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Original poster

My husband has prostate Cancer. Please talk to me if you've been there

31 replies

Motherofajuggernaut · 15/02/2019 07:46

He was diagnosed in November and the initial advice was that he would go on active monitoring. A second biopsy has now established there's far more cancer than originally thought and he needs
a prostate removal.
I'd like to know the ins and outs please. He's being referred to have it done by robot. It's not likely to happen before May/June. He's not in any immediate danger as all they have found is grade 6- lowest.

What's the recovery really like?

Will he be ok hormonally?

Sex: I understand he'll be "dry firing" afterwards too, what's that like as his sexual partner?

It's been a devastating few weeks, a real roller coaster but we have held it together, just about. I'd appreciate talking to someone and getting the female perspective. He's only 47

OP posts:
JacquesHammer · 15/02/2019 09:00

Sorry to hear you’ve been going through such a tough time, I’m afraid I can’t help but just bumping the thread for you in case someone more useful comes along!

All the best to you both Flowers

UserThenLotsOfNumbers · 15/02/2019 09:03

Yes my husband was the same, but the surgery wasn't robotic. He was 50 when diagnosed.
PM me if you like, Im happy to answers any questions you have.
He's almost 4 years in remission now.

Original poster
Motherofajuggernaut · 15/02/2019 10:36

Thank you. I will PM you

OP posts:

Interested in this thread?

Then you might like threads about this subject:

General health
Feckitall · 15/02/2019 10:52

Hi!
DH finished radiotherapy in Jan and is still having side effects and pain...
My thoughts are with you both..it is a long haul..

Original poster
Motherofajuggernaut · 15/02/2019 11:47

No radiotherapy has been recommended in this case. Gosh that's a scary thought.

OP posts:
Original poster
Motherofajuggernaut · 15/02/2019 15:13

Anyone else? Please cheer me up with positive stories

OP posts:
StrongerThanIThought76 · 15/02/2019 16:38

Hi OP no experience of prostate cancer myself but get in touch with Macmillan who have been amazing support during my DPs testicular cancer diagnosis. On their website they have a forum under each type of cancer, LOADS of threads to ask questions and get support from patients and their friends and family who are going through/have been through the same.

It's a rocky road OP, make sure to take care of yourself too x

DMCChristmasCakes · 15/02/2019 16:41

DDad was diagnosed over 2 years ago with a PSA level so high it was off the top of the scale & metastatic tumours all over the shop. He was given about 18 months if he had the chemo.

He went through the treatment and is now in remission and should be ok for years.

Thankfully I have no idea about DPs sex life so can't answer your questions on that one. Grin

I guess my message is that prostate cancer treatment has come a long way in the last few years & even when the outlook looked really crap, actually it was OK.

Thinking of you both.

Bigdreams · 15/02/2019 16:41

Get in touch with PCUK. They can put you in touch with women whos husbands have had prostate cancer. They can talk you through it all

Trumponerous · 15/02/2019 17:04

My DH had a robotic, retzius-sparing,nerve safe radical prostatectomy on Tues. He had a Gleeson 7 (3+4) diagnosis in Dec. I have a thread www.mumsnet.com/Talk/general_health/a3461598-gleason-3-4-Bone-scan-normal#83625369 which reminds me how desperate I felt early on.

The surgeon is pleased how the op went, the margins are all clear so they are talking about 'cure'. The cancer was worse than the original diagnosis suggested but the surgeon says he saved a lot of the nerves etc and expects a good outcome re continence and erectile function. My Dh is now home having spent 2 nights in hospital. He is sore but managing fine on over the counter painkillers.

My DH was sure he wanted the surgical route because the radiotherapy route looked too drawn out. He just wanted the cancer out and then to deal with a one time recovery. So far so good. He is getting palpably better every day.

Finding a good surgeon is key I think, everything I read indicates to go for one with many ops a year and good outcomes (can be googled).

clarazabel · 15/02/2019 17:11

Dad had prostate removed over 10 years ago because of cancer, no re-occurrence. It's not the end. Good luck x

ValleyoftheHorses · 15/02/2019 17:15

My Dad had it. He had injections of testosterone blockers, radiotherapy and brachytherapy.
He’s been clear with a psa if less than 1 for over a year.
Flowers

Fallulah · 15/02/2019 17:20

Dad had it. Aggressive but luckily hadn’t spread outside the prostate. Did they explain all the options or have they gone straight for prostate removal? Dad had radiotherapy which wasn’t pleasant at the time but he is ok now, just coming to the end of three years of hormone injections after which he will be on ‘watch and wait’. We are lucky to be at a hospital that specialises in the new treatments which luckily dad didn’t seem to need at the time. They gave the impression prostate removal was by far not the only option.
Agree - prostate cancer UK are brilliant and there is a forum full of people who have been where you are. There is also a helpline where you can speak to a specialist nurse and ask them anything.

LIZS · 15/02/2019 17:23

Dbro had his removed by keyhole with robot last year. No driving for about a month and 3 months off work but has made a good recovery with minimal effects and no further treatment. He had been monitored for several years beforehand. df has had it later in life , radiotherapy and has survived well over 5 years so far. Good luck to your dh, treatments are developing all the time and options had already increased between df and dbro being diagnosed.

Original poster
Motherofajuggernaut · 16/02/2019 22:29

Thank you so much for your replies.
It's scary reading how much it varies. Radiotherapy wasn't offered by his consultant, he seemed to indicate there was no need in this case or certainly the risks outweigh the benefits. His cancer score is grade 6 which I understand is the least aggressive. He hasn't been offered a bone scan, they seem to be going off the MRI and he's certain it hasn't spread elsewhere. They found 5 cores in 26 that were positive from the template Biopsy.

I keep swinging from "he'll be alright" to "what if" to "what the fuck"

OP posts:
Brahumbug · 17/02/2019 07:14

My Dh had robot assisted surgery and he is fine with no incontinence. One thing he wasnt warned about that he found distressing was that it does significantly reduce the size of the penis.

Original poster
Motherofajuggernaut · 17/02/2019 07:27

When you say significantly how much are we talking? He's worried about this because in his own words he doesn't have a lot to spare! (I have never had any complaints, he's average!)

OP posts:
Original poster
Motherofajuggernaut · 17/02/2019 07:29

I'm concerned we should be pushing for a bone scan? He's had an MRI and from that his consultant days it's all contained but is that the full picture?

OP posts:
OhDearGodLookAtThisMess · 17/02/2019 07:47

I don't know whether age at diagnosis makes a difference but my dad had it aged 73. He had radiotherapy and the surgeon said he'd be good for at least another 15 years or so and something else would probably carry him off before the prostate did. This was 16 years ago and he's still fine!

Original poster
Motherofajuggernaut · 17/02/2019 08:17

Ohdeargod

That's what he was told initially, but the 2nd biopsy has said he's better to have it out than anything else because, radiotherapy carries risks of further cancers down the line as he's relatively young. A prostectomy is recommended because this far his PSA is giving inconsistent results so monitoring him that was wouldn't be reliable. He'd have to have annual template biopsy and the risk that they might miss the point if/when cancer changes is much higher risk of developing a secondary cancer

OP posts:
Brahumbug · 17/02/2019 09:11

He lost about 40% of the length and it left him with an upward curve which wasn't there before. He would have been able to deal with it better if he had been warned, but it was the one issue that was never mentioned. On the plus side. Continence returned quickly as did function. Robot surgery is best way forward.

Brahumbug · 17/02/2019 09:13

If your Dh is younger then radio therapy wouldn't be advised. Once you have had radio therapy you can't have surgery,which is problem if the cancer returns

Original poster
Motherofajuggernaut · 17/02/2019 11:11

40% is significant! I'm not sure he'll cope with that at all well. :( This is going to change us forever isn't it?
I woke up feeling all at sea because we really don't have it together financially. He has minimal life insurance cover, only enough for the mortgage. I have none. I have no pension, he's only been in a scheme for 4 years. We haven't even sorted out wills properly, the one we have we did before kids! ..It's time.to start being a proper grown up I guess.
I'm feeling angry today. It's such a roller coaster

OP posts:
Areyouasking · 17/02/2019 12:00

Just starting this journey. Husband 53, biopsy and tests this week to confirm and to assess spread. Currently alternating anger and fear. Hard to concentrate on much else, fully understand the feelings you are going through op. Want to read up and hear stories, but at same time don't want to know!

reallemonade · 17/02/2019 12:05

My dad was diagnosed with it aged 60, very early stages. They did the removal operation but no robot back then. Because this was pre robot days they couldn't be sure they'd got all the cancerous cells. Unfortunately it spread very slowly and he died fifteen years after initial diagnosis.

Hope it goes well for you and your DH, so glad they have the robot and so much better treatment, the advances in treatment have been huge in the last few years Flowers I always donate to cancer research.