On that day - 5th April 1996 my PSA was 14, with Gleason reading 2+2=4. At that time I decided on watchful waiting, followed eventually by Surgery.
During a routine yearly check in October 1996, my PSA was found to be 14. A biopsy was done which revealed no cancer cells. In April 1997 PSA jumped to 17, another biopsy again showed a Gleason of 2+2. My brother in law, a pathologist in London, together with a board of his colleagues, recommended watchful waiting. A friend suggested that I try alternative medicine. I jumped at the idea. Waiting for the PSA results every 3 months was nerve wracking. The person I saw made sense and I followed her therapy. Changing my eating habits, taking food supplements and vitamins. I lost a lot of weight, gained energy and felt very good and proud of myself. At last I was doing something for myself.
The PSA dropped to 12 and stayed there till April 2000 when it jumped to 34. Would have liked to have had brachytherapy, but the only specialist in Israel doing this type of therapy would not touch me, even when I suggested that I undergo hormone treatment or radiation to shrink the prostate. Left with little choice as my health fund would cover me travelling overseas for treatment, on the 26th February 2001 I under went radical surgery.
From September 2000 until surgery I under went hormone treatment to shrink the prostate. Being physically fit and mentally prepared, the operation and recuperation was not a problem. I suffered no pain, was released early from the hospital, had " fun " with the catheter. Within 3 weeks of its removal, I had full control of my bladder.
My libido has returned and the "Nerve Sparing" is showing signs of being successful. My Urologist wants to wait before allowing me to take Viagra as he prefers nature to take it's course. I am not so sure that I agree with him, but the erections are getting stronger and I hope will last longer. I look back on the last four years as a positive experience. I have learned to listen to my body and understand it's needs and feel so much better for it. I am trying to establish a support group in Haifa, Israel for PCa sufferers, but am not getting any support from the doctors or urologists. I do have the support of the Israeli Cancer Association. I would be pleased to be of any help to anyone who visits YANA. I have written an article on my experience with the catheter which might be of help to anyone facing the catheter saga.
Current Age = 61. Current PSA = 0.2. Current Treatment = Vitamins. Initial treatment = Radical Prostatectomy.
Seven months after RP; Physically fit, mentally coming to terms of living without a prostate. This mental adjustment is not easy, mainly from the sexual aspect. Nerve sparing was successful, but nerve bruising is taking a long time to come right. Erections I have, but not always for a long enough time to complete intercourse. Nothing worse than having an erection, both of us worked up, entering and me going limp. Luckily we both have a sense of humour. Things are slowly getting better and Myrna is attaining orgasm.
I tried Viagra, but felt that it was not what I wanted and still have 4 tablets left. Any one reading this in Israel and wanting them, give me a ring 04 8252084.
Am still battling to get a support group going here. The "macho Israeli male" doesn't want any one to know that he has Prostate Cancer. I am now waiting for the results of my second PSA after surgery.
I have a rather disturbing two weeks since my recent update and will be posting to the message board in the next few days. On the 3rd Oct. I had a PSA check and the results showed a rise from 0.1 to 0.4. After RP there shouldn't be any PSA; and definitely not an increase.
I asked my uro to do another test. He said there was no need and refused to give permission to the lab. I by passed him and had the ok given by our family doctor. The second test showed a PSA; of 0.5. Another increase in two weeks.
On top of this the hospital lost my personal medical history, which I gave to them prior to surgery. Needless to say I was extremely angry with the hospital and my uro for not relating to me as an intelligent human being who has a little knowledge of PCa and who has a right to what is needed for my body..I went into my meeting with the uro determined to be authoritative. I had posted my change in PSA; on Don Cooley's list and had many replies suggesting various procedures. I made the uro read these posts and watch with satisfaction as his jaw dropped. Apparently in Israel 0.5 PSA; after RP is accepted, but he understood from me that I do not accept any PSA over 0.1 and has scheduled bone and CAT scans in the coming weeks. At least I have got through to him.
The medical insurance fund that I belong to only gives me the choice of 4 uros and I chose the best of the worst, not very reassuring, but at least he is open enough to acknowledge that I do have a little knowledge and have world wide access to PCa experts who have made a study of this dreadful disease.
As it is said, "there is always a brighter side to everything" and I try and look for the half full glass instead of the half empty glass!
My Current Age is 6; Current PSA 1.2; Current Treatment - Starting Casodex on 22 March 2002. Initial treatment? Radical Prostatectomy.
Your update ... Since my last posting my wife has left me, the PSA is doubling every 3 months and my life is in a general shambles. Am slowly getting used to living by myself. An advantage is that there is not the tension that I had experienced in the last few months. I put the sharp rise partly down to the tension I was going through. I decided on Casodex 150mg as the least invasive protocol, with the minumum side effects. In three months time I will get a PSA test.
17 June 2002: Today I received my first PSA; since starting on the Casodex. Down to 0.3. Hope the next test in September will be lower. Have now been separated for 4 months and have got over the intial depression and have started rebuilding my life.
Addendum: I feel that there is a neglected area in the newly diagnosed section on every list that I have access to. Lots of scientific facts are thrown at the newbies, very little emotional support or means of support are given. I have written the article below. I would appreciate your comments.
Stress and Tension of the Newly Diagnosed
Anybody diagnosed with the most hideous disease a man can have will go into a state of tension. Since tension has been named as a possible cause of cancer, the tension that one experiences when diagnosed only aggravates matters. When newly diagnosed, I found myself suffering from symptoms that I hadn't experienced before. My libido was not what it had been prior to diagnosis and the need to urinate became more frequent, especially at night.
I delved into the mysteries of prostate cancer and read various books on the subject. After a couple of months I realized that I had to push (the reaction to) the big C to the back of my mind and start doing something for myself.
The first thing I did was to change my eating habits. Not easy, as I am a chef and was struggling to keep my small catering company afloat. As a chef, I was cooking rich, unhealthy food at least 12 hours a day. In my search for ways to help myself change, a friend suggested that I see a "healer" - which I did.
What the healer said to me about eating habits made a lot of sense to me and I decided to followed her regime. That meant cutting out all meats, diary products, most fish, white flour products, candies, carbonated drinks, tea and coffee. Herbal teas and green tea were OK. I started taking mega doses of supplements and vitamins. The immediate result was that I focused my time and energy on maintaining her program and, in so doing, I spent less time worrying about the unknown future. I did not hurry myself to decide on medical treatment. My PSA was 17, but my Gleason was 2+2 4. When, after three months of the new eating regime, my PSA dropped to 12, I decided to stick with the program. This is known as Watchful Waiting. By that time, I had lost 20 kilos, my libido had returned with gusto and as my son said, I had more energy than he had seen in me for the last twenty years.
What I am trying to emphasize is the following:
1. There is no urgency in deciding the direction that you are going to take. Check out all the options, speak to other survivors. Don't know any? Try the mentors list. We are here to pass on our stories. Join a support group if there is one in your area.
2. Change your eating habits, unless you are a vegan. Consider that our environment is highly polluted, food is often unhealthy, filled with hormones and preservatives. The air we breathe in the cities is poisonous and most of the water supplies are polluted or heavily laced with chemicals. Your body needs all the help it can get. Remember, if you use low octane fuel in your high octane car, the performance will be poor!
3. Take supplements and vitamins. Check out what is needed and than make your choice. Do not expect immediate results, it took you over 50 years to mess up your body. Give it time to build up its defenses.
4. Exercise is essential for good health in the form of yoga, marathon running, etc. etc. . Get off your butt and get your blood flowing. Take the dog for a walk each day. Try walking to the corner store instead of taking the car. Take your wife hiking over the weekends.
5. Have your wife involved. Share your fears with her. She has fears as well. Keeping unspoken thoughts and feelings bottled up leads to tension.
6. Many men keep their cancer a secret from their families. To "protect" his family, my cousin did not tell his adult kids that he had prostate cancer. To explain his operation, he therefore had to fabricate some "cock and bull" story. He now tells me how much stress this caused him and his wife. Your family are there to give you support. Don't waste this wonderful weapon in your fight.
I remember that terrific feeling of success when I received my PSA of 12. I had succeeded in doing something for myself ! I also remember that feeling of dismay when 4 years later my PSA jumped to 34. I put the jump down to the tension I was undergoing: I had closed the catering firm, was about to be dismissed from the job I had in a restaurant and my marriage had gone through a thorny patch. There are no rules to this prostate game. I underwent RP 8 months ago. The operation was successful. Almost immediately I regained complete control of my bladder. Nerve sparing seems to be successful.
On the downside, my latest PSA; shows a rise, now at 0.5, and I am arranging for a bone and CT scan. However, there is always the upside. Last week we managed to sell our apartment for the price we wanted and have found another one.
As a survivor of 5 years plus, I look back and see the experience as one of the most positive of my life. I have become a positive person. I have learned to make contact with my body. I came out of the RP without much hassle. My relationship with my wife is the best it has been in 36 years of marriage. The knowledge that I have gained and the help and advice that I have received from many other survivors, gives me the confidence to face what ever new hassles might be awaiting me.
All newly diagnosed prostate cancer victims, who are reading this - remember there are many more survivors than deaths and it is in your hands to carry on a full and complete life. Get out there and make it happen for you. Lenny Hirsch.
I want to share with you all the great experience I had today.
You all know how important it is for me in bringing prostate cancer awareness to this country and the development of support groups. Today the Israeli Cancer Association held seminar on prostate cancer. The speakers were leaders in the field except myself. There were 8 presenters and I was number 7.
All the professors proceeding me spoke with great authority and used visual aids. Their talks were very informative and technical. I was introduced as a volunteer for the Cancer Association and a cancer victim.
In my opening statement I said: "I am a warrior against prostate cancer for the past 6 years , not a victim."
From that moment on I had the audience of 150 in the palm of my hand. I told my story and had them laughing and crying with me. Those of you who know me well, know what an emotional person I am and how easy tears come to my eyes. At times I was choked with emotion and had to stop.
This is the first time in my long battle that I have felt so emotional. Perhaps it is because of all that I have been through, I do not know. At the end of my presentation I was applauded back to my seat. Afterwards many came up to me and said that, what they would take home, were my words.
I have since had a few phone calls from men wanting to join the support group and from people wanting me to give talks on the human side of the battle against this terrible disease.
Thank you for allowing me to share my wonderful experience with you. How do I sign off? To my kids- Daddy; To people who have known me from South Africa- Leonard; To all of you whom I have met up with here in Israel and on the net- Lenny.
Lenny Hirsch is now 62, he feels that the finest present he could get arrived just prior to his birthday. The latest PSA test of 0.1 is down from a level of 0.3 His initial treatment was RP and he is currently on Casodex 150mg & Proscar 5mg from which he feels he is putting on weight.
The support group that he started is growing and they are beginning to get through to the medics that they ( the PCa Warriors ) are entitled to respect and that their Quality of Life is more important than the statistics.
He has re-established contact with a woman who he took out 41 years ago. He now feels that this period of his life is one of the best he has ever experienced.
Lenny is now with an undetectable PSA.
I was on high dosage Casodex, now intermittent. But after one year of being on Casodex 150mg and with an undetectable PSA, I have stopped the Casodex, but will carry on with Proscar.
Lenny is now 64 and his PSA is now 0.90 ng/ml
Have been intermittent since March 2003, taking only Proscar,Vit.E. Vit.C. Garlic. PSA is moving up.January 2004 0.9. Next test is in May.
Lenny is now 65 and his PSA is 1.30 ng/ml
Life is pretty good for me. My PSA; is slowly rising, which can be expected after 2 years of not taking anything. At this stage I am not thinking of taking any action. Have started taking Celebrex.
Am kept very busy with my website in Hebrew ShalomProstate.co.il. Am in the process of starting another support group in Nahariya. The one I started 3 years ago in Haifa is going from strength to strength. We now have nearly 100 members.
Thank you for the Gold Star. Never achieved it at school.
The last year has been good to me. Have formed a beautiful relationship with a woman. My five year battle to bring prostate cancer awareness to the general Israeli public has finally succeeded. September 12 has been designated as the National Prostate Cancer Awareness Day. My website in Hebrew has had more than treble the amount of hits. I hope to start a new support group in the Northern town of Nahariya.
Of course there is always a down side, my rising PSA has finally reached 5.1. Quality of life is of the utmost importance to me. For this reason I decided to follow the protocol of Dr. Israel Barken of Santiago. Namely, 50mg of Casodex a day for the first month together with Avodart. If the PSA starts dropping, slowly reduce the amount of Casodex to once a week. My last meeting with Casodex was very successful. I am hoping that this time round the results will be the same.
Since my last update I took 50mg Casodex and Avodart. My PSA reached a nadir of 0.2 ng/ml. After a year I have stopped the Casodex as it was effecting my quality of life. sore and sensitive breasts, weight gain and Erectile Dysfunction.
After three months my PSA has reached 0.9 ng/ml. I am loath to take any action at this stage for the following reason. Quality of life issues. I prefer to enjoy my QOL rather than be a sexual and mental cripple. I have experienced ADT before.
In the long run I will have to make the decision of when to start the hormone treatment. In the mean time I live from day to day enjoying making the most of every minute.
Tomorrow will be as good as today.
Now 68. The last year has been in many aspects, exciting.
Firstly the woman I that was seeing has moved in with me. After six years I was beginning to feel lonely. Two months ago we moved to the center of the country. We now live in a small village on the top of hills over looking the coastal plain. As I am writing I can see Tel Aviv, 40kms. away
At the beginning of August we registered the "Living with Prostate Cancer Foundation". In September we organized an awareness day with lectures that were held in eight centers through out the country. We had a lot of press and media coverage. I am now arranging the establishment of a number of support groups. These are the exciting things that have and are happening.
The not exciting event is that after a year of Casodex and Avodart with a PSA not rising over 0.2 I stopped all medication. I felt that my body needed a break. Within three months the PSA jumped to 2.7. Re-test three weeks later, the PSA; reached 3.3.
I am meeting my oncologist this week and want to go onto a Triple Hormone Blockade,that is; Zoladex, Casodex and Avodart. Just hope that Anita will be able to cope withe hormone induced nonsense that I might cause. My last experience with Zoladex was not, to say the least, very exciting --
Lenny Hirsch Chairman The Living with Prostate Cancer Foundation.
The last year has been a year of changes. We moved from the desert to the hills over looking the coastal plain in the center of the country. Not the intensive heat or the dust storms that we experienced in the south.
My PSA reached a Nadir 0.5 on Casodex 150mg and Avodart. Last month I stopped the Casodex. I hope for a long off period and not having an excuse for the extra weight that I am carrying.
Last August together with friends and fellow travellers we formed the Living with Prostate Cancer Foundation. A non profit organization. Last September we organized lectures on Prostate Cancer Awareness in eight centers through out the country. During the last year we established two support groups and are in the process of creating another in Jerusalem. Next week September 10, in Jerusalem, we are holding a workshop for men after primary treatment. This is the first time such an event has been held in the city.
For more than 12 years I have been "addicted" to the various PCa forums that are available on the net. Over the last year I have found that they are no longer of interest. There is very little new to be learned and also I no longer have the time. This the only forum that I am active on. I receive 3-4 phone calls a day from people looking for advice,guidence or just a shoulder to cry on. Interesting, more than 50% of the calls are from wives or daughters.
I have a gut feeling that this coming year is going to be a good and productive year. What about my PSA in the coming year? Does it really matter what it might be, at the moment my pet cancer is under control?
It is now more than fourteen years after my diagnosis. There is not much that I have not tried to get rid of the cancer. Active Surveillance, Hormone Therapy, Radical Prostatectomy and the last ten years intermittent Casodex and Avodart have been my weapons. Now the Casodex is losing its effect and my PSA is slowly rising.
Off to my Oncologist. In went his finger and I was startled by his loud shout. "You are a very lucky man" He felt a lump in the prostate bed. Why lucky? Now there was a target to aim at. I was to undergo a whole lot of scans and tests and visit the radiologist. He is an old friend and feels confident that he can zap the cancer for once and for all. His department has the most up to date equipment in Israel and was the first to use gold seeds as a GPS for the radiation.
I am relieved that he is not insisting on HT (ADT). The last time I had Zoladex shots I suffered. Now I have another burden to carry. For the last year and a half I have been suffering from Chronic Fatigue Syndrome. I will not go into an explanation of what CFS is, Google CFS. The constant exhaustion, headaches, sore throat, muscle pain and sleep problems together with Zoladex would have made my life unbearable. I hope to start radiation by the end of February at the latest and that at my next update I will be able to report on a zero or near zero PSA.
In the meantime The Living with Prostate Cancer Foundation, of which I am chairman, is making an impact on the PCa scene here in Israel. During the last year we organized three workshops for problems after primary treatment. More than a thousand people attended them. The two support groups are very active. We have around 300 names on our register. The coming year we hope to hold four workshops and establish another support group. November will turn into Movember and I hope that PCa awareness will increase through our efforts.
On this optimistic note I wish you all a low PSA;, a hard erection and a good 2011.
He runs a hot-line for the Israeli Cancer Association. Any one interested can be contact him at 972544570595 or 97246257151.
It is some time that I have posted an update. After 10 years of intermittent Casodex 150mg my cancer stopped responding and my PSA; reached 12.8. Those of you who have been following my journey, know that my top priority has been quality of life. A rising PSA; has not bothered me as much as the side effects of ADT. My oncolog felt something when he examined me and ordered a MRI ecoil. A growth showed up in the prostate bed and 35 treatments of RT was ordered. At last I was going to get rid of the cancer.
This was not the case. Six months after the radiation my PSA; had dropped to 1.2. After a year a year it rose to 2.8. I am now waiting my third shot. Besides the side effects of HT I have suffered for more than four years with Chronic Fatigue Syndrone. The combined side effects are leaving me exhausted, weak and unable to function as I used to. I have resigned my position as the chairman of The Living with Prostate Cancer Foundation and running the support groups through out Israel. For the last seventeen years I have been involved in promoting PCa awareness, helping and guiding men an their families. As my doc said, "You have to start looking after yourself" I am still getting phone calls and mails, but have pulled out of all other activities. Unfortunetly my PSA; has not dropped below 1.8. Will be doing another test next week.
I hope that my next update will tell of me doing intermittent HT.
In October last year my PSA reached 12.5. I tried Super Factor instead of Zolodex hoping that the side effects would not be so bad. Wishful thinking! Three months after my second shot, PSA; 0.9 I decided enough was enough and did not take the third shot. That was in March, by the end of June my PSA was UD without any medication. My onco. said "Don't ask any questions and go with it" which I am doing.
This month I am celebrating my 18th anniversary with my inseparable companion, Prostate Cancer. This last year has been an up and down year, but ending on a high note.
As I have all ready written about my experience with Chronic Fatigue Syndrome, which there was no cure, I am thrilled to tell that I have found an answer. The answer is a Dutch natural food supplement, Biozar. I was told that it was a cure-all and would help reduce my PSA. I was not interested, but when told that it strengthens the immune system and helps with energy and fatigue problems. As I had nothing to lose and everything to gain I started taking it 2 months ago. At the same time I started another round of ADT.
A few weeks after starting with Biozar all the symptoms of CFS disappeared and now two months after the hormone shot I have no side effects which normally starts within a week. On New Years day my PSA; was 12.9n/l and I received the shot. Today my PSA is 1.4. I do not know how much, if at all, the Biozar helped, my PSA is going down at a rate which amazed my Onco.
Happy to answer any questions
This last year has not been an easy one. The death of my friend Terry Herbert saddened me. We were in contact most of our fight. The death of a number of men whom I had helped over the years, also passed on before their time from PCa.
Last April (2014) I stopped receiving HT with an undetectable PSA. The PSA has now risen to 1.39. I really suffer from the SE of HT and am not happy at the thought of going back onto it when the PSA reaches 10 +. My PSA usually drops to UD within a month and I suffer for another year. I am now considering Estrogen Patches.
At the age of 75 quality of life is becoming more and more important for me. It is often said that the SE of treatment is worse than the disease.
I am ready to help any one if wanted.
Do I say that I am about to "celebrate" my 20th year of PCa. In way YES. I have learned to take one day at a time, learned the importance of being able to help others and to enjoy the little things of life that I never noticed before.
It might be old age or 20 years of the various procedures. I feel that my body is falling apart- renal failure,sciatica,incontinence, high sugar, not to mention loss of libido. I suppose all these things are part of the game of life with PCa
No, I am not depressed and still do a lot gardening, enjoy walking the dog and do a fair share of volunteering.
Lenny's e-mail address is: email@example.com