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A long walk to Freedom.

Duppie
Posts: 2
Joined: Mar 2011

Greetings to all of you. A quick recap of how I ended up here: Diagnosed in June 2009 with a radical prostatectomy performed on the 9 Sept 2009 (54 years young at the time).
This is now 18 months behind me. Unfortunately my last psa count has risen from 0.2 to 0.44.
I had a meeting with my specialist after the first non zero result and I went away with a recommendation to an oncologist (I insisted on this - can look into the future). He had done his part by removing it.
At the time of the operation my prostate was 4x the normal size.
This was a blessing in disguise as the cancer cells had space to grow and did not evolve outside my prostate. This was verified by a scan at the time.
My family has a history of cancer genes and my elder brother was also diagnosed some 4 years before me with this illness. My mother and elder sister passed away from breast cancer - this was despite having undergone all the operations.
Today I believe that the medical fraternity does not have enough knowledge in diagnosing this disease when it is still controllable. My history on hindsight is as follows:
1. I stopped cycling due to a pain developing from sitting on the saddle. This became worse later on when sitting flat on hard surfaces. A few visits to my local doctor was a waste of time. I later battled to pee - with the urine not leaving your body gout is creeping up on you. Personal experience.
2. Later on (I work in a coal mine) I started experiencing severe sweating (ascribed to being not young and fit anymore) when walking underground (in a cool 22 degree C atmosphere?)
3 Quite a few doctors refused to do allow psa tests as in their opinions it was an overrated test - all however insisted on doing a finger examination. Maybe they got more money from the medical aid for doing it this way. I never followed up on it.
4. The final crunch came when I was using the ablutions at the local movie house and I was peeing blood all the time - I changed doctors and that was the beginning of a long journey.
5. I went for the standard psa test (about $40 for the laboratory cost).
6. After this I had a very expensive, very painful and stressful biopsy. This identified me as having had a Gleason 6+6 score and a psa of 8+.
7. I also went for a much less cheaper, blood-free and stress-free nuclear scan which took one hour on my back and 4 hours in total. This showed I had cancer in my prostate with no metastases outside my prostate. It also left me with a nice photograph of my skeleton.
7. I was in hospital for 5 days and away from work for 6 weeks for recuperation. After that I had to take it nice and slow until I was healed. Went to work early but left after 3 days as I saw blood in my urine. During the operation some 140 micro-stitches are put in and they need time to heal properly.
Some observations from my side:
1. I am sure the 22 biopsy holes allowed the cancer cells to escape outside of the prostate.
2. The nuclear scan could show exactly the same at less than 10% of the biopsy costs with no risks etc. Al the doctors need to know is that you have cancer in your prostate - they cannot remove it selectively anyhow.
3. A radical prostatectomy is the last type of operation you want to have. You will have bladder problems afterwards as your one control valve has been removed. You will have ed problems irrespective of nerve sparing procedures - my specialist really could not explain to my satisfaction why I am 100% ed despite his initial claims of performing the operation correctly. Please accept his job is to save your live or to add a few years to it at least. I am thankful for this.
4. You want to keep your psa reading to <2 - use medicine or whatever to get it right. Don't go overboard.
5. You will have testosterone problems as the prostate manages this - I suffer from severe sweats now and tire easily (I am quite big and strong). And I have been losing hair at a rapid rate.
6. I tried Cialis which gave me terrible heartburn - who wants free pills? lol
7. Our view is that sex is not important enough to worry about it. I still have my loving caring wife.
8. Statistics is against us. Sorry for that but just accept as part of the game were in.

What does the future hold for me:
I have a very strong supportive family.
Hopefully I'll get to be 70 years old and still have some time with grand children - we hold thumbs for this.
I cannot turn the clock back and will thus manage this disease as best as I can - I have changed jobs due to the severe stress from running a mine. This was not good for me at all.
IF (and it is only an if) my psa count gets to >2 I'll undergo further treatment.
I pray that this disease will be preventable by the time my son turns 40 (in 16 years time).
I reside in sunny South Africa.
I am available for chats re

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Duppie,

Welcome to the forum and thanks for sharing your remarkable story from South Africa. As you may know, most urologists would classify your PSA reading of 0.44 ng/ml as evidence of a biochemical recurrence and it continues to trend in the wrong direction. There are many studies that suggest that treating this rising PSA early with salvage radiation treatment (or radiation in conjunction with HT) offers excellent prospects of curbing the growth of prostate cancer following initial treatment. But you seem to have a firm idea of the course you will follow and I wish you the best in your personal battle with this disease.

Looking forward to more of your story when you have time to share,

Best,

K

VascodaGama's picture
VascodaGama
Posts: 1567
Joined: Nov 2010

Duppie

Survivors of prostate cancer (PCa) had a common goal in their initial treatment in regards to cure. Recurrence is never in our minds but probabilities exist and we will keep trying to have the “bad guy” under control.
Thanks for sharing your chronology of events however I think that some guys here will not agree with your observations. In prostate cancer each case tends to be different and so it is the “reaction” from patients. Some do well and some don’t.

I do not know your reason to choose a threshold of PSA=2 as a means of controlling progress of disease. The pathological stage (not posted here) can give you a better outlook of what you can expect in the future and if indeed “2” is the right choice in your case. The majority of doctors tend to follow the guidelines from NCCN (http://www.nccn.org/professionals/physician_gls/f_guidelines.asp) that sets a PSA of 0.2 ng/ml as a “marker” indicating recurrence, which is your case. I would recommend you to read about the basics in these site;
(http://prostatecancer.about.com/od/symptomsanddiagnosis/a/recurrence.htm)
(http://www.webmd.com/prostate-cancer/guide/prostate-cancer-recurrence)

I had surgery (RP) in 2000 and did not experienced “remission” (PSA <0.05). The lowest PSA after surgery was 0.12 and recurrence was declared at 0.28 five months after surgery. This was confirmed in the following PSA test of 0.42 three months later.
My case was diagnosed as micro metastasis and I was recommended to WW. That was the protocol chosen by many physicians at the time, but I believe that nowadays the preference is to guide patients to salvage radiation therapy in combination with hormonal treatment.

I wish you a successful and continuous good recovery from treatment and diagnosis.
Welcome to the board.
VGama

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