RADICAL PROSTECTOMY SURVIVAL HANDBOOK
Part 1 Part 3
Second Edition - 2000
The Partner's Perspective
This was submitted by my wife and best friend, Janet Olson:
Being the support person has its own challenges, so I thought it might be helpful to write a bit about my experience. As sweet as Ron is, I don't think he has the authority to grant me sainthood and I certainly am not a saint! Ron and I are just very blessed to have a close, supportive relationship. Even though he is the patient, this is very much something we feel has happened to US. As such, his support of me has been just as important as the reverse - the pendulum shifts back and forth. This also means there are times when both of us feel down and beaten; times when family, friends and support groups are invaluable. My hope is that this perspective, although it follows the same events Ron wrote about, gives you additional facts, tips, and things to consider as you or your partner faces RP.
One thing that soon became clear was how differently friends and family are
able (or not able) to offer support. For instance, my dad's response to the news that my husband had cancer was "Well honey, remember Arnold Palmer is doing great and if you need any money I'll write you a check." Ron's dad couldn't bear hearing the news and practically left the room while we were telling them that Ron had cancer. Now this is a man who would walk to the end of the earth for either one of us if he thought it would help, but, bless his heart, he can't face the feelings. Some friends can really listen to the "gory" details and others are stricken with terror as soon as they hear the "C"-word. I want you to know nearly all of these people found ways to be supportive although sometimes in a limited way. One lesson I learned was not to expect "full" support from anyone person. Each will do what they can. Try to diversify and find out who does what best and don't torture yourself with expectations. Unless someone has been in the same shoes they can only relate to the extent of their own experiences.
My Role as Partner
My job was handling the business end of things: scheduling doctor appointments, calling the insurance company, shopping for needed items. As the big day approached, I found myself getting quite distressed and very nervous. Two major things were happening. One, I was truly terrified. Although I kept telling myself to be realistic, I was afraid Ron would die on the operating table. I knew my level of fear did not match the true risk but I couldn't make the feeling of doom go away.
As it turned out, Ron was feeling the same way but we were trying not to scare each other. As soon as these fears were shared with each other, they became manageable. I want you to know these are very natural feelings. Do your best to find an understanding person to share them with.
The second thing was my increasing feeling that I wasn't prepared. I used my contacts and called people for answers to millions of questions and ended up with lists scribbled on scraps of paper all over the house and in my briefcase. These lists were very helpful but they didn't alleviate my anxiety. What I finally realized was that we could only be prepared up to a point. We had tried to be as prepared as possible and now it was time to face the unknown. My mantra became, "I must be flexible". I think it's important to know, that as prepared as you are, each individual's body, mind and soul are so unique that each person's experience will be too. Try to be confident in the great human ability to adapt and survive - you will, you just can't anticipate how before you're there.
A good piece of advice I was given was to contact the hospital's patient advocate office. Our hospital didn't have one (but yours might) so I got most of my information from Admitting and the O.R. Coordinator at our doctor's office. I asked questions about visiting hours, rules on partners staying overnight, parking, local restaurants, safety of the neighborhood, and what to bring. There were no specific rules for staying overnight although it was allowed if the patient was in a private room and the partner "behaved"! (The nursing supervisor has jurisdiction over this.). When investigating parking, be sure to ask about weekend and overnight parking. At UCSF Mt. Zion, none of the garages are open on Sundays and overnight parking is allowed but the garage is not open after 9:00 p.m. I was advised to bring toiletries, a robe, slippers, and books to read out-loud. My friend Kate, a veteran of hospital stays told me she likes to bring cologne to wear to help mask the medical smells and to cheer herself up. She advised bringing pictures of the family, not only for cheer, but also to demonstrate to the staff that the patient is a whole person, not just something to be prodded and poked!
Registration was done a week prior to surgery. We brought insurance papers, filled out registration forms, and were advised to consider completing a Power of Attorney form, which the hospital provided. I didn't really want to think about this but knew that this was good advice. It also gave us a reason to discuss and clarify Ron's wishes, which I admit had been rattling around in my head with those thoughts about dying. (Note: this form either needs to be witnessed or notarized; carry it with you while you're partner is in the hospital) I don't know if this was a particularly busy day, but this appointment lasted nearly all day, most of it waiting. An EKG was done, blood drawn, and x-rays taken.
This was also the time that we met with the anesthesiologist to discuss anesthesia during surgery and pain control afterwards. You should be given options for both. (In retrospect, Ron and I should have researched these options more carefully.) The nurse emphasized the importance of keeping the pain under control, explaining the scale that would be used (zero is "no pain", ten is "compelled to jump off the Golden Gate Bridge"). She counseled Ron on using the Patient Controlled Analgesic (PCA) to ideally maintain the pain level at three or less. She explained that over medication is not a problem because the patient falls asleep first. She also said sometimes the self-medication may not be enough, so to be sure to report pain that is escalating beyond a scale four. No tough guy act. (Knowing Ron, I emphasized this point many times during the hospital stay.) Patients use less pain medication when the pain is maintained at a lower level and avoiding severe pain means avoiding high doses of the narcotics and the resulting side affects such as constipation (something very important to avoid if at all possible).
One of the biggest challenges I faced was "managing" the family. Parents, siblings, and children all wanted to "be there". The role I had was "gate-keeper". Ron and I are both introverts and are most comfortable with one-on-one interactions. Suddenly I had seven very dear family members offering to be at the hospital with me the day of surgery! Although they all said, "we'll do whatever you need", I had a lot of guilt about telling people not to come. For very practical reasons, I'm glad I stuck to my "selfish" instinct to limit it to one person who I knew could best support me.
First of all, the waiting area was not large and it made no sense for one family to take up half the space. Since Ron's surgery was scheduled for 9:00 we had to be at the hospital by 7:00 a.m. He wasn't in his room until about 4:00 that afternoon. It really did not make sense to have a large group of people waiting in a high stress environment with nothing to do for nine hours! I did make a serious commitment to keep key people, particularly Ron's parents, posted on any news. In the end this worked well.
I chose my sister-in-law, Glenda (a former nurse who has become a very dear friend of mine), to keep me company and had her meet me at the hospital at 9:00, since I knew I'd be with Ron before surgery. Besides lending moral support, she was able to help me make calls to keep family posted (this is a big job) and run down to the cafeteria at the times when I was expecting news and didn't want to leave the waiting area. I made sure to ask the nurses and doctors exactly when I could expect news so that I wouldn't be unduly concerned if I was waiting for hours at a time. We were most fortunate to have a very caring surgeon who personally notified me that they were starting a half hour late, and sent out regular progress reports (we've started; the Iymphodectomy looks good; we've completed the removal, etc.), Glenda said this was VERY unusual, and I can tell you, no one else in that very crowded waiting room got progress reports like I did.
As Ron mentioned, we decided to request a private room (the estimated extra cost was $100 per night). This is one of those situations that required flexibility. I didn't know if he'd get a private room until he was out of recovery, and I wouldn't be allowed to stay unless we got a private room, which fortunately we did. I had a chair contraption that folded down to a small, flat bed and the nurses gave me sheets and blankets to use. Ron looked great out of surgery - a little swollen but good color. He was hooked up to: an IV with an electronic control, the Patient Controlled Analgesic (PCA) with a button for him to push to deliver the morphine; a special pumping device massaging his legs to keep the blood from clotting; and a Foley catheter. A Jackson-Pratt drain (a small plastic bottle at the end of a tube) exited the abdomen to the left of the incision to help collect excessive fluids from the surgery site. There was also a tube loosely fitted across Ron's nostrils that was delivering oxygen. The IV, massaging, and PCA monitoring equipment all make repetitive noises and sound alarms. These alarms go off for many reasons but most are just "please check" reminders for the nurses: change the IV bag, tube occluded or blocked; compression stockings not working efficiently.
In our case, none of the alarms were associated with a critical problem. The compression stocking machine continued to alarm for an hour or so despite the staff's attention and it was finally determined that the machine was not behaving and so was replaced. I asked the staff lots of questions about what they did and what they observed; this helped me know how Ron was really doing. For example I learned that an elevated temperature was expected and no cause for concern unless it exceeded 101deg;F (38.3deg;C); that the drain fluid is red like cranberry juice - ideally not bloody - and its volume reduces with time; that urine the color of white to blush wine is fine - again, ideally, not bloody; that all-over swelling is normal but should decline.
Ron had a sleepless and increasingly difficult night because of the dry, swollen throat so, consequently, I got two hours of sleep that night. Because Ron was so distressed, I was really glad I could stay with him through the next day; however, my lack of sleep made the day particularly challenging. Everyone thought the water Ron was allowed to drink at 6:00 a.m. would relieve his symptoms but it didn't. He had a hard time convincing the nurses and residents who saw him that morning that there was a real problem. We were told our doctor would be consulted but became very distressed when there was no news after three more hours. This is when advice Glenda had given me became invaluable: contact the nursing supervisor.
I was so tired, I cried as soon as the supervisor came to see me. Hearing her say, "Your husband needs relief' was was great consolation. Within twenty minutes our doctor was in the room, had asked the anesthesiologist to come double check things, and recognized that Ron was swollen. He immediately cut the IV fluid in half which soon solved the problem. If you need to escalate a concern, and I hope you don't have to, ask for the nursing supervisor. The nurses can call the residents or doctors when there is a problem or concern but, depending on the hospital and the staff, the communication and rapport is not always good. Glenda explained to me that it is the supervisor that has some clout with the doctors.
By 3:00 that afternoon Ron finally could sleep. Since he was out of distress, it
hit me how tired I was and I decided I should go home that night. I stayed for "dinner" then realized there was no way I could safely drive 25 miles home; so I stayed the
second night too. Thinking I should be there for each milestone (first time standing late that night; first real breakfast Saturday morning, first walk, ...)
I didn't leave the hospital until Saturday evening. By this time I was extremely tired and getting grumpy - not too helpful for Ron! I had made sure to eat regularly, take fresh air breaks, and call friends when I needed a diversion or to vent, but I had stayed too long.
In hindsight I realize that I should have made a distinction between Ron being in distress and needing me there, from the normal hour to hour recovery struggles. As a partner, it's impossible to be there every moment. I recommend a very candid discussion ahead of time as well as working out some ground rules. Try to decide what kind of support you both need and what's the best way to accomplish this - maybe a good night's sleep in your own bed will serve you better! The benefit of staying overnight depends entirely on personality, preferences, personal limits and circumstances. I encourage you to consider it, but do so carefully. You must take care of yourself or you'll be of no use to your ailing partner.
Since I know my husband better than anyone, I was in charge of deciding who would visit and when. Again I had to overcome guilt, but the bottom line was his comfort. It really helped that we talked about this ahead of time so I knew I was acting in Ron's best interest. I also had seen a very dear friend exhaust herself "entertaining" guests at the hospital.
In our case, no one was allowed to visit. Ron was far too busy dealing with new symptoms every hour, getting ambulatory, and discovering exactly what had happened to his body. This is where I demanded that family and friends be flexible. Again, this depends so much on personality and individual experience. Whether you need visitors or solitude, don't be afraid to establish ground rules that support the best environment for the patient. Ron's first visitors were his parents two days after he came home!
The previous few days had been so momentous, and having no previous experience staying in a hospital, I was surprised the discharge was so routine; I really expected fanfare! While I was home preparing, the resident had removed the drain and given orders that as soon as Ron had a bowel movement he could be discharged. Removing the drain can be painful and Ron was glad he had not given up his PCA until after the drain was removed. The doctor bandaged the drain hole and informed Ron that it closes up (without stitches!) in four hours, after which the bandage may be removed.
Several hours later the nurse brought in the discharge papers to sign; gave Ron his written prescription for pain medication, stool softener and catheter bags; briefly explained the limits on activity; and reminded us to make a follow-up appointment with the doctor three weeks hence. Ron was so anxious to get going, I don't think he listened at all; proof that an important part of my role was to pay attention to details and
Be aware that the ride home can be painful. The Pillow was a necessary companion - remember to bring it with you. It can be placed under the safety belt in the car and then the tension adjusted. If you can, try to time departure to match the point when the pain medication is at its most effective. I was worried about negotiating the five stairs to our entry but it wasn't too difficult and much less painful that we'd been warned to anticipate.
The first 24 hours were mostly spent in his recliner. Although he insisted on sleeping in his own bed, it probably wasn't the best place for the first few nights. Without the hanging bar of the hospital bed he could not adjust his position himself, so he needed me to assist by lifting his upper body for him. Since we are about the same size and I have a healthy back, this worked out okay, but it's certainly something to be very careful about. The last thing your patient needs is a disabled nurse! Although it was marginal at best, we used pillows to elevate his upper body. A towel roll under his knees proved more useful.
Although better every day, Ron was still quite swollen when he came home. This was noticeable to me in his face and hands. His stomach was extremely distended due to the gas problem and his penis was quite swollen, which is normal under the circumstances. By the end of the first week at home the swelling had subsided. The seven inch incision looked neat and well on its way to mending; a railroad track of two-inch semi-transparent paper strips helped keep the outer skin closed. Ron's surgeon used dissolvable sutures. He was told he could shower whenever he felt up to it and to just let the paper strips falloff themselves.
The first few days I attended him very closely - I was surprised he didn't get exasperated having me follow him so closely but realized this was a good indication that he really needed this level of care. As early as Monday (four days after surgery) he could move around the house pretty well, albeit slowly. I was able to leave for short errands but tried to be sure he was settled in his recliner while I was gone. We made sure to have the phone, TV remote, water, cranberry juice, and medication within easy reach of his chair. And always within reach was The Pillow and a blanket.
I had been advised to move everything he might need to levels he could reach (above the knees and below the chest). We also established a rule that should he drop something, I would pick it up. I served his meals on a tray that he rested on top of the pillow laid across his lap. Although the catheter gave him little trouble, sitting upright was most uncomfortable; a particularly annoying problem when he really wanted to spend time at the computer!
Starting the Long Haul
The day the catheter was removed was a very good day. We were thrilled with the reports and signs of progress. Progress slowed down a lot after that and it was clear we were in for the long haul. Some days, Ron looked so good, I forget how limited he was; I would start walking ahead of him; or forget to offer him a hand with something. Ron forgets how much - or little - time had passed between milestones and then felt like he was not making good enough progress or even that he was suffering a big setback. My role here was to give him realistic feedback: remind him of how many - or few - days he had a particular symptom; make note of how today was better than yesterday; affirm that being tired is truly reasonable.
As difficult as this journey has already been, and as unprepared as I feel for it sometimes, I can also say there have been many blessings. The Sunday morning that I was driving back to the hospital to see Ron, I was feeling pretty beaten. I felt guilty that I had let myself become so grouchy - and useless - the day before, that I wasn't better prepared for his homecoming, that I was starting to feel discouraged. In this state, how could I be helpful to Ron.
Fighting tears and depression, I approached the Bay Bridge and pulled out my dollar to hand to the toll taker. He said "the lady in front of your paid for you". It took me a second to comprehend what he said; I was stunned. That women had no idea how wonderful her small "random act of kindness" was to me. Somehow it did not feel so random; my spirit soared and consequently Ron and I both had a much better day.
We both prepared very hard for the surgery and are learned about coping with the recovery. Progress goes up and down and so did our moods. My wish is that all of us facing this journey somehow come out stronger. I wish you strength for the difficult road ahead and blessings -big and small - on your RP journey.
- - - - - -
The rest of the text is a compilation of information that was so graciously sent to me by friends on the Internet NewsGroups, Prostate Problems Mailing List (PPML) or, "The Circle".
These are excellent resources for additional information and support, besides providing the chance to connect with some beautiful, warm and caring people who have been and are going through this disease.
RP Side Effects
This information was taken from notes that Bob Southard took at a conference for patients, sponsored by the ACS and Man to Man on September 27, 1997, Philadelphia, PA
Management of Possible Side Effects of Treatments Dr. Gregory Broderick, Urologist,
Hospital of the Univ. of Pennsylvania.
The side effects of RP are:
Rectal injury --1 %
Bladder Neck Scarring --8-10%
Incontinence --8% that need further surgery
--nearly 100% that find some troublesome side effects
Impotence --data is all over the map. It depends who you ask, doctors or patients.
For incontinence, do Kegels first and foremost. Do these before and after surgery. Do these for the rest of your life. These also benefit the accessory muscles to the urethral sphincter.
This was sent to me by Scott Barker:
Somehow it really feels good once the decision is made and treatment is on the schedule. I've been through a few different treatments, but that good feeling is still there, following the decision, every time that I have to make a change.
Attitude is everything, and you certainly have the attitude for the course that you have chosen. Keep that sense of humor. You have probably have read a lot about the experiences that others have had. Don't be alarmed. Every incident is still just one thing at a time, and with your stats you can expect that RP will be the last that you need to deal with. I've gone through a lot of stuff, RP, appendectomy, chemo, pneumonia, broken bones, and now refractory PCa, since diagnosis almost two years ago. All together it is a lot; but experienced one thing at a time each is easily manageable.
This is from Geoffrey Bauman:
Some special things about a prostatectomy, however, you can start working on now:
1 - Drink cranberry juice. It's good for the urinary tract, keeps down infection, so I guess it's most important for those three weeks when you have the catheter in (but lots of people drink it regularly as a preventive measure, tastes pretty good too).
2 - Start doing Kegel exercises to get your sphincter muscle in shape. You can identify the muscle by stopping your pee in the middle. Do this a couple of times each time you pee, then you will be able to do it when you're not peeing.
3 - Your doctor will probably want you to "donate" two or three units of 'Autologous' blood for your surgery. Take iron pills. Actually if you are into this stuff, also take Zinc (good for healing) and the antioxidant vitamins (A or beta carotene, C and E).
I did a couple of things to "spoil" myself: bought a rocking chair for the deck outside our bedroom, I needed a pillow to sit in it the first couple of weeks, but now both Abby and I wonder why we didn't get one sooner. I like to read the newspapers so we got the New York Times delivered in addition to the Chronicle. The idea is to do something special.
This is from Jim Hornaday:
My doctor mentioned that I could set up a "self-directed"(autologous) blood donation program, so that I would get my OWN blood during surgery rather than somebody else's. Hey, I like that. No strange antibodies. No hidden diseases. OK?
I waited for my doctor to call me and tell me how and when I'm supposed to go to the blood donation place. Nobody calls. I start to think. I've got about 28 days before surgery, and I don't know whether they want one pint, or ten pints of my blood. No way for doing ten. Remember about 25 years ago when Li'l Abner (a la AI Capp's comic strip) got in the clutches of the vampires, and they sucked a pint a day out of him for a month and damn near killed him. Not ME, buddy!
Anyway, I had to call the doctor's office, and say "Why hasn't anybody from the local blood sucking organization called ME?" It was on the time edge. They really wanted three units. With MY PLANNING, I have now done the first draining and the remaining ones will be done in proper good time.
The common problems for consideration by other "new guys" like me are:
1 - stored blood is good for only 35 days.
2 - giving three units in 28 days drains the iron level in my blood to near white - no hemoglobin conditions.
If I hadn't called in, set up the schedule, and gotten an an iron replacement prescription, I WOULDN'T HAVE BEEN ABLE TO USE MY OWN BLOOD!
1 - Don't assume the doctor's office will do everything they should do.
2 - Be pro-active on whatever YOU feel is important in Pre-Op planning. Maybe it's been covered (by your doctor), and maybe it hasn't.
I know that when I was giving my Autologous Blood Supply, I really started to look forward to the cookies and juice afterward. Just a note about it though. About a half hour before you are to actually have those vampires suck your blood, drink a couple of glasses of water. It will make your veins easier to find and will help prevent a slowdown in blood delivery enabling you to get in and out more quickly.
I don't know if anyone will mentioned it to you, but the iron pills can cause your stool (not the one you sit on) to turn very dark, so don't be frightened if it happens. Kind of like after eating a bunch of Oreo cookies, but then, maybe you never noticed.)
This article was written by Aubrey Pilgrim:
Most treatments for PCa will make a man sterile and impotent. There are some men who are relatively young who are being subjected to these treatments. It is possible that some of these young men, and even the older ones, may want to have more children later. One way to do that is to store your sperm in a bank.
Some psychologists say that sex, not just the go-to-bed-for-fun type, but for procreation, is the strongest drive in man-also animals.
Sex for procreation is our one way to immortality. All of us will eventually die. But half of each of our offspring is us. Our genes are left behind in our offspring -the more offspring, the more of ourself we leave behind. As our offspring procreate, our genes live on and on and are spread even more.
Up to now, it may have been difficult to find a sperm bank. A short article in the Sept. (1997) issue of the Men's Health Magazine says that a Chicago Sperm bank offers a service called OverNite Male. They will send a kit to a person, the specimen can be collected and sent back to them in the special overnight container. The cost for the kit is $75. The initial freezing costs another $100, and the yearly cost to store the little guys will be $175. To order the kit, call (312) 996-7713.
The kit does not include a copy of Sports Illustrated swimsuit issue or Playboy- Some things you will have to do yourself.
(Editor's Note: Most urologist can probably direct you to a local agency where you can collect your sperm and have it stored. If not, you might try contacting a local fertility clinic. I have some stored a UCSF. There is a yearly charge for maintaining the specimens.)
These suggestions were submitted by Adrian D'Souza:
1 - Check your options, pray a lot and MAKE UP YOUR MIND. Do not postpone treatment, as you may later wonder if it would not have spread had you acted more quickly. It is easy to say that this is the slowest spreading cancer, but it WILL spread, different rates for different people. The treatment options are finite, not enormous.
2 - The biggest factor in long term, complication-free recovery is the skill of the surgeon. A surgeon who does this procedure frequently has got to be at least more familiar with it than one who does it twice a year. It's your body - ask how many times he did it in the last three months, six months, year.
(Editor's Note: I would suggest finding a surgeon who has performed this operation at least once a week for the past year)
3 - I found an exceptional book My Prostate and Me by John Martin that is written in simple layman's terms. Got it the day before surgery. It was the best thing that happened in those dark days. If you have relatively low PSA's, below eight, and modest Gleason scores, the book will be very reassuring for those about to go in for RP.
These were given to me by a Kaiser ICU nurse who I happened to meet in my barber shop.
1 - Just before you go to hospital for surgery, wash yourself very thoroughly with anti-bacterial soap like Dial.
2 - Stock up on Ensure (comes in small cans). It is easily digestible, tastes like a milkshake and is loaded with vitamins and proteins for quick recovery after surgery. I drank one or two cans daily between meals like a snack.
Some tips from me are:
1 - Do the obvious grooming things like a close haircut before surgery so you wont have to bother with that for another month when driving is difficult or verboten.
2 - This is a tip you [probably] won't see anywhere else. Before surgery, clip your fingernails really close! The painkillers used have the side effect of making your skin feel itchy and, doped up as you are, you will scratch. At least you won't hurt yourself as much with clipped fingernails. As soon as I learned that this was a side effect, I asked for, and received, a pill to counteract the itchiness. Tell your nurse, don't just scratch away.
Remember that you go into surgery not knowing whether you really will come out minus a prostate! The routine is that only after they open you up, can your surgeon get at the lymph nodes to see if it (the cancer) has spread. While you are open, the lymph nodes are sent to pathology. If they are clean, they remove the prostate. Otherwise, they close you up and tell you alternative treatment is called for.
After surgery you can tell whether it was successful. When you open your eyes and no one is there, the best way is to immediately feel around and see if there is a catheter exiting your penis. If it's there, rejoice! - your nodes were clean.
1 - You feel good as long as the spinal anesthetic is still dribbling in for the first day or two. Four to six hours after they pull it out, you feel like you've been run over by a bus! It IS major surgery.
2 - The next time for information is a week or so later when the pathology report on the removed gland comes back and it tells you whether the growth was entirely within the prostate (negative margins), penetrated the inner or outer walls, or whatever.
3 - Pulling out the staples (about a week later) was an experience more unnerving than painful because you know that you have 20-30, and you know that the doctor has at least twenty more to go after you've gone OUCH from the first two or three removals. Fifteen minutes later you've forgotten all about it.
4 - Similarly, the yanking out the catheter by the surgeon is an interesting feeling but not painful.
Lastly, all the above are nothing but the first steps in a long, long road, whose milestones are the PSA scores, which you will wait for, pray for, and rejoice in, if all goes well.
This was written by John Fistere:
Please send your comments and suggestions to: JFistere@cox.net
Contributors: Richard Trax, Jim Griffin, Jon Fonhof, Bob Southard,
Ed Price, Brian Taylor, Tom Largey, Jerry Bostick and Dr. Albert McBride.
Why do I have a catheter?
In removing the prostate, the surgeon also removes a section of the urethra contained within the prostate, and therefore must join the parts remaining. The catheter, called a Foley catheter, is there to allow the joined parts to heal without allowing an obstruction to develop. In other cases, such as removing prostate tissue via the urethra, the catheter is there to make sure it heals without obstruction. A catheter is used in a variety of instances in which it is necessary to maintain urinary flow. In some cases a suprapubic Foley is used, which exits the body in the pubic area, instead of via the penis
Why does the catheter have to be so large???
The catheter irritates the bladder, and may cause some bleeding. The catheter has to be large enough to allow the clots to pass.
What keeps the catheter in place?
The catheter has a bulb on the end which is inflated inside the bladder. That little extra tube is used to inflate and deflate the bulb which is the size of a golf ball.
Note: DO NOT attempt to remove the catheter without medical assistance, Injury can result.
How long will I have my catheter, and what is removal like?
Typically it remains in place for three weeks. For removal, the bulb inside the bladder is deflated and the catheter is withdrawn. The procedure is not even uncomfortable, and there is no pain whatever.
Since you will be incontinent initially, come prepared for the trip home. I have come to believe that I never needed an actual "diaper", Instead, there are pads held in place with straps over the hips, that provide plenty of absorbency, are easier to use, and look more like a "codpiece" and thus much more masculine!
What can I expect while I have my catheter, that should NOT cause concern?
1 - Pain in various parts of the urogenital system including the penis, testicles, scrotum, perineum, and lower abdomen. The pain will tend to move from place to place, often with no apparent reason. There may be an increase in pain in the urethra when moving the bowels. Pain can be "referred" which means it is felt in an area different from the source of the pain.
2 - Urine should be light yellow and clear, but may be slightly tinged with blood.
3 - From time to time clots may appear in the urine.
4 - A yellowish discharge from the penis. This may look like an infection, but is the normal discharge of the mucous lining the urethra when irritated by the catheter.
5 - Occasional urine discharge outside the catheter during bowel movements.
What are indications of problems that need medical attention?
1 - Urine as dark as red wine.
2 - Cessation of urine flow for more than 4-6 hours, associated with pain. NOTE: This also applies after the catheter is removed, when the risk of "retention" is greater.
3 - Spontaneous loss of the catheter. It must be replaced by a physician immediately.
4 - Infection of the urethra. Possible symptoms include cloudy and/or foul- smelling urine, low grade fever, excessive discharge around the catheter, unusual pain, and redness of the penis and possibly the scrotum. It is usually a fungal/yeast (candida) infection, and it can be handled with Lotrimin or Lotrisone Cream (which includes anti-irritant steroid). The former is over-the-counter, the latter requires a prescription.
5 - Lack of bowel movement. Constipation. What should be done to prevent problems?
A - Drink at least six 8-oz glasses of water in addition to the other liquids that you drink during the day.
B - Use enough laxatives or similar products to facilitate bowel movements. Metamucil, Citrucel, and prunes work, as do many others.
C - Drink plenty of cranberry juice. It has been shown to prevent bladder and urinary tract infections.
D - Keep the catheter clean where it leaves the penis. Clean hands and two- inch gauze pads are good for this. Make sure all dried deposits are removed since they can cause irritation.
E - Take your antibiotic as prescribed, using up all the medicine, including any refills.
What can be done to promote later continence?
1 - Do Kegel exercises frequently, such as groups of ten, six to ten times per day. The exercise should feel the same as what you do to interrupt the flow when urinating. There is some disagreement over whether Kegels should be done with the catheter in place. I believe the large majority believes in doing them with the catheter.
2 - Walk as much as much as you can, as early as you can,without getting overly tired.
What can be done to minimize discomfort?
1 - Circumcised or not, pulling the foreskin over the glans will provide some protection and minimize pressure on the urethra.
2 - Use any pain medication as needed and prescribed by your doctor. Do not take blood-thinning products such as aspirin.
3 - Make sure the catheter extension is properly secured. You may be sent home with only a tie to the leg for the plastic detachable part of the catheter. In such a case, tape the rubber part of the catheter to your leg, too, so that there can be no pulling if the tie opens up. The rubber against the skin can cause a rash, so put a piece of tape under the tube first.
Another approach reported to work well is a catheter leg-strap, available at medical supply houses, instead of the tape and tie. The strap is fasten around the leg with Velcro. The goal is to make it secure, with the right amount of tube loop for motion, and protected against external pulls on the catheter. It has been reported that a nurse once got her foot caught in the catheter tube. 0oooo! Ouch!
4 - Clean and lubricate the catheter. Lubricating products are of two types: aqueous gels like K-Y Jelly, and petrolatum based, like Vaseline. I hesitate to use Vaseline at first because I had heard that such products can cause irritation. However, I found that the aqueous products tended to dry up on the catheter and cause pain due to slight adhesion, and I found no irritation from petrolatum-based products. Aloe Vera has been recommended, and may not cause the adhesion found with the other aqueous gels.
Check with your doctor on which lubricants are recommended for your catheter. Some products may not be compatible with the rubber tube. I tried several products:
º A sterile K- Y jelly-like product in foil packages that I took home from the hospital. I believe sterility is not critical, however.
º Xylocaine 2% jelly (not the cream). This is Lidocaine HCI in a aqueous
gel. It is a topical anesthetic that works on mucous membranes, such as the urethra. It is a prescription item.
º Neosporin. This is a mix of antibiotics in a petrolatum base
º Vaseline. Pure petrolatum.
º Water and a little soap.
The technique that seemed to work the best for me (after cleaning) was to lubricate the catheter, as far up as could be done by pulling the penis back, with the Xylocaine gel, and then lubricating the external catheter with Vaseline or Neosporin. However, the results were not consistent. Often I never bothered with the Neosporin.
5 - The friction of loose clothing against sensitive skin can be quite irritating. Jockey type briefs (or a Speedo type bathing suit) worn all the time, or just when going on walks, can minimize this.
This is an excerpt from Robert T. Hitchcox' book, "Love, Sex and PSA " published in September of 1997. You may E-mail him at: Hitchcox@worldnet.att.net>
if you would like to obtain a copy.
The Great Catheter Escapade
There is nothing quite as disconcerting as waking up after surgery and seeing your penis all shriveled up with a garden hose coming out of him. Wouldn't you be upset too if you had a fire hose coming out of your mouth?
Actually the catheter is not very large; it just seemed so when I saw it the first time. Since the bladder never fills up, it never can tell you when "it's time!" It is
recommended that you have the catheter plugged in for twenty-one days. I heartily endorse this. I've heard about problems with men who only had it one for two weeks. Mine was in twenty-two days simply because my nurse Dee would not be on duty on the twenty-first day. But we're getting ahead of our story.
Catheters are attached to bags. You have your walking-around bag, a small 600 cc bag that is strapped to your leg. A tote bag, really! Golly, nobody would even know you had it on except
that 'except' is that the darned catheter comes straight out of your penis. Mine had a tendency to go out perpendicular to my body, i.e., sticking straight out. Now if this were a few centuries ago, I could simply wear a cod piece. Since you will be wearing a robe in the hospital on your "walkabouts", the protrusion isn't noticeable. However, when you get home and are wearing loose-fitting pants (a must), it could become more noticeable. Maybe you'll be lucky, and it will hang down. I got to the point where it was not too apparent and simply ignored it. Also, loose fitting shirts hanging out, not tucked in, help.
That 600 cc bag can fill-up pretty quickly because of your voluminous liquid intake which help get your systems back into operation faster. Be sure to check the bag every once in awhile. I got so that I could check the top of the bag with a brush of my hand. I learned that technique when it went to a full 600 cc one afternoon in the hospital. After that experience, I checked the bag frequently.
You will also have an overnight bag. You won't be packing it for a trip though. It attaches to the edge of your hospital bed or rests on the floor next to your bed at
home. This is a 2400-cc monster that can get downright heavy when near capacity. So be a little careful with this one. The hospital provides you with an adhesive device that has a Velcro fastener which holds the catheter. One trade name is Cath-Secur. This prevents accidentally pulling the catheter
which can be painful. I guarantee that you will only pull your catheter once.
From then on you'll remember to be careful. Be sure to find a source for the securing device before you go into the hospital. It may be hard to find. Many drug stores do not carry them. In three weeks you'll probably go through five or six. They tend to come off after a few showers. I suggest that you shave your leg in the area where you are going to plaster the Cath-Secur to your leg.
You'll learn all of the joys of a catheter. You'll learn the pleasures of changing bags from day to overnight and overnight back to day. Be sure to sterilize the tip of the bag intake and the catheter outlet. You don't want to introduce a virus or bacteria into your waste-disposal system. You'll learn how to work the disposal value on each of the bags. When I got home, I set up our guest bathroom with my various new toys.
The changing of the bags twice a day, morning and bedtime, becomes a carefully choreographed ritual. Here's the steps I went through:
1 - Preset the new bag for the exchange.
2 - Clean the tip of the input of the new bag where the catheter connects.
3 - Open the Velcro fastener on the Cath-Secur freeing the catheter outflow end.
4 - Firmly grasp the catheter squeezing it tightly so it won't leak when freed from the bag.
5 - Push the catheter off the bag-input connection with the thumbnail of your free hand. This prevents you from doing something stupid like pulling on the catheter, which can hurt like hell.
6 - Once released, attach the new bag to the catheter. Be sure to close the outflow valve on the new bag. It's really embarrassing to go leaking down the hall. Plus it is hell on the carpet cleaning bills.
7 - Thoroughly flush the old bag by opening the outflow valve and running warm water through the bag.
8 - Clean the tip with alcohol.
9 - Hang the bag up to drip dry.
Now doesn't that sound like a lot of fun. Remember this lasts only twenty-one days and twenty-one nights. Please be very careful in closing the outflow valve. Accidents do happen and the embarrassment can run high. Happily my only accident was at home. Carpet cleaning, as I said, ain't cheap!
Your bag changing room also a good place to put your diapers and pads. Of course if you have guests, the sight of a bag hanging in the bathtub drying or a large package of Depends and pads can be a bit disconcerting.
Finally the day comes when you can lose this important appendage. After twenty- two days I sorta grew attached to it (Pun intended). Since I wasn't driving (See Driving Restrictions). My chauffeurs of the day, Phyllis and Ed, carted me off to the clinic to meet Nurse Dee. Dee is a wee spit of a lass and as cute as a button with a smile that makes any procedure feel almost painless. Dee had me prepped to remove the catheter but decided to inflict one last moment of inconvenience. She poured an appropriate amount of water into my bladder.
Yes, the system was reversible. This was done to insure that my liquid waste disposal system was working more or less properly. Please understand that she would not let me leave the clinic until I voided at least 100 cc and would reinstall the catheter if I didn't! That is a real incentive program.
Just before she was to deflate that cute little balloon in my bladder, which was keeping this system operational, I stopped her.
"Dee," I said, "I have an old friend, a RN who instructed me on a foolproof method of removing the catheter."
"What is it, Mr. Hitchcox?" She asked. I had set the hook. Now this was actually related to me by a RN in one of her better moments of black humor.
"Well, Dee, please place your left breast in my mouth. NOW, REMOVE THE CATHETER VERY CAREFULLY."
It was several long moments before she regained her composure. She was still laughing when she deflated the balloon. I felt a bit of a nudge and it was out. Oh, joy. Now I had to be careful. I was bag less and had to learn to control myself. (See Penis- Part One ---Incontinence.) Dee gave me a maxipad. I now have much more compassion for the inconvenience of women's monthly menace.
It took me an hour plus before I had returned the 100 cc of water per Dee's direction. She then released me. I'll miss Dee. I'll miss her response to my awful joke.
A postscript to this little story. The next day at 8:30 a.m. Dee called me checking to be sure that I was voiding properly.
This is from Scott Barker:
Hang in there. I had an RP on 06 October, 1995. My drizzly days seemed as if they would never quit, but they did. First, here is a document that I found on Prodigy. It describes my recovery pretty well. That @#$%1\! catheter will stay out someday; I have had the thing four times now, in biopsy, RP, appendectomy, and during tests. Doesn't get any better, but sure feels great when it is gone!
One thing of note: The catheter that I had for a month was blue, made of silicone rubber and designed for long-term use. I was told, by the nurses, that petroleum jelly will damage the brown or yellow colored catheters, but you can use it to ease the discomfort on the silicone rubber ones. Better yet, use Neosporin ointment; it contains antibiotics and petroleum jelly. Fastening the tube firmly to your leg will help prevent irritation when walking. Lycra bicycling shorts have been recommended by others as a way to minimize irritating motion.
Don't let the catheter keep you from exercising, exercise is the key to early recovery. Watch your fluid input and output, and keep an eye on the color and consistency of the fluid going into the bag. Cloudy fluid could indicate a urinary infection. Uric acid crystals began to form in mine; it was a sign of a reaction to an antibiotic taken for a urinary infection. There is more information available from Prostate Pointers [Editor's Note: available on rattler, see Online Resources] regarding catheter care.
- - - - - - -
Did you get any special instructions when you were discharged from the hospital, or when they removed the catheter? I had many instructions, but probably the three most important were:
1 - Drink at least 8 oz. of cranberry juice every day, more if you like it!
2 - Walk, walk, walk! The morning after surgery I was up walking, and I couldn't seem to walk enough to satisfy the staff. I was on the Prostate Cancer wing at John Hopkins Hospital, and the nurses are all very knowledgeable pros! After all, they usually have about 30 PC surgery patients in their care every day of the year! They know their business. Keep walking when you get home.
3 - DO NOT BECOME DISCOURAGED!
Control returns in 3 phases:
Phase 1 -you are dry when lying down at night;
Phase 2 -you are dry when walking around;
Phase 3- you are dry when you rise from a seated position.
This is the last component of continence that returns.
To speed up recovery, practice stopping and starting your urinary stream every time you void (Kegels). To do this, you must stand up to urinate. To shut off your urinary stream,contract your buttocks muscles tightly. Only perform these exercises when you urinate. DO NOT DO THEM AT OTHER TIMES because you will fatigue the sphincter muscle. Until your urinary control is perfect, avoid drinking excessive amounts of fluids. Also, limit your intake of alcohol and caffeine; both will make the problem worse." Also, "Do NOT wear an incontinence device with an attached bag, a condom catheter, or a clamp. If you do, you will not develop the muscular control necessary for continence.
This advice is from the printed discharge instructions I got from Hopkins:
Anyone (enlarged prostate, or post PC- Treatment) experiencing difficulties when urinating: avoid anything containing caffeine--coffee, tea, chocolate, cola--since caffeine acts as a diuretic. (from a John Hopkins Medical Letter "Health After 50")
There is no "diet" to cure incontinence. However, there are certain dietary matters you should know about. Their effect on the bladder is not always understood, but you may want to see if eliminating one or all of these items improves your urine control. Some foods and beverages are thought to contribute to bladder leakage: alcoholic beverages, milk & milk products, coffee (even decaffeinated), tea, soft
drinks, medicines with caffeine, citrus juice and fruits, tomatoes/tomato products, highly spiced food, sugar, honey, chocolate, corn syrup. (From HIP)
While the mechanism remains a mystery, a 1991 study by Israeli researchers found a compound in cranberry and blueberry juices that may prevent bacteria from adhering to the lining of the bladder and the urinary tract.
One has to maintain a sense of humor. It helps a lot. Once, in hospital after
RP and trying to get my bowels moving, I was preparing the IV's and other tubes for a quick getaway when the urge came. My sudden dash for the john was brought up short when I found that I had forgotten the catheter! I laughed so loud that the nursing staff showed up to see what was so funny! And once I got my heel in a loop of the catheter tubing. When I straightened my leg, it stretched the catheter out good until the connection parted. I had never been shot in that location with a big rubber band, and the snap was so loud that again I had a room full of nurses laughing with me. Earned me quite a reputation too.
The part in the incontinence document about getting those muscles tired was important to me. I did lots of Kegel exercises both before and after surgery. I remember doing sets of ten, ten times in a session; as many sessions a day as happened to occur to me. I think that the message in the above document about tiring those muscles is right on the nose. After reading that, I sort of gave up and let nature take its course.
The beginnings of control came shortly afterward. With that success I decided to follow the instructions to the letter. Turned into a cranberry. Watched what I drank. Tried to sink the submarines when voiding. Exercised control over the stream whenever I went. Wished for snow. (So I could practice my signature)
Basically, I reverted to childhood and made a game out of it, no one thing to excess, and continence returned automatically. Took over 20 days to get some control. Almost total control, 98%, came by about 60 days. The time between smy old varies with the individual, his age, the extent of surgery , and the amount of exercise. Some men report getting up off the table after catheter removal with good control, others take many months, and a very few require other means, such as artificial sphincters, to achieve control.
Current bladder capacity is about 600cc. Nine months down the river I still had some problems. When very tired, I had trouble dribbling (only a drop or two) when I arose, especially from the floor. Lifting or any exertion at a distance from my body tended to cause leakage. Sudden loads that I was not prepared for did the same. But nothing noticeable or socially objectionable, though that one droplet feels like a lot more. My surgeon exercised wide margins because of the extent of disease, and warned me that myoid set of muscles that controlled the flow was completely gone after RP; he says that the urethra and pelvic floor muscles at the external urethral sphincter are what learn to do the trick afterwards. They take some time to recover from the shock of surgery.
Wearing diapers goes against a man's grain and is EMBARRASSING! But people really don't notice that you have them on (unless you forgo pants. The built-in cloth-like covers keep the rustle of clothing against the pad or diaper to a minimum. My most humiliating moment came while I was picking up guests at the Ontario, California airport. While changing diapers, I also changed to a new brand. Both had cloth textured surfaces inside and out, but one used blue tabs to mark the OUTSIDE and the other marked the INSIDE the same way. Dummy that I am, the instructions had been discarded in favor of a more compact package to carry. I was wearing white sweats that soon displayed a yellow bottom and rear end, and I had no spare clothes with me. Had to walk through the air terminal that way, and airports are HUGE! Toughed it out, though.
A tip: if you get wet, spill some water over yourself and make it one big general wet area to hide the source if you don't have any spare clothes. Works in anything except clothes that show the yellow stain. Wear dark clothing.
After that I never ventured out without spare clothing in a soft briefcase and some wet washcloths sealed in Ziplock bags. Used so much talcum powder that if I sat down quickly it looked like an explosion. (Talc comes two ways: regular talcum powder, or powder made from cornstarch. The regular talc was best for me. Cornstarch would get damp and roll up into tiny pills.) My favorite clothing was sweats, for their gentle touch on the area around the incision. Learned to stay away from white, though.
Recovery was faster when I decided to do whatever came to mind, and not let the diaper or pad stand in the way. Saw a lot of movies, walked the malls, hiked around the local lake (I live in the mountains, and the only relatively level ground is near the lake,) and attended the retirement luncheons and other social activities associated with my work.
In plain English, exercise. Exercise has been the answer to all of the recovery problems that I have had. Sometimes it seems like a long road back, but everything comes with time.
Lymphadema (water retention and swelling) of the legs has been a problem since RP. This became a real pain in the butt when I had an appendectomy on 29 February 1996. Needed to exercise, but legs felt bad. Walked anyway. The nurses at the small hospital at Lake Arrowhead had a fit when I cruised by their station on the afternoon of the first day post-op. Experience from RP had taught me about how to handle mobility with the catheter and IV, and the surgeon had told me that it was OK to walk, he just hadn't told the nursing staff. Returned to work after only two weeks! I think that walking is the best thing a person can do after almost any surgery.
Again From Jim Hornaday:
I had my catheter taken out yesterday. In contrast to many of your reportee's calling the thing a "friend", mine was a veritable pain in the penis. Yeah, Rah!, the damn thing is out, gone, and not be used again!
About a week ago, I had progressed to the point where I stopped taking my pain medicine. I was really feeling good --for just two weeks away from surgery. I then started a series of "bladder spasms" every time there was anything more than about 50 - 100 ml of urine in my bladder, prior to release. I got a spasm every time I got up out of a chair, anytime I sat in a chair with full weight or pressure on my butt, and sometimes for no good reason at all.
I couldn't reach my Dr. until Tuesday (holidays and all that stuff). I then got a prescription for "phenazopyridine" - 4 times a day, and the explanation that my body was trying to reject the catheter. Obviously, an impossible task, but one that the ol' bod worked at with ever increasing vigor. I found I could get relief by restarting my pain medicine, and very carefully spending 100% of my time flat on my back in bed (with pillow under knees), or sitting in my very comfortable recliner chair with the back so far back I had no pressure on my butt. Very discouraging! A real retrogression.
I asked my doctor about this spasm business, and how often his patients had experienced this problem. He said about 50%, but modified that to the point that many of that 50% didn't consider it a real problem or they thought the pain was from some "other" source, or that it was just a once or twice problem.
My RRP (1/7/97), offered up some pains and spasms. Mine started in the hospital when I had my first post surgical BM on the third day after surgery. I was terrified of the pain I would have and I was so right. Immediately upon elimination (mostly gas) my bladder began to spasm and red tinged fluid began spraying from my penis around the outside of the plastic catheter tube.
At first I couldn't distinguish bladder pain and spasm from lower abdominal, perineal pain. Narcotic pain meds still blurred my senses and there was still too much swelling to distinguish one organ's pain from another. I was sure that having a BM was the absolute wrong thing to do. And I was so right. An organ recital commenced with every BM from that point until I got things under control.
When I returned home I began to recognize that the surgery had thrown my normal body cycles off line. And I was feeling way out of control of my body. I knew I had to let Mr. Foley (the indwelling catheter) do his job so the urethral anastomosis (where the urethra is sewn to the bladder) could heal properly. And I knew I had to do my job of taking good care of Mr. Foley so he could do his work. But my bladder really did not like him sitting in there bouncing around. And when I had gas or a BM, enough movement was created in the area that my bladder was irritated and set off a rhythmic series of spasms and spraying blood tinged urine out of it and getting around to the outside of the tube. During spasms it appears that Mr. Foleys' balloon sitting on the neck of the bladder jumps around and allows fluid to escape from the bladder. Round as the balloon is, it sometimes is not the best fit for all bladders (one size does not fit all).
I found that my secret of reducing the spasm and pain in the bladder at each BM was in gaining control over my natural body functions (BM in this case) and returning them to the "status quo ante". My normal BM pattern was always daily after breakfast. I recognized at about two weeks out of surgery that I was really out of control and needing to get to normal. So I used diet to make sure my stool was very soft. I took Metamucil (I did before) upon waking in the AM. I exercised to my ability (long walks in late January in Maine of about 1 to 2 miles. I found that I rapidly got my bowels timed into my normal cycle. And I realized a sharp cessation in bladder pain and spasm as I accomplished this.
Could be a coincidence. Could be that gaining control over one function helped the other. I'll never know. But I certainly began feeling better and less fearful around having BMs.
In any case, bladders don't like foreign objects (rubber balloons) in them. And, they scream (spasm) from time to time and try to exercise their own control over their territory.
This is a small excerpt from Aubrey's book, "A Revolutionary Approach to Prostate Cancer"
I was terribly bloated with gas for about four days after my surgery. It was painful and I was very uncomfortable. I had a very pretty young student nurse. She tried to relieve some of the gas by putting a tube up my rectum to drain it off. I was very embarrassed, but modesty is quickly forgotten when you are in pain. Unfortunately, the tube didn't work very well. I remained quite bloated. It was so painful that I could eat very little.
Years before I had written a little poem about what beans do to you. It went like this:
Blowing In The Wind
Even though you're not a prude
To flatulate is very rude
So please remember, if you would,
It's an ill wind that blows no good.
After my bloatedness, I added a couple more lines:
But if you're bloated beyond
Then a flatus is just a sigh of relief.
The nurses laughed and thought it was very appropriate.
Another submittal From Scott Barker:
This is from a post dated 06/22/96 titled KEEP YOUR OLD PROSTATE, referring to cryo-preservation, and the possibilities that tissue banking affords.
Many of the up and coming research projects on CaP (Cancer of the Prostate) involve genetic fixes. Vaccine programs are another promising new technology. The nature of gene therapy or vaccine production requires genetic tissue samples to work from. So KEEP THAT OLD PROSTATE ! Tissue banking offers the opportunity to take advantage of new technology years after surgery. Even if you are pronounced "cured," having some samples in the freezer could be the best life insurance that money can buy!
My RP was done despite known lymph node involvement, even distant nodes, betting on the survival stats a la Zincke's paper / Mayo Clinic statistics. My urologist's idea. My urologist is a forward thinking guy. He also recommended a vaccine program at Hoag Cancer Center in Newport Beach, California. Hoag also offers a TIL cell program. More on these later.
One of the services offered at Hoag is Tumor Cryopreservation. It ain't cheap. Your insurance will laugh at you. Including the cost of the transport kit, it ran $1380.00 in late 1995. These cryogenically frozen samples can be used years later to culture the cancer cells for any purpose. I believe that the fee includes perpetual storage. Minimum sample size for culture was given as 1 gram. The size of the sample received from me was 16.7 grams, trimmed to 10.2, then preserved and stored.
Anyone considering RP should know about the availability of these services. Hoag is not the only place offering cryo-preservation, but I don't know of the others.
In my particular case, the samples were used almost immediately to begin vaccine and TIL programs. These were NOT free clinical trials. Total cost of the two programs was about $40,000 if they had gone on to completion. After arduous deliberation my wife and, finally, my children, decided that I was worth it (based, I believe, on projected earnings, actuarial statistics, and the quality of hugs & good night kisses.)
Unfortunately, the samples were contaminated by E-coli, a risk in surgery in the pelvic area, and after three attempts at culturing the specimens were totally consumed.
Hoag furnishes a kit with instructions to the surgeon and for shipment. One of the problems encountered is that the pathologist wants to pickle everything and keep
it all until he can slice and dice and, for all I know, salt and pepper and saut*#eacite; it. My wife shipped the sample via FedEx (they provided the pre-filled out air bill and container) after a nurse delivered it to her during surgery.
Hoag Cancer Center offers tumor cryo-preservation as program CBL01.
Hoag Cancer Center
301 Newport Blvd
Newport Beach, CA 92658-8912
Ph. (714) 760-2091 -
Fax (714) 760-2102
The Hoag programs are not the important message. Tissue banking is what is important here. I wish that I still had some tumor in cold storage. Perhaps the recurrent tumor that I am dealing with now could be a valuable asset if some could be removed for culturing and preservation. The key is having available tissue with a near enough genetic match to current disease to be useful in a gene therapy program that aims at systemic treatment. I believe that this is the future in cancer treatment, and that success is just around the corner. This treats the whole body, not just local disease, and offers the hope of a complete cure, compared to the palliation that most current treatments aim for.
In anticipation of Jerry Bostick's questions:
(Editor's note: Jerry has been an active participant in PPML)
1 - No, you can't keep it in your freezer at home. Besides, at my home a hungry teenager would fry it up and eat it if he could find it. It must be kept at a storage facility at liquid nitrogen temperatures.
2 - It cannot be cultured in your refrigerator. I know that you routinely turn milk to cheese, and that your oranges grow hair, and that the forgotten steak had to be subdued with a fireplace poker, but this stuff has to be done in a laboratory.
3 - I don't think that Hoag will accept samples that you have removed from yourself, no matter how careful you are.
4 - You must use the provided shipping container. Your old Eskimo Pie box won't do.
5 - You will be jailed if you do that in California.
6 - No, I don't have enough money to make your bail if you get caught.
So there is, or was, a place in southern California that will preserve tumor tissue. I do not know if the genetic match would be good enough to use against disease that has progressed to an aggressive hormone independent state if tissue from surgery was early stage, but that tissue could certainly be used for a vaccine attempt at the first signs of recurrence. That is one of myriad questions that need to be answered in vaccine trials. TIL cell infusions and chemosensitivity testing are also dependent upon tissue samples.
I would not, and didn't, undergo RP with out the added insurance of putting aside some tissue in the event that the surgery fails. Tumor is just too darn hard to get later. I have a soft tissue recurrence at the urethral anastomosis (where the urethra was rejoined during RP) but the risks (incontinence, bladder penetration) involved in recovering a large enough sample for culture are high. And, having had an old-fashioned perineal biopsy, the thought of a biopsy needle large enough to capture the recommended one gram of tissue is enough to make me think at least.
(Editors Note: At present time the use of banked tissue does not appear to be one of the avenues current research is following at present. Other areas seem to be showing greater success.)
Mary and Lee suggested this:
In the evening of the operation day, Lee was very restless (had only been out of the OR for about six hours) and had asked me to return to the hotel and bring back his Walkman and some music tapes. I did, and the next day he said he'd listened to the tunes off and on all night and that they really helped him to smooth out. He enjoyed them during the whole hospital stay, especially to block out sounds if there was noise from halls and nursing station.
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"DIFFERENT RP EXPERIENCES"