James C started a very useful thread about "Things I wish I'd known before surgery etc" to which many of us have added our thoughts.
I decided to combine all the info and suggestions from it into one list with the various things grouped by topic. And after consulting with James he initially arranged for this to become a sticky thread so that it stays at the top of the list. (So thanks to James and Peter for that). Now it is just one of the many threads in the main sticky thread at the top of the page.
So, to be quite clear, the original author of the following is actually many of the guys and gals who post here and not just me.
Feel free to suggest more tips etc., as I want to try to expand this to cover things like Radiation Therapy and Hormone Therapy, but the bulk of this is about surgery.
I will try and put the additions to the origional version in italics.
note added October 2010. I have added an additional section about external Radiation Therapy (RT) at the end of this first section about Surgery
AlfredAnd please bear in mind that however good this this info may seem it has not come from medically qualified experts PART ONE (Da VINCI) SURGERY
This List is divided into the following topics.GENERAL POINTSASKING QUESTIONS and TAKING NOTESDOCTORS and HOSPITALS SURGERY -THE DA VINCI ROBOT OPERATIONPAIN MEDICATIONTHE WOUNDSHYGIENE BOWEL MOVEMENTS, CONSTIPATION, BLOATING, DIARRHEA, RECTUM, DIETEXERCISECLOTHING PLANNINGSEX, PENIS, ORGASMS, ERECTILE DYSFUNCTION (ED) M*STERBATIONCATHETERS, INCONTINENCE, URINE, PEE, BLADDER, PADS PSA MONITORING GENERAL POINTS
Check out the internet and the discussion groups/chat rooms on the net to see what everyone else has to say.
The HW Forum is one of the best places on the planet to vent, ask questions, help others, or just talk about
this horrible disease!
No two guys will have the exact same experience with surgery or recovery. Anytime you wonder why someone else’s experience is not the same as yours, repeat this line. Statistics are just that, statistics.
To some extent you will have to depend on luck.
You have to make an impossible choice.
You will have to put your faith in the hands of the doctors, surgeons, anesthetists and nurses.
Don't be fooled into thinking that "when the going gets tough the tough get going". It's not about
being tough, try being wise instead: the wise guy first makes sure he's going the right way, at the right speed, for the right reason, with the right information and has the right help! But yes does still get tough along the way.
You will most likely be dealing with incontinence and erectile dysfunction to some degree at some time depending on your age and condition. Incontinence and ED have never killed anyone. PCa has. Just do what has to be done!
PCa may cause sleepless nights both literally and metaphorically. You may get more tired more quickly and from less activity. You may not always be content or in a good mood.
Prostrate removal, even if done through small incisions, is major surgery. It will take your body months to recover completely.
Recovery from surgery seldom moves in a straight line. Expect both lack of progress and sudden changes.
Many strange men and women will observe and handle your private parts. They will insert things and take them out. Leave all modesty at home. You will experience unfamiliar things at every turn. That is not a problem; the PCa is the problem.
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 partner - you'll need their support more than you can ever know. It is best to go through this experience with a loved one for support, help and understanding.
The psychological impact of this disease cannot be underestimated. Don’t forget about
the tricks that Cancer plays on your mind. You may be so busy thinking about
PCa, the treatments and side-effects that you may forget all kinds of everyday things like names and phone numbers or the date.
Post surgery depression is a very common after effect, so don't get down on yourself if you have it.
If you are worried about
anything don’t become disheartened just call your doctor or ask for help from say the forum.
You may find it difficult to relax. Music may help especially if you can’t sleep properly.
Don’t try too much too soon, but still have goals. Start by getting out of bed with assistance. Then stand, then walk. Then get out of bed without assistance, then walk to the end of the corridor, then etc.
Don’t forget your general health. Don't concentrate so much on the PCa that something else creeps up on you unnoticed. And make sure your urologist and any other specialists are coordinating. You wouldn’t be able to have a colonoscopy, for example, for many months after the surgery due to thinning of the rectal wall.
You will be given the okay to return to work at some time after surgery perhaps as soon as two weeks, perhaps longer.You may have to press the docs to treat the patient and not just the disease. And you may have to be your own advocate for treatments.
Expect some let-down for months, to years, after surgery – you’ve gone through a life-changing experience and it will take time to focus on what you *can* do instead of what you *can’t* do. Things will get better – just not on the schedule you would like.
At some future point you may feel differently about things when compared to what you felt at the time. And you may even be confronted by a realization that you didn’t actually fully appreciate what you were being told.
Consider the possibility that it may be just as hard or even harder for you partner to deal with you having cancer and having treatment.
If you lead an unhealthy lifestyle, have an unhealthy diet etc, then correct it yourself; doctors know it makes a big difference, but some doctors may not wish to be judgmental about your past choices.
The whole business may be quite humbling and have life-changing consequences about how to deal with all things be they large or small. ASKING QUESTIONS and TAKING NOTES
Make a note of questions and answers Especially test results.
Make digital copies. Save things on a memory stick.
Consider tape recording what the doctor says to you. You may be too confused by his news to remember everything he says. Take someone with you to the appointment to be able to check with them afterwards what was said.
Get printed copies of test results and lab reports. Don’t hear 0.1 when they say 0.01. The language used is all new to you so when it’s written down it will make it a lot easier to look for things on the Internet etc. You have to learn in a week what a PhD in pathology learns in four years.
Have a notebook and pencil with you to write down things even write down the name of every nurse or doctor who treats you and all the medications you are given.
Keep the useful information and data in book or a file or somewhere easy to get at. DOCTORS and HOSPITALS
You are required to put complete faith in a whole bunch of total strangers and trust them with your life.
Make sure you get at least one additional "second opinion". Making the effort, and it is an effort when faced with the enormity of PCa, will pay off in more ways than one. With a second opinion, you have a choice. Having choices makes you the "master of your own ship". Being thus gives you a measure of comfort and a sense of control.
If your doctor doesn’t know about
the diagnostics tools 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, then consider changing to one that does.
Doctors, as good and professional as they all are, are not perfect, and technology is moving at light speed. Try and find out from others who have been treated by the same doctor and about
the doctor. (Google will find most of these). Bottom line is make sure you are getting good advice from a Dr. that has done 200 or more procedures and has access to the latest technology.
Make sure you and the doctor are communicating and that you are not just listening. They have given the explanations many times before, but you are hearing them for the first time.
It starts with a complete stranger sticking his finger way up where the sun don’t shine. This will happen on numerous occasions. That’s not the end. Other strange mechanical biopsy things get up there too.
Biopsy experiences vary. For some it was not a big deal. For others it was worse than the surgery. Check what’s going to happen and when.
You may get asked to fill out questionnaires regarding your situation, your urinary continence as well as your erectile function. Your input will help others.SURGERY -THE DA VINCI ROBOT OPERATION
Before the operation you will get a major body shave.
You may want to shave some extra bits yourself such as the backs of your hands where the needle/tape goes on for the IV line.
Having smooth thighs will allow you to attach and remove the catheter adhesive Velcro holding device with greater ease and if you alternate thighs you have less of a risk of jock itch and less of a risk for skin irritation where the adhesive has been stuck.
ONE PERSON reported that after discovering he was pre-shaved on day of surgery, they POSTPONED the surgery! Be sure to ask your surgeon if it is OK to do so. A postpone is highly unusual but you don't want to be that 1 in a million!
The operation lasts two to four hours and the hospitalization usually lasts 24 hours. Some patients go home the day of surgery.
To help combat the risk of DVT (deep vein thrombosis) during the long operation, you legs will be adorned with stretch stocking from toe to groin.
If you elect for the robot surgery, you will usually be sedated in the pre-operation area and when asleep will probably then be moved to an extremely strange room, practically up-side down, with your body pumped full of gas, and cold steel arms rooting around in your innards, while being manipulated by a guy across the room sitting at a video game console.
You will be packed in foam padding etc and placed with your head below your feet at an angle of 45 degrees. This is so gravity can help move the intestines etc away from the operation site. A side effect of this position is the extra blood flow to the head, so warn your partners that after the operation you might have a very red and swollen face, nose or lips. It goes away after a few days.
The CO2 gas is pumped into the abdomen to blow it up to make space for the surgeons to see. Some of this gas will remain trapped in the abdomen after the operation. During the first week this gas will migrate through your body towards the tops of your shoulders while it is being absorbed, you may even be able to sense hundreds of little bubbles just under the skin above the ribs. This gas can cause shoulder pain, especially if you do not walk about
enough. Instant heat packs on the shoulder can also help relieve this pain.
During surgery all patients have a catheter put in place to continually draining the urine into a special leg bag. The catheter stays in for a minimum of 5 days so you are likely to go home with it.
Consider asking someone to take notes for you after the operation (or even photographs), the anesthetic may have a long effect on you and you may forget some things that happen in the period immediately after the operation even though people think you are awake. For a week or more after surgery, you may have night sweats that soak the sheets. PAIN
Remember you have had major surgery, if things hurt tell someone, they should be able to give you pain killers to make the pain go away.
Talk to your surgeon about
opiates. Opiate-based pain killers cause constipation which requires more of a liquid diet. In some people opiates can cause withdrawal symptoms, including more severe depression.
Pain in the testicle(s) may linger for months.
Perineal Pain (pain between your rectum and scrotum) is normal but contact your doctor if the pain medication does not alleviate this.
In the first weeks try carrying a small cushion around with you. Then every time you think you need to cough (or laugh) hug it to stop your abdomen hurting.
In the first weeks following surgery sitting may be painful. Some find relief in an inflatable doughnut cushion or a recliner.
CONTACT your doctor or the hospital IMMEDIATELY if you are experiencing any of the following symptoms after the operation:
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
Any signs of infection (e.g., oozing, warmth, pain) or tissue damage in the affected area. MEDICATION
You may be given a lot of medication e.g. pre op, anesthetic, pain relief, anti nausea etc (double) check you are not allergic to any of them.
If normally on medication, then check when you have to stop it before the operation and when you may resume taking it after the operation.
Do not drive while taking pain medications.
By some jock-itch cream. If you need it you don't want to discover at midnight that you wish you had some.
Get and use a good lubricating gel for the catheter, and ask for an rx of cortizon cream or ointment for the tip of the penis while the catheter is in. Zinc oxide cream works well and can be found at any pharmacy. Or even KY type lubricant
ion for burning urine after catheter removals if needed. 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.
Antibiotics will be prescribed when the catheter is removed. This may start the day before and continue for 5 days.
It may take several weeks for your body to process all the medication given to you for the operation. THE WOUNDS
You will have 4-6 small holes in your abdomen through which the robot arms are inserted to perform the operation (and one big one by the navel). You may be stitched or stapled or have Steristrips (small pieces of tape) and Band-Aids over them. Band-Aids may come off in 48 hours. Steristrips may also come off as early as 48 hours post-surgery or they may stay in place until you are seen in clinic. Watch out in case you have an adverse reaction to the adhesive.
Once your dressings are off, it is not uncommon to have a very small amount of drainage from where your dressings were.
Bruising around the incision sites is not uncommon and should not alarm you. This will resolve itself over time.
The swelling of the penis and scrotum after surgery may be massive and in Technicolor. You may 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. HYGIENE Infections can really mess up your recovery so raise your game when it comes to personal hygiene. Be much more thorough about what you clean and how your clean it and how often you clean it. This really is a time when you need to stop picking your nose. (And an infection may not just appear at the wound in the skin, it may show up on the inside and make you really ill.)
Shower very thoroughly with a disinfectant soap in the 24 to 48 hours before surgery.
Don't take baths after surgery until your wounds are properly healed. You don't really want to soak open skin in dirty, warm, bug-infested water do you.
You should be able to take a shower 48 hours after surgery. If you've enough space so that it doesn't become an obstacle, then a plastic chair to sit on in the shower can be handy. And get your partner to help you wash.
Keep your hands clean after the op when looking after the wounds and your penis etc. Use disinfectant soap or gel. Carry personal wipes if you’re out (many feminine brands come individually wrapped and are easier to carry)Wash your hands before you change catheter bags etc as well as afterwards
Try using "rinse-free" liquid soap. Especially useful for cleaning the area around the catheter without getting into the shower.
Use a non-deodorant soap for washing the already delicate genital area.
Purchase a lot of white washcloths that can be laundered at a high temperature. Hospitals can have a lot of sick people in them, wash your hands when you go there for all appointments. Make sure visitors/partners wash their hands too.
BOWEL MOVEMENTS, CONSTIPATION, BLOATING, DIARRHEA, RECTUM, DIET
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.
After prostatectomy the rectum is thin, delicate, and at risk for injury for at least three months after surgery.
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.
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.
If you don’t have a bowel movement 24 hours after surgery, try taking Milk of Magnesia as directed on the bottle.
Your first bowel movement may not occur until 4 days and this is normal.
Fight the urge to squeeze. Read a book or magazine, or whatever but after 10 minutes you might just pass gas, which is okay.
For constipation post surgery drink prune juice, or eat some prunes, plums, grapes to help with keeping everything soft and moving.
You may make a bowel movement easier by putting a bit of Vaseline on some toilet paper and spreading it about in and around the "hole".
If you are taking antibiotics, follow each dose with some yogurt containing active cultures to replace beneficial bacteria in your stomach and avoid diarrhea.
If you have any pain around your rectum, or have blood in your stool, see a doctor sooner rather than later. Don't assume it's just hemorrhoids that will heal by themselves.
It may take a few days before you are limber enough to clean your own backside
Painkillers can cause constipation.
Try elevating your feet on a small stool when you have a bowel movement, (Or rent or buy a Toilet Seat Commode it goes by lots of names) or using Anusol cream, and increasing the fiber and water intake in your diet.
Walking will help restart the bowel system and relieve constipation after surgery.
This cannot be emphasized enough. The better shape you're in, the easier you recuperation.
Start exercising BEFORE you go in for surgery, preferably a year or two before. It will never be easier. Think Rocky - only you're fighting for your life.
Do not sit in one place for longer than 45 minutes at a time. It is good for you to walk around. You can do as much walking and stair climbing as you can tolerate. Absolutely no biking, motorcycling, or horseback riding for 4 weeks.
Walking can be boring. Make goals for yourself. Buy a pedometer to know how far you go each day. Vary the places you walk to. No one says that your walking had to 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.
They don't tell you why you need to walk and stretch. Surgery inside the abdomen can affect the internal organs and muscles, causing adhesions (scar tissue sticking together). They can delay full recovery and may require further surgery.
Don’t exercise too much when the catheter is still in you or do too much too soon at the beginning. If you walk quickly or jog with the catheter in the balloon will bounce about inside you and cause irritation and unpleasant sensations etc.
Hold onto something like a door frame or chair when doing those initial gentle stretching exercises.
When getting out of bed just after the operation, make it easy for your abdomen by doing it the way very pregnant women do. Lie on your side with your knees just hanging over the bed then push your upper body to the vertical using your arms and let your legs swing down to act as a counterweight at the same time. Then pause in the sitting position, then stand.
Get slip-on slippers with a nonslip rubber sole, not flip-flops. You won’t want to bend down to tie your laces.
Take loose fitting pants such as drawstring sweat pants, jockey brief underwear, and a loose fitting shirt to the hospital to wear home when discharged. Your abdomen will be distended and you do not want clothing that will rub against your surgical wounds.
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!
After the catheter is out wear Briefs, one size too small may hold pads better.
Never tuck your undershirt into your briefs if you are wearing pads. It will inevitably touch the pad and wick up onto your abdomen.
Sweat pants are wonderful and very comfortable but don’t make your crotch area so warm and moist that it causes jock itch. Shorts and fresh air are VERY important. Hip-Hop Pants from a sporting goods store such as Dick's or Dunhams that either snap or zip all the way up the outer side for the catheter.
When returning to work (and you are required to wear a tie), neckties and diapers simply don't cut it; the necktie will end up dipping in the toilet. Consider bow ties (there is certainly nothing wrong with being known as eccentric - it's a compliment in the South) and be prepared to respond to the inquiries that will surely follow.
You may leak, wet yourself or just dampen your undies, even if it is only a little. And Yes, this is embarrassing. It may help you feel less embarassed if it is less obvious so pick the colour of your clothes carefully. Pants with a pattern on them help conceal things as do darker colours. Black undies hide a lot. White undies may stain.
Get a haircut beforehand. You might not fancy either sitting in the barber's chair or chatting to him about how you are. And a short hair cut will also make it much easier to dry your hair after surgery when rubbing your head with a towel will really make things ache. Similarly Clip your toenails before the op.
Fit in an extra visit to the dentist before surgery rather than risk developing bad toothache the week after! An electric toothbrush is easier to use than moving your arm back and forth for two minutes.
If surgery is performed out of town arrange for a hotel stay for 1 week post-op.
Don’t drive yourself to or from the hospital. Take pillows for the trip home.
SEX, PENIS, ERECTION, ORGASMS, ERECTILE DYSFUNCTION (ED) M*STERBATION
It is possible to have an orgasm without erection even before treatment.
The swelling of the penis and scrotum after surgery may be massive and in Technicolor.
Your scrotum may get very floppy and loose
Afterwards, you will find out, horror of horrors, that there IS something that can actually make Willy an inch or so shorter. 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.
Your penis may also twist about or rotate along its own axis from time to time so that when you look down at it you may see it sideways on.
Willy is likely to go on forced retirement. After so many years of enjoying his company, you don’t know if he’s going to ever get back on the job. You may have to m*sterbate on purpose! And prod him with drugs, pumps, and injections.
The big 3 ED drugs aren't a cure-all, it still takes stimulation and interest to hopefully make it work. Consider getting some cialis, viagra and levitra samples from your doctor BEFORE surgery. Get them even if you have no problems in that area (yet). Firstly, you will find out if any of them work before surgery (if you are already fine, you'll be even finer for longer). That knowledge may save you money after surgery by choosing the right one. Secondly, leading up to surgery it is easy to get 'performance anxiety' and a little help from your C,V,L friends will get you thru it. Thirdly, it'll be fun to experiment with them – really.
Viagra, Cialis, Levitra, and other drugs are part of the penile rehab program, yet THEY ARE NOT COVERED BY INSURANCE to the degree required.
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. If you have any other questions or concerns then make an appointment for you to discuss this issue in more detail.
You will not have an ejaculate after surgery. This is known as dry orgasm.
You may or may not have Cowper's Gland secretion's (pre-lubrication), depending on the extent of surgery.
Use it or loose it, that also means m*sterbate for medical reasons.
You will find you may urinate involuntarily with an erection or urinate when having an orgasm. Be prepared and make sure you partner knows.
It will take time.
Single guys. 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.
CATHETERS, INCONTINENCE, URINE, PEE, BLADDER, PADS
You have to get your mind ready for the catheter. If you have problems tell someone.
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.
The leg bag can be strapped straps around your thigh, just above the knee or below the knee, but what matters is that gravity can do its job so the bag needs to be below the bladder ie below the end of penis.
The leg bag doesn't hold much you might prefer to use the night bag if say driving somewhere.
The night bag holds a lot: you may be able to sleep through without having to get up.
But bags come in a variety of sizes 400ml 500ml 1500ml 2000ml etc and even 4000ml
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 DOC if this persists without relief.
Be ready to need to have a prescription for bladder spasms and have it filled before arriving home after surgery.
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.
If bleeding continues for more than 2 weeks post op. report it to the Doctor and demand to be seem.
Bladder stones CAN form in less than two weeks while catheter is in (they are not kidney stones).
Change and rinse the bag for the catheter, to get rid of sediment.
Get tube of medicated (with some pain killer?) cream to use around catheter!
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.
If you want to remove the bag to have a shower you may want to use a catheter plug to seal the end (ask at the hospital if they can let you have one), some people don’t mind dribbling in the shower though. Inserting a plug can however cause a strange sensation from back pressure. But the whole idea of having the catheter in is to keep the bladder empty so a plug should only be used if the docs say it is okay.
With a catheter you do not feel yourself urinating, the urine simply comes out in a continuous slow trickle; it is as though it goes straight from the kidneys to the bag.
If you have bladder spasms this may make a little urine leak out of the penis.
Approximately one week after surgery the catheter will be removed. Ask the Doctor to do a cystogram prior to removing the catheter; in fact demand it, if it is not already part of that Doctor’s routine.
A cystogram (an x-ray of your bladder) will show if enough healing has occurred in order to remove the Foley catheter. Most men have difficulty with urinary control at the beginning and will require some form of protection, so take suitable underwear and pads to this appointment.
Removal of the catheter is tingling rather than painful. It should only take a couple of seconds. It may be easier and more comfortable if you are almost standing up when it happens and if the balloon inside you is emptied slowly. They should put some clean-up material on the floor
You will have to take antibiotics after they remove the catheter to help stop you getting a bladder infection (they do not work while the catheter is still in place).
Once the catheter is removed expect frequent trips to the bathroom, and if you don't feel the urge make sure you go to the bathroom hourly
Old and new blood will appear in your urine for maybe months after catheter removal- this also is normal unless bright red and copious.
Almost everyone has incontinence to some degree. A normal healing period is three to six months. It's caused by trauma to or removal of the internal sphincter at the bladder neck during surgery, loss of the urine retaining effect of the now absent prostate, and to some degree, trauma to the external sphincter. The latter is strengthened by Kegel exercises which are beneficial to regaining continence. The stages of recovery of continence start with staying dry at night, then dry sitting, then the ability to retain urine during a short walk, then longer walks, then during exertion. Depending upon to whom you listen, 90-95% of patients regain continence within a year. The process of recovery is not linear, but involves some advances then some regressions.
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.
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.
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.
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.)
Prostate removal can cure years of difficulty urinating, allowing you to push the scent block halfway up the urinal back. Some people experience a weaker stream at night.
Carry a pee pad in your shirt pocket as well as your pants. When you drop your pants the stall, you'll only be able to reach the one in your shirt. Reload with the spare you have in your pants.
Keep extra pads in the glove box in each vehicle you use.
When you wear a pad, 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 underwear for centuries. Now it's your turn.
Once you get to the stress incontinence stage, you can cut your large pads into thirds and use them to catch dribbles. The extra-thick Hanes brand (think the Michael Jordan commercials) will work in place of a pad for stress leakers, usually.
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.
You make leak urine after urinating, so give yourself extra time in the bathroom.
You may leak a lot more when standing still, than with walking.
You will go to the supermarket and a hot little checkout mama slyly smiles at you. Whereupon you pass her a big package of male incontinence pads.
You will find yourself in conversations, possibly with someone you don‘t know, smiling serenely, while taking a massive piss in your pants.
After treatment you will have regular checkups every few months to measure your PSA level to see how effective the treatment has been.
They use the PSA level to look for evidence of recurrence or re-growth of the tumor.
When the prostate gland is removed the doctors 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. Further tests are likely to be needed and additional treatments such as radiotherapy may be required.
There are different sensitivity PSA tests, and their results can scare you if you don't understand that. If in doubt double check your results with the doctor especially if they were given over the phone - there is a big difference between 0.2 and 0.02
Good luck everyone
PART TWO - EXTERNAL RADIATION THERAPY
This section is about External Radiation Therapy, Internal RT involves the implantation of pellets/seeds and I will try to add another section about seeds, one thing to remember is that seeds may also be used in conjunction with external RT.
As with the section about surgery this section is a compilation based on the experiences and wisdom of many of the folk here. It is partly to mention things the docs don’t really tell you, and partly to explain some of the things they do tell you but do so in a less formal way. Radiation Therapy comes in many forms but for most of this section I have used the abbreviation RT.
However: remember we are not experts, so always ask a doctor or other qualified person about anything you are worried about.
So what do the guys at HW have to say about it:
# You may encounter the following abbreviation that TC-Las Vegas mentions at this thread:
EBR - external beam radiation
EBRT - external beam radiation therapy
EXBT - external beam therapy
EXRT - external radiation therapy
IGRT – image guided radiation therapy
IMPT - intensity modulated proton therapy
IMRT – intensity modulated radiation therapy
PBRT - proton beam radiation therapy, or also, prostate bed radiation therapy
PBT - proton beam therapy
RT - radiation therapy; also: right side
SBRT - stereotactic body radiation therapy
SRT - salvage radiation therapy
WPRT - whole pelvic radiation therapy
XRT - external radiation therapy
# In some countries Radiation Therapy is also called Radiotherapy
# External Radiation is produced outside the body by a machine and turned into a beam like very powerful x-rays that can be aimed shaped and focused on a target area.
# External RT may be used as a primary treatment, in which case they may also be used in conjunction with seeds. Having RT as a first step may be because you chose not to have surgery or because the surgeon doesn’t think it will be possible to remove all the cancer surgically, as the biopsy scans they have done show that it has already clearly spread beyond the confines of the prostate.
# External Beams also get used as a secondary treatment.
# Secondary treatment using RT may happen right after surgery because they find something during surgery or during the post-op pathology that tells them that it is very likely that there is still going to be some cancer in you even though the prostate has been removed. (This is Adjuvant RT). But even if they say you need Adjuvant RT, they should still give you’re a few months to recover as much as possible from the surgery.
# RT may be used several months or years after surgery if your PSA level goes up too high for too long, which is seen as an indicator that the PCa is back. (This is often referred to as a BCR which stands for Biochemical recurrence) This use of RT is called “Salvage Radiation Therapy”.
# If you get kicked out of the Zero Club you’ll probably be given RT.
# Whatever the reason is for you having RT the way it is done is basically the same for all of them.
# It involves you lying down in a room with thick concrete walls while a machine moves around you.
# RT takes several weeks
# One session of RT takes about 15 minutes, so you’ll probably be at the hospital for at least half an hour.
# The beams do not make you radioactive.
# The radiation doesn’t kill the cancer cells. RT messes with the DNA in the cancer cells so that things go wrong when they try to grow and replicate themselves and they die off.
# RT does damage tissue, so scars will form in you when any damaged tissue heals (If you have RT as a primary treatment the prostate basically gets turned into a lump of scar tissue and this is what makes it so tricky to have surgery later if you use RT first.)
# RT is used to treat the cancer, but an area slightly bigger than the cancer obviously has to be treated rather than one slightly smaller. So some healthy tissue will get damaged as well, this is one reason for the side effects.
# With or without a prostate the target area is right next to your bladder and your bowel. This is why the collateral damage can be a problem.
# The docs need to work out where to aim the RT, a key part is to do a 3D CT scan of the area where your prostate is or was to map out your internal anatomy.
# The CD Scanner’s measurements only make sense if, like any map, they have some fixed reference points to work from. To provide some fixed reference points they will make three, or perhaps five, tiny little tattoos on your skin. Lasers fixed to the walls and ceiling are connected to the CT scanner, the lasers line up on the tattoos and then the images can measured accurately from them. Small metal pellets the size of a pinhead may also be taped over the tattoos for the scan as these show up very clearly on the images. (The metal markers are removed after the scan) The exact location of the tattoos may vary but typically they will be in the middle of your triangle of pubic hair and on the left and right near your hip joints.
# The tattoos are really tiny and a few weeks after RT, when you don't see them in use every day, you may even have trouble finding them. The tattoos should all be about where the waist of a pair of Speedos would be, so only your partner is ever likely to see them!
# Ultrasound may also be used to help verify the location of the bladder and target area before a session.
# An advanced technique to help get the RT in the right place involves placing (gold) markers inside you to act as even more accurate reference points. To be able to detect these markers the treatment machine includes a CT-scanner which is used before each session to locate the makers and tell the apparatus where to aim.
# The RT treatment room has similar lasers fixed to the walls and ceiling. The operators line your tattoos up with the lasers and then the machine is programmed with your details to measure the right distances from there to aim the beams.
# Your ID or details should be checked before each session starts to make sure the right person is having the right dose in the right place. You may even see your details on a computer screen next to the RT machine.
# During RT the operators may also make lines or circles on your skin with marker pens - this will wash off a few days afterwards, but it will also rub off on your clothes so wear dark colours!
# The idea of RT is to damage the "bad" tissue where the prostate used to be so, if all the RT was aimed from one direction, then all the healthy tissue en route to the prostate bed would get as damaged as the target area. Therefore instead of this several beams are aimed in from several directions so that only the area where they intersect receives the full dose (if they aim from 7 directions then the healthy tissue only receives 1/7th of the dose) RT thus takes several minutes as the machine has to keep moving round you to aim from these different directions. The machine also has to be in the right place thus each session will start with them lining up your body and this is where the tattoos get used. They should also take regular 2D CT scans (effectively an x-ray) prior to a session to check that things inside tyou are still where they were when the treatment plan was made
# The docs need to know your full medical history to be able to treat you properly. There is obviously a limit to how much radiation a human being can be given. If you have previously had RT to the head then they should be able to subject your abdomen to RT without there being a problem, but if you have previously had RT to the Abdominal area you may already have had all the RT allowed. Beams get reflected and distorted by objects and if they do they may harm healthy tissue, so make sure the docs know what is inside you eg stents staples wires etc from earlier surgeries including an RRP. (These bit of metal etc should show up on the CT-Scan but better to tell them than to think they will notice everything)
# Doses of RT are measured in Greys (Gy). Not everyone has the same amount of RT and your dose may be anything between 60Gy and 80Gy. Check with your docs why they have chosen to give you your particular dose. It is dangerous to give this kind of dose all in one go so it is split up into a number of smaller doses hence the need to go in every day of the week for several weeks as you will only get about 2Gy per day. (This is how treatments work: think in terms of the damage you’d do to your body if took twenty Tylenol in one go to deal with a pain rather than taking three a day for a week)
# The daily dose of 2Gy is also split up into several smaller doses. (e.g. 5X 0.4 if you are getting is delivered from 5 directions)
# To deliver the beam from many different directions the machine rotates around you and pauses in the specified positions for a minute or so to deliver each fraction of the dose. Exactly where it stops depends on the position of things inside you as they try and find a direction to aim from that will not harm you.
# You need to have a full bladder for RT to keep things in the right place and protect healthy tissue. Thus about an hour before your session you need to have a pee and then drink about half a pint of liquid and not then have a pee till afterwards. So if you think your bladder is not full because you did have to have a pee, then tell them to delay your session for 20 minutes or whatever it takes for things to fill up.
You should also be told about filling your bladder this way before the CT scan is done. The CT-scan is used to plan where the beams are aimed, thus your bladder should be the same shape and size during RT as it was for the CT scan.
# Your bladder is likely to be very full by the time each session has finished. So watch out when you sit up and stand up to get off the table. And make sure you find out beforehand where the bathrooms are in the hospital.
# If you think your bladder is, or may be, so full that you may be going to pee or leak in the treatment room before you can get to a bathroom, then tell them and they can put an absorbent pad/sheet under you or have a “bottle” ready for you to use.
# You will almost certainly need to pee on the way home from RT so reconnoitre your route to locate restrooms. Your bladder may start acting up, so may want to have a large-necked bottle in the car, or wear pads if you do not do so normally
# If you for some reason have a catheter in when you have to have RT this may make things complicated as it will clearly mean that your bladder is always empty when you are meant to be full. One option may be to clamp the catheter shut so your bladder can fill up with pee, another may be to clamp the output arm of the Y shut and inject a sterile solution into the bladder via the input arm of the Y. Discuss this very carefully and thoroughly with the doctors. Don’t let them give you RT with an empty bladder.
# RT should not hurt when you are receiving it - if it does tell the operators/doctors and get something altered, don't just lie there thinking that it's meant to hurt. That is not to say that after a while you may not notice an ache inside you as the RT starts to do its job, but even this ache is something to mention to the doctors.
# During your treatment you should be seen by a doctors at regular intervals. They don’t have much to tell you at this stage, this is about you telling them if you are having any side-effects. Tell them about any changes even if you think they are minor. If you tell them in week five that you are badly constipated it will make more sense if you told them in week three that you were slightly constipated.
# RT has side effects, (fatigue, diarrhea, bleeding, pain, incontinence, frequency & urgency, BM problems including incontinence. ED etc etc), but these side effects don't appear immediately the RT starts and they effect different patients to a different extent.
Some side effect may also not appear until many months (perhaps years) after RT has finished and may take a while to disappear. Sometimes there will be permanent side effects.
Tell the docs, nurses etc about any side effects, sometimes a simple remedy is available, but often there isn't.
# Radiation proctitis may result from RT (you have bleeding during BMs) Get a referral to a gastroenterologist. It's possible that something as "simple" as a few Mesalamine enemas, given at bedtime for about 4 weeks will deal with it.
# If you had side-effects from surgery such as incontinence, ED etc before you started RT, then after you recover from RT it is generally reckoned that things will only be about as good or bad as they were before the RT started. They are unlikely ever to get any better than that. (This is one reason to time your RT right.)
# RT may make your skin go darker at the points where the beam enters your body. (A bit like a sun tan) This may make your skin itch, so check with the doctor what creams etc you may use to stop the itching. You will want to be gentle when you wash and dry the area and it is also worth checking what soaps, body lotions etc you may use. (It’s best to use only a mild soap and no deodorants, lotions etc)
# The beams may affect your (pubic) hair growth. Hairs in the very small areas where the beam enters your body may look or feel different after a while and may even fall out. They should grow back, but it is possible that they do not.
# You may have to do a lot of travelling for seven or more weeks to get to and from your RT, the travelling may or may not make you tired depending on whether or not such journeys are part of your normal routine. But what you have to watch out for is the fact that the RT itself causes fatigue, so even if you live one block from the hospital you will still get hit by the fatigue.
# You may find it easy to drive yourself to and from the sessions at the start but not in the later stages, so have someone on standby who can help with the driving. Some guys have opted to avoid travelling during RT by stay with family or friends that live near the hospital. You may want to time your RT so as not to be caught up in heavy traffic on the way there.
# If you are working then you will need to plan your life/work etc around the RT or vice versa. Depending on what your work is and where it is you may be able to fit in RT before you go to work each morning. Or you may opt to leave work early and fit it in at the end of the day or take an extended lunch break to have RT in the middle of the day. But you will need to make some arrangement with your employer as hospitals only do RT during normal working hours.
# During a session of RT you have to lie very still and flat on you back on a hard surface for about ten minutes. This means Really still, so you can't even move your hand to scratch your nose. Your body will be positioned to the nearest millimeter and a cough or sneeze will make you move more than you imagine. So try not to catch flu!
# During the treatment session the head of the machine rotates all around you and you can see part of it, but resist the temptation to move you head to watch what it’s doing.
# The RT machine makes lots of whirring and clicking noises during your session. There are the motors and gears that make it rotate into the different positions, then assorted metal shields slide into place inside the head to shape the beam (This helps avoid directing the beam at healthy tissue. The generating of the beam itself also makes a humming noise (it takes a lot of power to make these beams)
# Make sure you can lie this still for this long. There is also a mental side to coping with staring straight up at the ceiling for 10 to 15 minutes. Do whatever helps you best: count the panels on the ceiling, close your eyes and meditate, time the session by counting in your head, Close you eyesIt will Find a trick to help you doing
# If you're not comfortable on the treatment table then ask for things like extra pillows under your head, legs etc, the operators will be willing help you as they don't want you to do anything that might make you move at the wrong moment.
# If you do move, or think you’ve moved, or think you’re going to sneeze or whatever, then call out or wave to the camera; the operators can stop the machine instantly and will then come back into the treatment room to set you up in the right position once more: all it means is that your session takes a little longer.
# Your whole body needs to be as still as possible and this includes your gut. You may therefore be put on a special diet or told to avoid certain foods so that your guts slow down and you make less gas.
# When you get onto the RT table it is about 2 feet off the ground, but it then slides silently up till you are about 4 feet off the ground. So don't try and get off when you are up in the air. When they are finished they will let you know when it is okay to get off. It is not like getting off a bed, there is very little space to roll onto your side etc, so if you need help ask for it.
# In order that the operators can see clearly to line up the machine you may need to remove most or all of your clothes below the waist before you get on the table and then pull up your shirt when on the table - there will need to pull down or remove your underwear to find the tattoos. Think about your clothing. Ask what you should wear, where and when you should undress etc. and if you should take a robe or towel to stay decent if you have to walk between a changing room and a treatment room. (You may meet the previous or next patient if it is a busy department.) You'll be doing it for several weeks so wear clothes/shoes that are easy to get on and off. (When you are feeling very tired at 5pm on a Friday after your 30th session you won't feel like bending down to tie your laces)
# As you have to be in exactly the right position the operators will move your body about on the table by pushing and prodding you a bit - so tell them if they have cold hands etc (it may not seem like a cold hand can be that annoying, but they will be touching your bare skin several times for several weeks. And they don't want you to flinch anyway as that will mean you have moved.)
# The operators can’t be exposed to the RT, so the machine is in a room with thick concrete walls, floor and roof, and, once they’ve set you up, the operators withdraw to a separate room where they operate the machines. However you are not really alone as they have close circuit TV and microphone to see and hear you. If you want them to stop (perhaps you need to sneeze) all you have to do is call out or wave.
# Some RT departments can be quite busy, so you may meet other patients at other stages of their treatment, and also patients with different cancers. Some cancer patients can look very ill, which may be upsetting for you and difficult to deal with, this is when it may be handy to have a partner, friend or relative with you.
# If you have a partner or someone closely involved with your treatment ask the staff if they can come with you to watch what happens. Like the operators they will have to leave the treatment room before the machines are switched on, but they will get a much better understanding of what you are doing and going through if they see it with their own eyes. They may even be allowed to sit in the control room during the session and see even more than you do.
# You should always be treated on the same machine, but clearly the machines need to have safety checks and maintenance carried out on them at very regular intervals (usually weekly). The checks are through and make take a whole day, thus either a hospital will not schedule treatments at all on that day or you will be put on another machine.
# Each day you should be seen by the same staff or group of staff, depending on how big the department is, but they will have their duty rosters etc and over the course of seven weeks you may therefore be looked after by a number of different people.
# You will be told when to turn up and you should be seen at the same time each day, but this is not always possible to arrange in the busier departments. If it is important for you to be seen at the same time each day ask for this.
# Because RT takes a while to disrupt the cancer cells it will also take a while for the effect to show up in your PSA levels. It is usually 3 months after RT before you will have your PSA tested again, and a PSA test at 6 months may be the one that gives a more accurate picture about what the RT has done.
# Fatigue is not the same as just being tired. You may feel just as worn out even after a long sleep or rest. You may find simple things like walking up stairs are ten times as hard. You may nap at any time of day. You may need to be careful driving. You may find it difficult to concentrate, think straight or remember things, and thus do your job. You may get short tempered.
# Your fatigue may have consequences for others, so tell them in advance that it may make you not your usual self.
# All types of Radiation Therapy may be used in conjunction with Hormone Therapy ( but HT requires a section all of its own to explain what it invovles
If RT messes up your bowels it can be a nuisance, this is a link to an English Cancer charities site with some useful information about what is to be expected and what can help make it better or worse.
And please remember that however good this this info may seem it has not come from medically qualified experts
Edited in April 2013 to alter the name-title of the thread
Post Edited (English Alf) : 4/15/2013 9:04:19 AM (GMT-6)