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User

Posted 17 Oct 2015 at 21:00

My name is Tommy and I am 59 yrs old. Not quite sure where to start but I'll wind-back a few years.

It started just over 2 years ago, with increased visits to the toilet of a night. It steadily increase until I was being awakened between 4 and 6 times a night. I was referred to my consultant who started by carrying out a number of non evasive tests which didn't get us anywhere. I had a DRE and PSA test which appeared normal. He then decided I should have the neck of my bladder cut to help me empty my bladder. This did not work, so more tests urodynamic etc, still no improvement. I continued to express my concern that I may have cancer, but my consultant kept referring back to the PSA and DRE tests which indicated everything was normal. A friend of mine had been tested, DRE and PSA and these were normal. He paid to have a prostate biopsy done and they found cancer. He kept pressing me and eventually I asked for a biopsy. My consultant said he intended to recommend a TURP and if this showed anything he would carry out a biopsy. Unfortunately they did find cancer and 2 weeks ago I had the biopsy which again showed cancer 3+3. I'm having a MRI scan on Tuesday and I am hoping that it has been caught early and I can have surgery,

I have read many of your discussions and I find them very informative, many thanks for that. I will try my best to keep you informed of my progress

User

Posted 18 Oct 2015 at 18:39

Hi Puffingbilly. I have had the TURP and has you said it made no difference. What it did do is show I had cancer in the samples they took.

User

Posted 18 Oct 2015 at 19:22

Hi Tungi, I can appreciate your sentiments about getting it cut out as soon as possible, especially with the relatives that have had cancer in the past.

I hope the surgery will be a good outcome for you and wish you well for the future.

I think PSA levels can be read in two ways, one being the "normal/average"persons reading according to cancer research site is around 4 and the other is when after surgery and the prostate is remove there should be "in theory" a zero reading but there is always a minute one so a 0.01 upwards is used and then if this increases on a regular basis and depending on the increase, it is investigated further.

There is poss more to it than that but I am sure someone will put me right with more details or information.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 18 Oct 2015 at 23:07

Whoa! I think you might have misunderstood, Woody. The TURP removes some of the prostate tissue that is causing the problem - it is the prostate cells that are then scrutinised for signs of cancer. A positive result from a TURP does not mean it has spread to the urethra :-0

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Oct 2015 at 23:45

Hi Lynere, I must admit I have felt a little down since Puffingbilly's explanation. I am grateful that you have provided more clarification. I can sleep tonight.

Thanks anyway Puffingbilly I know you are trying to help. Good night all.

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User

Posted 17 Oct 2015 at 22:53

Hi Tommy, my starting symptom were like yours but blood test showed a PSA level of 63 and went through the DRE, MRI and bone scan which showed up my PCa and after targeted biopsies my treatment was to be hormone implants for 2 years and radio therapy(I am now at the end of my 5th week with 3 more weeks to go)

Before I started my RT I was still suffering from frequent trips to the loo at night 6/8 times each night and this has been going on for over 2 years. I had asked the urologist what could be done to help and he suggested that I have a TURP procedure. This was done back in June this year and was not painful at all and because I had a spinal anaesthetic I was able to actually watch the procedure on a TV screen as he did it. Up to now I can honestly say that it has made no difference to the number of times that I get up each night and the flow/volume has not increased either.

I hope that if you opt for a TURP that it may be helpful in your case, also if the cancer is confined to the prostate and has not broken through then you will probably be offered HT and RT although my surgeon told me that I could not have surgery because my prostate was too close to the bowel wall and he could not be sure of getting all of it out and there was a risk of breaking through the bowel wall and that would bring all sorts of problems.

My point being that it will depend on circumstances as to what can or will he offered to treat you and your circumstances may be slightly different to mine.

I hope my story helps.

Cheers Chris/Woody
Life seems different upside down, take another viewpoint

User

Posted 18 Oct 2015 at 06:52

hi tommy

you are in our world of waiting for results, always a hard time fingers crossed the results are what you hope for, good that you have got yourself plenty of info about treatment options, its like an encyclopedia of info on this site.

have a chat with the specialist nurses when you get your results, they are very helpful

have you got a local support group to have a natter with before making any decisions

nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User

Posted 18 Oct 2015 at 08:32

Hello Tommy and welcome

Sorry you have cancer. Could you tell us what your PSA is/was as the following is a bit vague
" but my consultant kept referring back to the PSA and DRE tests which indicated everything was normal."

It may help with advice given. The consultant obviously got the normal bit wrong since you do in fact have PCa.

Your Gleason score of 3+3 is low (especially compared to some on here - my own husband's was 3+4) and the MRI will show more.

You are already talking of surgery. Is that your choice or what you have been advised?

Whatever the answer to the above is, please take the time to research all your options so that, in your own mind at least, you will be happy to live with your choice.

If you have been "lurking" for a while you will know that we often refer people to the Toolkit, which is available from Publications.

The booklets there will give you the chance to form questions you may want to ask the consultant before you take the treatment leap.

Good luck with it all and please keep us posted and up to date. (Apart from the fact that we're a nosy lot - we do like to offer our support )

Edited by member 18 Oct 2015 at 08:33 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 18 Oct 2015 at 18:39

Hi Puffingbilly. I have had the TURP and has you said it made no difference. What it did do is show I had cancer in the samples they took.

User

Posted 18 Oct 2015 at 18:48

I have opted for surgery because of my family history. My mum died of breast cancer, 6 of my 7 siblings have died from cancer, as far as I am concerned I just want to get it cut out of me and I will then take it from there.

User

Posted 18 Oct 2015 at 19:22

Hi Tungi, I can appreciate your sentiments about getting it cut out as soon as possible, especially with the relatives that have had cancer in the past.

I hope the surgery will be a good outcome for you and wish you well for the future.

There is poss more to it than that but I am sure someone will put me right with more details or information.

Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 18 Oct 2015 at 20:50

Originally Posted by: Online Community Member

Hi Johsan. My PSA was 0.5 which appears low. I am struggling with this PSA as I mentioned in my post. You see some who are concerned about rises from 0.03 to 0.031 and others who say they have had PSA's in the hundreds, are we talking about the same units?

I have opted for surgery because of my family history. My mum died of breast cancer, 6 of my 7 siblings have died from cancer, as far as I am concerned I just want to get it cut out of me and I will then take it from there.

Yes we are talking about the same units.

The highest PSA we have had on here at diagnosis was around 12,000 or 13,000 for a man who turned out to have extensive spread. We have had men diagnosed with bone spread and a PSA of 4

The PSA often but not always indicates how serious the cancer is - in the hundreds or thousands it will often turn out that the cancer is extensive.

'Normal' PSA for a man without prostate cancer is considered to be around 0.5 to 3 - my husband's was 3.1 so he was very fortunate that the GP referred him to urology just in case. You are certainly very unusual to be diagnosed with such a low PSA but your cancer is the lowest grade measurable at G3+3 so perhaps that partly explains it.

Just out of interest, does the diagnosis letter say that you have adenocarcinoma? There are at least 27 different kinds of prostate cancer and some produce a lot of PSA while others produce very little.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Oct 2015 at 22:13

Hi Tungi, I had already been diagnosed with PCa before I had the TURP and as your tests were positive on the tissue samples taken during your TURP it would appear that the cancer has spread from the prostate and has been found in those samples of the urethera that was scraped. I would imagine that surgery would include the areas it is found in around the prostate and a programme of treatment discussed with you.

Sorry for saying that but it is only based on what you have described, I hope I am wrong.

There are still loads of ways forward to help you.

Cheers Chris/Woody

Life seems different upside down, take another's viewpoint

User

Posted 18 Oct 2015 at 23:07

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 Oct 2015 at 23:45

Hi Lynere, I must admit I have felt a little down since Puffingbilly's explanation. I am grateful that you have provided more clarification. I can sleep tonight.

Thanks anyway Puffingbilly I know you are trying to help. Good night all.

User

Posted 19 Oct 2015 at 09:05

Tungi and Lyn, I am sorry for causing worry I wrote a reply without thinking it through first and truly apologise.

I went to bed straight after posting that one and during the night I woke up and realised that the Urethera passes through the prostate and would have cancer cells in it as a result so please accept my apologies for my mistake. The last thing I want to do is cause concern, especially as I am not qualified, I just got it wrong.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

User

Posted 20 Oct 2015 at 17:18

Had my MRI scan this afternoon. Now waiting for the results.

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