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This member is a YANA Mentor This is his Country or State Flag

Bob Wood and Liz live in South Australia, Australia. He was 58 when he was diagnosed in September, 2008. His initial PSA was 18.00 ng/ml, his Gleason Score was 8, and he was staged T1c. His choice of treatment was External Beam Radiation+ADT. Here is his story.

I am, or was, a reasonable fit and healthy 58 year old with not many cares in the world. In late 2007 I changed jobs and had to have a medical for the new job, (more like a fitness test as I am a boiler maker welder and you have to be in reasonably good health & fit ). My medical showed up protein in my urine which the company medic said I should get checked out. Not having a regular doc I went to a walk-in clinic and saw doctor #1. I had a blood test which was clear and was told I may have kidney problems and come back in six months.

Six months later I saw doctor #2 who sent me for a cat scan of my kidneys along with more blood tests and a 24 urine sample. The cat scan showed my kidneys were ok and I was told to come back in three months.

On my next visit to doctor #2, I had a blood test for liver and an examination of my prostate at the hospital. On my first visit to doctor #3 at the hospital, finger up the rear and told a bit enlarged but I will send you for a biopsy, most come back negative. That was the start of my learning curve.

An appointment was made for the biopsy and I learned of infection and bleeding. The biopsy was not so bad, a bit sore for a couple of hours . Back to doctor #3 for results and was handed a yellow flyer on cancer and told you have tested positive to cancer in 6 out or 6 samples - your Gleason Score is 8/10, I recommend a radical prostatectomy and off for an MRI and bone scan.

My MRI scan was OK I suppose, my bone scan was not; too many questions were asked like have you got broken ribs? I may have broken some years ago in an accident, but as I was in dream land for a while and the hospital I was in missed a couple of other injuries, it would have been easy to miss broken ribs. When it was suggested I may have arthritis on my ribs or some thing else panic mode set in. My next appointment at the hospital was not till May 2009. I rang the hospital to see if I could get the results a bit sooner and a date was arranged for the 17 November for me to ring doctor # 3 at the hospital and get the results. The hospital sent me a note changing my next appointment to January 2009.

Much more learning was now the order of the day. I finished work early on the 15 November and rang the hospital on the of chance I may be able to get the results , What a run around after a couple of hours it was suggested I go to my local GP which I did. Doctor #4 got the results of my bone scan, which showed no sign of metastasis, but could not get the results of my MRI. Cheerful fellow he also got my PSA score which was 18.0 - out comes your prostate and there goes your sex life - (thanks.) I rang the hospital on the 17 as arranged and was politely told come in for your appointment or ring next week - Doctor #3 is busy. They must have done a course in how to stress out people and passed with flying colours.

Next step back to doctor #2 at the clinic and I asked for a referral for radiotherapy. After a fair bit discussion and stating plainly I did not want to see another urologist at the hospital he finally agreed and asked me to wait a while until he got all the reports needed. The paper work was finally finished along with my MRI scan results which showed the cancer was confined to my prostate along with a letter from doctor #3 to doctor #2 explaining he was sending me for a biopsy and had explained all the facts to me my PSA was 18 etc. I must have totally missed that part of the conversation.

I rang the radiotherapy clinic and was given an appointment for Friday of that week, (bloody quick ) What a difference to be treated like a person and not a number or pest. Just about everything was explained how and why questions answered and finally he said you have to decide which side affects you can put up with from either having your prostate out or radiotherapy. That sold me on the radiotherapy. Final question if I go for radiotherapy when would I start. Prescription now and have the needle in the morning and we will contact you Monday for your next appointment. Lucrin (aka Lupron) was its name - one injection followed by another in three months. The clinic rang on the following Monday and set a date for the start of the radiotherapy part of the treatment , I asked one more question which the office person could not answer , but she rang back in a quarter of an hour after asking the doctor.

November 22, 2008, I had my first needle. I have to have a blood test in early February 2009 to check my PSA. Side effects rampant teenager for the first week with very little sleep, boy its good to feel young again but by the third week things have started to settle down and I am finally sleeping most of the night and my libido has dropped down. I seem to cough a bit but that's about all.

Now it is the waiting game as only time will tell if I have chosen the right course.

UPDATED

March 2009

Late February:

Just a quick up date on PSA count down to 7.4 - not bad. Another Lucrin needle for the next 3 months then tats on the belly and EBRT in May.

Side effects of Lucrin have been odd hot flushes (flashes for our Members in the US), not too bad, grumpy fuse is pretty short, lack of motivation, tiredness - very easy to go to sleep if you sit down to watch TV and of course absolutely no libido.

All for now - back to the waiting game.

UPDATED

June 2009

Time to update a bit:

I started EBRT 3 weeks ago. The first couple of times were interesting, now it is like watching paint dry. I am to receive 74 grays over 37 treatments.

Sometimes after treatment I feel ok; other times very weary. The bad parts are having to empty the bladder 1 hour before treatment then drink 400 mls of liquid (no tea or coffee) 2 hours before treatment. Most times after treatment trying to urinate is like riding a bike up hill for the first half to 3/4 then its down hill thank goodness.

The radiologist said I don't need hormone treatment over the radiation period as PSA has dropped pretty well. The local GP said I need it? Also informed the side effects from hormone treatment can last up to 3 months after the use period is up.

Back to day dreaming on the couch - another update in a couple of months.

UPDATED

August 2009

Finally finished EBRT. That was an insult to compare it to paint drying. Showing up every day was a pain in the butt. Cutting out caffeine was pretty hard , I love coffee, next on the list was emptying the bladder one hour before treatment then drinking 400 mls of water. If treatment was late it was hard to hold. After treatment it was back to the loo in a hurry, a half hour drive home and loo again.

Drinking 2 litres of fluid a day was not always easy as I do a lot of lifting and bending so there was a lot of rushed trips to the loo at work. Side effects not too many - mainly interrupted sleep do to lots of trips to the loo up to six a night in the last couple of weeks. Sometimes it was hard to urinate, if you strained too much a bit of leakage out the back passage was very easy - so no pressure to urinate was the order of the day.

If I had not had enough Citravescent , urination was a bit painful - ouch! Tried sex half way through the treatment; there is a fine line between pain and pleasure. I am not sure which it was.

In total I received 74 gray of radiation. After about one month after treatment finished most of the problems have gone - beauty! Erections don't seem to be what they were and close to no ejaculation is pretty hard to get used to. The radiologist said they won't improve. I have read that many study results on the subject I have worked out the only way to tell if I am totally cured is to toss a coin in the air, if it lands on its edge I am cured if not - get on with life and enjoy it.

Good luck to all and a low PSA.

UPDATED

February 2010

I missed one up date so you are getting two in one.

September's blood test returned a PSA of 3.4, not bad for the first test after radiotherapy. I was hoping the next would be the same or about the same. I should have had it at the end of last year but I was a month late getting it done and a bit slower getting the results off the doctor. My PSA was 6.5 - I hope that it is the spike you get sometimes after radiotherapy otherwise I am up the creek without a paddle.

But not to worry - if I wake up next day alive I may think about it then now to get on with enjoying life.

Best of health to all Bob

UPDATED

July 2010

Results from the last two PSA test are in - both are like the Titanic, going down from 3.6 to 2.5 over a three month period. I think I will go on to six month test now things have settled down.

As it is close to a year since I have finished hormone treatment and started EBRT I think it is time to review the after effects:

Yes I do miss my hair not going darker and thicker, but that was the only good side effect of hormone treatment. My libido took a long time to return - probably six months. My pot belly is slowly going, but my man boobs even if they are small seem to be here to stay. EBRT no real problems.

ED is not a problem, but having an orgasm and nothing comes out takes a bit of getting used to if ever, so sex is not as good.

Apart from that life is normal - cured or in remission only time will tell.

Low PSA to all and good health.

Bob

UPDATED

February 2011

Just a quick up date on my PSA. It has gone from 18.5 down to 1.50. Not bad after six months on Lucrin and 72 gy of radiation.

Side effects now are nil, if you don't count retrograde ejaculation. I have now gone on to six monthly PSA test. I hope my PSA stays low.

Best of luck and a low PSA to all.

Bob

UPDATED

July 2011

Well back to the old waiting game again. Another blood test and a similar result - PSA is slightly down now to 1.5. PSA seems to have evened out now . I will just have to wait for the next test in 6 months.

Side effects are pretty small , it took a long time to get rid of the pot belly but it's gone. The men boobs are still there, they just make the little lady jealous as hers point down and mine stick out.

I probably have a slightly different out look on life now, trying not to worry about things to much.

That's it for now. Low PSAs to all.

Bob

UPDATED

January 2012

Boring blood test time again, followed by a wait for the doc. PSA Test results down again to 1.03. Side effects pretty well nil, although I seem to be a bit grumpy when my 6 monthly blood test is due. [Probably a bit of PSA anxiety]

Good luck to all and a low PSa.

Bob

UPDATED

June 2012

You little beauty my PSA has finally got down to a percentage point 0.99. It has only taken 4 years from a high of 18.4. Did I make the right choice of treatment, the side effects from the hormone treatment were a pain but they passed, the radiotherapy was time comsuming, and as for side effects the only one is very little ejaculation with orgasm. So far so good.

Low PSA to all thanks Bob

UPDATED

March 2013

A bit slow with this up date PSA; is still slowly going down form 18.5 now down to 0.97. Doc thinks I need an earlier blood test to check a few other things, BP was checked and I was told it is like a teenager's, probally caused by heavy work most of the time. All for now low PSA; Bob.

UPDATED

August 2013

Another test, another results PSA seems to have bottomed out , now 0.87. a big drop from 18.5 a couple of years ago. Still no other problems, may be not so nervous about PSA; tests now. Just in the watch and wait cycle. Low PSA; good luck Bob

UPDATED

March 2014

Another six months has passed since the last test, the lastest results show a alight increase to 0.9.

Not enough to worry about, the five year time is coming up soon then I may have some thing to worry about or may be not.

Low PSA; to all thanks Bob.

UPDATED

August 2014

Latest PSA; results have dropped again. Going from 18.4 Sept. 2008 down to 0.63 now. Maybe I have chosen the right path. Side efects are not noticeable except for man boobs, and not having to worry about getting the better half in the club op's to old. I may need a few more years of testing to see if I have beaten the bug.

Good luck to all and a low PSA.

UPDATED

February 2015

Another boring PSA test result. Seems to be floating around under .9 from the last few tests, so time says I may be cancer free insted of in remission. It has taken a long time. Best of luck to all.

UPDATED

September 2015

Another PSA test and the results are good I think. 0.95 and steady, so after nearly 7 years I think I may be curred instead of in remission. It has taken a long time. After a while you get used to not ejactulating much but that is the only long term effect. Good luck to all and a low PSA;.

UPDATED

March 2016

Another boring blood test result, slightly up to 1. Seems to be alright so I think I can move into the cancer free group, but I will still have 6 monthly blood tests. Good luck to all and a low PSA.

UPDATED

September 2016

Went and had my 6 monthly blood last month and never got a chance to see the doc, instead I got note from him saying we need to talk. Panic! Regular doctor was on holidays and a new doctor saw my test results and said they are slowly climbing, we better have a free PSA and normal next month just to check. It had only gone up to 1.46. So the following month another test and a lot of thinking. Test results were ok, PSA still 1.46 and free PSA 13.7%. Not great but well within the reference range of 4.51. Maybe the new doctor was a bit over concerned. That's it for now good luck to all and a low PSA. Bob

UPDATED

April 2017

Another boring blood test for PSA, but on a better note it dropped form 1.46 to1.32. normal ups & downs? Low PSA to all Bob

UPDATED

October 2017

Another boring blood test, still have to have one every 6 months. Why?

Yes they are slowly rising, but is it old age or returning PC. Fre PSA test 6 months ago gave a 50% chance of return. After being detected in mid 08 with a PSA of 18.4, a 1.52 PSA now is nothing.

Low PSA to all Bob

Bob's e-mail address is: bob20950 AT iprimus.com.au (replace "AT" with "@")


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