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Jose Alson lives in Angola on the West coast of Africa. He was 47 when he was diagnosed on January 14, 2005. His initial PSA was 31.19 ng/ml, His Gleason Score was 7 and he would have been staged clinically as T1c with a T2b staging allocated post biopsy. His choice of treatment was EBRT (External Beam Radiation) + adjuvent ADT (Androgen Deprivation Therapy). Here is his story:


I was diagnosed in January 2005, during a course of regular check ups that I've chosen to do every year.

Because I was feeling very tired, say exhausted since September 2004, especially in the evenings, after a course of physical activities, I decided to travel and do a check up outside my country. I used to play tennis and walk 4-6 km, 3 times a week. I've stopped doing all this 3 years ago (2003) because I started a new job and moved to another location. Apart from tiredness, I'd feel some discomfort in the bladder. My urologist of five years always told me I had a bladder infection, possibly a prostatitis. He never thought it was something more serious. He prescribed me some antibiotics and a painkiller and clear the condition. I had a cystoscopy in 2000 but nothing was revealed. I was seeing my urologist every 6 months until January 2005, when I decided to see another M.D. I went to South Africa (Pretoria) where I subjected myself to a full check up, first with a general physician.

He did blood tests and said everything was OK. I couldn't agree with him as I was still feeling very tired. He then performed others tests to check the condition of my heart, bladder, liver, lungs and colon. He did a DRE and said my prostate felt OK, with no irregularities. He said I was OK and could go and enjoy my holidays. I told him I was not happy because it seemed to me that something was wrong. Otherwise how could he explain the fact that I was feeling so tired every evening? He looked at me and asked me if I have ever had a PSA test? I said no and it was the first time I heard about it. He then drew some blood and told to come back in two days.

After two days, on the 13th January 2005, the result come back at 31.19 ng/ml. The doctor jumped from his seat and started shouting. He said he was shocked with the result and told me I probably had a very advanced PCA and would be dead in a couple of months. He sent me to an urologist who I saw the next morning. The urologist performed a DRE and said he couldn't feel anything suspicious but due the high PSA, a biopsy should be performed asap to rule out the cause of such high result.

The biopsy was done a week later. The pathologist assigned GS 7. Needless to say I was in a state of shock. My whole family couldn't believe what has happened to me/us. I was emotionally drown and the though of a pending death was consuming all my energies. The urologist who performed the biopsy was urging me to get treated by him asap, by way of surgery, to get a chance extending my life for some months/years, depending of what they find out after removing my prostate.

After two weeks of shock, I decided to take charge of my fate. Because I was feeling some pain from the biopsy, I decided to take Cypro and some anti-inflammatory capsules. I took Cypro for 2 weeks and started dieting. On 23 February, four weeks after taking Cypro and changing my diet (no sugar, red meet, more vegetables, fish and fruits), I had another PSA test and this one came back at 23 ng/ml.

From this result I started asking for second opinions as to what treatment to do. I was not interested in surgery. But after seeing three urologists and all of them pushing me into surgery, I decided to look for other therapies. I saw an Australian M.D. who was practicing alternative medicine in Luanda (Angola). He gave some advices and some supplements and reassured me that we could work it out. But my urologist and other friends who are doctors told me there was no evidence based or scientifically proven cases of cure by alternative medicine. In short, I ended up seeing another uro in Johannesburg who advised me to do radiotherapy. He sent me to an oncologist who after reviewing my case told me EBRT (External Beam Radiation Therapy) + Zoladex would be best for me.

So I had 39 sessions of radiotherapy plus four three months implants Zoladex- last shot January 31, 2006). All the treatments were done in Johannesburg - South Africa. My PSA a day after 39 sessions of EBRT was 0,31 ng/ml. 2 weeks later it was 0.14 ng/ml. One month later it went down to 0.06 ng/ml. It is keeping down up to now. (Last test - August 06 - 0,02 ng/ml). Hope it say there for a while. I'm seeing my uro on Nov., 28. I'll keep you updated.

Have I known what I know today, my decision on what treatment to choose would be different. I'd spare myself from all side effects I'm still experiencing (hot flashes - decreasing, ED, loss of libido, muscle waste and fatigue - some times, wait gain, gynecomastie, and now bowel problems).

Before I finish, I'd like to thank all you for putting down a wonderful site like this and for sharing your time, experiences and knowledge. Sorry for my English as I'm a Portuguese speaking.

 

UPDATED

February 2008

 

 

My latest PSA is 0.95, (Jan 23, 2008) after EBRT and Neoadjuvant Hormonal Treatment ( I had one 3 month Zoladex depot 3 weeks before starting RT and 3 injections after, finishing on Jan 20, 2006).

Since then I had no further treatment and kept on seeing my urologist and oncologist every 3 months. My PSA NADIR was 0.02. My PSA started to climb slowly from September 2006 when it went from 0.05 to 0.12. It kept on going up and down for the 16 months, reaching the above value last month, mainly due, according to the urologist, to prostatitis.

My next appointment with my doctors is scheduled for next Monday, March 3d, in Johannesburg. I will update my story in 3 weeks time when I'll be back home. Thank you again for your time.

 

UPDATED

April 2008

 

 

I saw my urologist and my GP - Internal medicine in Johanneburg, SA. They ordered a battery of tests, blood test, CT Scans as I was complaining of abdomen pain in the last months.

My PSA result was 0,65 from 0,95 last January. My urologist felt that this was due to an inflamation of the prostate, probably prostatitis. He gave me some antibiotics and antinflamatory.

On the other hand, my GP found that I have "diverticulosis" in the colon, which is the cause of abdominal pain. According to my doctor, there is no treatment for this condition apart from diet and exercise to shed some extra kilos. If it gets worse, I'll probably undergo surgery to remove the affected part of the colon. On top of that the blood test revealed that I may be diabetic as my glycemia is in the limit.

There was not much to celebrate this time. I'll need to keep my eyes wide open to see which way things will folllow. BTW, my urologist told that there is a new directive to measure recurrence for IRMT patients, which is as PSA of 2 + the nadir value. Would anyone confirm that for me please.

 

UPDATED

August 2009

 

 

My last PSA was 1.06 (May 2009)and it has been going up and down for last 15 months. I'm still working with a team of doctors that include my oncologist, an urologist and a internal medicine doctor. We've set a strategy of starting ADT when my PSA reach at 2.02.

All my other problems previously mentionned (glycemia, diverticulosis) have improved. I believe they were due to ADT, specally high glycemia. A part from groin pain which come and goes from time to time (which, according to my urologist, is apparently due to prostatitis), I don't have any other serious health concern. I've never experienced any problems with bladder control following my treatment and I'm still fully continent. My ED has improved considerably in the last 15-18 months.

I'll be seeing my doctors at the end of this month and I'll let you the how I'm doing.

Thank you very much for your time.

Jose's e-mail address is: jose.alson@yahoo.com