A: DIAGNOSIS – TESTS:

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Q. What should I know (or should I have known) prior to my treatment? 

A. We have compiled a wide selection of information to help you prepared for the new reality you will face after treatment. Becoming knowledgeable about the following would be a good place to start. 

 

• Learn about the range of items you might need during recovery and how to prepare your home by reviewing the PCRS Recovery Checklist.

• Start Kegel exercises as soon as you are aware your selected treatment will require the support of a catheter during your recovery.

• Get your affairs in order ahead of time. Read our Cancer Realities page to gain insight into a wider range of considerations you'll need to contend with during your cancer journey.

• If your recovery will include a catheter:
  - Become familiar with the different ways to stabilize the unit.​
  - Learn how to prepare your bedroom for sleeping with a catheter. 
  - Learn how to secure the unit for walking​.

• After the catheter is removed:
  - Be aware of the voiding process.
  - Be prepared to experiment with different peeing positions throughout recovery.
  - Learn about potential side effects and how to mitigate them.

• Review our walking & exercise overview and familiarize yourself with how to track your progress.

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Q. What did or didn’t your doctor tell you before your treatment?

• Drs aren’t supposed to tell you what to do. They can tell you their opinion, tell you the options but the decision is ultimately up to you. Do your research. Speak to others. Everyone is different so it’s hard to pinpoint exactly what will happen. Prayers to everyone. 

 

• I didn't have any surprises. He did make me think the incontinence wouldn't be a long term issue. I ended up being in that 5 percent or ten percent group that have total incontinence. But I knew it was a risk. Just didn't think it would be me.

• My doctor painted a rosy picture. And it was anything but that. I had two infections. Had the cath for almost a month and several other issues that

• They have told this "story" so many times they now leave out important info.

• I wasn't told that the radiation treatment has a better statistics than the surgery. And that the radiation treatment has been improved significantly in recent years and has less side-effects. And that the Seed treatment is even better than the radiation.

• Wow! Where to begin! Options! Had we had options we would have most definitely chose something different than removal because he had very early stages of prostate cancer. Very small trace amount. And the surgery they chose ruined both of our lives!

• Side effects - 59yo, 6 months after surgery and  likely for the rest of my life: (ED- Incontinence-1/2 shorter penis (doctors won't tell about this one). Keep in mind, 99% of the outcome from surgery depends on the surgeon's skills!

• My oncologist was upfront about the side effects of the Lupron and chemo when I did both. He was surprised that my reaction to either was not thar bad. I did read about each medicine and the side effects and when I had nausea the oncologist immediately sent a prescription. My oncologist has been very responsive with any issue.

• He didn’t tell us about penis shrinkage. He also made us think that at 2 months post surgery my husband would be able to achieve an erection with just viagra! Nope…took 17 months for that, but we’re happy now.

• My issue is getting answers to the many questions I have. Hubby accepts whatever the doc says, while I do research and have so many questions. It is frustrating to me.

• You will have incontinence, ED and mental health issues. To what extent we do not know, could be mild or severe. Well ED is minimal. Incontinence was temporary. And did have depression which went away when ED issue and incontinence declined. Did not mention that yawning, sneezing, farting, and twisting my body could cause me to leak.

• Mine was totally upfront - if anything he told me too much and it was hard to absorb. But in painting worst case scenarios he reassured me that he had a tendency to underprivileged and overdrive. This is what has happened - things are much better than I anticipated.

• My team was upfront, honest and answered every question I had in detail - they also supplied booklets, info sheets and questionnaires with answers to unasked questions for me.

• I was generally given side effect profiles for each treatment before choosing. The bridge between what we are told and the severity of what happens is the part I wasn’t entirely prepared for, but I don’t fault my medical team. Each cancer is unique as is each patient.

• Depression! Pure and simple. To these doctors it is not their problem, so it does not exist.

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Q. Which PC Treatment should I choose?

A.  I can’t answer your question but want to be sure you consider some things that I took into account. How likely is it that your health a few years from now won’t reduce your current options? If some other condition like high blood pressure or diabetes sets in on you, it may take options away. How will 4 weeks or more of recovery affect your income now vs. later? How will your insurance coverage change between now and later? Are there any big events coming like a big vacation or wedding that you wouldn’t want affected by your recovery? Will your current home situation better aid your recovery now vs. later? Just food for thought.

 

Q. Do PSA Scores fluctuate?  

A.   Some aggressive cancers do not produce high PSA, so Gleason score is only as good as what the biopsy found and a typical blind biopsy only samples about 3 % of the prostate. A fusion biopsy is more accurate, as the MRI guides the biopsy to a target!   Typically, a Gleason 6 is a candidate for Active Surveillance. The

PSA naturally fluctuates prior to treatment) a UTI and or prostate infection also affects PSA

 

Q. Has anyone had a PSA of 7.6 and not have PC?

A. Yes. You can have a PSA of 7.6 and not have prostate cancer. Mine has been as high as 14.5 and most recently was a little over 10. I have had 2 biopsies in which both have come back negative for prostate cancer.

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Q. Is a GENETIC TEST needed? 

• Well I can tell you we were going to do AS, but with all the Breast and Prostate Cancer in the family we had Genetic Testing for Braca 1&2 gene. Hubby was positive so we decided to go with treatment.

• I would see if your Dr. Can get decipher test approved. I got into a clinical trial genetic test for Gleason 9 patients at no cost.

• If you go to the prolaris testing page, under patient there is a lot of information, and forms for financial help

• I had to have genetic testing to confirm that I can I qualified for immunotherapy with Keytruda (I’ve been at this for 4 years, had all sorts of other treatments-chemo, Radiation, Zytiga, Xtandi, etc.) Medicare and my supplemental insurance paid for it.

• Insurance initially denied the OncotypeDX test we had requested, but with the help of the urologist they ended up covering the test. I had determined if I came back in the very low category I would go on AS…and was still considering what I would do if in the low category. My test came back in the favorable intermediate. With that information I was not comfortable on AS and will be having surgery this coming Thursday. I am very thankful for the many rest available to help guide decisions. May you find peace and healing as you choose your best course of action.

• My husband is having it done as we speak He’s on medicare and a great secondary, so it’s covered.

 

Q. Many times a 3T MRI pre biopsy is recommended.  What are the benefits? What can an MRI do?

A. The guidance isn’t just toward the tumor, it’s also toward the 12 separate regions of the prostate. It ensures better sampling. Imagine an 8x8x8 room full of white styrofoam; this is your prostate. In some unknown part of the room is a large styrofoam mass of various shades of blue; the tumor. Now imagine you are to locate the mass from outside the room, from behind only one wall of the room, in such a way that you must reasonably determine its location, its size and its blue shades. You are given a drill and a long handled scoop (like a post hole digger) to take the samples. Due to cost, you can only place 12 holes in the wall, for 12 samples; this is your biopsy. Imagine the limitations of trying to determine with some certainty the location, shape, and content of that blue mass.

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B: TREATMENT DECISION - BE YOUR OWN ADVOCATE:

 

Q. What treatment is best?

• After getting a 2nd opinion, I made a decision to use a new urologist. Very, very happy that I am. I learned a very important lesson. When it comes to your health, especially prostate cancer, YOU have to be your best advocate. No one is going to take care of you better than you. Lesson learned. Because of my age, PSA, and other factors surgery is not an option, I am most likely going with radiation therapy. Now to my understanding, and please correct me if I'm wrong. There are two types of therapy, one is similar to a biopsy except they inject a certain amount of radiation into the prostate effectively killing the cancer and the prostate. It requires an overnight stay in the hospital. The other is going in for treatment 5 days a week for 3 months. This treatment will also damage the surrounding organs. I would opt for the first treatment except that I live in Los Angeles. We are currently the hardest hit by Covid. The hospitals are at capacity and it will probably get worse before it gets better. I also have AIDS. These things combined my doctor is very reluctant to have me admitted to the hospital. Even just overnight. The chances of getting exposed to Covid are just too great. So do I go with plan B, 90 days of treatment with my kidneys, liver, etc being damaged, or do I wait it out for a month or so and hope that things get better and can go with plan

• I am really on the fence about this. It is not something that has to be decided today. I still need a bone scan, a cystoscopy, and a referral to a radiation oncologist.

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C: PC TREATMENT PROCEDURE OPTIONS

 

ACTIVE SURVEILLANCE:

Q. Should I wait and use Active Surveillance?

A. The biopsy could be wrong. Right now your husband is intermediate/favorable, the reality may be different. I was diagnosed by biopsy as gleason 8. After removal and pathology it was determined to really be a gleason 7(4+3), which is intermediate/unfavorable. So even biopsy can be off. Your husband may be higher gleason or lower. If I were him I would take care of it now. Golf can wait

• You have time get a second opinion with a radio oncologist, get you 3T mri also do lots of research, if you wait you might be fine, just remember they work for you and you can fire them if you don't feel comfortable.

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SHOULD I WAIT FOR TREATMENT - DOCTOR SLOW-NO HURRY

 

Q. Hello I’m new. Husband diagnosed with Prostate cancer on Thursday. 12 biopsies, 1 in left lobe that is a 6 and two in the right lobe Gleason 7-3+4. Had a phone consult today and my husband told the doc he wants to golf this summer. Doctor said we can just wait four months and then do PSA and MRI. This alarms me. He’s intermediate risk. Am I overreaching?

 A. Just from a timing perspective, my husband had biopsy end of September, diagnosis of PC 10/1. We had ct, bone scan, mri, three consults all knowing the tumors had spread outside the prostate. Surgery was 2/19. Your husband can still golf while doing the consults, testing and decision making. I don’t know that we would have put all that off for 4 months and then do all the tests.

 

NON-SURGICAL:

BEAM RADIOTHEAPY

Q. Is incontinence a side-effect of Beam radiotherapy?

A.  A patient is unlucky if radiotherapy gives them incontinence. I had 37 sessions of external beam radiotherapy in 2015 and I had no incontinence and still have no incontinence.

 

LUPRON

Q. How long before you guys started feeling the negative effects of Lupron?

A. There is a testosterone surge with the very first Lupron shot. That can last a few days. Then the testosterone should plummet to castrate level. you should be having your T measured to be sure. Don't assume that it is working like it is supposed to.

As to feeling the effects, it varies so much that it is impossible to say how any one man might be affected. Even the level of effects varies widely. That is no typical or normal reaction.

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RADIATION

Q. Did you experience an upset stomach after radiation?

A. Yeh big time,  still deal withit a week after my last treatment. Eat bland food. Rice white bread,…nothing fried… applesauce oatmeal bananas are good… small meals help too.

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D: CATHETER ISSUES:

 

Q. Does it hurt when catheter is removed?

A. Having the catheter removed doesn't really hurt, the thought of it being taken out is far worse than the extraction. Deep breath, done!

Q. Sitting with the catheter is impossible, what are the issues?

A. The catheter tube passes from the bladder, through the end of your penis, and into a catheter bag. One area the hose passes over is the Perineum, basically the floor of your torso between your legs.  I was not aware of the Perineum (pair-ah-née-um) before the surgery, but became quite aware of it during recovery. The catheter tube presses directly against the Perineum when you sit (or attempt to sit), causing a great deal of pressure to an already tender spot.  Whether sitting in a hard or soft chair, sitting up straight, at an angle, on a pillow, donut-pillow, or a stool,  you can expect to be uncomfortable.

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E: RECOVERY ISSUES – CHALLENGES - SIDE EFFECTS:

 

SEX – ERECTION – INTIMACY:                                                            

         

Q. Big decisions to make. Today. At this point my worst fear is never being able to get an erection after this. Really need some direction. Got diagnosed 2 weeks ago. Gleason score of 7. 4 out of 12 were cancers on the right side of the prostate.

A. I went with surgery and that was a huge fear of mine as well. 2 months post op, things are back to normal with a little help from Tadalafil. Do your research, make the decision and don’t second guess yourself. Positive thoughts.

• I found that worry/stress/anxiety were the worst parts of my dealing with this $%^&* 10+ years ago. My mind always dreamed up stuff far worse than my body ever experienced. For what its worth, i am 78 and my wife and i still enjoy the making love. it is not the same, but better.

• My husband had those same fears and after his MRI his doc confirmed that he would have to take both sets of nerves. That would permanently put an end to any sort of natural erection. He chose to go with proton radiation and a brachytherapy boost and a year of ADT. All of that is done and we are just waiting for his testosterone to rebound now. We are not expecting the full function he had before but hopefully close. Time will tell. His PSA is undetectable.

• I know someone same age range and same concern, along with worries about incontinence. He chose Brachytherapy even though his doctors said it might not be the treatment of choice due to his younger age. If your main concern is really ED, that should guide your decision. Two weeks is not long to consider all of this, choice is very complicated and has long term impacts, you might want to take a bit more time??

• As for sex and intimacy, many men worry about having sexual dysfunction and inability to have an erection?  Will the inability to have an erection be the end of a healthy sex life? No! Sexual desire / feelings / emotions and capability of intimacy with a supportive partner will still be present, including a climax. The 'climax' does not go away (only no semen comes out). Some men find the climax and sexual intimacy experience to be as intense, or possibly more intense than before the surgery.

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URINATION – CAN’T PEE:

 

Q. What should my expectation be with regarding peeing once the catheter is removed? 

A. Some individuals have limited interruption and control of their bladder function, while others have to teach themselves to pee again normally. 

• After the catheter was removed, I went through various stages to get back full control over my urination. The inability to pee is an expected dysfunction following prostate cancer treatment. My ‘normal ‘abnormal was an inability to urinate standing up. The only way I was able to pee was by laying sideways on the bed and peeing into a urine bottle. I had no control over my stream for weeks, only dribbling into diapers. Once I had regained some control, I often chuckled at my excitement of being able to pee again.  The bottom line is, as my doctor said 'be patient', it will return.​

• Incontinence was absolutely the worst part of my recovery; the nightmare of wetting diapers, attempting to stay clean, attempting to keep from getting urine on the floors or my clothes, deciding whether it’s time to take the 5th shower of the day, deciding if I needed to change my diaper again, making sure the urine bottle didn’t tip over, keeping the urine bottle clean, etc. Throughout the day I wondered if my situation was normal compared to other cancer parents.

 

Q. Why is urination such a problem after catheter removal?

A. It is a combination of proximity, stitches and swelling, nerve damage, removal of a body part, removal of nerves, and the disturbance of the bodies basic functions as a result of the treatment, that play's a part in the disruption of bladder control. What happens?  All the reading material indicates it takes time for the brain to be in communication with your bladder and signal that it is time to pee.  (You will not find any of these descriptions and definitions in a text book or dictionary.)

​​

Q. Is it bad that I can only pee laying on my side into a urine bottle and not able to pee standing up? 

A. No, it all counts. 

 

PEEING and LEAKAGE:

​

Q. Will leakage ever stop? 

A. Most of the time, Yes. Even if you start with the worst possible bladder dysfunction, the body does heal and you will regain bladder control. At some point, you will be excited to be able to stand or walk without dribbles and be able to pee again normally. If after one year you're still experiencing life impacting dysfunction.  you can talk to your doctor about the sling surgical option. 

• Man I feel you I'm 9 months out still peeing and leaking, I was doing them regularly and it did slow a lot, then I got too happy and slowed down on kegels and it's like starting all over again.  So, they do work, just stay with it. 

• Thinking of this after going thru radiation 2yrs ago after having prostate removed in 2009. Hate wearing these pads and pissing ever time I exert myself. I have to Google this thing. Thx

• I have a semi-frequent "hesitancy" with my urine starting. (ie I stand there having to think of water running in my head to get the stream of urine started...but if I am really holding in urine for a long time to the point where it is painful to hold in, the urine stream strength is like a torrent just like most men)......

• I am age 50. I also have a weak urine stream. My father had Prostate Cancer which he managed to keep under control with "laser treatment". His initial symptom of Prostate Cancer was urinating blood. He was able to ward off and maintain the cancer for 17 years with laser blasting the cancer once a year or something like that. I attribute my hesitancy and weak urine flow to common enlarged prostate from age. I also have a urine drip after urinating unless I push the area under my scrotum which forces the rest of the urine in the "tube" out. I did have an injury at age 22 where my testicles were pulled by accident and I will always wonder how that might fit into my situation

 

Q. For who have had recent RALP surgery, how long did it take to regain control over urination?

A. Well, if you talking about leakage, for me 3-4 weeks. But still had minor accidents during sleep and high activity for about 2 months.

• Full control at about 5 weeks. Thanks to 5 months of kegels, I had very little drip/leakage

• I had Retzius Sparing surgery so perhaps it doesn’t count for these purposes. I was dry from the moment the catheter was removed. Had a total of about 4 individual drips over the next 2 months or so, but always when awake. Also had a few weeks of phantom drips coming down. Panicked and checked asap only to find that I was completely dry!

• Had pretty much control within one month but Leaked occasionally for about three months. Total control now not sure how long it took for total control with no drips but could have been up to a year or more that I had an occasional stress drip or two. Now total control. I had robotic surgery about two years ago.

• About a week-10 days after catheter removal I was dry but for occasional exertion squirts from laughing, coughing, sneezing, standing from sitting et.

• I was using 10 pads a day for 2-3 days, then decreased daily. I had my catheter out on April 16, down to 2-3 pads per day. I expect 2 more weeks and I'll be using shields.

• Uncertain. 6,12 ,18,24 months depends upon quality of surgery, as also age of the patient. My surgery was about 26 months before, still ED and leakage when walk. Gradually improved but slowly.

• I'm 74 and 9 months out and still working on it. Down to 2 changes per 24 hours

 

Q. Is it normal to squirt every time I get out of a chair or bed? Or when leaning over or picking up something heavy? 

A. Yes, it is one of those 'normal- abnormals’. It is amazing how much the lower core is in play when you make even the slightest movement. Doing Kegel exercises will strengthen these muscles. You may want to continue doing the exercises, even after you have regained control over your peeing.

​

Q. Is it normal to fart while peeing? I did not have that issue before the surgery.

​A. Yes, the farting while peeing is just one additional possible side effect. You may be surprised to learn that many men experience this issue even if they never had surgery!

 

SYPHYNCTER SLING:

Q.  Guys, my brother-in-law had his prostatectomy last November and is still battling incontinence. His doctor is recommending the AMS urinary control system- sphincter Operation.  Does anyone have any experience with this?

A. Prostate surgery in 2017 for its removal. Did the kegels and therapy. In 2019 had a sling put in. Now it’s 2021 and my incontinence seems like it’s worse. Anyone have any experiences with Artificial Sphincter?

• I have had a artificial urinary sphincter fitted nearly 3 years ago I still wear a small pad to catch the dips etc, it let's me get on with life just as normal you would. It is 3 parts that sit scrotum area you have a little tap that you squeeze when you need a wee you look it up on Google under artificial urinary sphincter it should tell you all about it, just be careful when you are going to sit down & it takes 6 weeks before they turn it on it , has been the best thing for me

• My husband just had the artifical sphincter surgery. Absolutely 100 percent no leakage. He is very happy with the results.

• My husband is in the process of hopefully getting the ProAct device. It’s out patient and can be adjusted in the office. It’s a balloon not really an artificial sphincter.

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DIAPER RASH - YEAST INFECTION:

Q. Is it possible I have diaper rash or a yeast infection?  
A. Yes, both are a possible side effect of having to wear a diaper or guard. Diapers create a moist humid atmosphere and wearing a urine soiled diaper a little too long is a perfect recipe for a fungal infection.

• It took three days of experimentation for me to clear up my yeast infection! For the first two days I tried a combinations of ointments: A&D antibiotic cream and zinc oxide with some baby powder thrown into the mix. Nope, that didn’t work, so I moved on to a couple of home remedies. First I applied diluted hydrogen peroxide, then apple cider vinegar dabbed onto the scrotum.  Not only did they not work, the scrotum stung so bad I decided there was no way in hell I was going to go through that pain for up to two weeks in hopes that it would work. So I immediately drove to the closest drugstore, searched in the yeast infection section - finding nothing for men, then asked the pharmacist for help.  I was directed to the Athletes Foot section. I was hesitant because there were no big letters stating this Athletes' Foot Medicine  product works on men’s yeast infection. It just said Athlete's Foot Cream with Clotrimizole. Well, there was no way I was going back to the vinegar, so I gave it a try the cream a try.  Within 15 hours it didn’t look like hamburger and the redness was gone. I continued to use the ointment for one week and never had to confront this scary issue again.

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URINATION / INCONTINENCE

​

Q. Why is removing the prostate such a problem for urination? Why is there no or limited bladder control after surgery?
A. It is a combination of; proximity, stitches and swelling, nerve damage, removal of a body part, removal of nerves, and the disturbance of the bodies basic functions as a result of the treatment, that play's a part in the disruption of bladder control. What happens?  All the reading material indicates it takes time for the brain to be in communication with your bladder and signal that it is time to pee.  (You will not find any of these descriptions and definitions in a text book or dictionary.)

​

Q.  What exactly is voiding? 

A. The premise is that once the catheter is removed you will need to make sure the bladder is working within the first twenty four hours. 

​

Q. So what constitutes voiding?

     a. Standing up and creating a strong controlled flow of urine

     b. Standing up and creating a non controlled short  flow of urine 

     c. Standing up and dribbling with no squirt

     d. Dribbling enough urine to fill five or six diapers throughout the first day

      e. All of the above

 

       My experience was D. There was no way in hell I was going to return to the doctors and have the          catheter reinserted, so all things considered, this was a success.

​

Q. What should my expectation be with regard to regaining the ability to pee once the catheter is removed? 

A. Some individuals have limited interruption and control of their bladder function, while others have to teach themselves to pee again normally. 

​

PATIENT INSIGHT: After the catheter was removed, I went through various stages to get back full control over my urination. The inability to pee is an expected dysfunction following prostate cancer treatment. My ‘normal ‘ abnormal was an inability to urinate standing up. The only way I was able to pee was by laying sideways on the bed and peeing into a urine bottle. I had no control over my stream for weeks, only dribbling into diapers. Once I had regained some control, I often chuckled at my excitement of being able to pee again.  The bottom line is, as my doctor said 'be patient', it will return.

​

PATIENT INSIGHT: Incontinence was absolutely the worst part of my recovery;  the nightmare of wetting diapers, attempting to stay clean, attempting to keep from getting urine on the floors or my clothes, deciding whether it’s time to take the 5th shower of the day, deciding if I needed to change my diaper again, making sure the urine bottle didn’t tip over, keeping the urine bottle clean, etc. Throughout the day I wondered if my situation was normal compared to other cancer parents.

 

Q. Is it bad that I can only pee laying on my side into a urine bottle and not able to pee standing up? 

A. No, it all counts. 

 

Q. Will leakage ever stop? 

A. Yes, even if you start with the worst possible bladder dysfunction, the body does heal and you will regain bladder control. At some point, you will be excited to be able to stand or walk without dribbles and be able to pee again normally. If after one year you're still experiencing life impacting dysfunction, you can talk to your doctor about surgical and non-surgical options. 

 

Q. is it normal to squirt every time I get out of a chair or bed? Or when leaning over or picking up something heavy? 

A. Yes, it is one of those 'normal' abnormals. It is amazing how much the lower core is in play when you make even the slightest movement. Doing Kegel exercises will strengthen these muscles. You may want to continue doing the exercises, even after you have regained control over your peeing.
 

Q. Which is better: diapers or absorbent guards?

A. I found guards to be better for daytime, while diapers initially were better for me at night.  I stopped using diapers after three weeks, however, because they were too hot. Not sure you even need the diapers, because it is leakage you are dealing with. 

​

Q. How many diapers will I need?

A. I went through 5 or 6 diapers daily the first two weeks. Then I switched over to absorbent pads. Each person is different, I needed 1 per day for 2 weeks.   

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F. PAIN

​

Q. What types of pain should I expect?

A. Surprisingly, I experienced only minor pain as a result of my prostate cancer treatment. The pain killers from surgery will remain in your system for a few days, so don’t get too exuberant and walk too much or too fast too soon.  Otherwise you will pay the next day, as I did.

 

• Stomach: The stomach surgery area will remain bloated and feel tight from wrestling with the robotic machinery. For me it was somewhat uncomfortable and my movement was limited for a week or so, but no major pain.
   

• Stitches: The stitches caused no pain sensation. They were extremely hot during the first week, so I used ice packs to help them heal. Instructions say to keep them dry and not put any ointment on them. I missed those instructions the first few weeks, but no harm no foul.

• Penis: The inserted catheter will generate pain on your penis tip when not secured properly. Sitting with the catheter in place will be at a minimum uncomfortable, due to the way the catheter tube runs under your body. When sitting, the tube compresses against the area between your legs called the perineum and it was too painful for me to sit. In fact, I had residual pain and couldn’t sit comfortably for 4 weeks after surgery, which I initially blamed on the catheter tube. Once my nerve endings started to regenerate I realized the pain was due to a combination of the catheter tube and removal of the prostate.

• Nerve regeneration: That final pain was the regeneration of the nerve endings  about 3 1/2 week after surgery. Up to that point there had been no pain sensations or pain discomfort in the surgery areas or genitals. Then the nerves started the regeneration process and there was discomfort and intermittent sharp pains. Nothing major or of long duration, but it was definitely tender.

 

Q. Why would I feel sharp pains in the lower abdominal area after 3 weeks, when there was no pain earlier?

A. You may experiences sharp pains during your recovery as the nerves that were impacted during treatment begin to regenerate.

 

G: HOME RECOVERY NEEDS PREPARATION

 

DIAPERS:

Q. Those of you who had RP and used diapers or shields...how do you know what to buy before this all starts? What size, how many? I would hate to be under-supplied, but I'd also hate to buy a big boxful of something and then not need it.

A. I found guards to be better for daytime, while diapers initially were better for me at night.  I stopped using diapers after three weeks, however, because they were too hot. Not sure you even need the diapers, because it is leakage you are dealing with. 

• Tena pads are a little more comfortable than the Depends pads. I use the pads inside my normal briefs which are the tight kind that provide a lot of support.

• I wear the depends briefs and love them. Feel like underwear to me. I’m 45 and the leaking has been terrible for me. I am post op aprox 6 months and still need them.

• Think maybe 24 or 36 in the pkg. They worked fine and actually didnt need them past about 3 weeks. I kept wearing them till they were gone, and then only at night.. then bought some pads, women’s pads... they work the same and were cheaper in $$. so win win.. point is you dont need to "stock up" wear some till you feel comfortable going to the next level. for me it went very very well i have virtually no issues other than an occasional drip after a cough or sneeze.

• Bought both heavy pads and diapers. Never used diapers. The pads were used just as a precaution. Never really had any major issues. Stay away from coffee and booze for awhile. Stopped using pads at about 6 weeks . But we are all different. Good luck!

• We bought one pack of the briefs and one pack of the maxi shields. Both depends. He used maybe 4 briefs. He switched to the thing pads after about a week. Don’t stock up. Each guy is different with getting continence back

• We just guessed. We bought one pack, ( shields). Walmart and grocery were a mile and half away. Approx size are on diaper boxes. Maybe get one box of Middle the road cost diaper and one package of inserts. They don’t spoil, so can be kept to take on trips, if driving, in case you get into a traffic tie ups. A urinal is a good idea too.

• One small pack for when the catheter comes out. Pending your needs buy what you need if the small.pack runs out. If you are dry and bought a 50 pack and use 3, you wasted your money.

• I went through 5 or 6 diapers daily the first two weeks. Then I switched over to absorbent pads. 

• Each person is different, I needed 1 per day for 2 weeks

 

Q. Quick question what is the best pads for Incontinence?

A. It's not just the pad - I'll show how I use it most effectively. 1) I have bought 15,000 pads in the past 11 years. Best are the Walmart Equate brand Maximum Absorbency ($11.50) Pads -@Canadian WM - quantity 52. - 2) Best way to use with tight shorty undies. Do not need to use the adhesive strip just put the pad in place and the undie will hold it in place. I have tried every pad available including woman pads. Of course, I sit on the toilet to pee. When I stand up I make sure the pad is placed OK and pull up undie. Going out I always have a pad in my back pocket. Sometimes I will carry a backpack or something similar and have pads, spare undie and plastic bags to carry out wet stuff. When using public washrooms I always seek the garbage bin so when exiting the booth can dispose the used pad inconspicuously. Hope this is good info!

Q. Is it possible I have diaper rash or a yeast infection?  

A. Yes, both are a possible side effect of having to wear a diaper or guard. Diapers create a moist humid atmosphere and wearing a urine soiled diaper a little too long is a perfect recipe for a fungal infection.

 

PATIENT INSIGHT: It took three days of experimentation for me to clear up my yeast infection! For the first two days I tried a combinations of ointments: A&D antibiotic cream and zinc oxide with some baby powder thrown into the mix. Nope, that didn’t work, so I moved on to a couple of home remedies. First I applied diluted hydrogen peroxide, then apple cider vinegar dabbed onto the scrotum.  Not only did they not work, the scrotum stung so bad I decided there was no way in hell I was going to go through that pain for up to two weeks in hopes that it would work. So I immediately drove to the closest drugstore, searched in the yeast infection section - finding nothing for men, then asked the pharmacist for help.  I was directed to the Athletes Foot section. I was hesitant because there were no big letters stating this Athletes' Foot Medicine  product works on men’s yeast infection. It just said Athlete's Foot Cream with Clotrimizole. Well, there was no way I was going back to the vinegar, so I gave it a try the cream a try.  Within 15 hours it didn’t look like hamburger and the redness was gone. I continued to use the ointment for one week and never had to confront this scary issue again.

 

Q. Is it normal to fart while peeing? I did not have that issue before the surgery.

A. Yes, the farting while peeing is just one additional possible side effect. You may be surprised to learn that many men experience this issue even if they never had surgery!

 

BOWEL MOVEMENT

Q. Is it normal for your poop to be hard as a rock? 
A. My first poop was be hard as a rock due to the anasthesia, so easy does it. You may want to use a Stool Softener, plus have hemorrhoid medicine available. 

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H:  WALKING AND EXERCISE

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Q. How many steps or minutes am I expected to walk during my 5-6 walks per day?

A. Walking is considered to be one of the most important components of recovery. Whether it is a short/long walk outside or steps taken inside, it all counts. The amount is totally dependent on where you are in your healing process. Check out the Walking & Exercise section for more insight and resources.

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EXERCISE TIMETABLE:

Q. How soon after PC Treatments should I exercise?

A. Not too soon!  You can easily get a hernia. You should strictly follow the doctors recommendations and let your body heal on the inside. I'm six weeks out and was cleared by the doctor to finally lift more than 10lbs. I'm still going to gradually increase my activity level. You don’t want a set back with this surgery.

 

• Has anyone felt like 90% better after 18 days post-op? I know that I'm still healing. But I'm ready to go back to gym and work.

• My husband felt that way so he went for a hike. Set him back another two weeks. Let your body heal.

• I went back to work after 2 weeks. I do software development from home. That first week back was hard to sit for more than 15 to 20 minutes. So, I had to get up and walk around. The following week, everything was back to normal. However, I still didn't lift anything heavier than 10 pounds until after 8 weeks post-op.

• I overexerted by running stairs too soon and hurt the area where the prostate was removed. That said, walk, walk, walk...light liftin

• My expectations were unrealistic alas. RP 11 days ago, catheter out 3 days ago, still very weak with mental fog and pee is a constant dribble into 6 pads a day. I thought that I would be doing much better.

• Been there, done that, so don't do that!!!! I was back to hammering out squats about the same time post op. DON'T DO THAT!!! It was the biggest post op mistake I made.

• I felt like that after almost the same amount of time and I popped a stitch which  was not good at all. Urine was leaking out of the bladder and blood going in. Was more pain then I have ever had. They had to put the catheter back in for 2 more weeks. It did heal DONT push it, it’s not worth it

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H. WALKING and EXCERCISE

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Q. How many steps or minutes am I expected to walk during my 5-6 walks per day?

A. Walking is considered to be one of the most important components of recovery. Whether it is a short/long walk outside or steps taken inside, it all counts. The amount is totally dependent on where you are in your healing process. Check out the Walking & Exercise section for more insight and resources.

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I. WHEN TO CONTACT YOUR MEDICAL TEAM / CALL 911

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Q. What post treatment issues/symptoms would necessitate a call to your Doctor?

A. Besides being the caregiver for my husband after his prostate surgery, I am also an OR Nurse.  Occasionally a post-op prostate surgical patient would come in with excessive bleeding. If you do have any concerns with bleeding post-treatment, contact your doctor or call 911 immediately.  Furthermore, if you think you may be experiencing ANY sort of complication or medical emergency after your surgery, do not hesitate to call 911 or your doctor. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. 

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DISCLAIMER: THE INFORMATION FOUND ON THIS WEBSITE IS NEITHER WRITTEN BY MEDICAL PRACTITIONERS, NOR DOES IT CLAIM TO BE QUALIFIED MEDICAL ADVICE. All content is written by fellow Cancer Patients that have gone through their own cancer recovery process. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition.