At the age of 66, after working four decades as a TV Broadcast Engineer, I decided to retire. After a couple of months of doing absolutely nothing, I decided to start a small business that could be operated from my home. About the time I was ready to launch the business, my wife suggested I have a physical, since I had not had one for at least six years.
A blood test was scheduled prior to my appointment, and early March 2004, I met with my doctor for the results, and a DRE (Digital Rectal Examination). You can't imagine how surprised I was to find my PSA was 105 ng/ml, and the doctor was not very happy with the results of the DRE. An appointment was scheduled two weeks later with a urologist.
The urologist confirmed the PSA, DRE results, and scheduled a TRUS and biopsy. The results were devastating to hear. A total of 13 cores were removed from both sides of the prostate and seminal vesicles. The Gleason Score was determined to be 4+4 (8) and it was staged at T3c, which meant the seminal vesicles were also involved. CT and bone scans were negative.
The urologist immediately started Hormone Therapy with a 3 month depot of Lupron, and wanted to schedule surgery within 3 weeks. I knew nothing about prostate cancer and put my trust totally in the hands of the urologist. The surgery was postponed until mid May, due to a death in my family, but then on the 17th of May, 2004, I had a retropubic radical prostatectomy.
During the first stage of surgery, biopsies were taken of several lymph nodes, to determine the extent of the escape of the tumour from the prostate gland. Because the nodes were clear, the surgery was completed. Both nerve bundles were not spared, and the urologist said he thought he was able to leave clear margins, however, he could not guarantee it 100%. The post pathology report indicated that the gland weighed 66 grams, and that the Gleason Sscore was 9 (4+5). Staging was inalised at T3b, pNO, MX, lymph nodes ck'd negative.
After a short stay in the hospital, I started my recovery at home with the urinary catheter and after about 10 days it was removed. I had what might be considered a normal bout of incontinence, and after hundreds of Kegels, and several months, the leakage slowly improved to a point of not requiring any protection.
One month after surgery, my PSA was 0.1 ng/ml and two and a half months post surgery, it was < 0.10 ng/ml. I received another depot of Lupron (4 months) and was scheduled to start 40 treatments (7200 cGy total) of seven-field, three-dimensional conformal radiation therapy, the last of October, 2004.
A month after surgery, I was invited to attend our local UsToo support group, and was starting to become very involved with researching my disease and treatments. I was beginning to find out that there is much more to this disease that what I was being told by my doctors. For example, I was beginning to question my doctors about bone loss due to the ADT (Hormone Treatment) and was not getting anywhere with that. There were other blood test that should have been done prior to surgery, but due to my ignorance at the time, many base line numbers were not obtained before treatment. So now I was playing catch up with what I should or should not be doing.
In any event, I proceeded with the Radiation Therapy and managed to get thru it with minimum damage. During the last week of treatments, I was beginning to have some rectal pain, but the doctor said that would not be out of the ordinary, and that the damage should heal in a couple of weeks. It actually was a couple of months before I felt that it had healed.
The first of December, 04, my PSA was still < 0.10 ng/ml and after much arm twisting, I received my first testosterone result, which was 26. I had another Lupron injection (3 months) and at the end of Feb 05, my PSA was still at < 0.10 ng/ml and my T (testosterone) level was < 20.
I was still trying to get my doctor to talk about bone loss and finally I was able to convince him that I should have a QCT bone density test. The last of February the test was scheduled and I was not surprised to learn that my bone mass was 79 and that I had osteoporosis.
After consulting with others of the UsToo group, an oncologist was recommended, who after reviewing my case, immediately started me on 70mg Fosamax, weekly.
One year post surgery, I received another 4 month Lupron injection and my PSA is still holding at < 0.10 ng/ml, and hopefully it will remain the same after my next test in August, 05.
I am very grateful that I had a support group available. If I have learned anything at all, is that you are putting your life on the line, if you blindly trust the information that you receive from most of the medical community. Those of us who spend endless hours researching prostate cancer are far more knowledgeable than most doctors (except the true artist who care) and this information must be presented to them before treatments. It is our choice, and is not to be dictated by anyone, regardless the fact that he has a MD after his name, or an insurance company who will only pay for what they decide is proper.
I now spend most of my free time as chairman of our local UsToo group, and my goal is to make our support group more visible so others have the opportunity to educate themselves, to be able to make the correct choices, because their lives are going to be changed. This needs to be in a positive direction, and not one that one will regret for the rest of his life.
December 5, 2005, I was able to convince my doctor that my PSA should be checked by the ultra test and I was very pleased to see that my last PSA test results were < 0.00. One cannot ask for anything better than that.
I hope to discuss with my oncologist in January, the possibility of taking a Lupron holiday, after being on that program for 21 months.
In March of 2006, my PSA was still undetectable at < 0.01 and I asked my Oncologist if he might consider the option of dropping the ADT for a period of time, however, he wanted to wait a few more months before considering it, and I received another 4 month depot of Lupron.
In July, 2006, I was retested and my PSA was still undetectable at < 0.01 and my Testosterone was 34. Since I had a good record of being undetectable and low level of Testosterone, he agreed to stop the Lupron treatments.
In November, 2006, I was retested and the PSA was still < 0.01 and my Testosterone had recovered to a level of 269. I noticed that my energy level had increased, and the side effects of the Lupron had nearly disappeared. I am still on Fosamax and supplementing it with Calcium citrate and Vitamin D3 for my osteoporosis. I expect to see improved QOL issues during the new year, and plan to continue to test every 4 months.
From where I started a couple of years ago, I am very grateful to have been successful so far, but because I was Dx'd with advanced PCa, I will monitor closely, and treat aggressively if it starts to return.
Since my last update, I have continued to have a CBC panel, PSA, and Testosterone checked every four months, and my most recent results have continued to be excellent. My PSA is still < 0.01 and the T is in the range of 265 ng/dL.
As mentioned in my earlier writings, I am being treated for osteoporosis that was discovered by a QCT test 2/05. I was Rx'd Fosamax weekly and if I remembered to take them, I was also supplementing with about 800 mg of Calcium Citrate plus 400 IU of (cholecalciferol) vitamin D3 daily. I suspected from every thing that I had read, that I was under treating the problem, and after receiving the results of another QCT last week, I found that I am losing the battle. Over the 2 1/2 year period, my BMD T score has dropped from -3.2 to -3.7 which indicates a progressive demineralization. My doctor requested that my last blood test include a test for Vitamin D, 25-Hydroxy, and the results indicate a very low level of 14.4 ng/mL. Therefore it is understandable why my osteoporosis has not improved.
Now I am starting a crash program in which to try to get a handle on it. I am going to increase the Calcium to 2,000 daily and the doctor has Rx'd vitamin D2, 60,000 weekly, and then we will see if the blood level will improve. I only mention this process because anyone that is on a program of ADT, should take precautions to prevent BMD loss, which is one of the major side effects of Lupron. Even though osteoporosis is a problem, I am still very happy to report the good news about my status of PCa.
I am having my next 3 month PSA test next week and will be checking with the Dr., a few days later for the results. Six months ago, my PSA went from 0.01 to 0.03, and the last test it raised to 0.06. I am nervously waiting for the next one. When the results are known, I will update my information. I'm hoping it hasn't started to increase enough that I must start thinking about a new defensive treatment. Will keep you advised.
Later: I received my latest PSA results yesterday, and in a 3 month period, my PSA had increased from 0.06 to 0.07, so at this time I am not overly concerned. My Oncologist suggested waiting 6 months before testing again, but I talked him into an appointment in 4 months. I just prefer to monitor closely even though the increments are very small.
I am still enjoying my vacation from Lupron and I expect to stay on this course for many more months.
I might mention that there was a special moment when I received the test results in December. I was expecting it to be in the 0.03 range and was stunned after looking at the number on the report, which was 7.76. I was shocked. The doctor was shocked and neither one of us knew what to say. The test was immediately re-run and while waiting for the results, for the next week, I was not the most popular person to be around. Two days before Christmas, my doctor called and gave me the best present ever. The true results were 0.06. The level had doubled from the previous test in September, but I didn't care. It was time to celebrate.
The reason for the mix-up has yet to be explained, and someone out there has a serious problem that I hope is discovered quickly and successfully treated.
I have just received my last Ultra PSA test results and I am not surprised at the results. With its upward trend, which started in 9/08 from 0.01 to 0.03, then to 0.06 in 12/08, 0.07 in 3/09, 0.12 in 7/09, I expected a much larger increase then what I received in 12/09 of 0.19.
Mind you, I am not complaining. Actually, since I am not doing any type of ADT maintenance (Avodart) I am not overly concerned at this time. My Oncologist suggested that at its current rate of increase, it will be a while before we should be concerned. I am suggesting that we resume ADT, or even ADT3 when the level reaches 1.5. Hopefully I will have many more vacation months without, but if it happens sooner, then I will deal with it then.
Since my last update, I have been enjoying my vacation from Lupron. I have not been placed on any type of maintenance therapy during this time.
The PSA level increased from:
0.19 in December 2009 to
0.30 in April 2010,
0.42 in August 2010 and
0.47 in December 2010.
This was not surprising to me, since my starting point in this journey was high to begin with.
Another concern has been bone loss. I was prescribed a weekly dose of a Bisphosphonate to compensate (Fosamax) five years ago but it apparently has not been an effective treatment. I believe my Oncologist is considering changing to Zometa, which should provide a greater chance of bone growth and help prevent bone mets.
Another concern over the last couple of years has been to improve my level of Vit D3. My Vit D,25-Hydroxy test in November 2007, indicated a very low (14.4) level. I was prescribed a program of 60,000iu weekly and it took almost 24 months to reach mid range. I maintain my current level by taking 2000iu daily and my last test was 59.1ng/mL (32-100) and holding. Calcium supplements (2000mg) has also been part of my daily routine.
In a couple of months, I will be starting my 8th year out from diagnosis, and I am grateful my treatments have given me a longer period of time that what was originally predicted by my Urologist. I expect my ADT vacation will be over toward the end of this year, which is ok. If and when my PSA hits 1.2 then I will gladly resume the program in order to get a year of undetectable (0.05) so I can enjoy another vacation.
Since my last update in Jan. 2011, I have continued to regularly have my PSA, Vit. D, and T levels checked every 4 months. The PSA continued to rise slowly during the year. In 4/11 the level was 0.60, Aug. 0.64, then in Dec. 1.10. My Vit D level averaged 48 ng/mL and my T level started dropping from 337.
My Oncologist suggested that my test in 1/12 would probably indicate a continued increase of the PSA to over the level of 1.2 and that I should prepare for an end of my Lupron vacation. We were both surprised to see the level had decreased a couple of points to 1.03. (??????) I was retested in Feb. and the level had again dropped a few points to 0.95. The doctor scheduled another test in April and I found out today that it had again dropped to a level of 0.92. During this time mt T level had increased too 396. My next test will be in July.
The only thing my doctor could say was "I don't know what you have been doing, but keep doing it". I don't know either, but I'm going to try. I know sooner or later things are going to change but for now, I'm enjoying the good news. I wasn't looking forward to be experiencing hot flashes during the Summer. I just love these extended vacations. It gives me time to work on my COPD problems.
With my PSA's unexplained downward trend, my Oncologist wanted to continue to test every 3 - 4 months. In 8/12 my PSA was 0.86 and in 11/12 it was 0.757. My T was 315 and my Vit D was 62.7. In March of 2013, we were surprised to see an increase of the PSA level to 0.92, and my next test will be in June, 2013. No one seems to really have an explanation. I continue to eat the same foods as before, and since I also have serious COPD, my exercise routine is basically nonexistent.
My wife has late stage lung cancer and is under going chemo treatments, so we are doing what we can to take care of each other. My PC is the probably the last thing for me to worry about at this time. Maybe thats why it has backed off for a while and is giving me a break. Sounds good anyway.
Here is an update of my PSA levels since my last reporting. 7/13 – 0.927 11/13 – 0.861 3/14 – 1.170 5/14 – 1.210 7/14 – 1.123. All of the other blood markers are within normal range.
As mentioned earlier, my wife was being treated with chemo for her lung cancer and I had a severe case of COPD, and I told the Doctor that I was not interested in resuming treatment for my PC at that time. My priority was my wife and I feared that resuming a course of Lupron was not in my best interest due to its side effects. Even though the PSA has advanced over 1.20 we both agreed that we would monitor it and see what happens.
My wife passed away 11/13, and my COPD has progressively gotten worse to the point that I am on Oxygen 24/7. I live by myself, and I am still able to take care of myself but require some help with some of the more physical duties around the house, thus services of a part time housekeeper is required.
During my last appointment with the Oncologist, the discussion resumed concerning the need to treat the PC with the rapid change of status of my COPD. I told him that it (COPD) would be my final curtain call long before the PC had advanced to a terminal stage and he agreed with me. Therefore we are going to monitor the PSA every 2 months and take it one step at a time. I'm sure he is going to want to take some CT Scans along the way, but I don't think I'm really interested at this time. Maybe later.
Since I last reported, there have been some amazing changes to my PC status. In 11/14, my PSA increased to 1.64, 12/14 it was 1.60. In Dec., my Doctor scheduled a CT Scan and Bone Scan. The results did not indicate anything suspicious. Again we had the discussion about starting a treatment, but I was still reluctant. I was not looking forward to the side effects of another round of Lupron. I was becoming more and more disabled because of the COPD and I didn't want to add the addition medical burden to my body.
My next PSA was taken in April and it had increased to 2.05. Now it has reached a level that was getting my attention. I was afraid of the PC moving into my bones, and I knew that it would include a lot of pain. I hoped it wasn't too late to start treatment.
My Oncologist immediately prescribed Biacalutamide, (Casadex), 1 oral tablet daily and 3 weeks later I had another Bone Scan and PetScan. After being treated for 4 weeks with Casadex, my PSA tested 0.30. The results of the scans were negative. I received an injection of Lupron which was a 6 month dose.
In Sept., my PSA had fallen to 0.015 and my Doctor said I could stop taking Casadex.
In October 2015, my PSA was holding at <0.015 and I was given another 6 month injection of Lupron.
My testing is now at 6 month intervals. I realize how lucky I have been this past year with the PSA dropping to remission levels. I have been able to handle the side effects with very little problems. Of course there are always the hot flashes and minor memory failures, but to my already weakened condition, due to the COPD, I have not particularly noticed a loss of energy because I have very little to begin with.
I think the key to my success has been the ability to gather as much information as I can from reliable sources, and having the ability to discuss my disease with a doctor who treats me not only as a patient, but also as a friend.
I know that I am at the twilight of my life and have made the necessary preparations for the future, whatever that may be. I hope my story will encourage others that may be facing circumstance similar to mine, to not give up hope. The human body is a fantastic living machine that refuses to give up and shut down. Just try to enjoy each day, one at a time. To those so inclined, prayer is a major roadway to success.
Since my last update, I am continuing to be treated with 6 month injections of Lupron. My CBC is monitored every three months with a followup visit with my Oncologist. My PSA has not deviated from the <0.015 level of September 2015, and my Doctor is suggesting that I continue on Lupron for another 12 months. I hope to persuade him to stop the treatments.
As mentioned earlier, my greatest threat is COPD. I am currently near to or in the final stage, and do not expect that PC treatments are going to be of any benefit. I am not bothered by the Lupron side effects but it would be nice to ditch a couple of them along the way.
Whenever or whatever the future brings, I am prepared as much as I can be. My PC trip over the past 13 years has been full of surprises and accomplishments. I was very lucky to have found an Oncologist that was extremely caring and willing to explain in detail our treatment plan and he took the extra time to listen to my concerns. He became aware of my involvement with the local UsTOO PC support group and supported that organization financially and by attending the meetings to present programs of information for the members. The medical partnership we have has contributed to my PC success and a great friendship.
I have had a few contacts from individuals that have read my story. I hope it has provided a glimmer of hope to those newly Dx'd. The words Prostate Cancer is not a death sentence. It might mean a few difficulties down the road but with early detection, early treatment, many men adjust their routines and continue on with their lives. I cannot say that I was cured of PC but I kicked it in the rear and kept it there. Maybe some day soon a permanent cure be found, until then we all must support each other with whatever means we have to keep our medical community focused to the task.
I wish all of you the best. Keep focused. Try to learn as much as you can about PC, and the treatments that are available to you. Don't look for magic cures one can find on the internet. Form a partnership with your Doctor and work as a team.
G's e-mail address is: ustoowichitachapter AT sktc.net (replace "AT" with "@")