Worry about meeting the consultant on Monday

User

Posted 28 Feb 2022 at 13:40

husband had bone scan on Friday, been told consultant would have results today - have not heard anything. I must admit that Torquemada would be proud of doctors and nurses treating people with cancer. They manage something he never managed. Torturing people for years on end and getting praised for it.

User

Posted 28 Feb 2022 at 13:45

sorry, one other question - when we saw the urologist and the speciality nurse we asked what the waiting time is for the OP, we failed to ask what the waiting time is to see the surgeon and oncologist. Has anybody got any idea how long it normally takes (is it 10 years)?

User

Posted 28 Feb 2022 at 14:09

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 28 Feb 2022 at 19:03

I had made my husband an appointment to see a physiotherapist specialising in pelvic floor exercises, at first he was very reluctant, but went today. Now he is very enthusiastic about the visit - been shown how to do the exercises correctly and given a treatment plan and is of the opinion it was money well spend

User

Posted 01 Mar 2022 at 06:45

This will be my last post - I am getting a divorce, not because of his treatment, but because of his attitude.

As he is already suffering from ED (Viagra does not give enough of an erection for intercause) so I got him a vaccum pump. It arrived last week. Has not been touched. Comment: I'll do it later. Suggested he got fit and lost weight (and offered to go on a diet with him). yeah, maybe later. Got this attitude of "it'l be alright on the night". He is retired, but wants to go back to work (working for an agency) because he is bored instead checking what he needs to be as prepared for RP as possible.

Wish you all the very best. Take care

User

Posted 01 Mar 2022 at 07:14

All the stress off a diagnosis effects you mentally I know he is not being helpful but stick in their he needs you things will improve 👍

User

Posted 01 Mar 2022 at 10:05

DW. Sorry to hear your news. If he is like i was, he is still coming to terms with what it all means.

Thanks Chris

User

Posted 01 Mar 2022 at 23:16

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 09:20

Hi Everybody, we have had a long talk and no I am not leaving him. I love him, he is my world.

Thank you for your support and encouragement.

We also managed to get an appointment with the surgeon so hopefully we will move a step forward. I just hope it is not another one of those consultations as previously with the urologist - that was 20 minutes late with nobody telling us he was running late (if a receptionist for example had said that there is a problem and he is running late we would have understood) the consultation took 10 minutes and did not really answer any questions.

We did have a short meeting with the nurse. My husband on Friday rang on Friday with a question, nobody answered. A nurse rang back on Monday and as he was out she said she would ring back at 14.00h. We are still waiting for that call.

Let us hope the consultation with the surgeon is more in depth. We are also waiting for an appointment with the radiologist. Hope that will happen soon as well.

User

Posted 02 Mar 2022 at 09:52

Top news you need each other there is light at the end off the tunnel good luck with the treatment keep in touch 👍

User

Posted 02 Mar 2022 at 11:23

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 02 Mar 2022 at 18:42

Hi Tony, thank you for your kind words. We are working on this together so we will find a solution to make us both happy.

User

Posted 02 Mar 2022 at 23:52

Originally Posted by: Online Community Member

...so I got him a vaccum pump. It arrived last week. Has not been touched...

Would you be happy if he booked you in for breast enlargement, without asking you?

Originally Posted by: Online Community Member

...suggested he got fit and lost weight (and offered to go on a diet with him)....

Nothing wrong with making a suggestion, but you shouldn't be upset if he declines. It's a different matter if you have issued an order and he has disobeyed!

Originally Posted by: Online Community Member

...but wants to go back to work (working for an agency) because he is bored instead checking what he needs to be as prepared for RP as possible.

Ok I guess as he is 67 he has just retired, not too surprising he would realise that retirement is actually boring, and it is a sad coincidence that he has also been diagnosed with cancer at the same time. Prostate cancer does not mean you have to stop everything until it is cured. he should get on with living, whether that is working or holidays doesn't matter as long as it makes him happy.

Why have you decided on RP? He hasn't finished the diagnosis process yet! It isn't a very high grade cancer a less aggressive treatment may be better with far fewer side effects. Should he end up incontinent as a result of whatever treatment he has, you want to make sure it is he who made the decision not you; because you don't want that hanging over you for the rest of your life.

My apologies if this post lacks finesse, but I think some straight talking is required here.

Dave

User

Posted 03 Mar 2022 at 06:48

Hi Dave64diag2018, I got him the vaccum pump after we discussed it and he thought it is a good idea and as to the breast enlargement - probably not as I am rather well endowed. I am not pushing him to loose weight, that again is his idea after doing research (and he has lost a stone already) I am just offering to join him.

Regarding RP, that is NOT my idea at all. I would prefer he went to UCL or Vitus Klinik for treatment with the Nanoknife and he is now investigating these ideas further. (been told he is not suitable for HIFU as the cancer is in a bad position for this).

My husband does not like the idea of Brachytherapy and cryotherapy at all. So that is out.

Anyhow, I know he is bored beeing retired and waiting for me to retire (why did they change retirement age for women and then on top of that removed the right to retire early on a slightly reduced pension) so we can do extensive travelling.

User

Posted 03 Mar 2022 at 09:13

I am also not very keen on the hospital he has chosen (had the choice between 2 and choose this one). looking at the statistics it is a slash and burn outfit (less than a quarter of the English (English average is about 10% this hospital about 2%) average of Active surveilance), I felt we were being railroaded by the urologist to opt for RP (they now got 3 surgeons doing it, the one we are seeing is new and I cannot find any of his statistics unlike the other 2). Hospital is a teaching hospital, but very disorganised. Got the appointment letter asking us to bring the letter and the attached form filled in, no form attached. Will have to ring today to get the form.

User

Posted 03 Mar 2022 at 10:38

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 19:15

Well, turn up for the books. Our GP just rang to see how my husband is getting on and how he is feeling and if he needs anything. She advised us to do a lot of research and consider our options carefully. We will defenitely take that advice on board.

User

Posted 03 Mar 2022 at 20:03

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 03 Mar 2022 at 22:15

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 04 Mar 2022 at 12:39

Wow, thank you Lyn. More than a dozen years after my RP and RT I am still learning so much from you. I cannot thank you enough for the trouble you go to to help us all navigate the minefield that is PC.

Just for the record, in 2009 I had nerve sparing on one side and was left with both ED and urinary incontinence (UI). I have already covered the ED in an earlier post above, but I was also one of the unfortunate 10% who never recovered from incontinence either.

However my problems may well have been exacerbated by (a) a slight pre-existing bladder weakness and (b) follow-up radiotherapy.

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