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something for the discomfort

User
Posted 05 Sep 2015 at 21:35
Hi ,just been diagnosed after a five week wait after biopsy and now have been given options .With a gleason score of 6 and psa around 9 ,the monitoring option is probably the one I will follow although have a meeting with surgeon on Tuesday.He has already indicated this is the way forward subject to an MRI scan which I'm told has been ok.I am finding it dificult to put it to the back of my mind particularly whenI wake up at night .Maybe some relaxation techniques may help but I am still getting a fair bit of discomfort which was my initial reason for going to my gp.I actually measure PSA amongst other things as part of my job but when I got my first results I almost felt that it was some other patient ,not me.It was only when I went to get ready for the biopsy that it hit home what was actually going on.Sorry if this seems a bit of a ramble but I'm just trying to get this sored out in my head and I am grateful that there is this forum for guys to contribute,cheets.
User
Posted 06 Sep 2015 at 02:35

If with results of biopsy and MRI the surgeon (leading MDT?) considers your cancer is well contained and advocates AS, this would delay potential side effects of treatment. It would then be advisable to be monitored regularly so if the cancer did progress you could have treatment while you still had best chance of cure.

Some men feel they can't play the waiting game as it is too stressful - maybe a professional can help a number of such men to accept the wait and reduce anxiety, possibly someone from Macmillan or a nurse from this Charity.

Edited by member 06 Sep 2015 at 02:43  | Reason: Not specified

Barry
User
Posted 06 Sep 2015 at 08:34

Hello Daz and welcome to the site.

You are referring to Active surveillance (monitoring) and as Paul says, if your head can cope with the knowledge that you have PC inside you, then it gives you time to seek out all your future options.

If you go to Publications on this site then you can download, or obtain a set of booklets/leaflets called The Toolkit.
They are very helpful in term of descriptions re: symptoms,treatments, emotions etc.

They can help you formulate a list of questions for when you see the consultant.

We usually advise people to take somebody with them to that meeting, as well as have a pen and paper for writing brief answers. There is often so much to take in that a second pair of ears is useful.

Of course you are finding it difficult to put this to the back of your mind, it's suddenly stark reality that you have this thing inside you.
You are,in fact, one of the lucky ones, just like my other half who was also able to go on Active Surveillance.

There are men on here with much much higher PSA and Gleasons scores than you, there are men who know there is no cure, but they ll get on with their lives and live with what fate has given them.

Try not to obsess too much (easier said than done - especially in the early stages) and try and avoid googling unless it's to research using "proper" sites like this or cancer research.

Do you have a partner at home to support you?

You've found your way here now so are part of our family.

Ask any questions you like, somebody is likely to know the answer.

Be assured that what you are feeling now is exactly what all of us have felt at some stage. You are not alone in this, we're here.

All the best
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 06 Sep 2015 at 09:32

Daz some good advice given already. I think one of the main things is whether you could mentally handle active surveillance.

I would want to know exactly where the tumour is in the prostate. If it's near the side you need to discuss the liklihood of it breaking out etc.

Sorry but on a separate matter I note your profession. We have often had debates on here about small fluctuations in PSA following a sensitive test. We have been told PSA can vary due to 'machine noise' and various other reasons. I am talking about levels below 0.1. Do you have a view?

Cheers
Bri

User
Posted 06 Sep 2015 at 09:45
Hi ,thanks to the replies from you all.Its dificult to put it to the back of my mind when I have been getting some discomfort in the area due to inflamation which will come and go and hopefully my gp will prescribe something for.I am as Sandra said one of the lucky ones at this point indeed I know of two friends of friends who have undergone surgey and are on hormone therapy.I will try to seek advice from counsellors locally and after speaking to the urology surgeon this week I have to contact a specialist nurse to tell her of my choice for the way forward.I have a fantastic wife for support here so every desicion too has to be made with her and my family in mind .Recently been trying to sort out a long running life insurance policy to reduce it as its gotten too expensive then take out a new one ,my diagnosis has thrown a spanner in the works .I believe companies require gleason score definitions amongst other information .
User
Posted 06 Sep 2015 at 09:58
Hiya Bri ,thanks for your reply .Certainly I think PSA measurement ,like any ananalytical test ,can be subject to fluctuation but the analysers are strictly quality controlled twice a day in a twelve hour period .If for instance my PSA went up to 9.6 from 9.0 there wouldnt be any action from medical staff I would have thought .They are really looking for a spike in the level ,say up to 15 or sixteen ,which they would probably follow up with a biopsy and or MRI.The urology surgeon did not concur with my gp that the level would be affected by the DRE so cannot give you a definitive answer on that.All the best and thanks for getting in touch.

Daz

User
Posted 06 Sep 2015 at 13:23

Thanks Daz...my point was that we sometimes become anxious if the PSA increases say from 0.03 to.0.06. But some consultants say it's insignificant as a rise that small could be due to external factors eg, calibration of testing equipment or the position of the sample on the slide or even time of day blood taken etc

Bri

 
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