or the consultant.  When can we expect to receive the support (counselling etc)  the NHS website claims we are entitled to?  T

he only support I have had so far are Prostate Cancer UK and MacMillan.

Getting hold of our GP is mission impossible as the receptionist ask if it is really important.

Thank you

My GP consistently gave me the wrong (as in polar opposite) advice at all stages. They continue to this day believing a man with no prostate is OK so long as their PSA is less than 4!

Sadly not the case for all men as both RP and RT can reduce the length of the penis regardless of whether a pump and chemical help is used, making intercourse difficult and very likely unsatisfactory. for a man's partner. There are other ways of enjoying sex but very few men are warned prior to treatment about likely reduction in penile length.

DW , sometimes we men need a good kick up the backside 😀. I got a PSA test almost by accident, when the elevated PSA came back and a quick referral was made I shut my wife out. It was my body my problem, I was going to sort it out my way. I would talk to work colleagues and even strangers about prostate cancer but not my wife. The first time I involved my wife was asking her to drop me off for surgery. In hindsight I was very selfish. 

Fortunately my wife was very forgiving and gave me all the physical and mental support I needed. My wife had a week off work, and then went back to work, she only worked a mile from home so did nip back at lunchtime. I had robotic surgery and was soon able to get around. My wife did the injections at night, she also connected and disconnected my catheter night bag.

Thanks Chris

Mine took 3 days 👍

It usually depends on what day the MDT meets - if the onco received the results of the bone scan today but the MDT meets on Friday, you should hear something at the beginning of next week. If the MDT meets on Tuesday mornings, you might hear something tomorrow afternoon.

The target for NHS settings is
- referral (on urgent cancer pathway) to first appointment - 14 days diagnosis
- referral to diagnosis - 31 days (aspirational)
- treatment choice made to treatment starting - 31 days
- referral (on urgent cancer pathway) to first treatment - 62 days

This is published by the NHS and easily found via Google - https://www.england.nhs.uk/wp-content/uploads/2015/03/delivering-cancer-wait-times.pdf  However, there is national recognition that Covid has severely delayed both diagnosis and start of treatment in some parts of the country.

When I suffered ED following my prostatectomy a dozen years ago (I was in my mid60s at the time) I was offered viagra and cialis. Unfortunately neither had the desired effect. In fact a had a bad reaction to cialis, it caused me severe pain in my legs.

So next I was offered a pump. But I have to be honest, right from the outset I had grave misgivings about using it. The very idea of using such a contraption to enable sexual intercourse turned me off big time. The whole process seemed grotesque. But of course, I recognised that I was not the only one affected by my ED, so I did my very best to make something of it.

But despite my best efforts I was still unable to achieve an erection strong enough for intercourse and eventually came to the conclusion that for me the damage wreaked by the operation had been too great.

So it was that both my partner and I had to come to terms with the reality that sexual intercourse was no longer possible between us.

The good news is that we discovered there was so much more to our loving relationship than sex, and fortunately enough our marriage is as strong now as it's ever been.

I fervently hope that your partner can work through his current difficulties with ED but even if things don't work out, please please, hang on in there, because as you say, you still love him.

When all is said and done, it is your precious love that can help you get through these difficult times and eventually go on to resume a happy life together.

Tony.

Our GP called us a little while after diagnosis just to see how we were and how we were getting on. We had already done quite a bit of research then and had some plans in place so he was ok with that. I think it’s probably a usual thing to do when they get the notes through from the hospitals. 

I haven't, but we do have people on here who have, I'm sure they will comment soon. I would say AS is the best treatment possible if you're oncologist says it is an option. It has no physical side effects, the mental side effects, may be anxiety and that is what stops some people choosing AS (I would not suffer that side effect due to my personality). AS needs proper reviews regular MRIs (at least for the first few years to establish there is really no progress).

Very often AS fails after a few years, maybe less than five. Some people say "well if it is going to have to be treated I may as well have it done sooner than later". I don't agree with that sentiment. I would want a working penis as long as possible; only start chopping things up when you know it needs doing for certain.

Sound advice as normal from Lyn reading what she has advised on this forum has helped me personally deal with it even if the advice has been for other people a real credit to this forum 👍

Edited by member 06 Mar 2022 at 18:29  | Reason: Mistake

It's neither good nor bad; it certainly has no impact on the success of prostate cancer treatment.

Cheers,

Chris

Cheers,

Chris

When I was weighing up treatment options, I called Macmillan to ask about the chances of incontinence after radical prostatectomy. The answer was clear - I was told it is a 100% certainty. (I recall that she did say that some improvement was possible in the months  post-surgery, and even probable). That (along with a reluctance to have surgery) was why I opted for hormone therapy then radiotherapy. But is treatment at a clinic in Germany a realistic option? I think you would have to pay for Nanoknife treatment in Germany as a private patient, wouldn't you? And if so, you would be looking at thousands of euros for the treatment, plus travel and other hospital costs.  I can't see the NHS funding it when they have viable alternatives available in this country.
Hermit

Edited by member 12 Mar 2022 at 11:26  | Reason: clarification

https://community.prostatecanceruk.org/posts/t27973-Incontinence-recovery-time-scale-experiences

Hermit

Hi,

Just a thought. HIFU costs about the same going private as RP but is said to be less problematic in terms of ED.

I know of a respected top ten RP surgeon who does both - so I suppose that's some form of recommendation.

Well said Chris totally agree the choice is yours had radiotherapy and on hormone therapy for 2 years obvious bone aches at times and loss off labido is probably the main drawbacks but the choice is yours as they say 🤔

Edited by member 17 Mar 2022 at 14:06  | Reason: Spelling error

Gaz61, that is great news - may you be feeling good for many many years

Yes, entirely happy. I'm not just pretending that it was all very tolerable; it really was!

What good would complaining do? It's not going to change anything, and is unfair to the hard-working medical staff who are doing their very best to treat you. 

Cheers,

Chris

It is a team at the moment because OH hasn't chosen his treatment. Once he has decided which treatment he is going for, you will know whether to contact the urologist's secretary or oncology team with any problems.

Yes, I would of course use the words bearable and tolerable, but that's because we have cancer and any treatment needs to be aggressive, it has to kill the cancer but not kill the patient. But the staff do a good job they ask questions, etc. and if you read my posts you will often see me praising the food at the Christie, in fact the Key Lime Cheesecake is positively to die for.

Hi JaneyP, thank you for giving good news regarding your husband's excellent lack of incontinence.  I passed this on to my husband, he read the HT leaflet last night and he was horrified at the side effects so currently RP is his preferred choice, but hoping that the referral to UCHL for treatment with Nanoknife is successful as that seem to have less after effects.  

Wishing you and your husband that everything goes perfectly from now on.

Do bear in mind that although there's a huge long list of potential side-effects from HT, no one person will experience all of them. I had very few myself - fatigue was my main one.  Judging from my own experience and reading many other reports of HT on this forum, it's a treatment that the majority of men tolerate well.

Best wishes,

Chris

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.

Best wishes,

Chris

Best wishes,

Chris

Best wishes,

Chris

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!

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.

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. 

Glad to hear that the surgery went well.

All the best,

Chris

Sorry  I should have been  clear the RARP took over 5 hours

The TWOC was done by the district nurse. She came round in the morning, I actually removed it myself under her supervision because I wanted full control if there was pain or resistance while getting through the new anastomosis. She left a log sheet and I recorded quantity of water in and water out then she returned later that day to check urine left in bladder after a pee with ultrasound. 

Good luck to your OH with his

Cheers

Bill

Edited by member 20 May 2022 at 17:43  | Reason: Not specified

I had no bruising at all after surgery, only a slight redness around the areas of the 7 puncture wounds.

Ivan

I had RP one month before your husband.   It was also non nerve sparing. 

I found Dr Mulhalls book " Saving Your Sex Life,  A Guide for Men with Prostate Cancer"  useful for understanding the context for various treatments.

Personally I am using daily Sildenafil/Viagra and Caverject injections and I got these prescriptions from my consultant (using Sildenafil on days when not using Caverject).  The Sildenafil is a long shot just in case some nerves work.   I am still working on the correct dosage for the Caverject -  it performs well but with too high a dose it is painful.   In the UK you can get Invicorp which many on here say is better.  

In the book above it is suggested that blood flow to the penis is key and that the injections are much better than the pump for this.

Edited by member 13 Aug 2022 at 17:55  | Reason: Not specified

J, I looked for links to Dr M and came across the following you tube video, interesting his comments on injections being better than the pimp and the reasons why.  The video is a few years old so not sure if it is still the current thinking. The only downside is he suggests using the injections twice a week and I think most of us only get a prescription for one a week. Some other interesting points raised about having ADT. Hope your recovery continues.

https://youtu.be/4ELsojPFNV8

Thanks Chris 

Edited by member 13 Aug 2022 at 22:35  | Reason: Not specified

My cousin was widowed at the age of 52 due to an arrogant surgeon who said the cancer was gone and future monitoring was not necessary.

NICE guidance on PSA monitoring:
6 - 8 weeks post-op
next one 3 months after the post op one
at least 6 monthly for the first 2 years (in some areas, they do 6 monthly for the first 5 years)
annual for the rest of his life.

https://cks.nice.org.uk/topics/prostate-cancer/management/management/#follow-up-monitoring 

That assumes that his PSA results remain under 0.1 - if PSA is rising, tests go to 3 monthly until it is determined that it is a biochemical recurrence

Is it possible that the surgeon just meant that he won't be having any more PSA tests through the hospital and needs to arrange them with his GP? That would be common practice.

Most men are capable of penetrative sex with a vacuum pump - if they struggle, it is usually down to technique. And having no nerve bundles doesn't mean that injections will not work. Sounds like post-op erectile function is not the urologist's area of strength.

Edited by member 05 Sep 2022 at 19:54  | Reason: to activate hyperlink

DW , that doesn't sound great, how would anyone looking into your case know what is going on. Not sure where you were treated but I did go to a support group meeting in your county which was run by the urology nurses. If still active there may be a meeting in a couple of days.

Thanks Chris 

I think you're reading a bit too much into the timing of the meeting. It is more likely to be that the surgeon will have just got back from his holidays than adjuvant RT has been planned and nobody told you.

I don't know why the surgeon asked about erections. I guess they have a check list and just need to confirm everything.