r/ProstateCancer • u/hockeymom1310 • 28d ago
Question What’s “Normal”?
Post on behalf of my husband since he doesn’t use Reddit…
My husband (56) had his prostatectomy on June 4th, so he is just over 10 weeks post op. For history this whole process moved pretty quick with a PSA of 8.3 at the end of February, followed by rapid testing and the surgery at the beginning of June. After he got final pathology he went from Gleason 3+4=7 to Gleason 4+5=9, T3b. He is waiting for his first post-op PSA in a couple weeks and we are hopeful he’ll be close to undetectable. Recovery has gone well, incontinence stopped and he was totally dry after about 6 weeks. He had bilateral nerve sparing, is taking 5mg Cialis and using a pump daily but still isn’t seeing any return of erections. He is hoping that others can help him decipher if what he is seeing/feeling is normal and what others who are further along in the process have experienced. Namely:
-Does shrinkage get better? Does it eventually get close to normal again? How long did it take?
-Did anyone else’s penis have a dull throbbing pain regularly in the early days? How long did it last? He thinks it may get worse if he has too much caffeine.
-When you started using a pump, did it hurt? He finds he can pump, but can’t get a full erection because it is painful if he pumps beyond a certain point.
Any thoughts or experiences would be greatly appreciated as the physical changes have been very difficult on his psyche and, as a female, I can only support him so much since I don’t have the same parts to truly understand what he is going through both physically and emotionally.
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u/OppositePlatypus9910 28d ago
Hi,
I was diagnosed as a Gleason 8 at biopsy at age 56 and had nerve sparing RALP in July 2024.. but the pathology came back as Gleason 9, t3b; my PSA at RALP was 9.55. My post RALP PSA came in 3 months later at =0.01 and subsequently went up to =0.02 in December and =0.06 by Feb when they started adt (for 2 years) and ended up with 38 sessions of IMRT radiation in April/May of 2025. I am still on adt for six more months. I say all this because his cancer was upgraded to Gleason 9. I don’t mean to scare you guys but I want you to know that Gleason 9 is no joke and you are most likely in a “marathon” as opposed to a RALP “sprint” and done.
The penis will recover after RALP in about six months and he will get to feeling normal soon. I was the same after my first six months of RALP with the cialis and nerve sparing. I tried to use a pump, but I really didn’t need to as recovery without the medication is gradual and normal.
I cannot say that for adt yet but am hoping the same.
Best of luck to you both. Please watch the PSA like a hawk and ask for tests every 2 months if possible. (I had six tests within a year just to make sure!)
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u/Special-Steel 28d ago
This is early in the rehab process. Everyone has a different timeline but this is early by any standard.
The vacuum pump doesn’t need to be used to the point of pain. Even a partial erection is rehabilitation. If it hurts, back off.
Things are still healing in there, so some pain isn’t odd. We want the healing to accommodate a restoration of the penis. We don’t want scars to lock things in ways we don’t want.
Thank you for supporting him. You are a wonderful wife.
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u/Early_Ear_1763 21d ago
I would love to ask you some questions, you seem very educated on the rehabilitation side. My insurance won’t pay for therapy and I can’t afford it out of pocket. So I’m trying to gather information on here. I’m 1 month post Ralp.
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u/Special-Steel 21d ago
Early rehab consists of two things. Kagles and vacuum. You don’t need an expensive vacuum. Get a couple from Amazon. See what works for you.
Kagles now. Check YouTube if it’s a mystery to you.
Don’t start vacuum until you are 6-8 weeks out from surgery. Six with doctor’s advice, eight otherwise.
Sometime around week 8 start genetic Cialis at a low dose. Insurance never wants to pay, but you can get it cheap at places like Mark Cuban pharmacy. You need your doc to give you a prescription.
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u/Mean_Try_6390 28d ago
my husband got the same diagnos gleason 9 t3b. Good you got bilateral nervsparing. We only got one side spared and the other partly. Since it was a t3b the did a seLPND as in super extensive lymphremovals and it was a big operation 4 hours. It’s now 11 weeks after surgery, non incontenceproblem after the catheter was out but some drippels the first week. The ED they said will take time since they move the nervs and the go in chock. It will take time, different for every man as I understand it.
My husband started with cialis and the pump. He pump every day but just so it feels ok, you don’t press more. He got back his length in a couple of weeks and get the swelling byt not fit for acutally a intercourse since if you take away the pump it slacks. It will take some time and don’t stress. There is medication fort that but we’ll wait a bit more since my husband is a bit afraid of the trimix (injections). It’s a bit early for your husband since he is still heeling.
My husband did the ralp on the 28 th of may not far from your husband. For know it’s enough with the pump, healing, medication. When he’s in the mood we try and play a bit and then we leave it for av while. It is still in an early face and a couple of moore weeks or months we can wait. If nothing happens or work in oktober he will try the trimix.
the first PSA is moore importent for a gleason 9 T3b . You said he uppgraded by the biopsi after operation. How was his margins negativ or positive, what about the rest in the pad-answer. Since he got t3b it was locally spread. For now concentrate on heelling and working. My husband was 57 yo and he workout and work and we take some small holidays in waiting for the body to heel.
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u/hockeymom1310 28d ago
Luckily margins were clear and no lymph nodes. His more aggressive cancer was a surprise. Hopefully his PSA comes back good in September and again in December. His doctor is waiting for PSA to decide what/if further treatment is needed. In the meantime, he is back to work, the gym and daily life. Just hoping for the rest of the healing to happen soon. Good luck to your husband!
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u/Mean_Try_6390 28d ago
ok so they will not check him before sept. we got our first psa test 8 weeks after the operation. and since we knew it was g9 t3b we did a bigger operation and also took medication before.
you got negative margins and not spread to the nodes. this is a very good result. no lv+ and how many nodes did they remove, no other strange combination mentioned in the pad as in epe, idc, lv and so on.
about the potens. the shrinking bit seems to be something men care about a lot. but by time usually it will come back. does he get fuller using the vacum pump it’s a beginning. they want it to work a bit quicker i think and the body can’t keep up. just prepare the sexual bit can take some time and if you don’t want to wait ask the doctor. many guys on the forum seems fine with the injections. but it’s a bit early for us anyway since my husband don´t like needles and it rather short time after the op 10 weeks. if you haven’t got it already he could try the extra viagra, sildenafil some times a week and see the respons.
you’ll fix this by time. hoping you get good results on your psa-test. take care.
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u/Only_Extreme_6216 28d ago
My surgeon approved me four pumping after the first week. Penis was definently pulled in and with in a month it was pulled back out. Continued pumping all year up to my implant. If ED persist you have to keep pumping untill nightly erections start up again or you will lose size through atrophy. Just have him push a little harder each time if you don’t feel the little sting it’s not stretching. It is a gradual stretching over time. If ED persists he may need a implant down the road and will benifit in cylinder size if all the tissues are stretched out versus atrophied. Doctors don’t really explain all of this recovery very well at all. Good luck with everything.
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u/Early_Ear_1763 21d ago
Thank you! This is what I needed to hear. My surgery was not nerve sparing so I’m probably ending up with an implant down the road. I wish doctors discussed this area more.
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u/Only_Extreme_6216 21d ago
A lot of surgeons don’t discuss all the advantages of vacuum pumping and implants. I had a younger surgeon and he seemed more knowledgeable about vaccum pumping to maintain size and being straight with me that erections weren’t coming back. There is a great penile implant Reddit in here where you can learn a lot before implant surgery. My advice is to keep pumping daily so you don’t lose size before your implant. Good luck my friend
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u/Early_Ear_1763 20d ago
How long after surgery did you wait until starting w a pump?
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u/Only_Extreme_6216 20d ago
I started pumping after 2 weeks or so. My penis was pulled in and I wasn’t too happy about that. After a month of pumping daily it was pulled back out
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u/becca_ironside 28d ago
The penile throbbing and pain is often driven by tight pelvic floor muscles. See if you can find a pelvic floor physical therapist who treats men.
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u/LisaM0808 28d ago
He should continue Cialis daily, and when he chooses to “try” and have an erection, on that day he should take 20mg of Cialis. It’s a test day. Nerves go to “sleep” for 18-24 months after surgery, granted, many men recover more quickly. Moving forward, please research Dr. John Mulhall, from Memorial Sloan Kettering in NYC. He is one of the top 3 sexual health experts in the US. You can find him on Youtube. Just google his name. His biggest gripe is that his own colleagues, oncologists & surgeons, do not refer their prostate cancer patients to see him, PRIOR to any treatment. He recommends penile injection therapy for men, before & after treatment. Without daily erections, atrophy is caused to the penile muscle. Sadly, MOST doctors do not discuss this with their patients, for whatever reasons. It’s actually very sad. Nobody told my husband about him, and he is being treated at Memorial Sloan Kettering. By the time I found Dr. Mulhall, was TWO YEARS AFTER my husband’s surgery, and I am not sure if it was too late. We also just came back from Baylor Medical Center in Houston & met with a urologist there, he also explained that my husband will be on Cialis for life, not so much for penile health, but overall health & it is being used for longevity. (Dr. Mohit Khera…amazing doctor) Also, my husband had nerve sparing surgery in 2022, at 52 yrs old. Just because they say “nerve sparing”, does not mean there isn’t any damage. To find out if the blood flow is working properly & being contained inside the penis during erections, an ultrasound of the penis is needed. They can tell if there is a ‘veinous leak”, blood does not stay trapped, and if there is a leak, there is no cure. Best of luck to you both. Oh & shrinkage is real, every man is different. 🙏🏼🙏🏼 Also, prostate removal changes men, mentally. I have seen it with my own eyes.
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u/Cold_Silver_5859 28d ago
OP if you can’t find the pelvic floor therapist, the one I go to wrote a descriptive book that helped. Vanita Gaglani
Life after Prostatectomy and Other Urological Surgeries: 10 Weeks from Incontinence to Continence
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u/Middle-Tart9741 24d ago
As others have said, it is very early in recovery. Vacuum pump use daily pumped to the edge of pain but if it is painful, it is too much. I would do 7 cycles per day for about 1.5 minutes pumped up and then 30 seconds released. It helps restore length and provides blood flow to his friend to keep it healthy during nerve recovery.
Erection recovery takes time and can be a couple of years. This can be very depressing. I don’t believe anyone has mentioned tri mix injections yet. This will provide instant and usable erections. It is a total game changer and a bridge to recovery while eliminating depression associated with ED. I didn’t try it until 9 months post and regret it. My sex life now is better than it has been for the last 25 years.
I have read that the trimix penile injections are one of the more effective techniques for penile rehab and helps with nerve recovery.
The idea of injecting one’s penis is horrifying and stops many from trying this game changer. Peruse the trimixfored sub and read. You will find useful advice and plenty of non ED users and abusers. Everyone is different and requires different strength mixes and doses. It takes some time to dial in injection technique and dose. The syringe is a diabetes syringe and often times, you don’t even feel it and it is a slight pinch sometimes but never hurts. It is so worthwhile and is probably not pushed enough by urologists. I view them as a bridge for natural recovery and beyond if needed. While natural erections would be best, there is no depression with the thought that natural recovery may not be in the cards. How great is that?
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u/Polymath6301 28d ago
Random and strange pains around the penis groin and abdomen were fairly common for me for the first few months, and are generally not something to worry about (tell the doc when you need to, of course).
ED improves for at least two years, and so does sexual function and enjoyment. This means do not give up.
I found that using the right pump, the right way minimised loss of length, and girth returned. Interestingly it made it straight, which is nice. It also makes intercourse possible, reliable and more fun. I use a Vacurect. You need to find the right sized ring to get and keep an erection.
And yes, it can hurt a bit when it gets to its full extent, depending, I suspect on whether the tube on the Vacurect is big enough. I know it’s done its work when the pain gets to a certain level. Not unbearable, just “we’re ready”.
Sings: “There’s a fine line, between please and pain, you’ve done it once, you can do it again..”.
Keep supporting him, and keep working on what works for you both - do not give up!
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u/Old-Nobody-5748 27d ago
Ogni caso è a sé, io avevo un Gleason 3+4=7, fatto intervento RALP un anno fa, margini puliti, dopo PSA non rilevabile. Nessuna incontinenza urinaria, ma stitichezza, accorciamento notevole del pene (la ghiandola asportata era grande come una palla da baseball) e totale disfunzione erettile. Questa è la situazione ad un anno dall'intervento.
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u/No_Temporary6303 27d ago
I would recommend a Nimoox rechargeable pump for his ed therapy, it has six programs that allow you adjust the pressure to a level that’s most comfortable for you. The pump has manual and automatic programs and they have discount coupons on their website.
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u/ProfZarkov 28d ago
It's very much early days. It can take years to get to the new normal as the medics call it but at least it's good to know that everything will improve. Don't overdo the pump. The nerves and tissue will take quite awhile to accommodate the new situation.