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How to cope with treatment

User
Posted 16 Jun 2016 at 13:37
Hello,

I have recently been diagnosed with prostate cancer. I had a biopsy back on May 26th and was given the results on June 9th by telephone.

Did not get my Gleason score in that telephone call, and spent the rest of the following days chasing MRI Scan. I then found out I needed to know these things but was away for a long weekend and anyway hospitals don't work over the weekend. Got back Tuesday and found I have my MRI Scan on Friday (tomorrow) but will have to wait for the results of that.

My Gleason Score is 7 - 3+4 and of 10 samples taken 4 out of 5 were positive in the right lobe and the left lobe was clear. I had a TURP operation 12 years ago and have bladder problems anyway. Over the last year I had problems getting my GP to carry out a PSA test culminating in my urologist urging him to do one and me quoting NICE guidelines to the GP and him telling me if he had to test every man over 70 so frequently the NHS would be bankrupt! A re-test showed 9 and he argued

that this was normal? The next test was 12.4 which was when the urologist said I should have a biopsy.

My main worry is the side effects of any treatments as my bladder is "iffy" anyway so incontinence is my main worry.

I wonder what some of your experiences are and how you coped.

Des

User
Posted 16 Jun 2016 at 15:23

Hi Des,

Welcome to the forum, though sorry it is because you have PCa. This is a very complex disease with at least 27 types and men are affected in different ways, further varied by other conditions that can make a difference, (Your bladder problem for instance).

I would suggest that when your MRI and any further test(s) are done and evaluated, you have a meeting with a urologist and an oncologist to discuss what might be suitable specifically for you. Some men, particularly those where the cancer is confined to one side of the Prostate may be suitable for HIFU, which I would also enquire about, though it will most probably mean seeing another consultant with treatment in another hospital if you choose this route. All treatments carry some risk and strong probability of varying degrees of side effects. As regards surgery for example, much depends on the experience and skill of the surgeon, whether he has to remove nerve bundles, which plays a big part in how you are affected by ED, and how close the cancer is to other organs. Some men are quickly dry after the op whereas sadly at the other end of the spectrum a few men are permanently incontinent.

Meanwhile, I recommend you obtain the 'Toolkit' from the publications part of this site which explains things well and ask any further questions that occur. What one patient may consider best for him will not necessarily be considered best by another, even if their situation is similar and options offered are open to the same men. Only you can choose the option for yourself from those open to you.

Barry
User
Posted 17 Jun 2016 at 09:01

Welcome to the site Des.

The toolkit would help you when it comes to asking questions of your urologist about your next step but as Barry said each man on here is an individual and may well react differently to another man with PC who has had the same treatment, and you already have problems

We can't control the winds - but we can adjust our sails
User
Posted 19 Jun 2016 at 12:37

Thank you both. I have got the toolkit and feel I am drowning in information now. Had my MRI on Friday and it will be with my urologist on Monday morning but don't know if he will be able to do anything for a few days as I am not his only patient. I have booked a privat consultation with him for a week Thursday and am hoping that he will have all he needs by then and can give me something to think about treatment wise for the next few days as we will be off on a long weekend - with my eldest son and his partner in Crete.

Hope everyone is having a great Father's Day.

Des

User
Posted 19 Jun 2016 at 20:24

You've got the toolkit and yes there is a lot in there. The time to use it really is when you have been given options as otherwise you'll be baffling yourself with treatments that may not be relevant to you.

Keep us posted on what the urologist says. I hope you have been able to enjoy the weekend with your son.

Speaking of sons, I don't know how old yours is, but he should be made aware that PC is familial and at some stage it may be advisable to explain to his GP about you and ask for his own PSA test (and not take no for an answer !!)

We can't control the winds - but we can adjust our sails
User
Posted 20 Jun 2016 at 08:39

Hello,

I have had urinary problems (overactive bladder) for years had an enlarged prostate operated on by TURP 14 years ago, and have always told my two sons - one is 53 and one is 47 to keep up with PSA tests, and also eye exams as my Mother had glaucoma, I have glaucoma and my brother has glaucoma. It was thanks to my brother who lives in South Africa that I got onto the PSA test as he had one and a prostate exam every year from age 40 onwards for his works health insurance - he is 5 years younger than me. One of the times I went to the hospital for a bladder check - I have always had an overactive bladder, there was a programme on morning tv about PSA urging men to get this test. So, decided to ask for this and was then asked why did I want one! Though they knew I had urinary problems they were loathe to give the test. At the time I would have been about 53 or 54 so about 20'years ago. Don't know why they are so loathe to test at times. It is because of this that I tried to get tests as often as possible and my urologist tried to get my GP to do the test prior to my annual appointment with him. It was only recently when I noticed changes in urinary flow that I asked for a test outside that time that I was refused by my GP and I looked up the NICE Guidelines and I quoted these to my GP who then told me if they did that they would bankrupt the NHS. I, after all, was not asking him to test everyone just me. I had to wait to make an appointment with another named GP at ththe surgery - so waited a few more weeks to get him to authorise the test - in the meantime also getting my urologist to write to the surgery! So, for someone who was urging all men to get tested and go to their GP if they noticed any changes I am the one who gets cancer. Ironic? Still onwards and upwards as they say.

Des

 
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