But whether that's good or bad isn't yet clear
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by Viking - October 24 at 2:41 PM
I have survived prostate cancer for 9 years now but at a considerable cost both financially but more importantantly emotionally.
When diagnosed I was never offered any form of councilling to help me make my decision as to what path to take. I undertook lots of research on line and asked questions of my oncologist but never really knew what questions I should be asking. All I felt was that I had to have the cancer removed somehow and started from that premis. Nobody ever suggested to me that I could wait for a year or so and see how quick or slow my cancer was developing. 'Watchfull waiting' was never ever suggested.
After the surgery I was hit by severe incontanence that never improved. I underwent a sling proceedure to help this but it only made things worse. Then the full impact of having been emasculated hit me. I could not get an erection. I had little or no feeling in my penis and so could not even masterbate. Suddenly it impacted upon me that I could never father a child again. At 62 the fact of this was not very meaningful in that I never expected to have more children but the realization that this was now impossible had a huge psychological impact.
Prior to surgery I had an active and enjoyable sex life with a wife 14 years younger than me. Suddenly it was over. I could not even remove my underwear without dripping urine on the floor. The side effects of the hormone treatment of course were severe and reduced any sexual desire to zero. I would lay in bed at night and cry because my wife was by my side and I could do nothing and did not want to do anything about making love.
THERE SHOULD HAVE BEEN COUNCILING AVAILABLE.
Nine years later and it is still almost as bad. The salvage radiation treatment actually made the incontinence worse and added a slight bowl incontinence to the situation. I can no longer X country ski, race on my sailboat and infact sold my boat because of a lack of energy and functionality. I used to enjoy long walks but do not have the energy for this and can seldom find the privacy to actually change my incontinence pads. My life is governed by the proximinity of washrooms in almost all things I do and that includes shopping and driving. At every turn I am reminded that I am now only half a man.
Yes I am alive but with hindsight I am sure that I would have prefered maybe 5/6 years of full functionality as opposed to the condition I find myself in. Quality of life is the most important factor in living. Living for the sake of it is, in my mind, futile and pointless.
We should all be able to get counciling right at the start of the process rather be driven by fear and surgeons.
by Viking - September 18 at 9:48 PM
I am 71 years of age. I underwent prostate surgery in Jan 2007. Following this I had about 2 yrs of Lupron followed by Zoledex. Following this, salvage radiation thereapy followed by high dose Casodex. My PSA for a few months was about 0.04 Eventually in 2013 my PSA had increased to about 10ng/L. I went on a trial using nitro glycerine patches which reduced my PSA to 3 and held it there for 18 months. Now my PSA is up to 9.4 from 3.4 in January 2015 which is a doubling time of about 4.6 months I think. Because of pain in my spine, groin, and pelvis I was given a CAT scan a couple of weeks ago. The result I received today. I am very perplexed by what I was told. It seems I have no cancer anywhere that is observable other than 2 lymphatic nodes which are about 1.5 cm each. If this is the case after 9 years how come my PSA is 9.4 ng/l? Just 2 little nodes and nowhere else in my body. All gone, completely disappeared? So why is my PSA not down to 0.1 or something?
Could they not just remove the 2 nodes and I would then be cancer free? Somehow this just does not ring true. I want to believe it and currently I am having no treatment as I am preserving my quality of life which was crap during hormone therapy. Surely if all I have is two tiny infected nodes, I can go on till I die naturally with no more treatment.
Any observations/advise? Thanks
by Viking - September 19, 2013
Frankly I have never found a study that upholds claims that vitemins and mumbo jumbo cure cancer. There are cases of some remarkable remissions but I have found no conclusive evidence that it is due to prayer or vitamins or diet etc. I do know that there are hundreds of unscrupulous people who prey on peoples fear when they are most vunerable and sell them lots of junk to take. "The drowning man etc"
Whilst a second opinion is always a good idea, you need to be careful that you do not have a hidden agenda as to what you want to hear and go from doctor to doctor until somebody tells you what you have already accepted as the only answer.
This is chasing a fantasy. Often it is better to get a second opinion, then accept what you have been told and get on with the process of treatment. At the same time do lots of research yourself and if you find something that looks hopeful in your case, then follow up by contacting that particular specialist.
It may sound cruel but often there are no cures but only different ways of treating the symptoms all of which may lead to the same end.
Do remember that whatever treatment is proposed, quality of life is paramount and if one treatment may prolong life by 3 or 4 months you need to be sure that the effects of the treatment don't make that three or four months not worth living.
I am battling PC. It will not be cured but I have chosen treatments that are stretching out my life expectancy but very careful to make that extra life 'good' life.
by Viking - July 04, 2013
PSA scores can change quite considerably whether you have PC or not. Sex before blood test can elevate PSA for example.
People with enlarged prostates from hyperplasty will also get raised PSA's
I have PC and have had my prostate removed back in 2006. Recently I had a PSA recorded of 7.2 and then from another lab four weeks later of 5.3. My last reading was 5.1.
Without a biopsy it is not possible to determine if there is PC
by Viking - January 03, 2013
Sorry forgot to say that my surgery was in 2006
On Jan 01, 2013 3:42 PM phredsilas wrote: At what stage of advanced prostate cancer does blood appear at the end of urination? This is a new development for us. Initial surgery was 26 December, 2005 and dr. said it has now metastized since October 2012. Any thoughts would be appreciated. Thank you kindly.
On Jan 01, 2013 3:42 PM phredsilas wrote:
At what stage of advanced prostate cancer does blood appear at the end of urination? This is a new development for us. Initial surgery was 26 December, 2005 and dr. said it has now metastized since October 2012. Any thoughts would be appreciated. Thank you kindly.
Did your husband ever have salvage or any other form of radiation treatment? I ask because radiation treatment can cause 'radiation cystitis'. This condition severly weakens the blood vessels in the bladder and causes bleeding. It usually manifests itself a number of years after radiation therapy. In my case it started back this October, quite severly and caused considerable worry. However a susequent visual inspection showed it to be 'radiation cystitis'. There are a number of treatments available but it can also eventually clear up itself. Hope this is of some help.
by Viking - July 12, 2012
I cannot find reference on CC to this article in the 'New Scientist'. It looks quite promising but then again it is only on phase 1 trials. You will see from the article that the research has been on going for some 15 years so hopefully it may hold out some hope of a PC cure rather than a slowing down. Check out the article in 'New Scientist' and ask your Oncologist/Urologist about it. The more people who show interest the quicker things might move.
by Viking - August 18, 2011
Thanks for your reply. I have read your message at least twenty times over the past number of months. You seem to answer everybody exactly the same.
Please don't bother me again.
The aggressiveness of my prostate cancer is hard to judge and I get little help in determining this from my oncologist. It does not help that I started treatment in Ontario with a RP and then had radiation treatment in the UK where I am living until next year before I return to Nova Scotia next summer. I was diagnosed gleason 3/4 PSA 16 in early 2006. I had ADT for six months then an RP in January 2007. I continued ADT for two more months. All margins clear, no sign of lymph node invasion. However PSA started to rise by the end of 2007 and at the end of 2009 PSA was 0.26 so had thee months ADT then radiation therapy in March/April 2010. Zero PSA at that point but after three months PSA back up to .09. In July 2011 my PSA was up to 0.6 which is twice what it was at the end of 2009.
So how aggressive is this cancer? I am expecting that by my next PSA in Octobe it could be up to 1.0. My British oncologist tells me that there is no point in doing a bone scan until PSA is at least 5.0 as nothing will show. I did have one back in 2006 when first diagnosed but nothing showed. My British oncologist said he would start ADT again until my PSA had reached 4.0 or even 5.0. Is that too late?
It has been five years since I was first diagnosed and I am 67. I am wondewring whether it would not be better to do nothing more and let the PC do its own thing from now on as I do not react very well to ADT. It is so hard to get oncologists to give a frank and honest prognosis.
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