Radical prostatectomy...is there hope?
September 28, 2019 10:44 PM   Subscribe

My husband is just 49 and 2 days ago underwent a prostatectomy after being diagnosed with prostate cancer.

Given his age at diagnosis and family history (his dad had prostate cancer that got worse) and also given that we live in a town with a teaching hospital that is in the top rankings in the country with an excellent surgeon available, we opted for a radical prostatectomy in lieu of radiation or the wait and see approaches. On paper it made perfect sense and is the best way to ensure the he is rid of the cancer (we are aware it can still come back on the off chance even 1 cancerous cell escaped the prostate). In reality, it feels brutal. Making love the night before the surgery and knowing it might be the last time ever, was devastating. I have read and reread the latest medical research on nerve sparing robotic assisted (da vinci robot for the win!) radical prostatectomy outcomes and there is such a broad range of "after" results that I have no real certainty how things are going to pan out for us. So I am going in circles with anxiety. That's where you come in. I am looking for first hand personal accounts regarding how long it took to recover from incontinence and ED post surgery for you or your partner if you have been through this. Or if recovery never happened how you dealt with it. We've been married for just 2 years and this feels overwhelming. I am doing my best to nurse him back to health (bathing him, helping to change out cathedar bag, giving meds, etc) so that might be wearing me down and clouding over my usual sunny optimism.
posted by TestamentToGrace to Health & Fitness (10 answers total) 1 user marked this as a favorite
I'm not going to say that I've gone through what your husband is going through. But I am around his age. I can say that right now, you are worried about a potentiality -- and trying to prepare for it. That's understandable, but sometimes it also causes us to expend great amounts of mental and emotional energy for outcomes that don't actually come about. Our minds are pattern-matching machines. We like to see point A and point B and point C on a graph and say that they will connect and point D will come about, because we want to be in control of our future and it is tough when we must wait for what seems like Random Fate to make its ruling.

I will also say this: there is so much on our bodies and our beings that is sexual that doesn't involve the genitals. The genitals obviously have a really high concentration of nerve endings, so they're ... fun. But if what you worry about does happen -- couples adapt. Skin can be sensual. Inner thighs can be sensual. The surface of lips can be sensual. It may mean adaptation and learning (for both you and him) about focus and mindfulness in new areas of his body. But if what you fear were to come to pass -- and that is not a sure thing -- things can adapt.

In the meantime, I would suggest that your main focus be in learning ways to handle a fear that can't be immediately answered. I'm dealing with that myself at the moment with another issue. Just don't let it derail either of your lives. Hang in there, and find ways to take care of yourself while taking care of him (which you are kind to do). People who are caregivers (temporary or permanent) for another often forget to take care of themselves, realizing that they are not doing so only when they find themselves too burnt out to continue.

Hang in there.
posted by WCityMike at 11:32 PM on September 28, 2019 [16 favorites]

I can’t answer your question, but I’d strongly recommend joining the prostate cancer community at smartpatients.com. You will be able to get answers to this and other questions from many people in the same boat. The community for my cancer has been a lifesaver for me. It’s been especially helpful for dealing with side effects of treatment. They also have a community specifically for caregivers.
posted by FencingGal at 4:17 AM on September 29, 2019 [3 favorites]

I had a radical prostatectomy 20 years ago. I also had radiation a couple years later when my PSA started to rise. Of course, every case is different, and its reasonable to be scared of what the future might hold, but there are good outcomes, lots of them.
posted by SemiSalt at 4:44 AM on September 29, 2019 [4 favorites]

One way to deal with future uncertainty is to try and gather as much information as possible to give you an informed prediction for the future. This works with some things, but no so much with cancer, which is individual and unpredictable. Another way to deal with future uncertainty is to try and reduce the stress and fear uncertainty creates. I think a support group or individual therapy could be really helpful to you as you deal with this. Your question doesn’t indicate whether the fears in your question are ones the two of you have shared and discussed, or something you’ve been dealing with on your own. One of the most stressful parts of going through this with a loved one is trying to shoulder your worries like these by yourself, but also not wanting to add to the patient’s burdens. It’s totally normal to be worried about what this means for you separate from your partner. You only just got married and this could radically change your relationship. But at the moment his mind is probably someway occupied with getting through the life-or-death piece of this (makes sense) and not so much the other potential effects. Having someone you can be totally open with about how this will affect you could be really helpful.
posted by sallybrown at 6:51 AM on September 29, 2019 [3 favorites]

I'm sure any patient support group will be able to tell you this in substantially more meaningful detail (so you should connect with one), but, even for heterosexual couples, "making love" and "penetration of the woman with a penis" are not at all the same thing. Which is not to suggest that permanent ED might not be a real loss to your husband, but it does not mean the end of your sex life. Best of luck to you both.
posted by praemunire at 7:45 AM on September 29, 2019 [3 favorites]

My best friend went through it a few years ago. There was a pretty long recovery, but within a year he was 100% back to normal- which his wife was pretty happy about!
posted by Patapsco Mike at 7:59 AM on September 29, 2019 [3 favorites]

Here's a brief tour of my journey with this: I had the radical prostatectomy at age 51, in the year 2000, and I'm still around. The cancer did recur (as measured by PSA score), as it does close to half the time following RP. So I had followup radiation and hormone therapy in 2002. After that, my PSA was zero for a few years and then reappeared, creeping up slowly until 2017, reaching 21 or so. Once in a while I had bone scans and MRIs which showed no localized metastases, therefore the advice is not to treat it — because the treatment is more hormone therapy, which is no fun, and sooner or later the cancer becomes hormone-resistant, so you want to postpone that as long as possible. In 2018, my PSA (which is tested quarterly) stopped rising, declined slightly for several quarters, and has basically leveled off. The reason (I believe) is that at the end of 2017 I had a series of treatments for periodontal disease, and ever since I have done exemplary gum care. It turns out (according to at least a couple of studies), that periodontal disease and PC are related. It (and other inflammatory diseases) accelerate certain cancers including prostate, and eliminating the inflammation slows down the cancer. Your urologist will not tell you this. (Your periodontist will, however.)

Anyway, the point is: Your husband will survive for a long time after this. If you're going to have cancer, prostate is a good one to have because it grows so slowly. With luck, your husband's will not recur. But if it does, there are multiple stages of available treatment, long-term survival rates are excellent, and things like diet, gum and bowel care will help.

Regarding incontinence and ED, your odds are much better with today's forms of surgery than they were in my day. Feel free to MeFiMail me if you have more questions.
posted by beagle at 8:13 AM on September 29, 2019 [7 favorites]

The incontinence will take time. After 6 months in full Depends, my husband started to use pads. He still uses pads quite often, 2 years later, but mainly because he doesn't feel the urge to go as strongly as he used to. He is in his 60s, and I believe recovery is easier for younger men. It's no fun, but you will get through it. Good luck.
posted by Enid Lareg at 10:28 AM on September 29, 2019 [3 favorites]

My friend Vik gave an entirely frank assessment of what happened with him: So you’re going to have your prostate out?

It's no walk in the park, but maybe nowhere near as bad as you fear. There is hope.
posted by scruss at 2:58 PM on September 29, 2019 [2 favorites]

I almost never post, but I do want to help. My husband had a stage 3 prostate cancer and had nerve-sparing surgery at Johns Hopkins by a protege of Dr. Patrick Walsh, who wrote the bible on p.c. He subsequently had adjuvant radiation to mop up stray cancer cells because the research I did led me to talk with the lead doc of a 15-year study at M.D. Anderson that showed that men who had adjuvant rads lived longer and were disease-free longer. Incontinence was not a problem. We do have a good and active sex life still, including intercourse, but it took some heroics to get there. Yes, I recall that last lovemaking before surgery as being particularly poignant so I can relate. I learned a bucket about p.c., enough so that I had an article published in a urology journal even though I'm not a doc. I believe quality of life is very important, with the emphasis on LIFE, since it's hard to have quality if one is NOT alive. I hope for you that your trajectory is as easy and good as possible. If you get to the point of needing more info, or if you need to know what heroics were necessary to recover our sex life, I'm happy to help.

Oh. Very important: there is a thing called penile rehabilitation. It's incredibly important to do after one is healed from surgery, and no one told us about it. You know night-time erections? Well, guess what! They have a biological purpose and that is to keep the erectile tissue oxygenated so that it stays healthy. After pc surgery, if one doesn't do penile rehab and if erections are not happening, the penis doesn't do as well. I probably cannot lay my hands on the link to the video that explains what to do, but googling it might help. I found these on a cursory search.


I think this may be the 30+ minute video.


May you both be well and happy.

Holler if you need more....
posted by testmaven68 at 1:16 PM on October 12, 2019 [1 favorite]

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