Hello husband diagnosed yesterday

User

Posted 16 Oct 2017 at 12:19

Hi folks.

My lovely husband was finally diagnosed yesterday.He has a long standing history of BPH with the usual peeing problems that causes. His PSA has been increasing and is now 9.2 prompting his GP to refer him. The GP also seemed unhappy with the feel of the Prostate on DRE.

It has taken 4 very long months from the start of the GP 2 week urgent referral mid June. He had a multi parametric MRI,flow studies then a template biopsy. There was various reasons for delays along the way. When he asked about some sedation for the TRUS biopsy he was told it would delay matters several weeks as it was not protocol at our local hospital. He would have been happy to go ahead with some midazolam/valium or similar.

Anyway, a sympathetic registrar phoned him back and changed the TRUS to a Template biopsy under General Anaesthetic which in any case we knew to have advantages over the TRUS. More accuracy for one thing and knowing from the MRI there was 2 areas of concern the biopsies could be better targeted.

Strange though it seems we feel actually relieved now that we can move forward to the next stage.The consultant and nurse probably thought we were nuts to seem happy at a cancer diagnosis. The uncertainty and waiting have taken their toll though in worry and sleepless nights. I feel really sorry for men when they have to wait this long as it would never happen in a ladies breast clinic.

So .... he has T2c with a Gleason of 3+4 = 7 No apparent Node involvement. We know this is far from the worst situation and hopefully is curable. The MDT has recommended surgery and the urologist we saw yesterday gave us the pros and cons of all treatment options ( or active surveillance )

We had researched all of this over the last few months on this site and others and discussed what he would prefer if it was cancer and he wanted treating. As he is only 61 my husband didn't like the idea of the Prostate still being there irradiated or not. Of course he does not relish either Incontinence, Impotence or any other side effect but for us we feel the surgery would give us greater peace of mind and we would have to work around the side effects should they happen.

We do know that there can be recurrence even after the best surgery but have to hope that the cancer is truly confined to the prostate and there is no micro metastases lurking anywhere that are undetectable at present.

Part of the reason we were " pleased" if that's the right word
is that the consultant is going to refer him to Leicester for hopefully a robotically assisted Prostatectomy. We thought we might have a big battle on our hands if the clinical commissioning group in our area said NO due to the cost. That would be the last thing you need when it could be your best chance of cure.
So we just need to wait again to see the consultant at Leicester for more information and whether husband is a suitable candidate. Fingers crossed.x

In the meantime I've started starving him ( only joking but losing a stone or 2 should help) and suggested he start pelvic floor exercises and get fitter which may help with continence post op. He might find he's found himself in some sort of boot camp.😉

User

Posted 16 Oct 2017 at 12:19

User

Posted 16 Oct 2017 at 19:45

Hi thank you both for your kind words and advice. It's true you need to make up your own mind regarding the treatment. I did ask the consultant what he would do if it was his prostate. ( A bit cheeky I know) but of course they can't/ won't say.

I was pleased my husband is taking the surgery route but realise time will tell.Although surgery is my preference as well , at the end of the day it's his body and it's his decision. In the meantime we just need to get on with life.
Husband carried on at work today as usual and I will tomorrow. ( I don't do Monday's)

We've told family/ friends closest to us without trying to make a drama out of it and had a good response. We didn't want them upset although I'm sure they will be but no point in us all sitting around moping.Lots of people are in a much worse position and there is a very good chance he'll beat this thing.

It's great to have this wonderful site to come to and support each other through the good times and not so good.I suppose the hard part of it for me is to watch him going from well to unwell whilst he's having the treatment and recovery. In the long run I'm sure it will be worth it.

Bye for now.

User

Posted 16 Oct 2017 at 19:54

Peggles

I had the surgery almost a year ago. Of course, I wish I hadn't needed any treatment, but I've no regrets. You have to weigh up the options and then live with your decision. The surgery wasn't as bad as I feared it may have been.

Ulsterman

User

Posted 21 Oct 2017 at 19:02

Hello Peggles,
Welcome to the site,I had robotic surgery , the hospital provided me with cotton briefs & pads to wear after the catheter is removed, you can wear your own underwear it's up to you. Incidentally they do provide you with a bigger bag at night with a stand, try to avoid alcohol or any beverage with caffeine in it , thus reducing the need to empty catheter more often. My catheter was removed about 2 weeks after robotic surgery, I was in hospital for one night, my choice, I felt I would recover quicker at home. I was provided with pain killers if needed, injections every day for 28 days to prevent blood clotting( I had to inject myself, they do show you, no big deal). Pelvic floor exercise a must, otherwise you will pee yourself, the pads were very useful incase of leakage. The most common leakage is if you fart , sneeze, cough or a sudden movement . I had my operation in 2015, in 2017 I then had Radiotherapy , very soon to see the oncologist to see if PSA level has risen since RT.
I wish you both all the best , please read my profile.

James

User

Posted 21 Oct 2017 at 20:10

Buy proper pants rather than boxers and get a size larger than usual. Many (but not all) men find that their testicles and penis swell a lot and the closeness of pants will provide much needed support.

Pyjama bottoms and tracksuit bottoms are best with a drawstring or elastic waist and in a dark colour. M&S do some nice ones in sweatshirt material at a reasonable price (and tumble dryable which is a massive selling point for some!)

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

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User

Posted 16 Oct 2017 at 12:55

Glad you joined us, it's always good to talk. Your story is almost identical to mine, except that I have opted for radiotherapy instead of surgery. I reckon we all wonder if we made the right choice, there's no point to worrying, we can only take a decision based on what facts we have and our own preferences.
I've just started my 3 months hormone treatment, and is going reasonably well other than spells of debilitating fatigue. I'll live with it!

Once the die is cast, it's easier to get our minds focussed on the job in hand, ie we have a plan!!!

We all feel the same, but I've found that being totally open with friends and family is the best approach because they actually want to help. I've had very little sympathy, which is no use to anybody.

Good luck, keep in touch, and stay positive.

PS it's traumatic for partners as well, seek support for yourself as well.

PPS I decided to lose weight as well, 4lb lost in the first week!

Edited by member 16 Oct 2017 at 13:01 | Reason: Not specified

User

Posted 16 Oct 2017 at 13:07

Hello Peggles and welcome to the site.

Pleased an odd feeling on diagnosis? People who haven't gone through it might not understand but we do. When we were told we were very matter of fact about it having (well me that is) done the research so we were pretty sure what the diagnosis would be. The nurse however was very concerned and needed to check with us outside the consulting room that we had actually understood that John DID have cancer.

Once you get that bit over and done with the feeling of relief is palpable because at least now you are no longer in no man's land but can get on and be proactive (such as getting your husband to lose a bit of weight for instance)

As long as you can talk to each other once the treatment starts they'll be no misunderstandings about how either of you feel, both physically and mentally.

We're here if you want the answers to questions and we are also here when it all gets a bit too much.

Good luck. He's a lucky man to have you in his corner !!

Best Wishes

Sandra

****

We can't control the winds - but we can adjust our sails

User

Posted 16 Oct 2017 at 19:45

User

Posted 16 Oct 2017 at 19:54

User

Posted 21 Oct 2017 at 17:54

Thanks for that Ulsterman,

We were pleased to get a letter to see the consultant at Leicester next Thursday. He also had a letter to contact the physiotherapist (we think to give him information re
pelvic floor,/ kegel exercises prior to surgery to help with continence.)

What we were wondering was , what kind of pants men preferred to use for comfort whilst the catheter is in? Jockey shorts v briefs? Any thoughts ? Any other ideas on trousers etc. He has bought some stadium pants that have zips up the outside of each leg.

( This is assuming he has the surgery of course)

Regards

User

Posted 21 Oct 2017 at 19:02

James

User

Posted 21 Oct 2017 at 20:10

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

User

Posted 11 Nov 2017 at 10:28

Hi Peggles, because your husband and I are very similar, same stage, same choices, and same Gleason score, I was wondering how you are getting on?

Since I was last in touch, I've made real progress as I prepare for my choice (radiotherapy) by working through my 3 months hormone therapy.

To start, I had pills for one month, then onto injections with an overlap of two weeks. As soon as I started the pills, I was wiped out from time to time with a withering fatigue. I felt too tired to go to sleep. I was concerned that this would get worse when I had even more hormones when the injections started. I don't know why, and I don't really care why, the fatigue immediately disappeared and I feel better than I have for a long time.

Had I made the right choice of having radiotherapy? It's amazing how our minds can confuse us when we are lying awake, thinking, at 3.00am. I remember being told by the consultant that whilst radiotherapy might well have advantages re. Side effects, the downside was that it made further treatment very difficult if it was required. I convinced myself that the scenario could well be that my PSA would again rise, but nothing could be done, and I'd just wait for the inevitable.

I understood if I needed more advice, I could phone one of the specialist nurses at the urology department. So I did just that, and she got me back on track, and my new scenario is that the radiotherapy has every chance of solving it, but even if it didn't It would probably be controlled by long term hormone therapy. In fact the same might be true for surgery, or watchful waiting.

So why am I wasting my life worrying about it? Don't know, so I'm not!. I'll be around for many years to annoy people.

The moral of this story? Our imaginations can be our worst enemy, realism is our best friend

User

Posted 11 Nov 2017 at 16:04

Hi Tykey. Thank you so much for your post. I'm glad you are back on track and are being positive.( You've every reason to be.)
You are so right about our imaginations being our worst enemy. I unfortunately have a very active one especially during the night.

Honestly together with stress and sleep deprivation I'm not too good at the moment.( One of those bottom of the rollercoaster times)

I thought about not going on this site anymore as reading about people's journey's can be so upsetting as I feel so much for them and the imagination starts running riot that will be us too in time.
I know We have to be realistic and I have read all the reliable information and research items I can find but when you see posts like " poor outcomes for those having Robotic Prostatectomy" and raging cancer following radiotherapy I personally do not find that helpful for those of us just embarking on this journey. We just want to get hopefully on the bus for one or two stops then get off as presumably the long timers once did.( Some of us surely get lucky? )

Anyway sorry for rambling. My husband is doing better than me I'm glad to say. I'm doing my best not to transfer my worries onto him. He's going to proceed with the surgery as originally planned on 24th this month. Went for his pre op assessment yesterday and they did not have any concerns.

I wish you all the best with your radiotherapy and sincerely hope that you too can get off the bus soon once you are sorted. Stay positive.

Ann

User

Posted 11 Nov 2017 at 23:35

Quote:

Peggles;172013

I thought about not going on this site anymore as reading about people's journey's can be so upsetting as I feel so much for them and the imagination starts running riot that will be us too in time.
I know We have to be realistic and I have read all the reliable information and research items I can find but when you see posts like " poor outcomes for those having Robotic Prostatectomy" and raging cancer following radiotherapy I personally do not find that helpful for those of us just embarking on this journey. We just want to get hopefully on the bus for one or two stops then get off as presumably the long timers once did.( Some of us surely get lucky? ).

Ann

That is one of the main reasons the forum was redesigned a couple of years ago to create different sections; newbies and people with low grade cancer don't need to look at the sections on advanced stages or end of life care if they don't want to. Before we had the new sections, people dealing with the serious end of the disease felt unable to post honestly in case they scared newer members.

Of course, there are people who get lucky - they tend to leave the forum as soon as they can because they have no ongoing need for support. The active membership is therefore always going to be skewed towards those who either have advanced disease or ongoing side effects from treatments etc. Some rejoin when their cancer comes back but not all I guess.

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

User

Posted 12 Nov 2017 at 08:43

Excellent observation, Lyn, about forums being skewed because the vast majority of us are happily getting on with their lives, either cured or totally under control. Never to be heard from again, which is fantastic.
We also need to be careful about statistics, which I'll not repeat because I don't want to repeat them and give them credence. It doesn't help to hear how many men will die per year, it means nothing because it takes no account of how many men there are, nor the fact that we tend to live an extra 20 years these days.
Since I "came out" with the fact that I'm experiencing (not suffering from) PC, it's amazing how many people have come forward to tell me that their husband/boyfriend were diagnosed 10 years ago and still going strong. Those are good statistics😀

"There are three kinds of lies: Lies, damn lies, and statistics"

User

Posted 12 Nov 2017 at 11:08

Quote

"That is one of the main reasons the forum was redesigned a couple of years ago to create different sections; newbies and people with low grade cancer don't need to look at the sections on advanced stages or end of life care if they don't want to. Before we had the new sections, people dealing with the serious end of the disease felt unable to post honestly in case they scared newer members. "

Sorry,. But this was on the section for newbies with localised cancer.

" My frustration is that men chase robotic surgery assuming it is best but it only takes a quick look at members here to see that the men with very poor outcomes tend to have had keyhole/ robotic RP"

I am sure that would be worrying to most men who have had or about to have a RARP.

Edited by member 12 Nov 2017 at 11:46 | Reason: Not specified

User

Posted 12 Nov 2017 at 14:52

Hi Peggles, I was referring to Barry's post about the research data.

The data I was referring to in your quote has been widely published in the media over the last few weeks but is not new - it was explained to us when John was first diagnosed nearly 8 years ago and it helped John to make a fully informed decision about whether to have robotic, keyhole or open RP so I think it is important that newly diagnosed men aren't misled into assuming that keyhole / robotic are better in every way.

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

User

Posted 12 Nov 2017 at 16:11

Hi Lyn

I would think there has been some improvement in robotic surgery techniques since the 8 years ago your husband was diagnosed.

I would also think it depends what research you study. Even the researchers results are often skewed in favour of their biased views.

After all the Open surgeons ( and they are becoming fewer as they retire) often have a vested interest in carrying on with Open RPs as they perhaps don't want to embark on the learning curve of robotics at their stage of their career as they are more comfortable doing what they have done for the last 20-30 years.Nothing wrong with that if they are excellent surgeons. I don't expect the young surgeons of the future to take this path though. They might find themselves frozen out of this type of Urology work.
I have witnessed this myself as Radical Prostatectomy has been taken away from my local hospital and centralised in an effort to improve outcomes for men.

I have read that they will be able to do one port surgery soon and they are nearer to incorporating a microscopic facility for the surgeon in with the 3D camera so that they can see and deal with any spread whilst they are in there so reducing
recurrence. Even the best surgeons open or not cannot see microscopic levels of spread so that would be a great thing. Of course if the cancer has spread further afield that would not help a bit.

They are also other companies looking to develop surgery robots to get in on the act as "Intuitive" the company who has the monopoly on the D'avinci is clearly exploiting their customers. Apparently there is a chip in the consumable instruments that only lets them be used 10 times ,( decided by the American FDA and Intuitive) before replacement even although they could actually be used about 30 times!
Other companies are looking to develop tactile feel for the surgeon and instruments that are snake like in that they go anywhere.
No doubt the cost will come down too once there is no monopoly. Whatever we think robotics is here to stay and be improved upon.

All in all I still think one size does not fit all and sometimes Open could be better. It's not black and white. Such a big part of the outcome/ recovery is down to the skill of the surgeon and not the type of surgery.

All surgeons are definitely not the same and we are reliant on them to do a good job to the best of their ability which ever method they use.
I think we have one of those and he is every bit as keen as us to get a good outcome.
Having come through the usual route. i.e Open then Keyhole and now robotic I don't think for one minute he would be doing this if his outcomes were worse.
I think he is a man of honesty and integrity so we are happy with that.

Everyone to their own opinion though.

Ann

User

Posted 12 Nov 2017 at 18:08

Sorry Peggles, I think you haven't read the research we were all referring to. The most recent data explored the benefits and deficits of the different types of RP and concluded that open is slightly better in terms of the medium and long term outcomes. A number of the highest profile robotic surgeons are reverting to open and NHS hospitals that haven't already purchased robots are less likely to be rushing into it now I think, certainly for prostatectomies. And of course you are correct that J's op was some years ago and the info could have been out of date except that our surgeon is one of the national leads on PCa and was one of the first to bring the technique to the UK so when he was telling us 7 years ago that the research was going to show that da Vinci has significant benefits but poorer outcomes, we trusted his advice. And similarly, you must trust the advice of your husband's medics plus your own research.

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

User

Posted 12 Nov 2017 at 18:43

Hi. There is lots of urologists claiming to be national leads but as I say everyone is entitled to their own opinions. I assume that's why there is this forum.

Strange though that on the BAUS website between 2014 to 2016 there was about 2,500 Open procedures nationally and over 15,000 RARP. I realise that these figures are also out of date now so it will be interesting to see what the figures are for 2017 to 2019.

Only time will tell if my husband is one of the ones with a poor outcome or not.

Regards

Ann

Edited by member 13 Nov 2017 at 15:18 | Reason: Not specified

User

Posted 20 Jan 2018 at 14:53

Hi Peggles, having read all the comments and realising that a couple of months have passed, I thought I would let you know how I was doing after radical robotic surgery on 20th December.
I was out in 24 hrs, and slowly recovering at home. Co codamol given for pain relief which was fine. Catheter removed after 3 weeks ( normally 2 but holiday time) and now after 4 weeks I’m driving and living pretty normal life.
Still some discomfort but easily helped by paracetamol if necessary and still feel quite lethargic. But on a plus side I’m told they got all the cancer and just waiting for a pas test in February.
Dont know whether you have decided on your treatment but I found it beneficial to hear what other sufferers said
All the best

User

Posted 20 Jan 2018 at 15:33

Hi Boschman.

Glad to hear you are on the mend. That's great news you have had so far.What a coincidence though, we went to see the consultant this morning for Tony's histology results. Great news for us too. Clear margins, no extracapsular spread, No seminal vesicle involvement or perineural invasion and PSA undetectable. Final stage T2c with Gleason 3+4.
We know it's early days but are cautiously optimistic for the future.☺ We know how unpredictable this disease is. We live in hope there is no micro Mets anywhere.

On the down side Tony chose to have non nerve sparing to help the surgeon get clear margins so we know the result of that will definitely be ED. He also has quite bad incontinence at this time.( 8 weeks post op) but we are hopeful this will improve as it's still early days. He is doing his Kegel exercises religiously and the surgeon has given him the contact details of an excellent physiotherapist specialist in pelvic floor rehab so he will see her.
Despite this we are just glad for now the cancer seems to be gone which is the most important thing. I think we may have a bit of a celebration with some bubbly tonight as we feel a lot of the weight has been lifted from our shoulders.

Let us know how you get on.

Cheers for now

Ann

User

Posted 20 Jan 2018 at 16:53

Hello Ann and Tony,

So pleased that your results are cause for celebration. Enjoy the bubbles !!

We can't control the winds - but we can adjust our sails

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