THERE WAS NO RESPONSE TO AN UPDATE REMINDER IN 2017 SO THERE IS NO UPDATE.
After a 25 year marriage I became single again after losing heavily in the 2008 stock market crash. My life changed dramatically for the better without step-family commitments and stress from "keeping up with the neighbors", the life style my wife thought was her right!
Early in 2009 I sought medical advice solely to get a Viagra prescription. I had blood tests and my PSA had to be repeated as it was over 100, next time even more. I passed the rectum test, mri etc. but refused the biopsy - life was too good, and daily survival was far more important to submit to surgery even if the medical profession thought it necessary. I read so much conflicting evidence on PSA tests I have not had another. I had a heart problem several years ago with permanent damage, and each day to me is important. My urine flow problem was only now and again, my blood pressure up a little, but no shortness of breath or chest pains. My Dr would not prescribe the Viagra, which was not really critical for performance, provided I had the time and the caring!
Anyway, after 3 years of saving and healthy living, I have retired and live in Pattaya, and on an Australian age pension I can live in reasonable comfort. (Not like home)
My sex life has re-started and is great and important, I now have a 2nd life and can live like a mature 40 year old - but with my damaged heart I feel that 10 more years of quality living would be more than I could expect.
Lately my plumbing problem had been getting progressively worse and consistent - to the extent that I woke hourly to urinate - it was painful, slow and I never seem to empty my bladder. I tried pills (xatrall) they may have helped a little but the problem remained. I had a cystoscopy and a blockage was apparent. So I had TURP procedure the following week, after trying new pills that made no difference.
2 weeks after my TURP I feel I am on track for a full recovery urine-wise, but the biopsy report was not good - Gleason 4, 3 = 7, involving 70-80% of tissue examined. I cannot say I am surprised with the biopsy, I am lucky that the reading is moderate. [It is important to understand that the classification of tumours into broad terms such as 'low risk', 'insignificant', 'moderate' and the like are based on the results of needle biopsy, not on the examination of material from a TURP. The amount of positve material and the Gleason Score of 4+3=7b are both indicators of a disease that may not be categorised as 'moderate'.]
So now I know!
I return for a follow up appointment in 2 weeks, 3/10/12 and am getting close to decision time - so the more feedback I can absorb the better! I do have married friends who have had treatment - but I have not heard any success stories regarding incontinence or impotence - and the recovery period seems a long time, if ever?
What would you do?
Now I add correspondence from my "well-meaning brother", a specialist in an unrelated medical field.
So pleased all is well, albeit a little slow. What did the prostate biopsy show?
News not good Gleason 4, 3 = 7, involving 70-80% of tissue examined.I have next appointment 3rd Oct - I am hoping by that time recovery from TURP will be closer and I can look at my options objectively.
You have had a high score for over three years so the tumour must be very non-aggressive. Form below, the prognosis is very difficult to predict. You will need radiotherapy I imagine, or female hormone, stilboestrol. You should return home to us for treatment to commence.
RESULTS:
Multivariate regression of postoperative Gleason score groups against all 5 input variables (3 + 4 versus 4 + 3, number of positive cores, PSA, age and digital rectal examination) yielded a statistically significant positive correlation with preoperative PSA (p <0.001) and preoperative Gleason scores of 4 + 3 versus 3 + 4 on biopsy (p <0.001). Pathological stage correlated with preoperative PSA (p <0.001), Gleason score 4 + 3 disease (p = 0.016), positive digital rectal examination (p <0.001) and 3 or more positive cores (p = 0.016). Positive surgical margins were predicted only by preoperative PSA (p = 0.001).
CONCLUSIONS:
Because the biological behavior of biopsy Gleason score 3 + 4 or 4 + 3 of Gleason score 7 cancer differs regardless of the number of cores involved, future nomograms predicting pathological stage would benefit from examining 3 + 4 and 4 + 3 disease separately.
I think it is a little early to panic and come home. Thank you so much for your offer, I imagine the surgery would be free in Australia. I have not enquired about the costs here - should I proceed. I anticipate another 8-10 years life span (the hospital is worried about my abnormal heart). I do not really want to spend the next 2 years with pain, incontinence and impotence, with no guarantee of real improvement - and it is likely that my demise will be from causes other than prostate cancer. I am still researching and joined some support forums. The stressed message in all correspondence is to not hurry my decision!
You will block up again very quickly without treatment. The tissue will fade away with radiotherapy. No chance of avoiding it to stop the tumour expanding around the bladder base and causing you to need another TUR within 3 months or sooner.
So far I have no complications. I am being careful, not lifting and resting a lot. It is still uncomfortable urinating, but I do think there is an improvement each day. It is only 2 weeks and if I improve at the current rate I should be good within the next 2 weeks. I hope these opinions on TURP apply to me!
Repeat Operations. Symptomatic relief is usually maintained for at least 15 years after surgery, but BPH may return or patients may need a second operation for other reasons. Up to 10% of TURP patients need a repeat operation within 10 years. Sometimes, scarring in the bladder severe enough to cause obstruction occurs within a year of the procedure and may require transurethral incision (TUIP). More often, the urethra is scarred and narrows, but usually this condition can be corrected by a simple stretching procedure performed in the doctor's office.
No, you must realise that you have a malignant condition of the prostate, not BPH. Uncontrolled growth which will block you up again within three months or so. Your only sensible option is to return here for radiotherapy. Very good long-term results. The alternative is three monthly TURs until the cancer invades a major blood vessel, then it will be all over! Glad you have spoken with your daughter. She is happy to have you at her home, as we are.
Your phone message today confirms that you are in denial. You cannot accept the fact that you require urgent treatment. Unless you have the money to have the necessary treatment in Thailand you must come home ASAP. I have a specialist friend here who will institute treatment as soon as the extent of the disease has been established with the necessary tests.The alternative is dying of secondary deposits, a massive haemorrhage or renal failure in a grotto somewhere in Thailand where you have run out of money and have no friends or family with you.Act now, whilst you are able to fly home and get treated, with the expectation of 5 years life at least. Your Father lasted 16 years with treatment. Hopefully you will be the same, but 6 months to a year and at least another $15,000 if you continue to deny the problem you have.
Of course I am in denial. Should I add depression to my problem? - or should I stay positive. Of course I am concerned - but I am not in a grotto here and I have some excellent caring friends. I return to my Dr who have confidence in and will defer any decision until that appointment. I am sure if he thought my problem was so urgent he would tell me! The TURP was urgent and done the following day! And 5 years of life with the next 2 in nappies does not seem to be something to look forward to. I probably have had this cancer for 3 years now and it is still moderate. I read it is not the current readings but the change in readings that advise the urgency. I am hoping for active surveillance at the moment but I have confidence in my Dr who is treating me in person with excellent hospital facilities and will follow his advice. I thank you for your concern but I am not ready to return with my tail between my legs giving up all hope of an enjoyable life just yet! Thailand is not a third world country medically - I would think there is a larger population of men my age per capita in this city than anywhere in the world and Thai people are very caring!Would my treatment in Australia be covered by medicare? The cost of treatment here may be no more than the airfare back.
None of us want to see you not able to make the journey home when you need to come and you are too weak to do so.We are not in a position to get you out of Thailand in an air ambulance, or scheduled flight with an attendant nurse. The only sensible thing for you to do is to come to Australia, have the course of radiotherapy and then go back to Thailand.I understand they give you medication for 2 months then 4-6 weeks of radiotherapy. Ask the doctor on 3 October about this. He may be able to start you on the correct drug regime. Also what treatment facilities they have, how much a full course of therapy would cost and also the cost of further TURs over this next six months. We do not want you to get depressed but you must be a realist. Your treatment in Australia would be completely covered by Medicare.
Any comments would be appreciated!!
Well this time it is all good news. I talk with Dr. and express my concerns, especially Henry's concern regarding the TURP procedure having to repeated within 3 months (and the reason why). He does not agree and happy to review my situation in 3 months subject to an acceptable PSA test. I have the PSA test. I get a phone call from Dr. an hour later confirming all is OK and we will meet again in January
The PSA result is 456.9 whatever that means. [For most people that would be a likely indicator that the disease is progressing - this is certainly a high PSA]
I watched the you tube video made by Sam Newman, the man we all love to hate - but his medical advice was to have immediate surgery.
My Dr. has been monitoring patients for over 5 years with my symptoms and to date they have no problems.
I am pleased to report that my functions all seem normal again after only 3 weeks. I am back on my motor scooter, my flow is like an 18 year old and I have had mind boggling sex, many times over a 3 day period! (Just in case)
My next appointment is 9th Jan and am pleased to report no complications by today, the first day of the new year.
I went for my checkup at the hospital today. My PSA is up slightly and my Dr. suggested I start a treatment of Zoladex 10.8 which involves an injection 3 monthly costing around $1000 a time. I assume this is Androgen Deprivation Therapy or LHRH.
As my Dr. is Thai I do not always understand what he is telling me. He thinks I look healthy and fit, and admires my positive attitude - but I do have heart damage from an attack some 9 years ago following stents procedure, and at 69 natural aging is taking its course. I do feel that 10 more years of life would be a bonus. He has also recommended the healthy diet of vegetables, nuts, pumpkin seeds, tomatoes, and avoiding cooked meats, which I am loosely following now.
I have done my reading and not overly impressed about being chemically castrated, particularly when I still feel OK, my urine is flowing as good as ever and I have a young enthusiastic partner.
I have postponed making a decision and would look forward to any comments contributor's to the forum may have. I wonder, being on a limited budget whether I should opt for the orchiectomy and get it over with, without all the chemicals.
Meanwhile I have started to concentrate on increasing my ph alkalinity. My alternative health Dr recommended this to me 3 years ago to my brothers dismay. I started with a teaspoon of baking soda mixed with honey and water yesterday. There seems to be many logical reasons this could work, with the cancer being fed with the sugar and then neutralized by this miracle stuff called baking soda.
I started on this web site "http://phkillscancer.com" which leads to much more enlightening reading. It is time I went out and exercised after being glued to my computer for the last few days!
In reply to a private email I am posting my reply as an update. I just hope you are all so lucky!
Yes - I am in denial! I have not been back for any checks since my last report and I try to eradicate my problem from my mind. I have refused PSA tests for a long time and have no faith in their results. I am keeping good health, I eat asparagus regularly and have increased my intake of vegetables and fruit. I eat chicken and pork and a little seafood. I drink beer, but other than the odd binge with holiday makers, only up to 3 daily - and many days none. I eat cooked tomatoes, add honey and cinnamon to my coffee. I walk at least an hour daily - and although not a fanatic, I am reasonably fit for my age (70). I take honey and baking soda every now again - I try to eat mainly alkaline foods - minimal processed foods, and do most of my own cooking.
Lately the need for urination at night with urgency is increasing - but my flow is still good - when I had the TURP I feared I would become completely blocked. My brother was adamant I would need a repeat within 3 months and that was 15 months ago. I take no medications or supplements, my blood pressure fluctuates but I am confident my heart will pack it in before I die a slow prostate cancer death!
Regarding my sex life, my libido is not the same as 30 years ago - but there are few days I do not indulge - I do live in Pattaya. I am surprised you take testosterone supplements - my recommended treatment was designed to eradicate my testosterone from my system, supposedly it is the cancer catalyst. Does anybody really know??? There are so many theories and conspiracies - thank goodness for the internet!
I concentrate on stress free living, I live for now and take each day as it comes as a bonus - especially if it includes acting like a 30 year old! I do not have the patience or the will to monitor myself as you have done. I would rather play pool!
Chok Dee
Lately I have been worried the dreaded cancer has escaped from its home in the prostate. My back, my kidneys and my whole middle body has been sore. I am uncomfortable whether I am standing, sitting, or lying down. This is creating loss of sleep, beer tastes strange, long walks are impossible, and my quality of life is rapidly declining. I am getting massages daily but my condition is not improving.
I have gone back to school to learn the Thai language. The teacher makes us introduce ourselves, and we ask and reply to classmates questions, all in Thai. For years I have trouble even remembering the names of my children, mixing them up in my head - so I am not finding stringing Thai words into sentences easy. When my turn comes to stand up and speak Thai I feel stabbing and burning in my body, and I suddenly realise this discomfort is a return of shingles - I am stressing, which probably caused the original problem.
When in Thailand hospital they treated my shingles with anti convulsion drug, which was much more effective than anything I had before. By the time I left hospital my only problem was trying to walk again - the shingles had gone.
In the past the only treatment medically for shingles were pain killers. I tried every remedy, painkillers, acupuncture and electrical impulse machines but it only kept the pain at bay for the length of the treatment. I used to sit in doctors surgery in agony waiting for my new pain killer prescription. He could only give me 5 days at a time each visit which was a real piss-off.
I kept searching the internet and found a new drug Lyrica on market. I asked my Dr for a prescription and he said he had never heard of it. We looked up my web page and he agreed it would be worth a try. The largest chemist in Surfers did not have it but ordered it and 2 days later I had my Lyricra tablets. They were not approved for discounts and I paid a price of well over $100 for 10 days supply. The good news is that they were effective immediately - and after 3 repeats my shingle pain had gone. I was feeling so relieved I sent a n email of gratitude to the manufacturing drug company.
Yesterday I go to one of the many pharmacies in my street and buy Lyrica together with Celebrex over the counter - price just over $30.00.
Well today I feel like a new man - I can feel the neuralgia is still bubbling under the surface but the Lyrica tablets work! I am now comfortable whether sitting standing lying or walking and have my life back!
The cancer is still frightened to leave its home in my prostate!
In the last week of July was playing pool with friends. I had been feeling unwell, tired, and suffering severe lower back pain for several months initially blaming shingles. Lyrica helped the pain at first but it was becoming obvious something serious was changing my body. My urine was occasionally bloody and to be truthful I was frightened have a hospital check up.
The game of pool was the last thing I remember before waking up in hospital surrounded by family (from overseas), friends and medical staff. I had been in intensive care for 4 days and not expected to live. My worst moment was gasping for air as I had somehow got water in my lungs. My medical report stated I had Sepsis in Urinal Tract, and needed heart surgery. Xrays exposed cancer attacking my lower spine.
I was treated with a Zoladex implant and was taking a variety of medications including morphine. My recollections of the next 2 weeks are rather hazy, I slept a lot but was free of pain. I was wearing nappies and had no control over urine or bowels. I could not get permission to fly home for free medical care and in the 3rd week I was becoming more aware that I had to get out of hospital before I had spent all my savings.
My friends and family moved all my possessions to a newly rented room leased by my girl friend - but a week later I was still alive and the same friends and family members organised a new lease in a wheel chair friendly apartment, and duly wheeled me in with the safety measure of an oxygen tank.
For the first two weeks I had trouble holding in any food and medicines, and without the devoted care from my partner would not have survived. I struggled to the hospital and managed to vomit over the reception nurse, wheeled into accident & emergency and was given an a magic injection that gave me my appetite back! From then on I am gradually recovering. I have just had my second Zoledex, my PSA has reduced fro 400 to 22, my weight is up 4 kilos to 52 (from 65).
I am still weak but walking each day and I am well enough to start riding my motor bike and become free and mobile again. I hope I continue this improvement but I think age is against me and I wake up eaach day just thankful to be alive - and not thinking too much about the future.
It seems the cancer is under control but my body has had one hell of a shakeup and the free and easy worry free days are over. I haven't smoked for years and although not a heavy drinker I have limited my bar drinks to Soda and lemon. I tried a Kamagra gel to see if it would help my non existent sex drive, but the only reaction was a head ache.
Although things are not what they used to be I have no regrets about delaying treatment - my last 2 years have been as good as any two years in my life - and if I had this Zoladex 3 years ago I would have missed a lot of fun and experiences - and not have met those that have given such great support!
Yes another year has gone by. I have had Zoladex 3 monthly but April 2015 I stopped, mainly because $1200 coming out of my pension is a huge drain. I have been in good health since recovering from my sickness last July, and my weight is back to normal. I am living a reasonably quiet life and although I wake early looking forward to the day, I tire early evening, in bed around 9 and sleep well. I react adversely to alcohol in any form and lack stamina walking - even though I manage maybe 1k per day - but it is work, not the fun it used to be.
October and November my body stated to feel uncomfortable again, mainly lower back - so I had another Zoladex 2 weeks ago and feel the improvement. I am taking an occasional Lyrica which seems to help as I think part of my problem is recurring shingles.
If I don't improve I guess the next step is radiation, but I just carry on thankful for each day I wake up.
I have decided to spend the rest of my days in Thailand, although medication free in Australia, quality of life with my partner will take precedence.
Ken's e-mail address is: kglennie2 AT hotmail.com (replace "AT" with "@")
NOTE: Ken has not updated his story for more than 15 months, so you may not receive any response from him.
