The purpose of this web site is to assist patients who have just discovered they have prostate cancer. This site will guide you through the process from getting an appointment, making a treatment choice, and following through to recovery.
Alan W.Partin M.D., Ph.D., Professor of Urology the Johns Hopkins Medical Institution, has both basic science and clinical interest in prognosis prediction for men with prostate cancer. Dr. Partin's laboratories and clinical and surgical interest are focused on development and testing of new and existing methods for predicting the aggressiveness of prostate cancers so that rational treatment decisions can be made by both patients and physicians.
You will be mailed a confirmation of your schedule along with instructions of what to bring and directions to the Johns Hopkins Outpatient Center.
If you are given an appointment before this information can be mailed to you, it can be faxed to you or given to you over the phone.
You will need to bring
You can get you pathology slides from the physician who performed the biopsy.
Your treatment will depend on the degree and variation of your cancer. The treatment options that will be discussed with you during your consultation are:
If you choose to have surgery, you will be able to schedule that date on the same day as your consultation. Michelle Cloude will schedule your surgery and give you all the information you will need regarding blood donation, pre-op visit and local accommodations.
THINGS YOU WILL NEED TO KNOW PRIOR TO COMING TO JOHNS HOPKINS FOR YOUR SURGERY:
THE CATHETER PRIOR TO INSERTION.
Cut the rounded cap off after rotating the catheter
Cut the portion of the catheter not attached to
You may eat and drink whatever you wish. You may wish to increase your fresh fruit and vegetable intake to keep your stools soft. If you do become constipated take mineral oil and milk of magnesia. Alcohol consumption in moderation is acceptable. Do not have an enema--for the first 3 months after surgery your rectal wall is thin and you may injure yourself.
Changing position in bed, walking and prescribed exercise promotes circulation. Good blood flow discourages the formation of blood clots and enhances healing. Most patients sit up in bed and walk with assistance the day of or following surgery. While in the hospital the nurses will assist you with getting in and out of bed and walking.
The most important thing to prevent blood clots is early ambulation. You may go up and down steps as necessary and you should walk several times during the day. Each day you are encouraged to increase physical activity and to be as independent as possible
You must avoid heavy lifting and vigorous exercise (calisthenics, golf, tennis vigorous walking) for a total of 3-4 weeks from the day of surgery. It takes at least 4 weeks for firm scar tissue to develop in both your incision and in the areas where you underwent surgery. If you engage in strenuous activity before that time you might disrupt the delicate connection between your bladder and urethra; this could lead to long term problems with urinary control or a hernia in the incision. When you are sitting I prefer having you sit in a semi-recumbent position (in a reclining chair, on a sofa, or in a comfortable chair with a footstool) the first weeks you are home. This accomplishes 2 goals: 1) it elevates your legs, thereby improving drainage from the veins in your legs which will reduce the possibility of clot formation (see below); and 2) it avoids placing weight on the area of your surgery in the perineum (the space between the scrotum and the rectum). You may take off the support stockings after the Foley catheter is removed and you may drive after the Foley catheter has been removed. You may ride in a car at any time.
Your staples should be removed 10 days after surgery. You can come back to the Johns Hopkins Urology clinic or have them taken out by your local physician. Your drain will be removed prior to your discharge in most cases. You may shower the day your drain is removed. Do not take tub baths until your catheter is removed. Do not use a hot tub or swim in the ocean for 3 weeks. You may swim in a pool at 3 weeks with common sense. Many patients develop some drainage from the incision after they go home. This can either be clear fluid (a seroma) or a mixture of blood and pus. In either instance it usually can be treated simply. Obtain some hydrogen peroxide and Q-tips; soak the Q-tip in the hydrogen peroxide and place it through the opening in the wound. This will keep the opening patent until all the material has drained. I suggest that you shower in the morning washing this area thoroughly (you cannot hurt it). After your shower use the Q-tip and then place a dressing over the site. Repeat the Q-tip and dressing before you go to bed that night.
Clots in the legs - During the first 4-6 weeks after surgery, the major complication that occurs in 1-2% of men is a clot in a vein deep in your leg (deep venous thrombosis). This can produce pain in your calf or swelling in your ankle or leg. These clots may break loose and travel to the lung producing a life-threatening condition known as pulmonary embolus. A pulmonary embolus also can occur without any pain or swelling in your leg; the symptoms are chest pain (especially when you take a deep breath), shortness of breath, the sudden onset of weakness or fainting, and /or coughing up blood. If you develop any of these symptoms or pain/swelling in your leg, call me. Also, you should immediately call your local physician and go to an emergency room and state that you need to be evaluated for deep venous thrombosis or pulmonary embolism. If the diagnosis is made early, treatment with anticoagulation is easy and effective.
Urinary Tract Infection - Urinary tract infections are not uncommon following placement of a catheter and removal. They can be manifested in several ways. Before the catheter is removed the urine may become permanently cloudy (see below) or you may develop some painful purulent drainage around the catheter. This suggests that you may have a urinary tract infection. Please call me and I may prescribe an antibiotic. Also, it is not unusual for some bacteria to be present in the urine. For this reason, many urologists will place you on an antibiotic for a few days after the catheter has been removed.
Urinary sediment - It is not uncommon for there to be some sediment in the urine. This can be manifested in a number of different ways. Old clots may appear as dark particles which occur after the urine has been grossly bloody. With hydration these will usually clear spontaneously. Also, the pH (acidity or alkalinity) of the urine changes throughout the day. After a meal the urine often times becomes alkaline. There are normal substances in the urine. If you see these periodically do not be concerned. This is a normal phenomenon. However, if the urine is persistently cloudy this suggests that an infection may be present (see above).
Pain - Abdominal pain is common, but it is not located where you would expect it, i.e. in the midline. Rather it is either on one side or the other of the midline (it rarely hurts equally on both sides). The pain is from irritation of the abdominal muscles during surgery; sometimes it is where the drainage tubes exited. It will resolve spontaneously. Try to avoid activities that bring it on. You may also experience some discomfort in your penis and scrotum. Please note it is very normal for both the penis and scrotum to be SWOLLEN and DISCOLORED for about 1-2 weeks.
Problems with urinary control are common once the catheter is removed. Do not become discouraged. Urinary control returns in 3 phases: Phase I - you are dry when lying down at night; Phase II - you are dry when walking around; Phase III - you are dry when you rise from a seated position. This is the last component of continence that returns. Everyone is different and, for this reason, I cannot predict when you will be dry. To speed up your recovery, practice stopping and starting your urinary stream every time you void. To do this, you must stand up to urinate. When you stop your stream you will feel your scrotum tighten and pull up. (Kegel exercises). Perform these exercises every time you urinate. You should attempt to stop every leak the same way you stop your stream when urinating. Only perform the Kegel exercises when voiding and when you are trying to stop the leaking. Try to sleep through the night and allow your bladder to fill up and return to its normal capacity. This may take some time so don't get discouraged you will gradually recover your continence. Until your control returns completely, wear a pad or disposable diaper. You can obtain Depends, an adult diaper, from your local grocery store. There are also many other urinary control pads on the market you can try. Do not wear an incontinence device with an attached bag, a condom catheter, or a clamp unless I talk to you about this. If you do, you will not develop the muscular control necessary for continence. 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. If you develop a red, painful rash you may have a fungal infection, especially if you were treated with antibiotics. This usually responds well to treatment with Lotrimin cream, a non-prescription formulation that can be purchased over the counter. Again I emphasize that urinary control takes time. Do not get discouraged.
Erections return gradually. Be patient. As I told you before the operation, the return of sexual function varies depending upon the age of the patient and the extent of the tumor. Although the average recovery is approximately 6 to 12 months, there are some patients who don't recover potency until two years after surgery. Furthermore, most patients continue to experience improvement of erections over the long term after the operation. Erections return gradually and quality improves month by month. The stimuli for erection during the first year will also be different. Visual and psychogenic stimuli will be less effective and tactile sensation will be more effective. Indeed, the major stimulus for erections during the first year postoperatively is tactile sensation. For this reason, do not be afraid to experiment with sexual activity--you can do no harm. If you obtain a partial erection, attempt vaginal penetration. Lubrication of the vagina with K-Y jelly can help. Vaginal stimulation will be the major factor which encourages further erections. Do not wait until you have the perfect erection before attempting intercourse. In addition, you should be able to have an orgasm even if you do not have an erection. With orgasm there will be little emission of semen because the prostate and seminal vesicles have been removed. When erectile function returns many men complain that they lose their erections when they attempt intercourse. This is caused by a venous leak. This can be overcome by placing a soft tourniquet at the base of the penis before foreplay. The purpose of this tourniquet is to retain the blood in the penis once blood flow increases secondary to stimulation. Do not worry; the tourniquet will not impede the flow of blood into the penis. Many patients have told me that rubber bands, ponytail holders, or an erection ring (which can be obtained from novelty stores) work. You will be given a prescription to begin erectile dysfunction therapy after the catheter is removed and you feel ready for sexual activity. Directions for use will be included with the prescriptions.
If you have any problems while you are at home please feel free to call my nurse or myself directly. The phone numbers are (Dr. Partin's office) 410-614-4876, (Robin's office) 410-614-6926 (clinic) 410-955-6100. If you should have a problem during the night or on a weekend call the Johns Hopkins Hospital 410-955-6070 and ask for THE UROLOGY RESIDENT ON CALL. The paging operator will put your call through. Please be patient, these pages sometimes take as long as five to ten minutes.
I would like your first PSA at the 3-month interval and then yearly following surgery unless there is a problem. Thereafter you will need to be evaluated on an annual basis either by me or your referring doctor with a PSA level. I would like to receive these reports by fax (410-955-0833) at regular intervals so that I can follow your progress.
Alan W. Partin, M.D.,Ph.D.
For information about support groups, you may contact the following:
- *American Cancer Society's "Man-to-Man" at 1-800-ACS-2345
- Us—Too at 1-800-808-7866
- Prostate Cancer Support Network at 1-800-828-7866
- Cancer Care Counseling Line at 1-800-813-HOPE (4673)
- Schering Corp.'s "Commitment to Care" at 1-800-521-7157
- National Coalition for Cancer Survivorship at 301-650-8868
- Patient Advocates for Advanced Cancer Treatment at 616-453-1477
* Dr. Partin Recommends
- Is it safe to wait before my operation?
The delay period of 6-8 weeks before surgery after your biopsy is recommended so that the area around the prostate and rectum can heal from the biopsy, if you have had a recent biopsy. This makes the operation easier and safer. Since prostate cancer is a slow growing tumor, this delay period is not felt to be significant.
What type of anesthetic will I have?
Most patients are given a general anesthetic. Your anesthesiologist will discuss this with you prior to the operation.
How long does the operation last?
The operation takes approximately one hour but, in some circumstances, can take longer. Your lymph nodes will automatically be removed and sent to pathology with your prostate. There is no frozen section done.
What can I expect after the operation?
When you wake up you will have a catheter in your penis draining the bladder and an intravenous line for fluids. You will be asked to get out of bed the evening of, or the day after, the operation and to exercise your lower legs each hour while in bed. This is to help prevent blood clots from forming after the operation.
How long will I be in the hospital?
The hospital stay is usually one or two days. Your pathology report will be ready in 4-6 days at which time Dr. Partin will call you with the results. You should plan to wear comfortable pants to go home in, you will have a catheter in place.
How long will I be out of work?
Convalescent periods will vary patient to patient, however; the average is three or four weeks. After major surgery it takes time to recover your strength, so be patient. It is recommended that you do not return to work until the catheter has been removed.
Can I ride in a car or take short trips?
The answer is yes, as long as you make the trips brief. As a general rule, you should not ride in a car for longer than about ninety minutes at a time until your catheter has been removed, which will be about 10 days. You are welcome to shower when you go home with the catheter in place. Do not sit in the bathtub until the catheter comes out.
Can I drive the car when I go home?
You should not drive the car yourself until after the catheter comes out. Then you should start slowly and only take short trips.
Is there anything I should do about regulating my bowel movements?
It is important to make sure that you do not become constipated or strain when you are moving your bowels immediately after the operation. If your bowel movements are not loose, take one teaspoon of mineral oil at night and one teaspoon of milk of magnesia in the morning as long as is needed.
What if I see blood in the leg bag when I get home?
Everyone has small amounts of blood appear in their urine during the period of healing when the catheter is still in place. Don't be alarmed unless this is continuous bleeding or large clots appear. If you have any doubt about the amount of bleeding you are observing, please don't hesitate to call the office (410-614-4876) or, if necessary, the emergency number (410-955-6070) and ask for the resident on call.
Is there a risk that I will develop trouble because of clots forming in my legs after surgery?
This is a serious problem that occurs in a very small percentage of patients. Blood clots forming in the legs after surgery can cause problems because they may migrate to the lungs and cause difficulty breathing. There are some early signs that you should watch for that would alert you to the fact that this problem is developing:
If you get pain, tightness, redness or swelling in the back of your calves or thighs, you should definitely call me or your local doctor immediately. If you have a deep blood clot you must get blood thinning medication as soon as possible.
When does the catheter come out?
The catheter will be removed approximately 10 days from the date of the operation. If you return here to have your catheter removed, call the clinic when you get home at (410) 955-6100 and tell them that you would like to schedule a "catheter removal" visit for 10 days from the time of your surgery. If your local urologist is going to remove the catheter for you, then you should call him as soon as you get home. You will also be given instructions on taking your catheter out at home.
When should I have my PSA checked after surgery?
You should plan to have your PSA checked three months after the date of your surgery. I would like to know the results and I would be grateful if you would fax them to me (410-955-0833). Some patients will need their PSA checked at six months and others will not. We can discuss this matter on the telephone after we get your first PSA value back and make a decision together. Please call to talk to Robin or I after you fax your PSA. Everyone needs a PSA check yearly after their operation.
What about urinary incontinence and regaining control of my urinary stream?
Everyone recovers at a slightly different rate. On the day the catheter comes out, most patients will have some degree of control, although many patients do experience a variable amount of urinary incontinence. This can mean anywhere from a small amount of spotting in your underwear to a fair amount of leaking which would necessitate wearing a small pad to keep your clothes dry. Do not be discouraged if you leak initially. Some patients take up to one year to regain complete urinary control. In addition, you must understand that when you bear down, sneeze or cough, you will increase the likelihood that you will leak, particularly immediately after your surgery. The exercise that will help the most in recovering your urinary control is to interrupt the urinary stream once during voiding. This is the best exercise you can do and I encourage you to start doing it as soon as the catheter comes out.
How about the return of sexual function?
The return of sexual function depends, to a certain extent, on your level of sexual performance prior to the surgery as well as your age and the degree to which the neurovascular bundles were spared during your surgery. All patients are somewhat different and it takes months to know whether a patient will regain sexual function after a radical prostatectomy. Don't be discouraged if it takes several months before you begin to engage in sexual activity again. Everyone is different and you and I will stay in touch to make sure that your recovery goes as smoothly as possible.
Alan W. Partin, M.D., Ph.D.
Office: (410) 614-4876
Clinic: (410) 955-6100
Please call the office for any questions you may have before or after surgery. Dr. Partin or his nurse, Robin, will be happy to assist you in any way. PLEASE DO NOT EMAIL QUESTIONS.
There is no return follow-up visit other than pre-determined PSA. If you are having a problem you are always welcome to make an appointment or call the office.