THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2015 SO THERE IS NO UPDATE.
I had my physical at the end of October 2008. My PSA was 4.4. The DRE showed no enlargement. As part of the physical, my doctor asked me to have a colonoscopy. I had this the first of December and the results came back clear with no evidence of any abnormality.
My doctor asked for a second PSA test because of the elevated level, but nothing showing from the colonoscopy. The second PSA test, taken a week after the colonoscopy, was 5.6. Because of the increase, he suggested I see a urologist which I did in early January. He did a DRE (Digital Rectal Examination) and found that one side of the prostate felt firmer than the other. He recommended a biopsy. This is scheduled for Thursday, January 29.
I had my ultrasound and biopsy Thursday January 29, 2009. It wasn't as bad as I expected. The doctor was very good about explaining everything. First he checked the prostate with the ultrasound and noticed several white areas in the prostate. He said these were calcium deposits. One of the larger deposits was on the lower side which he thought might explain the hardness he felt on that side. He then took measurements of the prostate with the ultrasound. Based on the volume, he said he would not expect a PSA over 3. Of course mine was over 5.5 so that didn't help.
He then explained that I would feel a couple of pokes as he injected the local anesthetic. I didn't feel much as he did that. I could see the needle tracks as they went in. He then explained that he would take the biopsy samples. I could see each of the needle pokes on the monitor. They felt more like a quick pressure than anything else. After he was done I was able to sit up without any discomfort. I proceeded to get dressed and walked out to set up the follow up to go over the results. This appointment is next Thursday February 5.
As the anesthetic wore off later in the day, I began to feel more of an ache. Not unbearable, just uncomfortable. As I had read before, I found that lying down helped. By evening, the pain was mainly a dull ache. The next day, I felt fine - not much pain at all.
Now its just the waiting game again. I update this again after we get the results back.
Later: We received the biopsy results yesterday. They did show cancer. It appears to be only on the lower right side. The doctor said the cores on the right side showed 50% cancer of 3 and 4. The Gleason score was 7 (3+4). The left side showed no signs of cancer although he cautioned that that does not mean there is no cancer on the left, only that none was found in the samples. He said the stage was probably either T1c or T2a depending on how wide-spread the cancer actually is in the prostate. He did not feel that the cancer had spread outside the prostate based on all indicators he had.
We spent 2 hours talking with him. He had a lot of information that he wanted to share with us and we had a lot of questions for him. He was very open and did not try to push any one treatment on us. He feels a surgical option is probably best, but the final decision is ours and he will support whatever treatment we choose. He gave us some names of other doctors that do radiation or Davinci surgery. He also told how to go about getting a second pathology report if we desired.
Now we will start to make appointments with the other doctors and try to determine the best course of treatment for me. He felt we should try to make a decision within the next month or two. Its not something that needs a decision immediately.
I have decided that surgery is the best treatment for me, the only problem is deciding between open and Da Vinci. We had a bone scan a couple of weeks ago and got the results this week. The scan showed no hotspots or other areas of concern, so that was a relief. We also sent the biopsy to Bostwick for a second opinion. Bostwick had slightly different opinion on the samples. They rate it a Gleason 7 (4+3) rather than (3+4) as in the original pathology report.
Tuesday we met with a urologist that specializes in the Davinci robotic. Today we met with my current urologist who prefers the open procedure because he has been doing it a long time and does not feel comfortable doing robotic. We are still weighing the pros and cons of both procedures although I am leaning to the open. Tomorrow we meet with a radiation oncologist to discuss treatment options if the cancer has spread beyond the prostate. I plan to make a final decision within the next week and then we can schedule the surgery. I think we will both be relieved to get the surgery scheduled.
Later : After a lot of research, interviews and discussions, I have decided to have the open surgery rather than the da Vinci. It finally just felt that this was the best option for me - a real gut feeling. It seems a lot of people choose the da Vinci because of the shorter hospital stay and quicker recovery. These are secondary factors to me. I wanted the procedure that I felt would result in the best long term outcome. I couldn't seem to find a great distinquishing factor between open, laparoscopic, and daVinci when it came to that. Ultimately, I felt more comfortable with my doctor's comments about being able to "feel" if something was normal or abnormal and his years of experience. He has been in practice for over 35 years and has performed many surgeries.
We are now in the waiting stage again. The surgery is scheduled for April 20, 2009. So we are starting to mentally prepare for the surgery. We are also using the time to prepare for post-surgery recovery. We read information on penile rehabiliation and are going to give this a try. This involves low dose Viagra for the two weeks prior to surgery and then full strength pills for 4 weeks after the catheter is removed. Hopefully this will prove beneficial.
I am also starting to work on the Kegel exercises and general exercise. My wife is also starting to increase my intake of fruits, vegetables, and juices that we have read about.
We have started going to our local UsToo meetings. They are not very large (so far there have only been about 4 couples), but we are talking to the leader about ways to get the word out and maybe increase the active membership. We feel this will not only help ourselves, but will help others looking for information and support.
Surgery day finally came last Monday, April 20, 2009. We got to the hospital at 6:00 AM for the 7:30 open radical prostatectomy. After the initial pre-op stuff, the next thing I remember is waking up in my hospital room around 12:00. I was not in a lot of pain. My wife came in shortly afterward and told me the doctor felt he had gotten all of the cancer. The lymph nodes came back clear and he felt the cancer was still confined to the prostate. He initially felt that it might be necessary to take the right nerve and spare the left. However, he was able to spare both nerves. He did take a little wider cut around the prostate to try to get any possible cancer that had escaped the prostate.
The first day in the hospital was pretty uneventful. In between naps I was pretty alert and taking a few phone calls. I had clear liquids for lunch. I tried sitting up in a chair for a few minutes later in the afternoon. I did ok for a few minutes but began to get light headed and nauseous so it was back to bed and some anti-nausea medicine. For dinner, I was able to have full liquids - soup, pudding, etc. That night I did take one hit on the pain pump just to help me sleep.
The second day was a good day. The doctor came by in the morning and sat and talked to us for about 45 minutes. He was pleased with the results of the surgery and told us what to expect over the next few days. The staples will come out on the 27th and the catheter on the 30th. I would be in the hospital one more night but would also be up walking. The first walk was suprisingly good. I walked with the nurse around several corridors and back to the room. I took a few more walks that day including one around the entire floor of the hospital. I was surprised that I really had no pain while walking. It actually felt good. The meals for the second day were pretty much whatever I felt like eating. We just ordered off the regular hospital menu.
Day three - going home day. My surgeon had left for a short vacation, so one of his partners was to do the discharge. We waited until almost noon before he came in. It was his surgery day. After he gave the orders, we waited somewhat patiently for the nurses to get everything ready for us to leave. They had to take out the drain bag, which is a small plastic bag that suctions blood out of the cavity. Then they took off the surgical dressings and the IV's and I was ready for a shower. The shower felt great and I was surprised how little pain I had while washing. Then we waited for the nurse to come in to show us how to handle to catheter bags. We didn't actually get out of the hospital until late afternoon.
The drive home was short and the bumps in the road weren't too bad. I won't be able to drive myself until the staples are taken out. It was nice to finally get back home.
Each day at home seems to be a little better. I walked a half mile on the treadmill, although at less that one mile an hour. All of our bedrooms are upstairs so we were a bit concerned about the stairs. The doctors all said they wanted me to walk up and down the stairs. The first time up was surprisingly painless. The trip down was a little harder though. As some of the others have said, you definitely want to put your heel down first and then the toes. The sudden jolt is a little hard. After a few trips up and down though I found I was able to take the stairs pretty much as normal only a little slower.
It took until Saturday before I had the first post surgery bowel movement. I think that will definitely make things feel even better. I also experienced several leakage incidences on Friday and Saturday. We called the doctor on Friday after the first one and were told that this is entirely normal. I would start to get a burning sensation in the penis and then suddenly start to squirt urine from around the catheter along with a small amount of blood. This is definitely not a pleasant experience. Saturday was also a setback energy wise. I didn't sleep well Friday night. I think I probably overdid it a bit on Friday.
Sunday is a pretty good day so far. We went out to a couple of stores to get some garden plants and supplies (of course my wife had to do all the lifting since I'm restricted to no more than 15 pounds for the next six weeks). The leakage problems seem to have gone away and the bowel movements are getting better. The next step is to get the staples out tomorrow.
Later: I have my appointment tomorrow to go over the pathology report from my surgery. We obtained a copy of the report ahead of time to review and develop our questions.
The report shows the cancer was a Gleason 8 (3+5) and occupied at least 35% of the total volume. The Gleason 5 occupied less than 10% of the total volume. It also shows positive margins on the right side and extension into the periprostatic tissue and periprostatic ganglia and involved the seminal vesicles. The biopsy showed the cancer as Gleason 7 (4+3 per Bostwick and 3+4 by the local pathologist) with some grade 5 cells occupying less than 5%. During the surgery, the doctor took additional tissue from around the right side of the prostate. However, he did spare the nerve on the right side because he felt like it was safe to do so. This is in accordance with our instructions to him. (Maybe it wasn't such a good idea after all) Of course we now have several questions for our meeting tomorrow.
- Why would the final pathology not show any grade 4 cells when both biopsy results identified a high amount?
- hat is the likelihood that radiation or other treatments will be needed, especially since the nerve was spared?
- Is this as bad as we feel it is or are we misinterpretting the findings?
- Does any one have any other questions we should ask tomorrow?
May 2, 2009 - We met with my surgeon on Thursday to have the catheter removed and to discuss the pathology report. The catheter removal was simple and painless.
The doctor confirmed that the pathology report was not good and not what he had expected to see. The cancer is more aggressive and more widespread than expected. He was unable to explain the change in the Gleason Score from 7 (4+3) to 8 (3+5). We asked if this was a tertiary grading, but he didn't know. He will followup with the pathologist to find out. We also asked that Bostwick review the pathology and issue a report. We also asked about the cancer stage. He stated that it is a T3b N0M0.
He is going to submit my case to the local cancer review board to get their recommendation for followup treatment. His feeling is that I will need radiation plus hormone therapy. He thinks the recommendation will be for 18-24 months of hormone therapy.
We will now begin researching these options, talking to medical oncologists, talking to radiation oncologists, and possibly going to Seattle to the University of Washington for consultation.
Its now been two days since the catheter came out and incontinence is not too bad. I'm using one small pad during the day and have been using one large pad at night. The nights have been pretty good and I will probably use a small pad tonight. I'm mainly "drippy" during the day - small leakages but nothing major. Hopefully this will go away the next couple of days.
May 30, 2009 - I had my 6 week appointment with my doctor to review my first post-surgery PSA and to discuss future treatments. The PSA level was undetectable. This was very good news. However, it was tempered by the knowledge that I would need further treatments since there were positive margins and cancer in the seminal vesicles. We had asked that the pathology slides be sent to Bostwick labs for a second opinion. They said the cancer was 7 (3+4) which was different from the local pathologist report of 8 (3+5).
Because the cancer was in the seminal vesicles, my doctor took the case to the local cancer board for their review and recommendations. They recommended I begin radiation treatment and also have ADT for three years. My doctor had previously said he thought I would need the ADT for 18 months to two years. He wanted to wait another month to start the radiation. Although my continence is pretty good, it can be better and the doctor want to give me time to get better. We asked when the ADT would start and he stated today. Needless to say we were not prepared for this possibility, but felt that it was best to start. He then gave me my first Lupron shot. It is a 4 month shot, so the next shot will be the end of September. We discussed the side effects of the shot even though we were pretty familiar with them from our earlier research.
Today my wife and I enrolled at a local athletic club to begin weight and strength training. We had read several times that this was a good way to combat the anticipated muscle loss and weight gains. The next couple of weeks should be interesting as the side effects begin to make their appearance. Hopefully it won't be as bad as some men have experienced.
The next step is to make an appointment with the radiation oncologist. I'll keep you posted as things progress.
We met with the radiation oncologist in mid-June to discuss the radiation treatment. He wants to wait another month to allow for further improvements in incontinence. I'm probably 90% and still getting better. After some discussion about the side effects of radiation and the benefits of combining it with ADT (hormone therapy). He commented that based on my undetectable PSA level and the possible side effects of ADT, he didn't think I needed to be on ADT.
So now we have one doctor (and the cancer board) recommending radiation and 3 years of hormone therapy and another doctor recommending radiation alone. This has left with a lot of questions about the best course to take. After some consideration, I have decided to contact a doctor at the University of Washington's prostate cancer center. I received referrals from some of our support group contacts. The two recommendations were Dr. Tia Higano and Dr. Bruce Montgomery. Because of the difficulty in getting on Dr. Higano's schedule, I was able to get an appointment with Dr. Montgomery. I was told that he is the head of the prostate cancer center at the University of Washington. Hopefully, he will be able to give us some guidance.
July 8, 2009 - We met with Dr. Montgomery on July 1. He had been through the file and requested that the UW pathology department conduct their own pathology report on my prostate, lymph nodes, and seminal vesicles. Then he surprised us with the news that they had found a very small amount of cancer in one of the lymph nodes that had not been found in the prior pathology reviews. They also changed the Gleason score to 4+3=7. The staging is now T3b N1M0. Because of these factors, he said that radiation and 24 months of ADT was definitely necessary. He said the lymph node involvement was a "game changer".
Needless to say we were in shock at this new information. After having time to digest this new diagnosis, we are glad we went to him. We now feel we have a better understanding of what we are dealing with. We have an appointment next week with the radiation oncologist. Its our understanding that the radiation will now include a wide area to include the lymph node region. We'll know more next week.
July 13, 2009 - We met with the radiation oncologist to discuss the updated pathology and treatment plan. He indicated that the new diagnosis would warrant increasing the field of radiation to include the areas just above where the lymph nodes were taken. He said they are limited on how high they can go because of the small intestines and other organs in the area. We discussed my current status and when I would like to start. I felt like my incontinence was pretty well gone except of a little stress incontinence. I decided that I was ready to start now.
July 16, 2009 - I went in to have the marker seed implanted. The process was similar to the biopsy but a lot less invasive. The seeds were implanted through the perineal area between the anus and the scrotum. The doctor injected some local anesthetic then inserted the seeds. Other than a little discomfort, it was a pretty easy procedure. Next they took me down to the simulation room where they did some preliminary scans for use by the doctor in making up the treatment plan. They had me lay on the table and place my legs on a large "pillow". Once I was probably situated, they formed the pillow around my legs and set it to harden it. This will be used to help position my everyday for the treatments. They also gave small tatoos to help in the alignment of the radiation equipment. Now it time to wait for the doctor to make up the plan and set up the first treatment.
July 27, 2009 - I received my first of 39 treatments today. The technicians took my into the radiation room where I laid down on the radiation machines table and placed my legs in the mold made earlier. They spent some time making sure everything was properly aligned, then left to room. For the next 5-10 minutes the radiation machine rotated around me and administered the radiation from 9 differenct angles. After the treatment, we met with the radiation oncologist so he could explain the entire treatment plan. He will meet with me once a week during the treatments. I'll keep making updates during the course of the treatments.
August 22, 2009 - I'm now half way through my 39 IMRT treatments. Its been a fairly uneventful process. I notice that I'm a little more tired at bed time, but nothing too major. I've started noticing some burning while urinating, but so far no bowel problems. I continue to go to the gym and work out three days a week and then walk on the treadmill at home 2-3 days a week.
Also, the ADT doesn't seem to be too bad so far except for the hot flashes. Some days I only a few hot flashes during the day. Other days I have 8-10 during the day. I usually have 2-4 during the night which makes getting a good nights sleep a chore. ED continues to be a problem, but I guess thats to be expected while on the ADT.
We continue to be active in the local support chapter and other prostate cancer activities. We will be going to Washington, DC in late September to participate in the National Summit on Prostate Cancer. This should be interesting.
I'll do another update in a couple of weeks and I continue with my treatments.
September 17, 2009 - Finally---I had my last radiation treatments today. I had two today because of an upgrade scheduled for tomorrow. This has been a surprisingly easy, uneventful treatment. The only side effect during the 8 weeks has been a little burning during urination. I have a followup with the radiation oncologist in a month.
I go in Monday to have blood drawn for my second PSA test before my meeting with the urologist on the 29th. I will receive my next Lupron shot at that time. So far the side effects of the Lupron haven't been too bad. I've had some weight gain (about 6 pounds), some breast enlargement, a little fatigue mainly late in the evening, and my wife says she has noticed a slight change in cognitive ability. Main effect of course has been the hot flashes. Some days aren't too bad - just a few flashes. Other days are worse with 10-15 hot flashes during the day and night. I haven't found any rhyme or reason to what causes one day to be better than another.
Next week we leave for Washington DC to participate the National Summit on Prostate Cancer put on by Zero. We will participate in some seminars and then will meet with our Congressmen to discuss funding issues and legislation affecting prostate cancer research and treatment. This should be an interesting trip.
September 29,2009 - I met with the doctor today and received the results of my second PSA test since surgery and completing 8 weeks of radiation. PSA was less than 0.04 which is the lowest the lab goes. After discussing my current status, I received my second 4-month injection of Lupron.
January 28, 2010 It's been a while, so it's time to update things. I got my most recent PSA test results on Tuesday - Still undetectable. Of course we still don't know if its that way because the IMRT got the rest of the cancer or because the Lupron is keeping things down. The question can't be answered for a couple of years once I'm off the Lupron for a while.
I also received my third 4-month Lupron shot. The side-effects still aren't too unbearable. The hot flashes still come and go. Some days I don't have too many. They're usually in the morning and evening. Other days, I have more and they tend to be more intense.
I have put on about 15-18 pounds since I started on the Lupron. It seems to have leveled off in the last month. I have noticed that in the last couple of months my knees and fingers have involuntary jerking. The seem to be mainly at night. More annoying than anything else.
Overall if this is as bad as it gets, I can tolerate it for another year. My wife and I have become quite active in Us Too. My wife is now a national Director for Us Too International and I am now the Chapter Leader for our local Us Too support group. I feel that I have a responsibility to help other men and their families deal with this disease.
June 2010 - I just had my 4th Lupron Depot injection last week. I have now completed one full year on the Lupron and my PSA is still undetectable.
I also had my 2nd bone density scan. Since ADT does have a tendency to cause a decrease in bone density, I wanted to see if there had been any change. The scan did show a significant decrease in bone density in the lower spine. I started going to a new internist in March and he recommended that I take at least 1600 mg of calcium in addition to the 5000 IU's of vitamin D3. I hopeful that this will help with the bone density scan next year.
Other than that, the first year has not been too bad. I've put on about 20 pounds and it is a constant challenge to keep it down. I continue to go to the gym for resistance exercises, although the last two months have been a challenge due to some health issues with my mother. I have some ocasional fatigue, but not as bad as I had back in December. Hopefully, the next year will go a smoothly as the last.
October 31, 2010 - Its now been one and half years since I had my surgery.
Earlier this month I had my latest injection of Lupron and got the results of the latest PSA test - still undetectable. I now have only one more injection to go. I'm still watching the scales inch up and still have hot flashes multiple times a day and night. I also find that I am frequently more tired in the evening. I have not been to gym as regularly the last few months due to a lot distractions (travel, work demands, etc). Hopefully, I will get back on track.
Since I have only one more injection, we thought it would be good to touch base again with Dr. Montgomery at the University of Washington Prostate Oncology Center. Our questions were mainly whether to continue the Lupron for another year and whether there were any other changes I should be making. He said that there was no new studies out that would indicate that 3 years on Lupron would be better than 2 years for my situation. I have to admit I was glad to hear this.
The only thing he did think I should do was add a statin. He felt that lowering my cholesterol further would be beneficial for fighting prostate cancer. Overall, I feel positive about the current situation and future.
February 17, 2011 - On Valentines Day I received my final Lupron injection. I also got my latest PSA test results - still undetectable.
I'm sure my next test will be the same although what the future holds after that is anybody's guess. I'll be glad when the hot flashes end. That has probably been the biggest side effect of the Lupron. I still find myself a little more fatigued at the end of the day and my cognitive functions are not quite as sharp after two year. Hopefully, by this time next year I'll be able to report that things are back to normal.
My wife and I continue to lead our local UsToo support group which we both believe is a valuable resource for others starting this journey.
June 16, 2011 - We just got the results of my latest PSA test - undetectable again. I had my last Lupron 4-month shot in February, so this was not totally unexpected. It will be interesting to see the next PSA results in October. I won't have the Lupron holding things back then.
I hope that the side effects will begin to subside - I really won't miss the hot flashes. Maybe the ED will eventually get better although I'm not going to hold my breath.
Everything else is doing well.
April 7, 2012
Its been a while since my last update. I had my last lupron shot in February 2011 and have had two PSA; test since then. The most recent was in February and was undetectable. The doctor also took my testosterone level in October 2011 and again in February. The level had risen to 53 in October and 75 in February. The 75 was just barely in the normal range according to my doctor. I've noticed that body hair is slowly starting to return and most importantly the hot flashes are subsiding after two years. I'm down to 4 to 5 a day from my average of 12-15 a day during most of the two years I was on Lupron. After missing out on my daily workouts for about 4 months due to work demands, I am now back to going to the gym three days a week and walking on the treadmill at home two to three days a week. I'm also working to lose some of the 40 pounds I put on. Its a slow process, but I'm beginning see the weight creeping down.
Since its now been three years since my surgery and a year since my last lupron shot and my PSA; is still undetectable, the doctor agreed to extend my next PSA; test to 6 months instead of every 4.
Everything else is going well and I continue to chair my local Us TOO support group. My wife and I are planning to attend the next ZERO conference in Washington DC this September. This will be our 4th trip and we are trying to bring several other survivors from our local chapter. Some day we will all see a cure for this disease.
August 9, 2012 - I just had my latest doctor's appointment to review my current stats. The PSA is still undetectable. Its been over a year now since I had my last Lupron shot and my testosterone level continues to come back. It's now up to 120 and the hot flashes continue decline. I'm now down to two or three a day from my peak of 12 to 15 per day. I'm definitely not missing them. I'm also starting to see weight work its way back down. After putting on about 40 pounds while on the Lupron, I've now lost 8 pounds. Still a long way to to go before I'm back where I'd like, but at least its improving. My next appointment will be in February.
Wendell
February 17, 2014 - It been a while since my last update, mainly because there has not been anything special to report. Last week I had my latest PSA test and am pleased to report that it is still undetectable. I have now passed my 5 year mark since I was first diagnosed, so I've been given the ok to go to annual testing. I'm still having occasional hot flashes even though its been two years since my last shot of Lupron. Testosterone levels are still not entirely back to normal. In fact the level dropped from 204 six months ago to 139 this time. The doctor didn't have any explanation for the change. Everything else is doing well, so I probably won't have another update until next year.
Wendell's e-mail address is: wjeffries54 AT hotmail.com (replace "AT" with "@")
NOTE: Wendell has not updated his story for more than 15 months, so you may not receive any response from him.
