Monday of the month at our local Senior Center and the "Us Too" support group in Fort Wayne meeting the 2nd Tuesday each month at the Cancer Support Services.
Updated May 10, 2007 URL is /opine/billop.html
New To Prostate Cancer?
We Were Too.
Bill's Radical Prostatectomy
The content of this entire page is copyright 1997-2001 by William J. Weinhardt, all rights reserved.
On the first two pages of this section, I told of our shock upon learning that my husband Bill had prostate cancer. This page is an update including the operation and what has happened since the diagnosis.
Update May 2008
Bill's low PSA is creeping up, at 0.5, so we may have to consider adding another drug with more side effects, but Bill is 67 now and still kicking, except for being very tired all the time. He has been in the Indiana Guard Reserve quite a few years now. It is a back-up for the Indiana National Guard and serves under the Governor of the state of Indiana. He has made many friends there and helps process troops in and out of the country. He is the official care-giver for his last surviving aunt, age 90, and continues his ham radio activities and major remodeling on our old Victorian house. He is very active in his support group, Man To Man which meets locally under the aegis of our local Urologist, Dr. Brian Stogdill. Dr. Stogdill keeps us on the medical path and away from quackery. And boy oh boy, do we have a lot of supplements in this household! We eat "right," just too much of a good thing!
An update, August 1999
We had less than half of 1% chance of the cancer coming back. It came back anyway. Bill has an implant every three months that lowers his testosterone or androgen or something, and the cancer is in only one lymph node, about two nodes above where they stopped removing them during surgery.
(Bill just told me, in 2008, that I am imagining this fact, that the doctor never said this; however this is what I remember him saying.)
The surgeon says Bill will live to be 80. Then he dismissed Bill back to our local physician. As I can understand it, our job is to delay the invasion of the bone marrow for as long as possible. Since progress is being made every day, we have hope.
An Older Update
April 1999: Bill has been back for more PSA tests. The latest word is that the surgeon will see him again in August 1999, and then he will dismiss Bill permanently. This is highly encouraging!!! There was a small cloud on our horizon, in that the PSA is creeping up by a hundredth of a percentage point. Our surgeon is publishing research on this. His premise is that these very, very low scores do not mean the cancer is back. Many of his post-surgical patients have been fine for 15 years post-op with varying PSA scores that once would have meant panic in our hearts. Some of them are 4.0. But no trace of cancer. The new super-sensitive test is wonderful, but we need to keep it in perspective if it varies. Don't write and upset me if you disagree! Take it up with his medical journal, which he has not given me the address of.
Bill has left his place of employment, however. He was unable to get his strength back after the operation. He is 60, and unable to cope with ten miles a day on concrete as he had to do at work. His father who had Alzheimers lived with us, and that was a constant worry and strain. Grandpa passed away on January 30, 1999. Bill plans to do consulting work in environmental engineering. Meanwhile we are trying to do 35 years of put-off household chores, and enjoying every minute. It's good to be alive, even if we are tired.
Another odd thing is that Bill has been unable to hold in his stomach since the operation. The scar cuts cleanly down his abdomen. He just has no muscle tone. This may be common with abdominal operations, but we didn't know about it. It is a good thing he isn't upset about it, for there seems to be nothing to do for it. If he wears his silk boxers, his trousers slide right off him. Three times, so far.... We try to remember not to wear those favorite shorts any more! Oops!
January 18, 1998: Bill is considered "cured" as of now! His operation was December 16th, 1997 and today is January 18th, 1998. The pathology report said no cancer cells in the lymph nodes, surgical margins, bladder neck or seminal vesicles. We didn't get a percentage of cancer report, nor a ploidy, but the new Gleason was a 3+4=VII, up one tick from the pre-op 3+3=VI. This is pretty usual, I have heard, for it to show up one higher on a larger sample. We will be watching the PSA scores for a long time, but as of today we are to consider him "cured."
Here is the account Bill wrote of his operation, which is unlike anyone else's, because every single one of the men has a different experience.
Our email surprised us, because people thought Bill had a rough time. He would have the operation again no matter what, not that it would be done a second time. He is very glad to be cured.
My Prostate Cancer Surgery
......Narrative of Events
by William Weinhardt
Tuesday Dec 16, 1997
Scheduled for a Radical Prostatectomy on Tuesday morning December 16, 1997 at Indiana University Hospital in Indianapolis with Dr. Richard Foster as surgeon. Arrived at IU Hospital at 6:30AM as requested. Went to day surgery to check in at about 6:45AM. Checked in at desk and then taken to small cubicle to get into gown etc. and put on the compression stockings. While doing all of this met various doctors as they came by before the procedure. Met Dr Plair and Dr Davis who were to be involved with the case. Also a Dr Glaser (anesthesiologist) plus another. After all the preliminaries, a nurse came in and said that if I was ready, I should walk with her to surgery. Did that and when there was told by the anesthetist to climb up on the operating table and they proceeded to start hooking me up and putting me out.
Got into recovery about 11:30AM. Don't remember much else about it but for some reason I did know the time. The anesthetist told me that they had not been able to get the pain med in my back. About 1:00PM I was taken to my room and really wasn't in very much pain. Did have the PCA pump and used it about once an hour. In the afternoon, Dr Foster came by and told us that the surgery had been very successful, the locality, and the degree of the cancer. There had been no lymph node involvement or spread to surgical margins and it was confined to the prostate. We will get a report from the pathology report.
Was not allowed to eat or drink anything but ice chips. Mouth got very dry particularly at night. Also sometime during the night shift, the nurse got his foot in a loop in my central IV line (in my case this IV was in my neck on the right side), and when he went to walk away scared us both. Fortunately, it didn't completely pull out.
Wednesday December 17
Today I am supposed to be able to get up and sit in a chair and also to have some liquids to eat. The nurses told me I should be using the pain pump every 10 min or so since I will be getting up. I told them I had been using it less than once an hour since I wasn't feeling much pain but went ahead and increased. Aide helped me up to sit in chair and to bathe.
At noon got a tray of clear liquids and in afternoon aide helped me up again. Evening got another tray of liquids and was helped to sit up in chair again for a while. During this time I had felt only minimal bowel activity and not sure if passed any gas at all. Really feeling pretty good under the circumstances.
Thursday December 18
Went on solid foods with breakfast this morning. Also supposed to get up and start walking halls today. About mid morning, aide helped me up and walking in halls. Cleaned up with sponge bath. Still have not passed gas or anything else via that avenue. They are talking about releasing me Friday or Saturday. Ate solids for lunch and supper.
Nurses still wanting me to liberally use PCA pump since I am supposed to be getting up and walking. I really wasn't feeling much pain so again had cut back on the pain medication but to keep them happy, I went ahead and started using it every 10 minutes or so. Doctors say to walk as much as I can but nurses say don't overdo it and three times a day is enough.
Friday December 19
Nothing has moved through so put back on liquids. In retrospect, I had similar problems 12-15 years ago when I had double hernia surgery. My digestive system was sluggish to start back up. I wonder if perhaps the pain medication may have been playing a part in this in keeping digestive system from working. It shouldn't any more as they have taken me off of the PCA pump but I still have the other IV. Still walking the halls as much as I can.
Saturday December 20
Went to X-ray for dye test to see if any leakage and if catheter can be removed before I would be dismissed. This was successful but nothing seems to be moving in my digestive system. Will not be released today. The doctors said that they will leave catheter in place until I am released from the hospital.
Sunday December 21
In a lot of discomfort as digestive system not working. Decision made by physicians after another x-ray to put in naso-gastric tube to give me some relief. This was very unpleasant to have this put in and also not pleasant to have it there but it did give me some very welcome relief. Was very badly distended. Finally, during the night, did start having some bowel activity and movements. Had a visit during the afternoon from our son Lance, in from New York, and he also brought my Dad down from Bluffton.
I am supposed to walk a lot according to the Doctors but nurses say 3 times a day is enough....who is right here? It is difficult to do so with everything that must be unhooked...the naso-gastric tube, catheter bag must go with me, and the IV pump must be unhooked from the wall plug. One time I forgot the catheter bag and started to walk away....guess I couldn't really tow the bed with it but it gave me a start.
Monday December 22
The naso-gastric tube has given me relief and digestive system activity seems to be feebly starting. I am told that tomorrow I will go back on a liquid diet. I am really getting tired of ice chips. I am not even supposed to have water. Still walking as much as I can but really a chore with everything that must be unhooked or untangled. Also a real problem to get to the bathroom in a hurry.
Tuesday December 23
Dr Foster came through this morning and removed the naso-gastric tube.....what a relief to have it out. At noon got a tray with liquid diet......went real easy on this. I don't want to overdo here. Through the day seem to be tolerating this OK. Was told that I would probably go on solid foods tomorrow (Wednesday).
Wednesday December 24 (Christmas Eve)
Still seem to be tolerating the liquid diet OK and at noon got a tray with solid foods. Again, I am going to go easy on this and not overdo it. Digestive system seems to be functioning after a fashion, at least stuff is moving through in fits and starts.
May be released tomorrow if tolerate solid foods OK. Left foot has started to swell and right one to lesser extent. Walking as much as I can. I really wanted to be home long before now. We always celebrate Christmas on Christmas Eve so kind of a bummer to spend it in the hospital. The staff was great however and made things as pleasant as they could for patients spending the holiday here.
Thursday December 25 (Christmas Day)
Things seem to be working rather well, however both feet are swollen today. Been walking a lot and digestive system seems to working better. Mid morning, the catheter was removed and taken off of IV fluids. Was told that if I could urinate several times OK that I would be released. By 12:30, had passed this test and dismissal process was started. Dr Jennifer Davis removed the staples and the penrose drain in my side which had come loose earlier in the day anyway...the nurse taped it back in place.
Was released from the hospital around 1:30-2:00PM in the afternoon. Trip back home was fairly uneventful. Did stop at Warren and walk around a bit while Sandra bought gas for the car.....there had not been much open as it was Christmas day.
The surgical procedure went fine and the chances that all of the cancer was removed are very good. We will get the pathology report or summary of it on Jan 16 when I have an appointment to see Dr Foster for a follow-up.
I had plenty of attention from the hospital staff and they went out of their way to make things as pleasant as possible for their patients. I believe the care that I received was excellent though at times there were some differences in what the doctors said that I should do and what the nurses said that I should do.
Sandra was in Indianapolis with me for the duration of my stay and was a big help in dealing with the hospital staff when necessary. She was usually there when the various physicians made their rounds and it always helps to have two people ask questions, listen to answers, and listen to the doctors' directions. She gave a lot of moral support and also kept me well supplied with reading material which certainly helped to pass the time. It was probably good to be 130 or so miles from home so I wasn't put in the position of having lots of well-intentioned visitors drop in. I really did not feel much like having to make small talk. While I wasn't ever in much pain from the surgery, I was certainly uncomfortable from the digestive problems and very tired most of the time.
As a matter of interest, Sandra stayed at Methodist Towers which is across the street from and connected by a skywalk to Methodist Hospital. While about one-half mile from University Hospital, there is a shuttle that runs between Methodist, University, and Riley Hospital since they are all part of the same organization. This worked out quite well for her. One night when she either missed the last shuttle or it had quit early, security took her and another spouse back to Methodist Towers.
In some of the reading that I had done, wives or friends spent the first night or two after surgery at the hospital and in some cases in the room. We didn't find this to be necessary at University Hospital. There didn't seem to be any need for both Sandra and me to be worn out. Hospitals tend to be rather noisy and though I was on medication initially, it is still difficult to get rested. We felt it more important for Sandra to get good nights sleep, which she certainly wouldn't have at the hospital. The hospital is well staffed and Sandra staying overnight wouldn't have been worth her losing rest.
We found that the Internet was a valuable resource in learning more about prostate cancer and in helping us to make an informed decision regarding the treatment options. Since I was working full time from the time of diagnosis up to the time of surgery, I relied on Sandra to do much of this research. Also I received much support and assistance from the local "Man to Man" support group which meets from 4-5:30PM on the 2nd
There were several young men on the floor who had surgery for testicular cancer. They were from the east and west coasts. The one who was in my room for a while was from the Los Angeles area. IU is one of the leading locations for these procedures. Dr. Foster is one of the leading surgeons in the country for this kind of surgery.
I turned out to be among the unfortunate 10-20% of abdominal surgical patients whose digestive systems are reluctant to start again. I was slow to recognize this and so were the doctors and hospital staff.
About a week after my release from the hospital, the swelling of my feet had subsided enough that I could put on sneakers so we could go out for a meal, so on Saturday Jan 3, went with Sandra, Dad, Lance, and Nicole to Richard's Restaurant for lunch. It was really nice to get out. Was concerned about having a continence problem but turned out to be fine.
I had done a lot of reading of men who have had this surgical procedure and of the after effects. I can say that except for the digestive system problem of getting started, I really had very little difficulty. I really did not have very much pain.
Continence has not been much of a problem for me. I just have an occasional leakage when getting up after having been seated and this seems to be getting better. Still three weeks after surgery, I get tired rather quickly. On Jan 6, we had to make a trip to Lafayette for closing on dad's house. Even though Sandra drove and we were only in Lafayette long enough for the closing and for lunch, it really tired me out so that the next day about all I wanted to do was take naps even though I had a good night's sleep.
I have been making good use of our treadmill to do some walking, since the weather outside has been wet and not very nice. Also been walking a lot in the house and I think perhaps going up and down stairs helps.
It was a real relief to have the catheter removed before leaving the hospital. According to Dr. Foster, this can be done with about 70% of the radical prostatectomy patients they treat. I was very happy to be rid of the thing and not have it accompany me for three weeks or so after leaving the hospital, which seems to be common many other places. Perhaps this may have something to do with my minimal problems with incontinence. In most of the reading I have done, the men had far more incontinence problems when the catheter was removed after 3 weeks or so.
Six weeks after surgery, I went back to work half-days and have been working up to being at work longer. I still tire much more quickly than I did prior to surgery. Most of the time while I was home recuperating, I wore sweat pants so I had not been aware of the discomfort that wearing a belt would cause when I went back to work. Also being the facility engineer in an 18 acre building, the major amount of walking on concrete does after a while cause some additional discomfort in the area of the incision.
Note from Sandra, 10 February 1998: Did Bill neglect to add that when we went back for his checkup, a month after the surgery, Dr. Foster explained that the pathology report showed that there was NO CANCER in the surgical margins nor the seminal vesicles nor the bladder neck nor any lymph nodes. We are to consider Bill CURED. (Ummm, I did write that at the beginning of the page, I guess.)
This is extraordinary good news, and we will never be able to say enough thanks to Caylor-Nickel Medical Center for the free screening by Drs. Purcell and Stogdill. Likewise our wonderful surgeon Dr. Foster and his residents (I think that's what they were), Dr. Jennifer Davis, Dr. Hwang and Dr. Plaier.
And Bill didn't say nearly enough about how much he adored his nursing staff. He still talks about them by name and tells everyone how good they were to him. These engineers don't show much emotion, but Bill does think the nursing staff was the best in the world! I was able to relax and have complete confidence that Bill was in good hands, all the time.
I wasn't relaxed about the pain he was in from his ilius (paralyzed bowel), but I knew those nurses would solve the problem. At one point, I thought the distension might stop his heart and lungs. He was having great difficulty breathing; his breathing-exercise measurer-tube would only go half the distance it did before he was stricken. But I knew I could count on the nurses to stay with him until they got him the naso-gastric tube. There was a substitute doctor on the case that day, whom we had not seen before, or since. He was the one who would not order the tube. That was the only major problem.
We are also very grateful for the catheter coming out so soon. Bill no longer needs even a little pad. Perhaps the early removal of the catheter was the reason. Dr. Foster has published his research about this, and said he would let me put it on this website. We just need to get the file from him, on a disk. Then you can print it out and take it to your own surgeons.
The content of this entire page is copyright 1997, 1998, 2008 by William J. Weinhardt, all rights reserved.
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