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56yo husband having RP BiLat Lymph on 20 Sept 22

User
Posted 16 Sep 2022 at 21:23

We've researched other options over the past few years, radiation, ablation, cold laser, etc. But, surgery is the best option. 

I know this isn't about me. But, for 20 years, this man has been my rock. He read some silly quote on the internet that read something like "If a man can no longer fulfill his wife's fantasies, he is no longer a man.."  (paraphrasing) Afterwards, he told me about this quote and I could NOT get him to change his mind. 

Will this happen? Will he get more depressed than what the docs are letting on? If so, what can I do to help him? I can handle the incontinence and ED. What I can't bear is his broken heart. He is a good man. A loving and generous man. He keeps me tethered to this earth. After 20 years, we still laugh, share our thoughts or fears. This next bit is personal but, applicable..on most weekends, we still have sex like 20yr olds.

I'm scared. I need help to help him.

I'm terrified for him. This just isn't fair. 

Please tell me what you have all tried, whether it worked or not. I'm desperate for ideas. This man is too important not to try everything. 

Please & thank you in advance. 

Heidi 

Background:

husband was dx at age 53. We've done active surveillance until late March 2022 scan showed 2 new tumors and main tumors had doubled in size- all since his Dec of 2021 scan. A 3rd biopsy was done in April of 2023, and the worst 3+4 and 4+3 are in the apex, with nowhere else to go. Only one of 12 biopsy was a 3+3, the rest were 7s. It's not so slow growing anymore. 

Edited by member 17 Sep 2022 at 15:20  | Reason: Thumbs

User
Posted 16 Sep 2022 at 23:14

Hi Heidi,  This is just an opinion but there are three big factors I can think of.   One is it might not happen.  Another is that things happen and we get depressed and gradually adjust.  The other is that knowledge of your continued love and support will be very important to him and help his recovery.

Let's hope it works out fine,  All the best, Peter

User
Posted 17 Sep 2022 at 01:09

Originally Posted by: Online Community Member

he read some silly quote on the internet that read something like "If a man can no longer fulfill his wife's fantasies, he is no longer a man.."

Well that sounds like a quote from a dumb ass man with a shallow ego. The internet is full of them, best to ignore them.

If he loses confidence in himself, you may have to be proactive. As Lyn says getting him to orgasm, so he realises that he can still enjoy sex will motivate him to get back in the saddle, if you will excuse the phrase. Hand, mouth other body parts might not provide enough stimulation to a flaccid penis, but a Doxy wand (other brands are available) and a loving wife (other brands are not available), can move the earth.

Tell him you've got a whole plethora of fantasies, and if things don't work like they used to before the op, you're going to be teaching him some new tricks. Get strapped in it's going to be one hell of a ride.

 

Edit... just seen you are in US, apparently Doxy is a UK brand and Hitachi is the US equivalent.

Edited by member 17 Sep 2022 at 01:16  | Reason: Not specified

Dave

User
Posted 17 Sep 2022 at 02:21
2023! Hope he has substantially recovered by then.
Barry
User
Posted 17 Sep 2022 at 20:15
Maybe look at the thread. Erecting the erection - medication. By Johny. It was a great thread. But the search engine on this site is still tragic. I had RP in 2015 and had amazing recovery 2 1/2 yrs on with regular pump exercise and tablets and injections. Yes it seems like a long time but I’m the meantime we were probably having more fun than everyone we knew at our age. And lots of toys which was fun. I got back to full function using tablets and a simple ring , but sadly back to an awkward place since being incurable and on castration hormone therapy. But I’m still hanging in there and can get an erection although orgasm is sadly elusive. So many ways to skin a cat. Your heart has to stay in it and be selfless. I’m very happy just still being able to give if I’m honest.

Good luck ok 👍

User
Posted 18 Sep 2022 at 12:08
Heidi, you haven't answered the question - is he having bilateral nerve sparing or bilateral lymph node removal? If he is not having nerve-sparing surgery, he will need a vacuum pump or injections to be able to have an erection.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 16 Sep 2022 at 22:22

Cancer isn't fair - no one deserves to get it.

Your thread title doesn't make clear whether his surgeon is hoping to offer bilateral nerve sparing or whether he requires bilateral lymph node removal - the outcome is likely to be significantly different.

If you haven't already read it it, this thread explains our experience of ED https://community.prostatecanceruk.org/posts/m226323-One-wife-s-story-of-ED#post226323  As you will read, the sooner you help him to achieve an orgasm without an erection, the better (although it is necessary to wait until the catheter is out) for his sense of self. Many men can't imagine that it is possible to orgasm without a hard-on unless you prove it. In the meantime, have lots of sex before the op so you have happy memories if it takes a while to get going again.

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

User
Posted 16 Sep 2022 at 23:14

Hi Heidi,  This is just an opinion but there are three big factors I can think of.   One is it might not happen.  Another is that things happen and we get depressed and gradually adjust.  The other is that knowledge of your continued love and support will be very important to him and help his recovery.

Let's hope it works out fine,  All the best, Peter

User
Posted 17 Sep 2022 at 01:09

Originally Posted by: Online Community Member

he read some silly quote on the internet that read something like "If a man can no longer fulfill his wife's fantasies, he is no longer a man.."

Well that sounds like a quote from a dumb ass man with a shallow ego. The internet is full of them, best to ignore them.

If he loses confidence in himself, you may have to be proactive. As Lyn says getting him to orgasm, so he realises that he can still enjoy sex will motivate him to get back in the saddle, if you will excuse the phrase. Hand, mouth other body parts might not provide enough stimulation to a flaccid penis, but a Doxy wand (other brands are available) and a loving wife (other brands are not available), can move the earth.

Tell him you've got a whole plethora of fantasies, and if things don't work like they used to before the op, you're going to be teaching him some new tricks. Get strapped in it's going to be one hell of a ride.

 

Edit... just seen you are in US, apparently Doxy is a UK brand and Hitachi is the US equivalent.

Edited by member 17 Sep 2022 at 01:16  | Reason: Not specified

Dave

User
Posted 17 Sep 2022 at 02:21
2023! Hope he has substantially recovered by then.
Barry
User
Posted 17 Sep 2022 at 07:54
Hi Heidi, as Lyn said already helping him get an orgasm without an erection can make all the difference. Wishing you all the best
User
Posted 17 Sep 2022 at 15:22

Oops 😬 fixed date!

User
Posted 17 Sep 2022 at 17:31

Heidi, never give up and have fun finding a solution. My orgasms are out of this world, we have to keep the bedroom windows shut. I was supposedly non nerve sparring but did make a partial recovery, I assume something was left in tact. We mastered the technique of flaccid intercourse and my wife has the knack of getting me just where she wants me.

Thanks Chris 

 

User
Posted 17 Sep 2022 at 20:15
Maybe look at the thread. Erecting the erection - medication. By Johny. It was a great thread. But the search engine on this site is still tragic. I had RP in 2015 and had amazing recovery 2 1/2 yrs on with regular pump exercise and tablets and injections. Yes it seems like a long time but I’m the meantime we were probably having more fun than everyone we knew at our age. And lots of toys which was fun. I got back to full function using tablets and a simple ring , but sadly back to an awkward place since being incurable and on castration hormone therapy. But I’m still hanging in there and can get an erection although orgasm is sadly elusive. So many ways to skin a cat. Your heart has to stay in it and be selfless. I’m very happy just still being able to give if I’m honest.

Good luck ok 👍

User
Posted 18 Sep 2022 at 00:13

We've read through your thread. It was very informative. 

 

We're trying to stay optimistic about the after effects of the surgery and praying that we fall into the lucky category.. and things will work again- albeit differently- but work enough to make him feel somewhat whole again. 

 

Honestly, I'll take a cancer free love above all else. After that hurdle, maybe I'll find a way to help him through the rest.

 

I'm so happy to have found this group. Prostate cancer in younger men, or any age I suppose, is a rather lonely place. It's not something that can we can openly chat about with people close to us. It's not like I can just invite my neighbor over for tea and cry for the loss of something so personal, yet, so important. 

 

Thanks for listening. We will be revisiting your link in about 4-6 weeks, when the doc gives us the "go". 

 

Heidi

 

 

User
Posted 18 Sep 2022 at 00:30

This gives us HOPE! 

Thank you!

Again, I am so glad I found this group. I/we searched for groups here and unfortunately, the men only shared the worst-case scenarios and the women... well, I don't know if they gave up, or if they really loved their husbands before cancer broke their spirit? Here, everyone seems honest and gives solid advice. 

User
Posted 18 Sep 2022 at 05:35
Prostate cancer really sorts the "wheat from the chaff" when it comes to relationships.

The fact you are on my here asking questions and getting involved probably means you are "wheat".

The male sexual dynamics are almost as interesting as female and it's a minefield of confidence, mutual appreciation and sexual gratification that all feeds back into your relationship.

User
Posted 18 Sep 2022 at 12:08
Heidi, you haven't answered the question - is he having bilateral nerve sparing or bilateral lymph node removal? If he is not having nerve-sparing surgery, he will need a vacuum pump or injections to be able to have an erection.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Sep 2022 at 06:33

Im sorry I didn't get to your question sooner.

He was supposed to have both. He ended up with bi lateral lymph nodes removed and they tried to spare the nerve bundles on both sides, but one side suffered damage. We won't know until he's recovered to see what's going to work properly. 

It's been a rough week for my poor hubby 😢 He is type 1 diabetic (pump therapy) and the stress/surgery/medication has his blood sugar on a rollercoaster. The hospital stay was a nightmare and the catheter is making him miserable. He has it for 7 more days (10 total). Hopefully, we'll clear that hurdle and move forward to the next. 

User
Posted 24 Sep 2022 at 08:11

I had my RALP 16th September so a few days ahead if you. It's taken me 6 days to turn a corner and start to feel a bit better. But my body is still all over the place. The catheter is a problem, sleep for me has been a real issue. I would imagine the majority of us who have RALP go through the same ringer 

Hang in there, take one day at a time and it won't be long before the catheter is removed. 

Kind Regards

Jim

 

User
Posted 24 Sep 2022 at 12:15

Has anyone mentioned daily 5mg Tadalafil to aid recover of erections and possibly a vacuum pump. These can help get good blood flow to penis. You need to check with the medics to know when it is safe to start doing this.

Dave

 
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