Things They Didn't Tell Me And/Or I Didn't Know To Ask After Prostate Cancer Diagnosis

This is something I've been putting off doing for some time, but today's thread has spurred me to start. Add things you found out or know that applies to this list. Sometimes we don't always know what to expect until we have experienced it. Maybe we can help those following. I'd really like it to just listing things we have learned without editorial comment or big discussions and arguing starting about anything mentioned. Let's just list them and agree to disagree without making a big deal out of it. All additions subject to editing to add to the list or cut out unnecessary comment, OK?

1. No two guys will have the exact same experience with surgery or recovery.. Anytime you wonder why someone else is doing different, repeat this line.
2. The need to have a prescription for bladder spasms and have it filled before arriving home after surgery.
3. You can orgasm without an erection after surgery.
4. You can pee with ease with an erection and while orgasming after surgery.
5. There are different sensitivity PSA tests, and their results can scare you if you don't understand that.
6. Painkillers can cause constipation.
7. Walking and water will restart the bowel system and relieve constipation after surgery.
8. Post surgery depression is a very common after effect, so don't get down on yourself if you have it.
9. There's gonna be pieces, parts, junk, blood and goop in the urine coming out of the catheter for some time after surgery, even after removal. All normal...
10. Old and new blood will appear in your urine for maybe months after catheter removal- this also is normal unless bright red and copious.
11. Briefs, one size undersized, hold pads better.
12. The extra-thick Hanes brand (think the Michael Jordan commercials) will work in place of a pad for stress leakers, usually.
13. The big 3 ED drugs aren't a cure-all, it still takes stimulation and interest to hopefully make it work.
14. You will not have a ejaculate after surgery. This is known as dry orgasm.
15. Penis length will most likely shorten after surgery , doctors will say it doesn't happen, but it will for the vast majority of guys. Aggressive and early use of penis pumps may correct this.
16. The swelling of the penis and scrotum after surgery will be massive and in technicolor.
17. Statistics given are just that, statistics, see # 1 above.
18. Prostate removal can cure years of difficulty urinating, allowing you to push the scent block halfway up the urinal back.
19. You may or may not have Cowper's Gland secretion's (pre-lubrication), depending on the extent of surgery.
20. ??- More? let's add them to the thread.

Post Edited (James C.) : 11/2/2009 4:54:51 PM (GMT-7)

Is this list just for surgery?

In 10 years of seeing doctors I was never told of the diagnostics available such as color doppler ultrasound, Combidex MRI , or tests like PAP and PCA3 that give you a lot more information about your PC and its stage.
JT

Prostrate removal, even if done through small incisions, is major surgery. It will take your body months to recover completely

In the first weeks following surgery sitting may be painful. Some find relief in an inflatable doughnut cushion or a recliner.

Recovery from surgery seldom moves in a straight line. Expect both lack or progress and sudden change.

- Biopsy experiences vary as well. For some it was not a big deal. For others like myself was worse then the surgery.
- For consitpation post surgery drank prune juice, or ate some prunes helped tremendously with keeping everything soft and moving.
- Most importantly you have found the best place on the planet to vent, ask questions, help others, or just talk about this horrible disease!

LIVESTRONG!!

Things to add to the list, that I found out the hard way and wished that I had known beforehand:

1. After prostatectomy the rectum is thin, delicate, and at risk for injury for at least three months after surgery.

2. Be aware of the potential problems with your rectum. Be very careful to eat a high fiber diet, and use a bulking agent like Metamucil or Citrucel. Avoid both constipation and diarrhea – both can cause problems.

3. If you are taking antibiotics, follow each dose with some yogurt containing active cultures to replace beneficial bacteria in your stomach and avoid diarrhea.

4. If you have any pain around your rectum, or have blood in your stool, see a colorectal doctor sooner rather than later. Don't assume it's just hemorrhoids that will heal by themselves.

James, What springs to mind to add to the excellent list. You will experience unfamiliar things at every turn. That is not a problem. I asked for printed copies of my biopsy lab report and it made a lot more sense when read and reread in the following days and when hunting on the web for explantions. (I forget to ask for a printed copy of the post-op pathology report and getting hold of a copy is therefore on my "to do" list. I'm still pretty sure I remember exactly what I was told, and I wrote stuff down immediately after I was told, but I'd just like to have it on paper and be able to assess.) I not only have a file in which I keep the useful information and data on paper, but I also scanned the important bits and copied them to a memory stick. I took a notebook and pencil to the hospital and wrote down the name of every nurse or doctor who treated me and of all the medications I was given. I asked my wife to take photographs of me at the hospital before and after I went into surgery,  that was handy as I had a few hours after the operation when I was conscious but it later turned out I could not remember anything that happened, but the photos prove I was there and awake etc. She also took a photo 24 hours after the operation, and that was a big help as we could see how much of an improvement there was 24 hours on. Digital cameras mean it was also possible for me to take private photographs of private parts and use them to make objective comparisons of before and after as regard size, shape etc. As for shaving: I shaved myself the day before I went in. I did not have any soreness from shaving.  And I shaved most of the area again twice in the first month to make it much much simpler to wash and dry it. But I wished either they or I had also shaved the fronts of my thighs where they stuck the big plasters to hold the catheter in place as those plasters were painful to remove. I found I could make a bowel movement easier if I put a bit of vaseline on some toilet paper and spread it about in and around the "hole" and then sat down quietly with something to read. (I was also very regular before the op though so it was easy to know when it was going to be time) I was also lucky that there were lots of cheap plums and grapes in the supermarket during the weeks after my op. In the first two weeks I carried a small cushion around with me and everytime I thought I needed to cough (or laugh) I hugged it and it stopped my abdomen hurting straight away. (Cushion bought specially for the purpose) Don't wear shirts with buttons up the front to start with as the buttons and the extra thicknesses of fabric tend to line up exactly on the scar by the navel and be painful or uncomfortable. Wear shirts/T-shirts that don't rub on the smaller scars around the belt area, and maybe go without a belt and the buckle for several weeks too. And watch out when you tuck in your shirt that you don't dig your finger nails into one of the smaller scars! Good list! Alfred  

Hello All

Place a hanger between the box spring and mattress to hold catheter bag at night,also recliner chair most helpful for those first few nights and day .Buy or make jogging pant's with snap up the leg.

DEIDRE

Purgatory said:

Good idea, and good list, James

Pyridium prescription for burning urine after catheter removals if needed.

I wholeheartedly agree but beware: Pyridium stains anything it touches a bright orange, underwear, carpet, bed clothes, and shows up in the water in your eyes, so contact lens are also at risk. Other than that it's a great pain reliever.

www.healthsystem.virginia.edu/internet/prostatectomy/archivedsitefiles/postop.cfm


(AFTER YOUR SURGERY)

DIET:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* Eat clear liquids such as Jello, broth, or juices (no pop or carbonated beverages) until you have a good bowel movement. You may then resume a regular diet.

ACTIVITY LEVEL:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* It is good for you to walk around.
* Do not sit in one place for longer than 45 minutes at a time.
* Absolutely no biking, motorcycling, or horseback riding for 4 weeks.
* You can do as much walking and stair climbing as you can tolerate.
* You may take a shower 48 hours after surgery.
* Do not drive while taking pain medications.

SKIN INTEGRITY:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* You will have 4-6 port sites (small incisions that we perform the surgery through) that will have steri strips (small pieces of tape) and Band-Aids over them.
* Band-Aids may come off in 48 hours. Steri strips may also come off as early as 48 hours post-surgery or they may stay in place until you are seen in clinic.
* Once your dressings are off, it is not uncommon to have a very small amount of drainage from where your dressings were. There are no staples or stitches to be taken out.

URINARY CATHETER (also called a Foley catheter):
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* During surgery you will have a urinary catheter placed in your bladder. A urinary catheter is a tube carrying urine from your bladder to the outside of your body into a bag. This urinary catheter will stay in place until your anastamosis heals, which usually takes about 4-14 days. At home, the catheter should drain into a large bag. When you want to go out, you can wear a smaller bag under your pant leg. You and your family will also receive instructions regarding the care of your urinary catheter before discharge from the hospital.

MEDICATIONS:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* You may resume your daily medications as soon as you are discharged from the hospital.
* An antibiotic will be prescribed to you, to be taken by mouth. Start this the day before you come in to have your catheter taken out and continue taking this medication for 5 full days. You will receive a prescription the day of your discharge.
* A pain medication will be prescribed for you, to be taken by mouth as directed for pain. You will receive a prescription the day of your discharge.
* A stool softener should be taken by mouth two times daily. You can buy this medication over the counter and do not need a prescription. All narcotic pain medications are constipating and a stool softener will help to prevent this.

RECOVERY TIME:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* The operation lasts two to four hours and the hospitalization usually lasts 24 hours. Some patients go home the day of surgery. All patients go home with a catheter in place continually draining the urine into a special leg bag.
* You will be seen about 4-7 days after surgery in the clinic on K-9 to determine if the catheter will be removed at this visit.
* You will be cleared by our team to return to work generally 2 weeks after surgery.
* Most men have difficulty with urinary control at the beginning and will require some form of protection, such as a pad that fits inside your underwear. That is why it is important at the first visit to bring Depend Guards for Men pads and a pair of Jockey underwear.
* Within one to three months, most men have achieved reasonably good control and require minimum protection, if any. Sometimes, the recovery of continence is slower, but rarely more than three to six months. You can perform your routine work once the catheter is out within the limits of your pain tolerance.
* Kegel exercises should be started/resumed after the Foley catheter is removed. These exercises help to regain your continence. At first it may be hard to find these muscles, but can be done by starting and stopping your urine stream. Once you find the correct muscles, repeat the flexing and relaxing of these muscles without urinating. Begin by squeezing the muscles for a count of 3, then relax for a count of 3. Work up to repeating these exercises for 3—5 minutes two to four times a day. These will help to strengthen your muscles around the bladder that help hold the urine. For more detailed information on how to perform Kegels, please see instruction sheet enclosed in this packet.
* The recovery of potency after a prostatectomy can be slow and time-dependent. Even though the nerves to the penis can be spared, there is still some injury from trauma or stretching from the operation. These damaged nerves need time to heal. At each follow-up visit, issues regarding sexual function will be discussed with you by your health care provider. If you have any other questions or concerns, the nurse practitioner can make an appointment for you to discuss this issue in more detail.

THINGS YOU MAY ENCOUNTER AFTER SURGERY:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* Perineal Pain (pain between your rectum and scrotum): Call us if the pain medication does not alleviate this. You can also try elevating your feet on a small stool when you have a bowel movement, using Anusol cream, and increasing the fiber and water intake in your diet.
* Scrotal/Penile Swelling and Bruising: This is not abnormal and should not alarm you. It should resolve in about 7—10 days. You may also try elevating your scrotum on a small towel or washcloth that you have rolled up when you are sitting or lying down to decrease the swelling. It is also recommended to wear Jockey or snug-fitting underwear for support.
* Bladder Spasms: It is not uncommon with the catheter in and even after the catheter comes out to have bladder spasms. You may feel mild to severe bladder pain or cramping, the sudden, urgent need to urinate, or a burning sensation when you urinate. Call us if this persists without relief.
* Bruising around the incision sites: Not uncommon and should not alarm you. This will resolve itself over time.
* Bloody drainage around the Foley catheter or in the urine: Especially after increasing activity or following a bowel movement, this is not uncommon. While this is often alarming, it is not uncommon and usually resting for a short period of time improves the situation. Call if you see clots in your urine or if you have no urine output for one to two hours.
* Abdominal Distention, Constipation or Bloating: Make sure you are taking your stool softener as directed. If you don’t have a bowel movement 24 hours after surgery, try taking Milk of Magnesia as directed on the bottle. If after three doses of Milk of Magnesia you still have no bowel movement, it is safe to use a Dulcolax suppository.

FOLLOW-UP APPOINTMENTS:
Diet, Activities, Skin Care, Catheter, Medication, Recovery Time, Handling SIde Effects, Follow Up Appointments, Contact Information, Back To Top

* One week after surgery: You will come to the Urology clinic 7 days after your surgery. At that time, a cystogram (an x-ray of your bladder) may be taken to see if enough healing has occurred in order to remove the Foley catheter. At this appointment, you will to bring a pair or two of Jockey underwear and several Depend Guards for Men pads. Remember to start your antibiotics 24 hours prior to coming to this appointment and continue the antibiotics for 5 full days.
* One month after surgery and every three months after that: You will continue to follow up with the Urology clinic. You will get a PSA drawn prior to each appointment.
* At each visit, you will fill out questionnaires regarding your urinary continence as well as your erectile function. You will receive education materials regarding those issues as needed.
* We will also be looking for evidence of recurrence or re-growth of the tumor. That is done by drawing blood for the Prostate Specific Antigen or PSA blood test. When the prostate gland is removed (prostatectomy), we expect the PSA level to be undetectable (less than 0.2ng/ml). If any PSA is measured after your prostatectomy, then the presence of prostate cancer cells somewhere in the body has to be suspected. Prostate cancer cells that have spread to other areas also leak PSA. Even if we cannot find the areas of spread with scans or other tests, the presence of PSA means that the cancer is present. If PSA is detectable (i.e. 0.2ng/ml) after surgery, then this means that some prostate tissue (prostate cancer) remains in your body. This could be at the site of the prostate surgery, in the lymph nodes or elsewhere.


CONTACT doctor's office IMMEDIATELY IF YOU ARE EXPERIENCING ANY OF THE FOLLOWING SYMPTOMS:

* Temperature over 101° F
* Urine stops draining from your catheter into the drainage bag
* Any pain so excruciating that pain medication is not relieving it
* Large amount of blood clots in urine.
* Bladder spasms that are not relieved with pain medication

My surgeon took a different approach on some of the points. I understand it reflects some newer thinking.

Most significant regarded pain medication and diet.

We used fewer opiates and more anti-inflammatory medications. Opiate-based pain killers cause constipation which require more of a liquid diet. I was on solid food six hours after surgery. No problems. In some people opiates can cause withdrawal symptoms, including more severe depression.

We had no antibiotics after release from hospital, and would only use them if a fever was present.

Using only Motrin and experiencing only a slight increase in pain from opiates (I have had to major surgeries, unrelated to PCa when I was younger) I was able to eat solid foods as desired.

I was also authorized to lift light weights, using up to 10 lb. dumbbells. Hernia is a concern here. I found 8 pound dumbbells comfortable. I'm also encouraged to stretch.

Two weeks after surgery I feel close to normal. Perinium swelling has gone down, and pain is minor. I walk 4-8 miles a day at a very fast pace, look forward to steps and stairs, and lift light weights three times a week.
y

by OBB

Walk.
No one mandates that your walking be all at once. Two laps, one in the morning and one in the afternoon, will do you as much good as two in the morning and be easier on you.
Two pairs of underwear can work as well as a pad when leakage slows down and can help your psyche because you are off pads that much sooner.

He's my list.
1) Never tuck your undershirt into your briefs if you are wearing pads. It will inevitably touch the pad and wick up onto your abdomen.
2) Always, always make sure the pad is stuck firmly to the bottom of your underwear. If it ever folds over, the sticky side will firmly attach to your "naughty bits" resulting in a painful Argentinian Wax job (Similar to a Brazilian Wax job but lower.)
3) Incontinence and ED have never killed anyone. PCa has. Just do it!
4) Even though your wife says it is ok to walk around the house in your underwear dribbling pee, It's not. Try to look as normal as possible.

And finally for the Single guys.
5) Don't be discouraged. There are plenty of women out there who want a loving relationship without all the mess. Stay clean, healthy, and flexible, and you'll move to the top of the list.

Jeff

I got a couple more.

1) Exercise and get in shape BEFORE the surgery. It will never be easier. Think Rocky - only you're fighting for your life.

2) Carry a pee pad in your shirt pocket as well as your pants. When you drop trou' in the the stall, you'll only be able to reach the one in your shirt. Reload with the spare you have in your pants.

3) When you wear a diaper, lined with a guard, with a half Poise pad boost, you present quite a handsome package for the ladies. Don't feel guilty about it. They've been stuffing their undies for centuries. Now it's your turn.

Remember #1 You've got a few months between diagnosis and doing something about it. Get busy. Forget about your lawn, your cousin's house, and all your sister's problems. You just became your #1 priority. (But don't forget about your wife - you'll need her support more than you can ever know.)

Jeff