HealthBoards (
-   Cancer: Prostate (
-   -   Confused, Anxiety, happening so fast - what next? (

edd4480 07-11-2012 11:27 AM

Confused, Anxiety, happening so fast - what next?
I work for a major US IT company and they decided to offer free prostrate screening for all UK employees over 40. My dad had pc in his 50's so I decided to take up the offer.

I am 52, had a DRE in my 40's when I last had a health check up but result was normal.

Had the PSA test in May and it came back with a Free PSA of 0.35 and a Free Total ratio of 8%, my PSA result was 4.25. The company who did the screening sent me a letter with the scores and told me to go to my general practitioner.

Gave her a copy of the letter from the screening company. She didnt understand the scores but did another DRE. She said I was ok but would send me to see a urologist.

Saw him on 13th June and he took a urine and blood test and again did dre. DRE was ok. 10 days later I got a letter from him saying I had a PSA of 5.3, still higher than normal (?) and that I was booked into my local hospital for a biopsy.

Had a 12 needle biopsy last week and am now due to go back next week for the results.

Everything is happening so fast, am reading lots of things online. There is just so much to take in but do I need the medical people to slow down? Or is it normal for things to happen this fast.

Hopefully all will be well, but I have been told that as my father had the condition when he was in his 50's I have a greater risk of also having it. I suppose a question is, what should I be asking the people at the hospital next weeK?

If I am all clear - they dont find anything, should they be doing anything to establish why my PSA levels are this high? If they have found something, whats the next thing they should be doing?

Apologies if people have heard all this before - its difficult as I dont find it easy to talk with my family and they seem to be ignoring it as if I have caught a cold and get on with it.

Tall Allen 07-11-2012 12:20 PM

Re: Confused, Anxiety, All so fast - what next?
Unless the biopsy shows a high grade of PC, you can indeed slow it down.

Yes, it's true that your PSA is a bit elevated for your age and the % free PSA is lower than it ought to be.High PSA can be due to other things aside from PC, such as prostatitis and BPH. To my mind, they should have ruled those out before poking holes in you. If it does show some PC, the first thing to do is get a second opinion on the biopsy report from a lab that specializes in PC only. Remember that most PC is never grows very much if at all, and the decision of whether to treat now or monitor now should be your first decision.

Write back when you have your lab results.

- Allen

edd4480 07-11-2012 01:29 PM

Re: Confused, Anxiety, All so fast - what next?

Many thanks, I will post next week when I know the results.


starr15 07-11-2012 06:31 PM

Re: Confused, Anxiety, All so fast - what next?
Hey Eddie,

Welcome to the world of PSA testing. You are not alone. Your situation is the same as tens of thousands of men every year in the USA that have a high PSA to test for prostate cancer. Keep us posted.

Baptista 07-12-2012 12:35 AM

Re: Confused, Anxiety, All so fast - what next?

Welcome to the board.
Nobody is happy for seeing you here but we all will try to help you in your PCa saga.
Hopefully the biopsy is negative to cancer. However just for being the son of a PCa survivor you are considered at high risk to contract the disease. It is wise therefore to get educated in all concerned matters for any future prevention.

I have experienced that “fast track” too. It all started from a high PSA at the age of 50 twelve years ago. I did not know what high or low or normal PSA meant and when the biopsy revealed cancer I entered into shock and denied the results, why should I have such a thing? I was feeling fine no pain and in good shape physically. There was an error in the tests, I thought.

Knowing what was happening to me and what could I expect gave me comfort and confidence.
Only a biopsy can provide you with a conclusion. In any case, I would suggest you to prepare a list of questions ahead of the next visit to the doctor because it may be long before you get another chance of seeing him. They tend to be “busy” and will be usually vague when answering the questions. Try to get them on a notepad or be accompany by someone so that you can read it over later.

Using a net search engine type this sentence;
“Questions+to+Ask+the+Doctor prostate cancer”

You can also get this book that will help you to understand the answers and in preparing your own lists;
“100 Questions & Answers about Prostate Cancer”, by Alan J. Wein and Pamela Ellsworth.

For deeper information I recommend you to get a copy of this book;
A “Guide to Surviving Prostate Cancer” by Dr. Patrick Walsh (second edition June 2007)

Wishing you luck.
Baptista ;)

edd4480 07-12-2012 02:38 AM

Re: Confused, Anxiety, All so fast - what next?

Many thanks for your words of support and advice. I have started to to the research online and will jot down questions for the hospital visit on tuesday.

I have been rushed through all of this because I am using the NHS. A friend of mine last night told me ( she works in a path lab ), that they have time limits \ targets set by the UK Government to diagnose and get people onto treatment regimes where cancers are concerned. I checked my medical insurance with work yesterday and I am covered for private consultancy with no financial limits\cap for treatments in the event of pc. So I have an option to switch if needed or if I think they are rushing me.

I know my dad had pc in his 50's and he survived until he was 84 and it wasnt the pc that killed him. Though I remember the trauma of the chemo he had as it had spread through his bones.

There is so much to learn, I will take up the offer and get the books you mention. I am failrly resigned to the fact that something is wrong , might be good might be bad but it needs to be found out and managed. I just need to start understanding.

Thanks for all your support - Starr15 as well and I will update the board next week.


edd4480 07-17-2012 09:44 AM

Re: Confused, Anxiety, All so fast - what next?
Results update.
Been to the hospital today and after an anxious wait I was able to see a fabulous Clinical Urologist Nurse who used to work for Prostrate Cancer UK. She really new how to break the news gently to me and keep me in one piece.

I had all my questions lined up from here and from what I had read. I had my If its positive sheet and if its negative sheet. Well, I had to use the Positive sheet.

She has told me its not that bad, and the great thing is that they have caught it early, now rather than later in life.

I have tested for 5% ademocarcenoma , tested in 1 core on the right, 0 cores on the left. My Gleeson score is 3+3= 6 . They believe it is still contained, so not doing bone scan. I am being booked in for an MRI within the next 10 days - or earlier if there is a cancellation. I then get to discuss staging and potential treatments.

Urologist is hopeful that as its caught early it can be cured rather than contained.

Tall Allen 07-17-2012 10:57 AM

Re: Confused, Anxiety, All so fast - what next?
Sorry to hear about your diagnosis, but as PC diagnoses go, that's about the best one can hope for. Now is the time to slow it down and not rush into any decisions. PC, especially Gleason 6 with low involvement, is very slow growing if at all -- you have plenty of time to make well-researched, well-considered decisions.

As I said earlier, your first step ought to be to get a specialist looking at the biopsy samples. You don't want to overreact to something that may not really be there, or underreact to something that the first pathologist missed, and reading Gleason grade is more an art than a science. In the US, Bostwick and Epstein at Johns Hopkins are well-respected for their accurate grading.

If the pathology report is confirmed, you would seem to be a perfect candidate for Active Surveillance (AS). At 52 years of age, you have too many good years ahead of you to be burdened by the urinary, rectal and sexual side-effects of unnecessary treatment. I know, especially with your father's history (and both of my parent's too, btw), that hearing the word "cancer" is disturbing. Yet PC is often an indolent disease that never progresses very much if at all. If untreated, most men would die [I]with[/I] it, rather than [I]of[/I] it.

Bone scans are completely useless in a case like yours. An MRI can show extraprostatic extension in advanced cases, but with your negative DRE and low core involvement, it is unlikely to be useful.

Here is a good overview of the subject written by Dr. Klotz, the "Father of Active Surveillance." As you can see in Section 2.5, you would seem to be a perfect candidate:

- Allen

jerseyguy 07-17-2012 12:09 PM

Re: Confused, Anxiety, All so fast - what next?
Eddie, Sorry to hear about your diagnosis but will welcome you to the club. If there is anything positive at least it is a low grade, Gleason 6. I am also 52 with the same stats and was diagnosis in March. For now I am following AS, trying to get a handle on how fast the cancer will grow. Please post your thought going forward and what form of treatment you decide on. If you have any questions please post them, the members of this forum are very knowledgeable and caring.

starr15 07-17-2012 04:07 PM

Re: Confused, Anxiety, All so fast - what next?
Eddie, is it common in the UK to get an MRI in your situation?

Baptista 07-18-2012 01:20 PM

Re: Confused, Anxiety, All so fast - what next?

I am sorry for the news on cancer. Being positive changes the way we appreciate life and see things.
In any case, your stats couldn’t be better for a PCa patient. Low grade aggressiveness and low Gleason score. The volume is also very small (1 out of 12) and probably is a contained (within the prostate capsule) case.
MRI may be negative but the results will serve you for future reference/comparison when taking another image study.

You should now getting copies of all reports (biopsy) and tests to prepare your own case file. You will need it when going around for consultations with other specialists.
Obtaining second opinions about anything in prostate cancer is a must do thing. Each doctor sees it differently and there are lots of biased opinions when suggesting a treatment. It is typical to read about urologist recommending surgery and radiologists recommending radiotherapy but the one to decide will be we. It is imperative therefore to educate as much as possible on what is available.

Young guys got a lot to lose from radical treatments. Surely we want to get rid of the bandit and the first thing that comes to our mind is to treat it severely but the risks and side effects of treatments can be very nasty. Quality of life should weigh in the decision.
Be active but do things timely and coordinately. Do not rush. PCa do not spread overnight.

Having prostate cancer is not a dead sentence. This is a cancer that allows time for us to consider what is best to us. You need to get several opinions from different specialists, and you are fortunate because you can have consultations from several sources. (NHS and private clinics) Maybe the insurance will cover consultations to specialists in other countries too (EU or USA).
You could contact them and inquire about what is covered.

Nevertheless, you need to start researching. In this forum many guys will help you to understand thinks along your journey.
You can read the story of guys with similar cases (diagnosis) as yours. Type this in a net search engine; “You are not alone now”

Wishing you luck.
Baptista ;)

edd4480 07-18-2012 01:21 PM

Re: Confused, Anxiety, All so fast - what next?

Thanks for your thoughts on this. I was thinking the same about AS but am going to wait until after the MRI and see what is said by the team there. My nephew ( a doctor ) and a friend who works for the health service have also given me names of people in specialist centres but I want to see what the NHS say. I have also my private insurance if needed , but everything I am reading at the moment seems to say stick with the UK NHS as it has everything available. My MRI should be through next week and will get results\consultation with another 14 days so not long to wait. And as everyone says and everything I have read ... no rush. The book Invasion of the Prostrate Snatchers has just arrived. I am camping with scouts next week ( between hospital visit ) so plenty of time to read it.

Many thanks for your note.


edd4480 07-18-2012 01:30 PM

Re: Confused, Anxiety, All so fast - what next?

.................Nevertheless, you need to start researching. In this forum many guys will help you to understand thinks along your journey.
You can read the story of guys with similar cases (diagnosis) as yours. Type this in a net search engine; “You are not alone now”

Wishing you luck.
Baptista ;)[/QUOTE]


It has been so good the advice from all of you so far. I would never have dreampt of going into the hospital this week my own list of written questions if i hadnt had the advice on here from all of you. Also the books people have been advised to read, I have read one, another starting today and another on order. Am reading lots of case studies so am compiling my case file and options report. Its weird, I work in IT and am always doing options papers and risk assessments for clients . Feels like I am doing the same, but now for myself for my own healths sake. But as you all say, its our lifes journey and we need to be in control.

Thanks for yours and everyones support. Will keep the forum updated and I progress.

best regards


edd4480 07-18-2012 01:42 PM

Re: Confused, Anxiety, All so fast - what next?
[QUOTE=starr15;5021611]Eddie, is it common in the UK to get an MRI in your situation?[/QUOTE]


I dont know. I the clinical nurse basically said this would be done straight away and it was being marked as urgent so I get it within 10 days and also if a cancellation becomes available they will phone me on my mobile rather than write to me so i can go in quicker. Maybe its the particular hospital or maybe its down to government targets. My friend mentioned that there are UK targets

From this it can be seen that they have a 62 day government target to get me on my first treatment from when the GP referred me. I assume if I elect for AS then that would be considered the first treatment. The MRI I assume has to be done before I choose my journey. They were unable to give me my staging and said that would be post the MRI.

best regards


starr15 07-22-2012 04:04 PM

Re: Confused, Anxiety, All so fast - what next?
Interesting Eddie. MR imaging after the diagnosis of low grade low volume prostate cancer is not done commonly in the USA. I think the UK and some other parts of Europe are on the leading edge in the use of MRI in prostate cancer. Prostate MRI in the US is steadily increasing but still not widely available.
I was just wondering if an MRI for low grade low volume cancer found on biopsy was standard practice in the UK.

All times are GMT -7. The time now is 04:26 AM.