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Worry about meeting the consultant on Monday

User
Posted 19 Feb 2022 at 08:38

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

User
Posted 09 Apr 2022 at 15:32
I have always found Lyn's posts to be factual, detailed, concise and helpful. She obviously knows a great deal about prostate cancer and its treatment. She is neither optimistic not pessimistic, whether replying to those who say ' Side effects? Nah - I'll be fine!' or those who rend their clothes and talk about 'going through hell'. In my opinion, and speaking as one who has been through treatment for prostate cancer, she tells it like it is. Lyn, please continue with your helpful and supportive reponses.

Hermit

User
Posted 16 Mar 2022 at 20:10

I consider myself a lucky so and so. I had my massive prostate out. PSA went from 27 to "below 0.006" I wear a Tena One 5 months on as a precaution - so what. I am more likely to sleep all night than get up. Just going onto Tadalafil to help ED and grow a new head of hair! Compared to the dark days and weeks after initial diagnosis I feel reborn.

My 80yo father-in-law found out he had it following a blood test for something else. He was seriously hacked off that we made him go to his GP - as if it was OUR fault!  He had HT and RT a couple of years back now. His PSA is stable and we spent most of today picking Cheltenham horses. 

If you are diagnosed you are better off than the 17,000 men who are unknowingly walking around with a growing cancer inside them. Decide what treatment you want, commit to it and then get on with planning the rest of your life. 

 

User
Posted 21 Feb 2022 at 22:56
Desperate wife not sure if you are more concerned about the impact on your sex life or the fact your partner has a life threatening cancer!

One thing is certain without your help and empathy your relationship isn't going to get very far.

With help and empathy anything is possible, I had nerve sparing one side only, my ex wife left me anyway. My new wife is caring, empathetic and loves sex. Those 3 qualities have worked wonders and we both have the best sex we have ever had.

User
Posted 22 Feb 2022 at 08:39

Desperate housewife 

Cancer is a massive shock. Sounds like your husband is really struggling and finding it hard to talk about it. If it doesn't feel right leaving him just now, then don't!  Perhaps you being at home for a bit to give him that extra bit of emotional support will be enough for him to bounce back. Sure he will talk when he's ready. Best wishes

 

User
Posted 25 Feb 2022 at 18:42

Originally Posted by: Online Community Member
He had the bone scan today - according to the receptionist the urologist will have the result on Monday as my husband is high priority. Is that normal or are they hiding something from us? I know we were told he is T2a M0 Gleeson 4 + 3, but would the consultant tell the truth if it is terminal or would he try and hide it until it is totally obvious? Sorry for being negative, but this whole thing is really doing my head in especially as we are not getting answers (according to the NHS website we should be able to see his biopsy and pathology report).

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

User
Posted 25 Feb 2022 at 21:31

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

User
Posted 17 Mar 2022 at 11:50

DW, in the years I've been on this forum, I've never heard of anyone coming down with heart disease or diabetes as a result of HT. Yes, they're potential side-effects, but rare ones, and you'd probably not take any drug if you worry about rare side-effects! The overwhelming majority of men tolerate HT well with side-effects in the "annoying" rather than "troublesome" category.

Everyone suffers from loss of libido while on HT, but it really is a matter of realising that it's down to the drug and not a lack of affection for the OH.

Every treatment has side-effects. Your husband really does need to decide whether he finds the incontinence of RP or the loss of libido of HT/RT less troublesome. It's a choice we've all had to make. Both options are infinitely preferable to dying from prostate cancer for most men.

Best wishes,

Chris

Edited by member 17 Mar 2022 at 14:16  | Reason: Not specified

User
Posted 23 Feb 2022 at 23:12

Originally Posted by: Online Community Member


Glad you are concerned for him, hope my previous comment didn't come over as harsh, I am a little scarred in "support from wife during prostatectomy dept" folks on here are probably fed up with me bleating on about it!!

All good now though!!

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. 

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

User
Posted 24 Feb 2022 at 10:28
Hi Lyn. Not sure I can agree with you about 'the start of a horrible time'. I found the experience of having, and being treated for, prostate cancer was certainly unpleasant at times, and worrying, but I could not say it was horrible. I was reassured by the way in which NHS staff, the consultant and the radiographers and the specialist nurses all treated it as a routine matter which they were going to put right. OK, nobody would choose to go through it, but having been diagnosed with pc, you just have to aceept that if the NHS staff tell you it will probably be cured, then it probably will. That said, my GP called me in for a chat about half-way through the treatment just to 'check how I was doing'. He told me (much to my surprise) that some men just fall apart at the mention of cancer, and that suicide is not unknown., My attitude of 'Crap happens - let's just get on with it' seems to have got me through. Talking to the group of men I met every weekday at the radio therapy sessions helped too - however bad I felt, others were in a much worse state. And also, seeing people going in for radio therapy for other (non pc) cancers, people on trolleys, people sedated, with custom-made face masks to protect parts of their head, all helped me to put my situation in perspective. Nobody would say the treatment for prostate cancer is pleasant - but I would not say it was 'horrible'.

best wishes to all,

Hermit

User
Posted 26 Feb 2022 at 12:51

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).

Dave

User
Posted 13 Mar 2022 at 11:41

I would prefer my husband to wear a pad and be here! The worst case scenario would be a permanent catheter and I know there are many men on here who have permanent catheters and get on with life. Far from ideal, but will take it over the other option of him not being here at all.

User
Posted 22 Mar 2022 at 10:00

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

User
Posted 22 Mar 2022 at 19:08

Hello again Desperate Wife...your husband's situation is almost the same as my husband....Gleason 9(5+4) T2a NO MO.....please please try and make a decision ..both RP and RT have plus and minus but,honestly,now that my husband has made a decision,we both feel some sort of calm and just look forward to 3 weeks from now,him having his op and then moving on to recovery and getting on with life, holidays and all of the plans that have been put on hold because of the diagnosis. Good luck to you both

User
Posted 09 Apr 2022 at 15:21
In terms of personality, I am actually a glass nearly full sort of person but I have been on here long enough to understand that the people who struggle most with the emotional impact of side effects and recurrence are the ones who went into their treatment ignorant of the potential ramifications or with a rose tinted lens. As example, the newish member who posted just in the last few days that he was aware of the risk of incontinence but assumed it wouldn't affect him as he is fit. I don't post the negatives because I think it will turn out badly; I am compensating for the over-optimistic posts that go "oh you will be fine, most men are." It is called realism.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Feb 2022 at 09:58
Your husband is now under the care of whichever local hospital you were referred to. Your GP will have little to do with the treatment, apart from maybe administering routine hormone injections (if that's the treatment route you go down) and taking blood samples every 6 months or so. When you meet the consultant, s/he will explain the results of the tests, tell you if it is prostate cancer or not, and if it is, expain how extensive it is and outline the treatment options available. Do not panic! The NHS treats thousands of men with prostate cancer each year. It is one of the most common forms of cancer in men. The hospital where I had my radiotherapy processes dozens of patients for r/t every day. I say 'processes', because it is absolutely routine for them. They know what they are doing!

For support and advice, you have already mentioned Prostate Cancer UK and Macmillan. Those are your main sources of support. You might also be given the number of a nurse practitioner who is part of the treatment team, and who you will be able to contact with questions. In many areas there are also local prostate cancer support groups which meet to offer help and advice. And you have already found this very useful forum! So, you are not on your own.

If caught early, prostate cancer is very treatable. I think the 2 most common treatment routes are radical prostatectomy (surgery), or hormone and radio therapy. The outcomes are about the same in either case. If the cancer is not very advanced, you might be offered 'active surveillance', which is basically watch, wait and monitor.

I hope the meeting with the consultant goes well. It might even be good news! And if not, it might well not be as bad as you fear. The important thing is to know where you stand, and what your options are. Best of luck ...

Hermit

User
Posted 22 Feb 2022 at 08:56

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

User
Posted 25 Feb 2022 at 20:05

The best thing you can do is to stay calm. Panicking doesn't help you or your husband. When my husband was diagnosed we were shocked, upset and uncertain but after tears and talking we decided to tackle the whole thing as a team effort. He was 63 and his Dad had died at 86 of prostate cancer but must have lived with it for some time in ignorance.

My husband had hormone therapy and then 37 radiotherapy sessions. I went to nearly all the sessions with him to keep him company and we met a wonderful man who made us laugh and we had a lot of fun despite the treatment. He was tired after this and did get breathless going up hills but we kept walking and gradually he recovered and we had a little time when he was ok. More hormone treatments followed before he had to have chemotherapy. 

We had almost ten years of a good life after diagnosis. You can become very inventive over sex and until strong hormone treatment reduced his libido we were ok. The loss of our sex life was very sad for us both but it didn't diminish our love for each other, in fact it grew stronger. You will have to be very strong and support your husband without smothering him. He is still the same person but will have to get used to his condition and process it all. In a way you will both be grieving for the future you thought you would have.

We had many many happy times and adventures and learned to adapt our lives around all the hospital trips and setbacks. 

Remember to keep your sense of humour and carry on doing all you can. You have to trust your doctors and ask for advice if you need it. Keep talking and loving each other and have space and time to be alone if you need it.

User
Posted 06 Mar 2022 at 09:21
For context, I was diagnosed with PC in 2015 at age 61 following a visit to my GP to discuss flow issues. She initially told me it was normal for a man of my age and I shouldn't worry. Move on a couple of years and I'm sat in front of a consultant who told me I had a slow growing cancer that wouldn't bother me for at least 10 years. Move on to January 2020 and I'm in for a non nerve sparing Radical Robotic Prostatectomy.

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.

User
Posted 21 Mar 2022 at 18:56

Not 'nurses'. I have one who contacts me routinely to (e.g.) tell me my latest PSA score. She is the one who called Christmas Eve. Not 'consultants'. I am under the care of one (named) consultant urologist, although I have been seen by others on his team. If I have a question or a problem, I call the nurse practitioner or the consultant's secretary. Both are busy people - so I just leave a message and they get back to me.  I expect that is how it will be for your husband, once he has chosen which treatment route he wants to follow. Don't start to worry about 'what if ...'. Just deal with things as they arise. And prostate cancer isn't the sort of thing which would ever lead to a 111 or 999 phone call.

Edited by member 21 Mar 2022 at 19:02  | Reason: Not specified

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 23 Feb 2022 at 10:00

DW 

I did my pelvic floor exercises for quite a few weeks before surgery, the advice seems to be three sessions a day and vary between the long hold  and short hold exercise. I probably did alot more that that. Four days after catheter removal I was 99 percent dry, so well worth doing. 

To answer your question another way in 70 -75 of cases surgery are successful.

Thanks Chris

 

User
Posted 24 Feb 2022 at 05:44
I would not leave him because he has to use a vaccum pump or anything else to get an erection, not bothered how just that he can get one because if he could not he would be very unhappy. I am glad to say we have a strong marriage. The thing I want most is that he is rid of this damn cancer and in the end can enjoy life to the fullest.
User
Posted 24 Feb 2022 at 06:23
My husband just apologiesed to me for upsetting me - I asked him when he volunteered to get this horrible disease? I told him that I am not in any way upset with him, but for him. I hope he is now ready to talk about how he really feels and gives me a chance to either help him myself and get the appropriate help.
User
Posted 24 Feb 2022 at 12:08
I meant horrible as in the process of being told you have cancer, choosing a treatment, worrying about whether it was the right choice, worrying about the potential side effects, worrying about the real side effects, spending the rest of your life wondering whether it is going to come back.

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 🀣

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

User
Posted 24 Feb 2022 at 14:08
I found the process of being diagnosed unbelievably stressful (as some regulars may recall 😁), not helped by the fact that my prostate cancer investigations also uncovered two other life-threatening conditions, but once treatment actually got underway it was all pretty straightforward. It can be a huge mental shock to be told you've got cancer (two different cancers in my case) and everyone needs to find their own coping mechanism to deal with it. You do find a way, though, because you've got to.

Cheers,

Chris

User
Posted 25 Feb 2022 at 18:42

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

User
Posted 26 Feb 2022 at 11:21
Hi Everybody, sorry for all the negative thoughts, but currently all my positive thoughts are exclusivly reserved for my husband.
User
Posted 03 Mar 2022 at 09:38

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.

Dave

User
Posted 03 Mar 2022 at 21:15
It doesn't have an absolute impact on ED - you can have full nerve sparing and never have an erection again, or partial nerve sparing and recover fully. The nerves don't just work if they are there and not work if they have been removed - during RP, the nerve bundles are bashed, bruised and burnt and for some men, the bundles basically go on strike and refuse to recover or take a long time to come back to life. My OH had partial nerve sparing and most of his recovery was between years 2 / 3. He didn't have ED beforehand though - that probably impacts more on your husband's chance of recovering EF that how many nerves are removed.

There isn't any clear evidence that partial / full nerve sparing has an impact on incontinence since that is more to do with the removal of the first urinary sphincter and possible relocation of the second, plus any inadvertent damage to the urethra.

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

User
Posted 06 Mar 2022 at 18:43

Originally Posted by: Online Community Member

It still has not sunk in what he has to face and he is still hoping that he can get away without any treatment.  I do not know how to cope with this.  



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

 

User
Posted 12 Mar 2022 at 11:19

I am 64 and had surgery on 23/12 and although I was 30% incontinent for 4/5 weeks after surgery and was wearing a Tena  No.2 pad every day, it improved after then and for the last 2 weeks or so I have been virtually continent (99.99%). I only have a slight leak when I lift something very heavy.

Two people I know who had surgery in 2010 were both fully continent  within 6 months of surgery and although one , age 80, now has a little leakage that is probably more down to his age rather than because of the surgery. A number of people on this board who have undergone surgery have also posted that after a few weeks or months they are back to full continence.

 

Ivan

User
Posted 19 Mar 2022 at 10:22

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".

Dave

User
Posted 21 Mar 2022 at 11:48

So who should we complain to - God, for allowing cancer? The government? The NHS? Drugs companies? The hospital providing treatment? The consultant? The GP?

And what should we complain about? The fact that radical prostatectomy (which counts as major surgery, keyhole or not) has certain unpleasant and unwanted side effects? That hormone therapy using powerful drugs has side effects? All drugs have side effects. That electron beam therapy can cause some unpleasant after-effects? Hitting a part of the body repeatedly with high-energy tightly focused  X rays will do that!

This forum exists to provide information, advice  and support from those suffering from prostate cancer, or being investigated for it, and for their relatives. How does your most recent post do that? 

Hermit.

User
Posted 21 Mar 2022 at 12:03

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 πŸ‘

User
Posted 29 Mar 2022 at 17:54
Nobody likes the side-effects of cancer treatment, but you put up with it to get the cancer sorted, and speaking from personal experience, the side-effects of HT/RT aren't that awful. I'd honestly suggest you look at long-term outcomes, and not the minor inconvenience of the side-effects of treatment and recovery.

Best wishes,

Chris

User
Posted 08 Apr 2022 at 21:59

Originally Posted by: Online Community Member
And reading the experience of men who have recently undergone surgery on this forum most, like me, have have had no major problems following the removal of their prostate.

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

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

User
Posted 08 Apr 2022 at 21:59

Hi DW, yes it’s tough as the spouse/wife/partner. I’m not going to lie. Really tough. There are no guarantees it won’t come back, but my motto as a cancer survivor has always been to take everything on offer (once you have researched and made an informed decision). There will never then be the “if only I had” scenario. The specialists looking after your husband are just that, specialists in their field. Weigh up all the options and go with it. You can go crazy with stats, concentrate on the outcome. You have to put your faith in their expertise. I can only tell you what we have gone through. Of course, if your husband opts for treatment rather than surgery none of what I’m about to say will apply! My oh opted for surgery, he only had 2 options to chose from; the other being ht and rt. The week leading up to surgery was difficult emotionally. My oh was definitely not looking forward to radical surgery (who would be) and was concerned about incontinence. However, as a couple we knew that if he was fully incontinent that was something we would deal with as opposed to not removing the prostate. The first 7-10 days post surgery were tough whilst the catheter was in (lots of people on here told me it would be). Lack of sleep, OH not getting comfy and not being able to bend etc. However, he still did gentle walks daily, pottered around and slept when he needed to. When the catheter was removed it was a different story. Psychologically it was major for him. He did get a Uti from catheter, treated with antibox. He has been dry day and night from when the catheter was removed. we are surprised, stunned and extremely pleased. He was very disciplined with his exercises before surgery and has continued since catheter removal. The exercises are so important. Of course it’s very early days for us, we are not counting our chickens just yet! We don’t know how successful the surgery has been and if more treatment will be required. We are only 17 days post surgery. He is doing extremely well and has exceeded both our expectations. Sounds like you have had a positive discussion with an understanding oncologist, can you do the same with a surgeon to discuss RP? Focus on the positives, you have a selection of treatment options available which in itself is a huge positive. The cancer is treatable. You will both get through this. X

Edited by member 08 Apr 2022 at 22:06  | Reason: Not specified

User
Posted 09 Apr 2022 at 09:59

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

User
Posted 09 Apr 2022 at 15:37

You are entitled to your opinion, Hermit, but reading a lot and putting it into acceptable practice is not the same thing. Yes, some of Lyn's  responses are fine but her approach has driven at least one man from this forum.

User
Posted 09 Apr 2022 at 16:25
Everyone will get some of the side-effects, but in my personal opinion they are a small price to pay for getting the cancer sorted, particularly if, as you say, he's only going to be on HT for 6 months. That's a very short time, and most of the side-effects are temporary.

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 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 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 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

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 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 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 20 May 2022 at 11:33

DW, don't be surprised if he bypasses a little urine and a trace of blood out of the the penis. It often happened to me when passing a motion, a bit of tissue under the penis while sat on the toilet helps save wet underwear.  I was told Rosé colour in the bag should be okay but red wine colour needs attention. Don't forget to adk for some instilagel in case the catheter makes the penis sore. 

 

Get a couple of extra thigh straps, use one around your ankle to secure the night bag tube when in bed, it saves putting any strain on the bag joint. Make sure the catheter joints are tight, and make sure the leg bag tap is shut before disconnecting the night bag and don't forget to open the leg bag tap when you attach the night bag.

 

The extra thigh straps are useful when showering. I empty my bag a let it hang on the thigh strap ,when i finish showering I put a dry strap on the other leg and transfer the catheter and bag to the dry strap. Some hospitals use adhesive catheter fixation devices so the strap idea would not apply , the statlock adhesive device id waterproof, they should be changed after 7 days but will last for 14 days.

 

Make sure you empty your day bag before it gets more than half full. 

Thanks Chris

Edited by member 20 May 2022 at 11:40  | Reason: Not specified

User
Posted 18 Jun 2022 at 22:36

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.

User
Posted 19 Jun 2022 at 09:45

After my catheter was removed it took about 8 weeks before my daily incontinence greatly improved. As mentioned by Chris, going for a long walk resulted in me having virtually no bladder control at all.Each leg forward movement resulted in a leak and meant that when I returned home my pad was soaking wet and my bladder probably completely empty. And as mentioned by Lyn, and as advised by the specialist nurse assigned to me, the brain needs to relearn how to control the bladder following the damage to that area. It is frustrating, but for me and for the people I personally  know that have undergone surgery, virtually full bladder control does eventually return. In my case it was an almost overnight experience after about 10 or so weeks when my continence improved to 99 % plus . I only leak a little now when I am lifting a very heavy object.

 

Ivan

User
Posted 19 Feb 2022 at 08:38

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

User
Posted 20 Feb 2022 at 11:18

This depends heavily on diagnosis, so we're jumping the gun a bit here.

If he needs prostatectomy or radiotherapy, that's likely to be over by a years time, and possibly very much sooner.

A big factor will be insurance cover, and that will depend on the state of the disease at that point. If he's a year or more after treatment, stable, and not expecting any more, it would be a lot less excessive than if he's been more recently treated or more treatment is required.

User
Posted 20 Feb 2022 at 12:18
Regarding your question about GPs and support services you must be having a laugh. This website is as good as it gets and is probably world class in the advice given by the various lay folks on here.

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!

User
Posted 21 Feb 2022 at 21:34

Quote:
 bear in mind you don't need an erection for vaginal intercourse. 

Thanks Chris

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.

 

Barry
User
Posted 22 Feb 2022 at 11:35
Hi DW

It sounds like you have decided to go down the RP route. Has the surgeon indicated what sort of surgery he is planning? Robotic/laparoscopic/open? If its open surgery then he may need a wee bit of support for a few days. For the other two, as others have already said then no real "nursing" is needed post op.

User
Posted 22 Feb 2022 at 11:37

Originally Posted by: Online Community Member
Do I have to use the hammer method to get him to talk to me again? Before yesterday I actually had to threaten to divorce him for him to talk to me about is feelings and anxieties and if he does not tell me how can I help him?

DW , sometimes we men need a good kick up the backside πŸ˜€. 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

 

 

User
Posted 23 Feb 2022 at 09:17

"Just one negative question - does anybody know how often surgery fails and radiotherapy is required? And how often that then fails and HIFU rescue (1 NHS consultant in southern England as per Prost8 website) is required?"

About 25-30% of men go on to have a biochemical recurrence after surgery. If the primary treatment fails, the chance of ever achieving full remission is significantly lower regardless of whether you have surgery followed by RT or RT followed by surgery. The trouble with surgery after RT is that it is technically difficult, unlikely to be nerve-sparing and the risk of incontinence and ED is very high. 

HIFU isn't usually done as a salvage treatment after failed surgery and failed salvage RT.

Edited by member 23 Feb 2022 at 23:15  | Reason: Italics

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

User
Posted 23 Feb 2022 at 18:41

Mine took 3 days πŸ‘

User
Posted 25 Feb 2022 at 18:27
For goodness sake, you are sounding a little paranoid now. Consultants don't lie to people; if your husband's bone scan finds something they'll tell him. His diagnosis is that of a pretty innocuous case of prostate cancer. What on EARTH makes you think that there's some sort of sinister conspiracy to hide the truth from you?

TRUST your doctors - they're the people who are going to be treating your husband, and from the information you've provided the treatment will be with curative intent.

Best wishes,

Chris

User
Posted 26 Feb 2022 at 07:28
Hi Everyone, thank you for all your support. I helps a lot. Especially thank you to LynEyre for the explaination. That has helped a lot. Why cannot the hospital give us a timeline for when thing should happen? Would reduce anxiety.
User
Posted 26 Feb 2022 at 12:26

DW, no need for apologies, we have probably all experiened the frustration of not getting answers or results.  I expect lots of things happen that can delay getting information to the patient. I suspect many consultants have a weekly routine, my consultant does MDT meetings on a Friday, if the MDT team have not got all the info I suspect it could delay making recommendations and  getting the the information to you. 

No doubt the disruption of covid is not helping.

Thanks Chris

User
Posted 28 Feb 2022 at 13:09

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.

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

User
Posted 01 Mar 2022 at 22:16

I just read your thread and wanted to say I hope you are OK. It’s an absolute blow to your plans and life so it’s perfectly understandable to feel all the emotions you express.

If it would be possible I’d suggest you get a second opinion maybe from a radiotherapy specialist as we always felt better for the ability to chat to a different expert and if you do a private consult it can happen quickly and efficiently and you can explain you’d be using the NHS for treatment.

Then a lunch somewhere lovely to discuss all you’ve heard. Good food makes even the worst feel better.

it doesn’t look like anyone will be doing the the trans Siberian railway is the near future but you can replan. Maybe a Norwegian cruise from and back to Southampton to keep things simple. Book flexible so you can go when ready and talk to your cruise line about what’s going on. Insurance can be obtained ( you may have to exclude prostate cancer but unlikely to cause major issues in a short time once you are through initial treatment.

it’s so so stressful I feel your pain and understand completely but may be worth a second opinion not to expect a miracle but just an opportunity to talk it all over with a different voice and for you two to have a meal after, talk, finalise a plan and breathe. 

Just a thought of course

User
Posted 02 Mar 2022 at 10:23
DW, I don't know if this will help, maybe not. Please accept my apologies in advance if so.

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.

User
Posted 03 Mar 2022 at 19:03
We were told my husband can only have nerve sparing surgery on one side - has anybody got any experience with that as in what effect did this have on incontinence and ED? Thank you
User
Posted 04 Mar 2022 at 17:52
No
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Mar 2022 at 18:20
If you have online access to your medical records (and if not, you can request it) you can see for yourself exactly what information your GP has. I think you'll find it's exactly the same as the information that you have yourself!

Best wishes,

Chris

User
Posted 04 Mar 2022 at 19:35

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. 

User
Posted 06 Mar 2022 at 10:39
With a T4+3 diagnosis AS is unlikely to be advisable, given that the dominant type of cancer cells present are quite aggressive.

We've discussed focal treatments such as Nanoknife earlier in this thread.

There's really nothing brave about having RP or RT. You get through it because there's really no option; they're the treatments which have the highest rates of long-term success. I didn't personally find RT to be more than mildly unpleasant and certainly didn't feel brave having it πŸ™‚.

Cheers,

Chris

User
Posted 06 Mar 2022 at 11:09

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.

 

 

Dave

User
Posted 06 Mar 2022 at 18:19
I think you will probably survive best by recognising that this is his cancer, not yours. Who apart from you is to say that he needs to do this or face up to that? Maybe his way is the best way - my OH has managed very well for 12 years by only hearing what he needs to, making a decision based on what he is told at the appointment and then instantly forgetting any of the bad news.

Let him do this at his pace rather than yours.

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

User
Posted 06 Mar 2022 at 18:27

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 πŸ‘

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

User
Posted 07 Mar 2022 at 15:50

Originally Posted by: Online Community Member
Seems that if he has surgery then for 3 month after he is on Viagra for penile rehab. Have not seen that in any of the posts.

The other name for viagra is sildenafil which you have probably seen. Most men have either this or tadalafil.

Glad the bone scan was all clear πŸ‘πŸ½

User
Posted 07 Mar 2022 at 15:57

Originally Posted by: Online Community Member
sorry, one other question. The surgeon mentioned that my husbands prostate is quite small. Is that good or bad?

 

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

Cheers,

Chris

 

User
Posted 08 Mar 2022 at 08:16
To the black spawn of hell that calls itself prostate cancer

the man you invaded has called the lancer

the robot, Da Vinci by name

all rejoice in his fame

is called to end your existence for now and ever

may you rot in hell forever

User
Posted 08 Mar 2022 at 18:56
About a third of men who have an RP go on to have salvage radiotherapy. It's primarily an issue for those who have either aggressive cancer or cancer which is close to breaking out of the prostate, neither of which applies to your husband.

Cheers,

Chris

User
Posted 09 Mar 2022 at 08:03
A number of men on here have said that they've been told by their surgeon that using one pad a day is regarded as continent, so it seems to be a common definition.

It's one reason I preferred the HT/RT route, which doesn't commonly result in incontinence.

Chris

User
Posted 12 Mar 2022 at 09:32

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

User
Posted 12 Mar 2022 at 10:35

Hi DW,

I think the following have been ruled out already: Active Surveillance, HIFU, Laser Ablation. I'm only mentioning them to make sure you have a full list and everything has been considered.

In your list you have mentioned RT for clarity you should call this External Beam RT or EBRT: to distinguish it from Brachy which are still forms of RT. You should also add HT to the list, because it could be included with any of the other treatments.

As your husband already has ED, I think you will have to accept this won't be getting better on its  own and he might even have to look at penile implants if he wants to. Of course telling your husband that you want to use him like a sex toy may cause issues in your relationship.

I think the definition of continent as using one or less pads per day is useless for someone who wants a normal life. Because the threshold had been set so low, any official statistics are meaningless to anyone who want to remain continent by the lay man's definition i.e. no leaks.

I think RP has the highest risk of incontinence and if you get it it would ruin your life, but it is probably not as common as this forum would lead you to believe. I think the chances of incontinence from any of the RT treatments is vanishingly small.

Dave

User
Posted 14 Mar 2022 at 13:03
You can easily use the 'search' facility on this site to find ansers to questions like this. For example -

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

Hermit

User
Posted 14 Mar 2022 at 13:06
"In a study by another highly regarded open surgeon, Dr. William Catalona, the outcomes of 1,870 consecutive open RRPs (mean patient age of 63) were analyzed (Catalona 1999). Men were considered continent if they β€œdid not require protection to keep outer garments dry.” Overall, of 1,325 men who had >18 month follow-up, 92% recovered urinary continence. This recovery varied slightly by age such that continence rates for men in their 40s, 50s, 60s, and 70s were 92%, 97%, 92%, and 87%, respectively. A recent notable study by Eastham and Scardino analyzed outcomes of 1,577 men after open RP (Eastham 2008). Continence was assessed by patient reported questionnaire or physician interview and defined as answering β€œno” to the question, β€œDo you wear any protective material because you leak urine?” Among these patients (mean age 58 years), 79% were continent at 12 months. Litwin et al. investigated the longitudinal recovery of quality of life (back to preoperative baseline) after open RRP in 247 men followed for up to 4 years after surgery (Litwin 2001). At 3, 12, and 30 months after surgery, 21%, 56%, and 63% of men recovered to baseline function and overall about 80% recovered to baseline urinary bother at about 8 months."

So the vast majority of men regain continence within a year.

Cheers,

Chris

User
Posted 14 Mar 2022 at 16:27

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.

User
Posted 16 Mar 2022 at 19:28
DW, I went down the HT/RT route and found it all very tolerable. Three years after RT finished now and all's well. I'd be more than happy to have a chat to your husband about it on the phone if he'd like to do so. Drop me a PM if you're interested.

Cheers,

Chris

User
Posted 17 Mar 2022 at 14:03

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 πŸ€”

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

User
Posted 17 Mar 2022 at 18:45

I went the radiotherapy hormone therapy route so far so good PSA 0.01from 24.9 1year on had a few problems on the way loose bowels for first 6months now ok  like I said few aches and pains but 60years old still doing a manual job but overall not too bad πŸ‘

User
Posted 17 Mar 2022 at 19:22

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

 

User
Posted 21 Mar 2022 at 08:32
I have read in one of the threats that the gent in question recons the current available treatments are bearable.

I know that is a very English reaction, but it is the wrong reaction. Why would anybody want to make improvements to the available treatments if the patients are happy with the current standard?

There is only one way to get improvements, complain, complain and complain again. And then complain some more.

Think about this - would you be happy for your son/grandson to go through the current available treatments?

User
Posted 21 Mar 2022 at 09:50

Originally Posted by: Online Community Member
Think about this - would you be happy for your son/grandson to go through the current available treatments?


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

 

User
Posted 21 Mar 2022 at 13:04

Originally Posted by: Online Community Member

Hi JaneyP, how can the medical staff know if there is any problem if we/you do not let them know?  They are doing their best, but we need to help them by giving them all the information

You are at the very start of your journey but just to reassure you, when men see their urologist, oncologist or clinical nurse specialist (if they have one), most go through the PCa quality of life questionnaire (FACT-P) on a regular basis. That is how BAUS is able to publish the data on likelihood of side effects from the different treatments. 

https://bmjopen.bmj.com/content/6/12/e013555

 

https://www.england.nhs.uk/wp-content/uploads/2021/11/Cancer-quality-of-life-survey-summary-report-first-data-release.pdf 

Edited by member 21 Mar 2022 at 13:10  | Reason: to activate hyperlinks

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

User
Posted 21 Mar 2022 at 18:47
You seem very angry; perhaps a bit understandable but isn't going to help in the medium to long term. The FACT-P questionnaire is used with men who have had treatment, obviously that doesn't apply to your OH yet.

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.

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

User
Posted 21 Mar 2022 at 22:34
I have an absolutely brilliant cancer nurse who I can leave a message for at any time and she calls me back within a few hours. Really couldn't have asked for better treatment or kinder or more considerate medical staff. Previous posters are spot on about communication. When I was having my RT the nurses asked me every day how I was feeling and if there was anything I needed to talk about.

I honestly would wait until husband starts whatever treatment it is he decides on before forming judgments about quality of care. I am 100% satisfied with the care I received.

Cheers,

Chris

User
Posted 21 Mar 2022 at 23:12

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.

Dave

User
Posted 08 Apr 2022 at 18:02

We are all different but I underwent surgery and all that involved was going in one day and coming out the next . I did have a catheter in for 7 days but that was just a temporary inconvenience. Three people I personally know  had surgery over 12 years ago and have had no problems since. That said, one, who is now 80, now has a slight leakage but that is probably more to do with his age rather than the fact he underwent surgery. And reading the experience of men who have recently undergone surgery  on this forum most, like me, have have had no major problems following the removal of their prostate. Your husbands cancer grading certainly makes surgery an effective option.

 

Ivan

User
Posted 09 Apr 2022 at 07:23

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.

User
Posted 09 Apr 2022 at 08:47

Originally Posted by: Online Community Member


Question - has anybody been on Bicalutamide for 2 * 3 month sessions, what was your experience?

The only other option is RP - we are now trying to work out which treatment has the least effect on OH's quality of life during and after the treatment.

Before anybody says anything - yes, I know he can cope. But I have to watch him go through hell - that is how all these treatments look to me and after all that there is no guarantee that that bloody cancer will not come back.

I was on bicalutimide for six months prior to RT and a year after it as a primary therapy. It really was not "hell"; as I've commented previously, I found the whole treatment process to be entirely tolerable. 

There are never any guarantees with any treatment that cancer won't return, but the success rates with both RP and RT are very good. 

My previous offer to have a chat with your husband on the phone about what RT/HT treatment is actually like still stands if it would be helpful to him.

Best wishes,

Chris

 

User
Posted 09 Apr 2022 at 08:56

Originally Posted by: Online Community Member

 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.  



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

 

User
Posted 16 Apr 2022 at 11:37

Where there is time to consider and this seems one of them, it is worth considering all options. It is stated that at present patient favours Nanoknife but it is not clear whether he is suitable for this comparatively innovative form of treatment. Just in case he is not found suitable, it would be sensible to have a second choice from those he could have. My understanding is that Brachytherapy with seeds is generally the most successful overall form of RT and more so where augmented by some IMRT External Beam. So I would chose between this and RP.
Here you can see how over 100,000 men have responded to treatment in various studies with the results formed into an elipse You just need to start by entering your risk group. Worth fully exploring the site :- https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/?gclid=Cj0KCQjw0umSBhDrARIsAH7FCodZMqS7xzo0yXDW4-qioVlLFaEZRpbvg3BVaniDHCzqIqZOpREbJ8gaAiXTEALw_wcB

 

It should be remembered that the worst cases for what may generally be a more successful treatment are sometime bettered by the best cases of what is generally a less successful group.

Edited by member 16 Apr 2022 at 11:38  | Reason: to highlight link

Barry
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 20 Apr 2022 at 07:09

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

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 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 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 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 06:49
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 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 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 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!

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 12:55

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 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 07:17
It doesn't really take all day. Removing the catheter takes about 2 seconds 😁. You then, though, have to drink lots of water and show that you're able to pass water (three times in my case) before they let you go. It's that part of the process that tends to take several hours.

Glad to hear that the surgery went well.

All the best,

Chris

User
Posted 20 May 2022 at 08:27

DW, hope all goes well with the recovery, make sure he takes it easy but keeps mobile. It is good to avoid getting constipation and no straining to pass that first motion.

I have had around 12 trial without catheter and never failed.  Mine never took longer than five hours, usually they have been around three hours. To speed things up I drink plenty of water before getting to the hospital, I find that if i am well hydrated before getting to the hospital the water they give me to drink at the TWOC passes through me far quicker. It is better to leak a bit than have a catheter put back in because you failed the TWOC.

Make sure you have some pads, the hospital will normally give you some, but as a work colleague used to say better to be looking at some than looking for some. I took a towel and cover for the car seat in case of a "major" leak but it never happened. I also had a urine bottle in the car in case of an emergency. The towel is useful if stuck in a traffic jam with a coachload of people at the side of youπŸ˜€. A spare pair of trousers and pants, again never needed. Elasticated waist trousers make it very easy to change the pad in a hurry. 

Hope all goes well.

Thanks Chris

 

Edited by member 20 May 2022 at 09:24  | Reason: Spelling

User
Posted 20 May 2022 at 16:13

Originally Posted by: Online Community Member
Mine took over five hours. It was nerve sparing one side

Cheers
Bill

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

User
Posted 20 May 2022 at 18:32

Glad the op is all over. Not too bad 3 months from diagnosis to treatment. I assume TWOC is about two weeks time. A catheter isn't much fun, though I found it quite useful when at the pub. Hope all goes well.

Dave

User
Posted 20 May 2022 at 23:15
Glad the op is over. Small steps now and wishing you both well x
User
Posted 21 May 2022 at 14:46

My husband stayed in an extra day but it actually worked out well as he was a bit further on with recovery when he came home, so I didn’t have to worry quite as much. If your husband comes home with a temperature surely that would cause concern for you both, he’ll definitely be better where they can look after him. I know it’s really difficult if they won’t let you see him though. We just had to video call and on one occasion I walked to the hospital and waved to him at the window while speaking on the phone ❀️ Hope he’s home and well soon, best of luck with recovery 

User
Posted 24 May 2022 at 16:28
I hope someone is looking after you too DW xx sending love
User
Posted 24 May 2022 at 20:02
I'm not sure why an extra day in hospital would be a nightmare? Surely it's better to make sure that any potential infection is dealt with before he's discharged, isn't it? I quite enjoyed being in hospital, strange though it may sound!

Hope things are better now?

All the best,

Chris

User
Posted 18 Jun 2022 at 19:21
He needs to be patient - there isn’t any magic thing that will speed up recovery. If he is dry at night, there is no mechanical damage so it is just about his brain relearning bladder control.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 12 Jul 2022 at 21:02

DW always worth asking questions to put your mind at rest.  I belong to a PC Facebook site and a woman has asked almost identical questions about a bruise from the armpit to hip. I did find a reference to bruising appearing remote from the surgery site, but worth asking the surgeon.

Hope the histology is good.

Thanks Chris 

User
Posted 13 Jul 2022 at 08:55

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

 

Ivan

User
Posted 19 Jul 2022 at 12:18

DW, I was supposedly non nerve sparring, but not long after surgery I did get some stirrings in the penis. I was reminded on here that if all the nerves had truly gone then an erection was impossible without a pump or putting something into penis . My surgeon suggested that there were a network of nerves in the area and something could be getting through. 

Get the pump, tablets, creams , injections and anything that may be on offer. My ED guy is also a surgeon and a brilliant guy. I was offered, medication because of the stirrings, the pump and injections at my first appointment. I opted for muse pellets instead of injections. The muse pellets is a cream that you put down the eye of the penis with a thin plastic applicator. It took me five years to move on to injections, in hindsight a mistake.

I don't think I will ever get an unaided erection, but eight years on I still get the odd semi erection. You don't need an erection for vaginal intercourse, look up flaccid intercourse or flaccid insertion. We have a very fulfilling love life , think outside the box and above all have fun.

Good news on the margins, hope all goes well for you both.

Thanks Chris 

 

https://community.prostatecanceruk.org/posts/t10993-Erecting-the-Erection---Medication

Lyn also did a thread on sexual recovery but I can't find it.

 

 

Edited by member 19 Jul 2022 at 12:24  | Reason: Not specified

User
Posted 13 Aug 2022 at 17:53

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

User
Posted 13 Aug 2022 at 19:00

The beauty of the pump is that it stretches the tissue and keeps it elastic and costs nothing to you medicine wise. The side effects of viagra and Cialis can be unpleasant. You’re correct in that it doesn’t cause blood flow as such , but it does maintain healthy elastic tissue. Way more than injections as they would have to be so more frequent.
I tried it all literally. Still use Cialis 7 yrs on though incurable. Still wake up with a semi which means it’s working stimulating blood flow to extremities. Still use pump 3 times per week whilst shaving. He still looks great and can be relied upon despite 20 months of HT which is a fine result compared to most men on HT.

Edited by member 13 Aug 2022 at 19:01  | Reason: Not specified

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User
Posted 19 Feb 2022 at 09:58
Your husband is now under the care of whichever local hospital you were referred to. Your GP will have little to do with the treatment, apart from maybe administering routine hormone injections (if that's the treatment route you go down) and taking blood samples every 6 months or so. When you meet the consultant, s/he will explain the results of the tests, tell you if it is prostate cancer or not, and if it is, expain how extensive it is and outline the treatment options available. Do not panic! The NHS treats thousands of men with prostate cancer each year. It is one of the most common forms of cancer in men. The hospital where I had my radiotherapy processes dozens of patients for r/t every day. I say 'processes', because it is absolutely routine for them. They know what they are doing!

For support and advice, you have already mentioned Prostate Cancer UK and Macmillan. Those are your main sources of support. You might also be given the number of a nurse practitioner who is part of the treatment team, and who you will be able to contact with questions. In many areas there are also local prostate cancer support groups which meet to offer help and advice. And you have already found this very useful forum! So, you are not on your own.

If caught early, prostate cancer is very treatable. I think the 2 most common treatment routes are radical prostatectomy (surgery), or hormone and radio therapy. The outcomes are about the same in either case. If the cancer is not very advanced, you might be offered 'active surveillance', which is basically watch, wait and monitor.

I hope the meeting with the consultant goes well. It might even be good news! And if not, it might well not be as bad as you fear. The important thing is to know where you stand, and what your options are. Best of luck ...

Hermit

User
Posted 19 Feb 2022 at 10:15
As Hermit has said, the GP doesn't really have a role in this, at the moment they will only have the same information as you and in the future, their job is to prescribe any medication the consultant recommends and do any routine PSA testing that is needed.

The consultant's role is to gather all your diagnostic results and, if cancer is found, discuss them with the multi-disciplinary team at the hospital to agree suitable treatment options. So it is perfectly normal not to have any medical support until you have an actual diagnosis - counselling is often provided by charities such as Macmillan or your nearest Maggie's centre but you need to self-refer.

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

User
Posted 19 Feb 2022 at 10:17
You haven't said - do you know any of the results? PSA reading? Whether the MRI scan showed any suspicious areas?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Feb 2022 at 10:18

DW, I went to my post biopsy meeting on my own with the idea in my head that I was going to get the all clear. My consultant/ surgeon was very matter of fact and direct but in a very nice way. The consultantation was quite short but it was followed by a much longer meeting with a urology oncology nurse who gave me lots of time and info. Take a note pad to jot down notes, some consultants will even let you record the meeting.

Over the years those nurses have been brilliant and always return my calls and sometimes have helped sqeeze me into clinics if needed. I know other members who have never heard from thier support nurses.

Hope all goes as well as can be expected. 

Thanks Chris

User
Posted 19 Feb 2022 at 11:24

Hi, so far we know that his PSA is 8, Pierad 4 and according to the MRI scan the lymphnodes are clear.  His biggest worry is being impotent so we have been looking at other treatment options (Nano knife at either the Vitus klinik in Germany or HIFU as there are 6 NHS hospitals in Southern England that offer this on the NHS.  According to the NHS website the consultant is supposed to tell us also about other treatments available.  Wonder if he will do so, otherwise we will ask

User
Posted 19 Feb 2022 at 11:58
The consultant will tell you what treatments the multi-disciplinary team believe will be suitable. The multi-disciplinary team includes oncologists as well as urologists.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Feb 2022 at 14:24

There isn't much you can do until you hear exactly what the diagnosis is, and what treatments are offered, if cancer is diagnosed at all.

Unless you are being diagnosed at a hospital which offers focal treatments (HIFU, Cryotherapy, Nanoknife), you are unlikely to be offered them. Do ask about your suitability for them, but bare in mind the consultants there won't be expert and might even be against focal treatments on principle, but it's still worth asking. Based on what you know so far, it doesn't sound like a high risk cancer, so you should have plenty of time to go away and think things through and to get more information.

If you live in England, you can ask to be referred to any NHS hospital in England for treatment. UCLH has the largest focal therapy department in the world (according to them, at least) and offer all the treatments, so that might be an option, where they can discuss the most appropriate one if you're suitable. There are other focal therapy deparments too, and it's worth going somewhere which does more than one type so they can suggest which is better for your case.

In terms of concern about impotence, do tell the consultant, because they need to know what your preferences and concerns are, and too few patients say so (and too few clinicians ask). If you are offered a prostatectomy, you will certainly want to ask about the likelihood of nerve sparing surgery, and Neurosafe. Radiotherapy is usually less likely to impact erections. Focal therapies vary enormously depending which one and where the cancer is. If it's near the nerves, they will impact it, and less likely to the further away - you would discuss this with the focal therapy consultant. No treatment is completely safe from this risk.

I advise patients in preparing for a consultation to leave a pad and pen out beforehand, and write down any question which springs into your mind. I mentioned some here (nerve sparing and Neurosafe, suitability for focal treatments, and note to say erectile function is important to you). Take the paper and pen with you to the consultation, so you can ask the questions and note the answers.

Don't forget you can ask us here anything - we're all happy to share our experiences.

Wishing you the best for Monday, and let us know how it goes.

Edited by member 19 Feb 2022 at 14:35  | Reason: Not specified

User
Posted 19 Feb 2022 at 14:48
Focal treatments are generally only suitable when there's a small, localised tumour, and also tend not to be a permanent solution - they need repeating every few years, which can be very expensive given that such treatments will usually not be available on the NHS.

Best wishes,

Chris

User
Posted 20 Feb 2022 at 11:03
Thank you all for your help and assistance - I have one final question regarding the future. As my husband is 67, otherwise healthy (no medications of any kind) and active (regular Gym goer) and I am retiring in 2 years time we had planned to take a train to St.Petersburg and then catch the Trans Siberian Railway to go to the end, get on a cruise ship to Brisbane to visit my brother, see Australia and come back. If my husband has any treatment do we have to shelve our plans (the other one is to walk the Inca Trail) or is there a possibility that he might have recovered enough to enjoy the experience?
User
Posted 20 Feb 2022 at 11:18

This depends heavily on diagnosis, so we're jumping the gun a bit here.

If he needs prostatectomy or radiotherapy, that's likely to be over by a years time, and possibly very much sooner.

A big factor will be insurance cover, and that will depend on the state of the disease at that point. If he's a year or more after treatment, stable, and not expecting any more, it would be a lot less excessive than if he's been more recently treated or more treatment is required.

User
Posted 20 Feb 2022 at 12:18
Regarding your question about GPs and support services you must be having a laugh. This website is as good as it gets and is probably world class in the advice given by the various lay folks on here.

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!

User
Posted 21 Feb 2022 at 16:26
update on the meeting with the consultant - it is T2A M0, Gleeson 4 + 3. Waiting for the bone scan and then the meeting with the surgeon and the oncologist. Advised to have surgery as if the cancer comes back can still have radiotherapy, but if having radiotherapy now surgery in future would be a lot more difficult due to scarring. They can only save the nerves on one side as the cancer is to close to the egde on the other side. Good bye sex, hello involuntary celibacy. Cancer I hate you!
User
Posted 21 Feb 2022 at 16:34
That's a reasonably good diagnosis. Why do you say "goodbye sex"? No reason for "goodbye" if nerves are preserved.

All the best,

Chris

User
Posted 21 Feb 2022 at 16:57
nerves can only preserved on 1 side and chance exist hat they could be damaged - the way my luck is going currently that is what is going to happen. Yes, the surgeons at the hospital are supposed to be very experienced, but he is 67 and this all started when he asked our GP for assistance with ED. So he already has got 2 strikes against him even before the start. Yes, there are various treatments - do they work on older men? I know us women are just supposed to grin and bear it and suffer in silence, but I have always been a rebel and even though I am 64 that has not changed.

User
Posted 21 Feb 2022 at 20:35

DW. I was supposedly non nerve sparring but I did make a partial recovery. I am now 70 and the pump, muse and injections all work. Make recovery fun, and also bear in mind you don't need an erection for vaginal intercourse. 

Hope the scans are all okay and that your choice of treatment works well.

Thanks Chris

User
Posted 21 Feb 2022 at 21:34

Quote:
 bear in mind you don't need an erection for vaginal intercourse. 

Thanks Chris

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.

 

Barry
User
Posted 21 Feb 2022 at 22:56
Desperate wife not sure if you are more concerned about the impact on your sex life or the fact your partner has a life threatening cancer!

One thing is certain without your help and empathy your relationship isn't going to get very far.

With help and empathy anything is possible, I had nerve sparing one side only, my ex wife left me anyway. My new wife is caring, empathetic and loves sex. Those 3 qualities have worked wonders and we both have the best sex we have ever had.

User
Posted 22 Feb 2022 at 06:06
Dear Francij1, I am more concerned about my husband and his mental health. Sex is very important to him and he is feeling scared. I am trying to get as much information as possible so I can reassure him.

I have some other questions and I hope you can give me the benefit of your experience. When we talked to the specialist nurse yesterday I asked how much holiday I should book to look after my husband after the OP and how long I should work from home and was told I do not need to book any holidays and do not need to work from home. That does not feel right to me. What is your experience?

I also asked about a visit from the district nurse to make sure he is recovering well. Again I was told he would not need a visit from the disctrict nurse. I am not happy about that answer either. I am going to contact the Prostate UK nurses and ask for a recommendation for a private nurse to visit just for my peace of mind.

User
Posted 22 Feb 2022 at 06:52

The advice you were given is correct. Someone who's had a RP doesn't need to be "looked after"; lots of single men have the procedure, go home, and manage absolutely fine on their own. You certainly don't need a private nurse!

I had a nephrectomy (kidney removal) operation in late 2018 after my prostate cancer MRI scans picked up a kidney tumour. This is a very similar operation to an RP in terms of recovery. I was in hospital for three days, got a taxi home (I live alone) and managed absolutely fine on my own. Friends in my village kindly did some food shopping for me, but that was the limit of the assistance I received. You honestly do not need "nursing", particularly given the fact that you say that your husband is healthy and active  

Best wishes,

Chris

Edited by member 22 Feb 2022 at 06:55  | Reason: Not specified

User
Posted 22 Feb 2022 at 08:22
still does not feel right leaving him alone at home for 9 hours while I am at work especially has he has to inject himself with bloodthinners for 4 weeks. I would not be able to concentrate at all. I would worry about his mental state - since yesterday he again has clammed up about how he is feeling and all I get is "I am fine". Do I have to use the hammer method to get him to talk to me again? Before yesterday I actually had to threaten to divorce him for him to talk to me about is feelings and anxieties and if he does not tell me how can I help him?

User
Posted 22 Feb 2022 at 08:39

Desperate housewife 

Cancer is a massive shock. Sounds like your husband is really struggling and finding it hard to talk about it. If it doesn't feel right leaving him just now, then don't!  Perhaps you being at home for a bit to give him that extra bit of emotional support will be enough for him to bounce back. Sure he will talk when he's ready. Best wishes

 

User
Posted 22 Feb 2022 at 08:56

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

User
Posted 22 Feb 2022 at 11:35
Hi DW

It sounds like you have decided to go down the RP route. Has the surgeon indicated what sort of surgery he is planning? Robotic/laparoscopic/open? If its open surgery then he may need a wee bit of support for a few days. For the other two, as others have already said then no real "nursing" is needed post op.

User
Posted 22 Feb 2022 at 11:37

Originally Posted by: Online Community Member
Do I have to use the hammer method to get him to talk to me again? Before yesterday I actually had to threaten to divorce him for him to talk to me about is feelings and anxieties and if he does not tell me how can I help him?

DW , sometimes we men need a good kick up the backside πŸ˜€. 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

 

 

User
Posted 23 Feb 2022 at 06:17
Hi Chris, thank you for the book link, I will try it.

Your comment about your body your problem is exactly the answer I got from my husband. He is sort of telling me how he is feeling which I take as a positive. He is also reading the booklet on Kegel exercises saying that there might be something in it and he is doing more exercise to improve his fitness levels as my argument made sense to him (told him the fitter he is the faster he hopefully will recover) He has also decided, yes, going to a support group meeting could be a good idea. So things are looking better.

Just now waiting for the bone scan (the consultant does not expect any problems there), the meeting with the surgeon and oncologist and the surgery (been advised by the consultant to have the surgery first as if he needs treatent at a later date he can have the radiotherapy, but if he has the radiotherapy now having surgery is very difficult). Hopefully all will be finished by June and he can enjoy our son's & family visit (they do not live in Europe) feeling fit and healthy again.

Just one negative question - does anybody know how often surgery fails and radiotherapy is required? And how often that then fails and HIFU rescue (1 NHS consultant in southern England as per Prost8 website) is required?

Sorry for the negative questions, but I like to have all the information handy so I can plan ahead (just a personality trait)

User
Posted 23 Feb 2022 at 06:19

Hi Music Man, the plan is robotic surgery (our hospital does over 90% robotic as per BAUS) with 1 set of nerves spared (cannot save the other set as the cancer is to close to that side)

User
Posted 23 Feb 2022 at 09:17

"Just one negative question - does anybody know how often surgery fails and radiotherapy is required? And how often that then fails and HIFU rescue (1 NHS consultant in southern England as per Prost8 website) is required?"

About 25-30% of men go on to have a biochemical recurrence after surgery. If the primary treatment fails, the chance of ever achieving full remission is significantly lower regardless of whether you have surgery followed by RT or RT followed by surgery. The trouble with surgery after RT is that it is technically difficult, unlikely to be nerve-sparing and the risk of incontinence and ED is very high. 

HIFU isn't usually done as a salvage treatment after failed surgery and failed salvage RT.

Edited by member 23 Feb 2022 at 23:15  | Reason: Italics

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

User
Posted 23 Feb 2022 at 10:00

DW 

I did my pelvic floor exercises for quite a few weeks before surgery, the advice seems to be three sessions a day and vary between the long hold  and short hold exercise. I probably did alot more that that. Four days after catheter removal I was 99 percent dry, so well worth doing. 

To answer your question another way in 70 -75 of cases surgery are successful.

Thanks Chris

 

User
Posted 23 Feb 2022 at 18:13
next step - hospital rang to say they had a cancellation, could he come in on Friday for his bone scan. Does anybody know how long it takes on average to get the result and do they just tell you or do you have to wait to see somebody? Thank you.
User
Posted 23 Feb 2022 at 18:41

Mine took 3 days πŸ‘

User
Posted 23 Feb 2022 at 20:33
Re looking after him, he should be fine to potter about, if he isn't leave him in hospital for another day! Important to move about so getting up to make tea etc is perfect exercise for the first week, just don't let him do anything remotely strenuous or fast.

Glad you are concerned for him, hope my previous comment didn't come over as harsh, I am a little scarred in "support from wife during prostatectomy dept" folks on here are probably fed up with me bleating on about it!!

All good now though!!

User
Posted 23 Feb 2022 at 21:55

For the bone scan, expect to have to go for the appointment, where he will have a radio-active liquid injected, You will then have to go away for a couple of hours for it to circulate, then go back for the scan, which takes about 20 minutes. I was warned not to go near any small children or pregnant women - seriously! There was even a special toilet for 'irradiated' people to use so the radioactive urine did not contaminate the sewers. That was my experience, anyway, and I have only ever had the one - maybe yours will be different. I got the results at the meeting with the oncologist. There was a small mark on my 7th rib, but not a cause for concern - 'could be anything, really, maybe a scar from a previous injury,' but no worries about it being cancerous.

User
Posted 23 Feb 2022 at 22:54

I’m very new to this but I have had a bone scan. Mine was about 50 mins as they did me top to toe. I found the feeling to be much like an MRI in that the scanner can be quite close to you. But none of the banging, grinding and bumping thankfully!

User
Posted 23 Feb 2022 at 23:12

Originally Posted by: Online Community Member


Glad you are concerned for him, hope my previous comment didn't come over as harsh, I am a little scarred in "support from wife during prostatectomy dept" folks on here are probably fed up with me bleating on about it!!

All good now though!!

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. 

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

User
Posted 24 Feb 2022 at 05:44
I would not leave him because he has to use a vaccum pump or anything else to get an erection, not bothered how just that he can get one because if he could not he would be very unhappy. I am glad to say we have a strong marriage. The thing I want most is that he is rid of this damn cancer and in the end can enjoy life to the fullest.
User
Posted 24 Feb 2022 at 06:23
My husband just apologiesed to me for upsetting me - I asked him when he volunteered to get this horrible disease? I told him that I am not in any way upset with him, but for him. I hope he is now ready to talk about how he really feels and gives me a chance to either help him myself and get the appropriate help.
User
Posted 24 Feb 2022 at 09:22
I am not sure what appropriate help you have in mind, desperate wife. The point is that your husband is only at the start of a horrible time - talking to you or getting counselling isn’t going to make that go away. Maybe in a few months or this time next year you could start thinking he might need some appropriate help but right now, he just needs to get through it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Feb 2022 at 10:28
Hi Lyn. Not sure I can agree with you about 'the start of a horrible time'. I found the experience of having, and being treated for, prostate cancer was certainly unpleasant at times, and worrying, but I could not say it was horrible. I was reassured by the way in which NHS staff, the consultant and the radiographers and the specialist nurses all treated it as a routine matter which they were going to put right. OK, nobody would choose to go through it, but having been diagnosed with pc, you just have to aceept that if the NHS staff tell you it will probably be cured, then it probably will. That said, my GP called me in for a chat about half-way through the treatment just to 'check how I was doing'. He told me (much to my surprise) that some men just fall apart at the mention of cancer, and that suicide is not unknown., My attitude of 'Crap happens - let's just get on with it' seems to have got me through. Talking to the group of men I met every weekday at the radio therapy sessions helped too - however bad I felt, others were in a much worse state. And also, seeing people going in for radio therapy for other (non pc) cancers, people on trolleys, people sedated, with custom-made face masks to protect parts of their head, all helped me to put my situation in perspective. Nobody would say the treatment for prostate cancer is pleasant - but I would not say it was 'horrible'.

best wishes to all,

Hermit

User
Posted 24 Feb 2022 at 12:08
I meant horrible as in the process of being told you have cancer, choosing a treatment, worrying about whether it was the right choice, worrying about the potential side effects, worrying about the real side effects, spending the rest of your life wondering whether it is going to come back.

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 🀣

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

User
Posted 24 Feb 2022 at 12:10

My OH is 8 weeks post op and doing great. He’s 73. We saw the surgeon last week and said fine to get back to the gym now and playing golf etc. Everyone is different but it really was a surprise to us how well he was after surgery. I was with him all the time as we stayed in London 3 weeks post op. He could have managed on his own throughout the day…but I like to fuss πŸ™„πŸ˜‚

He’s doing great with continence too. ED is not fixed…he had 50% nerve sparing. We have the pump which we are just starting with, but I don’t want him to start sildenafil as he has been getting occasional rapid heartbeat and feel it might make it worse. He was given HT for 6 months pre op so his libido has completely gone, he has no interest at the moment so I think that makes it more difficult for him to want to try with erectile function. I keep telling him he needs to keep blood flow to the area as when he gets some testosterone back and wants to use it he won’t be able to 🀦🏻‍♀️

Main thing is the op went well, he’s feeling well and with a lot of luck he might not need further treatment and will be with me for many many years to come.

Best of luck to you and your husband on your decision and hopefully he will talk more with you. I think that would have been the most difficult part for me if he had shut me out. Take care x

User
Posted 24 Feb 2022 at 14:08
I found the process of being diagnosed unbelievably stressful (as some regulars may recall 😁), not helped by the fact that my prostate cancer investigations also uncovered two other life-threatening conditions, but once treatment actually got underway it was all pretty straightforward. It can be a huge mental shock to be told you've got cancer (two different cancers in my case) and everyone needs to find their own coping mechanism to deal with it. You do find a way, though, because you've got to.

Cheers,

Chris

User
Posted 25 Feb 2022 at 17:39
He had the bone scan today - according to the receptionist the urologist will have the result on Monday as my husband is high priority. Is that normal or are they hiding something from us? I know we were told he is T2a M0 Gleeson 4 + 3, but would the consultant tell the truth if it is terminal or would he try and hide it until it is totally obvious? Sorry for being negative, but this whole thing is really doing my head in especially as we are not getting answers (according to the NHS website we should be able to see his biopsy and pathology report).
User
Posted 25 Feb 2022 at 18:27
For goodness sake, you are sounding a little paranoid now. Consultants don't lie to people; if your husband's bone scan finds something they'll tell him. His diagnosis is that of a pretty innocuous case of prostate cancer. What on EARTH makes you think that there's some sort of sinister conspiracy to hide the truth from you?

TRUST your doctors - they're the people who are going to be treating your husband, and from the information you've provided the treatment will be with curative intent.

Best wishes,

Chris

User
Posted 25 Feb 2022 at 18:42

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

User
Posted 25 Feb 2022 at 18:42

Originally Posted by: Online Community Member
He had the bone scan today - according to the receptionist the urologist will have the result on Monday as my husband is high priority. Is that normal or are they hiding something from us? I know we were told he is T2a M0 Gleeson 4 + 3, but would the consultant tell the truth if it is terminal or would he try and hide it until it is totally obvious? Sorry for being negative, but this whole thing is really doing my head in especially as we are not getting answers (according to the NHS website we should be able to see his biopsy and pathology report).

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

User
Posted 25 Feb 2022 at 18:49

Sorry guys, I am paranoid - probably due to family history.  One aunt took 10 years to die very slowly and my mum was persuaded by her heart specialist to have 2 pace makers.  It gave her extra time, but she hated every moment 

User
Posted 25 Feb 2022 at 19:11
The other reason I worry is the physical dhanges in my husband. It used to be the case in winter that I would sit hugging the radiator wearing wolly jumpers and he would be in shorts and T-shirt and wanting to open the window, now he keeps putting the heating on saying it is cold and complaining that he is cold in bed (despite a tog 13 quilt with an extra quilt on top and keeps shutting the window which until recently was only ever shut if we were away on holiday). The other change is even more worrying. We were camping last summer in Northumberland near Hadrians wall and he did a lot of hill walking and each time I walked with him he would very kindly wait for me to catch up. Now when we our out walking even in town I have to wait for him.
User
Posted 25 Feb 2022 at 19:27
And there is another reason why I am panicking. I had urged my brother in law (husbands younger brother) to have his PSA levels checked - he is seeing his GP next week for a referral.

User
Posted 25 Feb 2022 at 20:05

The best thing you can do is to stay calm. Panicking doesn't help you or your husband. When my husband was diagnosed we were shocked, upset and uncertain but after tears and talking we decided to tackle the whole thing as a team effort. He was 63 and his Dad had died at 86 of prostate cancer but must have lived with it for some time in ignorance.

My husband had hormone therapy and then 37 radiotherapy sessions. I went to nearly all the sessions with him to keep him company and we met a wonderful man who made us laugh and we had a lot of fun despite the treatment. He was tired after this and did get breathless going up hills but we kept walking and gradually he recovered and we had a little time when he was ok. More hormone treatments followed before he had to have chemotherapy. 

We had almost ten years of a good life after diagnosis. You can become very inventive over sex and until strong hormone treatment reduced his libido we were ok. The loss of our sex life was very sad for us both but it didn't diminish our love for each other, in fact it grew stronger. You will have to be very strong and support your husband without smothering him. He is still the same person but will have to get used to his condition and process it all. In a way you will both be grieving for the future you thought you would have.

We had many many happy times and adventures and learned to adapt our lives around all the hospital trips and setbacks. 

Remember to keep your sense of humour and carry on doing all you can. You have to trust your doctors and ask for advice if you need it. Keep talking and loving each other and have space and time to be alone if you need it.

 
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