Support post prostatectomy - Prostate Cancer N...

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Support post prostatectomy

JCB3
JCB3

My husband is having robotic nerve-sparing surgery today. I'd like to know how he might feel afterwards and the best way to support him. Thank you, this is such a helpful site.

32 Replies
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Hi , you should not worry at all , robotic surgery is less pain and quick recovery , especially with bilateral nerve sparing . In fact I had this choice in April , but if I had chosen surgery I would probably have had to go to the hospital , one day prior , and alone as my GF is not Always with me , it dépends of her mood , so going alone , had to be prepared and waiting fasting the whole night was unbearable for me . So I chose RT plus six months ADT , as it is an equivalent treatment . I feel fine , RT finished and ADT finished . Sometimes I regret the surgery because the patient recovers very quickly , and supported like yours , is no problem at all . After one Week it's already fine and one month after , forgotten , For my treatment , it was much longer and I remember some days I didn't feel so well . Best wishes and you will see , do not worry

SusieQQ
SusieQQ in reply to thierry

Merci, Thierry.

thierry
thierry in reply to SusieQQ

Hello , how does your husband feel , one day post op ? Did everything went well ? Are you also allright today ? What will be the Following days ? If your husband is fit enough , even if he is 68 like me , he will recover quickly . I have examples around me , they have forgotten this difficulty . Making some sport help , and light diet too , I have skipped sugar in tea , or coffee , skipped fat , meat , cakes , biscuits , I only eat porridge with fresh fruits for breakfast , a glass of iced water and a cup of unsweetened green tea , and light meals for lunch and dinner and I like the way I eat . Trust me . Best to both of you

JCB3
JCB3 in reply to thierry

Thank you for asking, Thierry. He is feeling very well. Very little pain and the catheter is running clear. I think we both feel relieved and positive.

He should be coming home today - which is really good news. Thank you for your advice on diet. We will eat very healthily to help his recovery.

thierry
thierry in reply to JCB3

Hi , I am very glad for both of you , Have rest , confidence and courage for a few days .

Best wishes

Get a copy of:

"Prostate Cancer and the Man You Love: Supporting and Caring for Your Partner" -- by Anne Katz.

It's the best book on the subject, and one of the few that takes "emotional factors" seriously. It also has lots of useful information on prostate cancer generally.

The two common side-effects of surgery are incontinence, and ED. Incontinence will usually get better over weeks and months. Pelvic-floor exercises (Kegel exercises) help a lot of men.

He's going to have ED after surgery. It may slowly improve (measured in months and years, not weeks). Depending on your sex lives and ages, that may be a serious blow to his self-esteem and self-image. Treatments for ED include (in order of invasiveness):

. . . oral drugs (viagra, Cialis, etc);

. . . . vacuum pump;

. . . . . intracovernosal (penile) injections;

. . . . . . implant.

"Penile rehab exercises" may be helpful. If his doctor doesn't mention it, check for videos by Dr. John Mulhall. Mulhall has a useful book:

"Saving Your Sex Life: A Guide for Men with Prostate Cancer" --

. . . Dr. John Mulhall.

Your sex lives are going to change, but they won't be over (unless they already are). If your sexual activity has been limited to penis-in-vagina intercourse, this is a good time to extend it to include other things. If it's been more varied, expect to rely on those other things, till he finds an ED treatment that works (or recovers erectile function).

Erection, ejaculation, and orgasm are all linked together, before surgery. After surgery, erection and ejaculation are absent, but orgasm is still possible, for most men. Get some silicone-based "personal lubricant", and find out what's possible. Have a towel ready, urine leakage may be a problem.

I suggest that there's one thing you must _not_ say:

. . . "I'm just happy you're alive, I don't care about missing sex."

You may be tempted to use that line, but it's _not_ going to make him feel better.

. Charles

SusieQQ
SusieQQ in reply to cpcohen

Charles,

Thank you for this advice. The Katz book is ordered and I have vowed not to use the phrase you have advised against - that was particularly helpful!

Great advice from cpcohen. I would only add that he might want to join a prostate cancer support group. Urologists often gloss over the downsides, and it may help him to hear from other guys who have been in his situation.

SusieQQ
SusieQQ in reply to Tall_Allen

Thank you for this advice. I’ll share it when the time is right.

Great advice above. There is a lot of good info in the many prior posts on here, on Reddit and other discussion sites.

He will be fine but, expect some abdominal discomfort for a couple days as the intestines wake up from anesthesia. Don’t rush food. Avoid alcohol for a while. Several doc friends of mine said and I agree to take the pain killers he is given. They work.

The catheter is weird but is only a week and it is generally painless. Having it removed is no big deal.

Take a good three or four weeks to heal. Even if there is little pain stuff still has to stitch back together and you can’t rush it.

In my case, the bladder took about three months to get back to normal and continued to improve for a few more months.

I started Cialis at the three month point though it seems different doctors do this differently. At the 11 month point I’m getting decent erections. This has improved in the last couple months.

Plenty of helpful folks on here so if you have questions, even little ones, just ask.

SusieQQ
SusieQQ in reply to CHPA

Thank you for this encouraging information, CHPA, it’s really helpful.

If URO takes his nerves, expect erections to never return. Incontinence will not subside completely. I needed a penile implant and a Artificial urinary spincher. The whole penile rehab procedure is demoralizing experience.

Exactly what he's going to feel like may vary quite a bit. I know there's supposed to be less pain with RP, but for some people (I was in this group) there's still quite a bit. And my recovery was pretty slow, slower than I had had for kidney cancer surgery (non-robotic in the end) a couple years before. So not to scare you, but if it isn't easy, don't be surprised! He'll need your support one way or the other. If he's open about what's he's feeling (plenty of men aren't) believe him; if he isn't that open, allow that he me be feeling worse than he lets on, mentally or physically. Good luck to you and him!

He will need help with the catheter. It's an uncomfortable device that constantly reminds of its presence and having someone there who can assist with the changeover routine from daytime to nighttime catheter bags is important. My wife took care of that for me and it was a load off my mind. Securing the tube so that it stays in place overnight is also important. Mine was in for two weeks and I was glad to get rid of it.

After that, re-establishing bladder control is the next step. To my astonishment, I peed myself on the way home after the catheter was removed. Luckily I was wearing an adult diaper but it was a shock. That was the last time it happened but it's important that he exercise his kegel muscles every time he pees - stopping and starting the flow so that he regains continence. He'll need some underwear pads to catch the inevitable leaks and lots of encouragement.

Good luck and best wishes for his speedy recovery.

1 year and 1 month after my RP, I have to say that other than a few reminders like leaking a few droplets when I laugh/cough and sneeze, and getting my quarterly PSA testing...I feel great and can barely see any sign of my surgery when I look in the mirror. I will council you that your husband needs to be his own expert....his body will speak to him...he needs to interprete this for the "experts". I had 2 active drains and a catheter when I was sent home 2 days after surgery. 10 days later...both were removed...despite my feedback that the drains still seemed to be productive. 5 days later, I awoke at 4 AM on the Friday of Labor Day weekend with excruciating pain...went to the ER...spent 6 hours there and was sent home with a dye based medication...repeated at the same time the next day....another 6 hours in the ER...the third day...same thing..we finally get a CT that confirmed exactly what I had suggested at the first ER visit...I had lymphoceles (build up of lymph in the abdomen). I had to have the drains reinserted and 2 more days in the hospital and had the catheter reinserted. Not fun....and a result of not insisting I had a clue what was happening to my body. Stand your ground. Do your post-op Kegels DAILY (use an app like Kegel Talent to stay on track), the incontinence is initially disheartening, but it will dramatically improve around the 3 month mark...and continue to improve with constant use of Kegels. ED is a longer haul, but again you need to do the Kegel exercises...and use it or lose it...by whatever means possible (the ED section of Health Unlocked is also a big help in this category). Life will never be the same as it was...and since I am Stage 4...the future is not as secure as it was, but I have great days...where I love, laugh and live...and forget that this has happened...until I need to think about it again. I wish you both well on the journey. You are lucky to have each other to lean on....and it is only part of your life...not your life.

PS - Join a PCa Support Group in your area...those are the only conversations where one feels truly heard. Keep monitoring this forum...it has been a real boost to my emotional and physical health.

SusieQQ
SusieQQ in reply to JPnSD

Thank you, JP. Some encouraging advice here.

Go well with your continued recovery.

Great advices in the thread! A minor thing that could be very annoying the first weeks is constipation, is it a common side effect of surgery that people often don’t expect. Diet, walking around and if needed stool softener is recommended.

SusieQQ
SusieQQ in reply to Gemlin_

Thanks, Gemlin. So far, so good but useful advice if we need it.

Hi, my husband had this surgery about a year ago. One thing not mentioned here is the catheter going into the penis can be painful after a day or two. Get some Neosporin with lidocaine and keep that tube lubed up.

Kegels are important.

Start penile rehab ASAP.

JCB3
JCB3 in reply to fluffyfur

Thank you, good advice.

How is your husband a year on?

fluffyfur
fluffyfur in reply to JCB3

He is totally continent, regained total bladder control at about 3 months post surgery but he was religious about his Kegels. Tell your husband to do them. Sex is a different story but he had ED even prior to his RP. He's tried Cialis and pumping and things just are not working in that department. I know he's depressed about it but he doesn't want to discuss it and I'm not going to pressure him.

His post surgical pathology showed that the RP did not remove all the cancer so he had to return a year later and just finished 35 sessions of radiation to the prostate bed. He's doing ok actually. Seems positive and strong.

Any other questions feel free to ask.

SusieQQ
SusieQQ in reply to fluffyfur

Thank you.

I feel that forewarned is forearmed. So helpful hearing the experiences of others. I hope things go well for you both.

my partner provided optimism and good cheer. The surgery was not a big deal, went home the next day and learned to manage the urine bags. My darkest times were the first two weeks after ghd catheter came out. I was discouraged and feared I would never gain bladder control. We prepped the bed with a barrier sheet to protect the mattress and lots of puppy pads under me . The pelvic floor exercises helped immensely and I got 98% control by 4 months after surgery. "Adjusting" to no erection and no semen has been the next challenge. Again this is helped greatly by open channels of communication with my partner and working together to find how to be sexual and intimate without needing to "penetrate." I have to accept this irreversible change in me; my partner already has.

SusieQQ
SusieQQ in reply to dadzone43

Thanks, DZ. This is very helpful information. It helps me to mentally prepare for a wide range of possibilities.

I hope your recovery goes from strength to strength.

Hello , you had the confidence to expose a difficult moment in your life , and you received lots of advices and encouragements . That is rare enough to be considered . And then , How does your husband recover today , two or three days after op ?. I am not curious , but sometimes , experience helps the Community of us , As I told before , RP for a low to intermediate cancer on a fit person is crtainly the best way . Regards

JCB3
JCB3 in reply to thierry

My husband is doing very well after his robotic RP 3 days ago!

His catheter is not problematic and we are practised at adapting a day bag to a night bag. He's now doing this on his own. He is eating and sleeping well and relatively pain free. We have been out for walks and stopped for (a socially-distanced) coffee....so life is reasonably normal.

The catheter will be removed in 4 days time - our next hhurdle. Our fingers are crossed!

thierry
thierry in reply to JCB3

Hi , no hurdle at all , I am sure that your husband will be continent when the catheter is removed . Keep Walking two or three half hours each day . Best wished

Darryl
DarrylAdministrator

Since it will/should be months before in person groups startup again, your husband should consider signing up here We’ll all welcome him. You both should also sign up for the prostate cancer patient conference at Malecare.org

SusieQQ
SusieQQ in reply to Darryl

Thanks, Darryl. I’ll talk to him about your suggestions, very helpful.

dadzone43
dadzone43 in reply to SusieQQ

We attended the conference last year in New York City. It was really good. Stayed at a hotel around the corner and made the trip into a mini-vacation. I highly recommend the conference, whether live or virtual.

In Vancouver, the local Pca support group is running meetings over Zoom. Not as nice as in-person groups, but much better than nothing.

. Charles

SusieQQ
SusieQQ in reply to cpcohen

This is good to know, thank you.

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