Under 50s

If you look on the Prostate Cancer UK website you will find pamphlets in a folder called the Toolkit these are specifically gathered together for those just diagnosed.  This will give you an insight in what is taken into consideration when choosing a way forward.  You can either read the pamphlets online, down load them or get them posted to you but I am thinking you would rather read them straight away.  No one will tell you which way to go unless there is definitely a treatment option you cannot have.  At the moment with you being young and with very low grade cancer all options would be available.  You would probably have the option of waiting for early treatment but this is not watching and waiting this is "Active Surveillance"  That is, you look out for any symptoms, pain including back pain, urinary frequency, urinary urgency, change in flow etc. and the medics keep a close eye with more frequent PSA tests, and MRI scans and once PSA goes up and/or MRI shows growth of the tumour then you either get more frequent tests or go for treatment depending on the speed of growth if there is any.  Your numbers are low at the moment do you know your actual gleeson score?  Mine was 7 (3+4).  This is how you want to see your gleeson score written as 7(4+3) is slightly higher.  You can wait a month or so to gather all the test results in before deciding on a way forward.

Take care and let us know how you get on.

Hi Edanlad

Im a little bit older than you at 53 and was diagnosed 3 days ago with a Gleason of 6 and a PSA 5.8 and 9 out of 20 biopsies cancerous. I saw the clinical nurse sepcialist and was told that all options are open to me from active surveillance to surgery. My initial response is AS with the option to request radiotherapy or surgery as I feel appropriate once the diagnosis has sunk in and I have done some reading. Within the period since diagnosis I have already ruled out AS (in my head anyway) as I feel that I need to actively do something. I completely understand where you are coming from as if I were older I may want to follow a more conservative route but I am now thinking that Ive got (hopefully) 30 years left in me and I want to get rid of this horrible disease although I am also nervous of jumping into surgery. It sounds that you are in a similar situation. Good luck with your decisions as my thoughts seem to change on an hourly basis.

Darren

Hi Darren, thanks for your reply.

I spoke to the surgeon who told me about my cancer :12 out of 24 biopsies contained cancer, 5 out of 6 sectors of the prostrate are affected and its stage 2 intermediate with gleeson score 7. He said it needs to be addressed soon, AS is not an option. He still wants me to see the oncologist which I will, but he said that they will steer me towards surgery as he has. If I have radiotherapy it will cause a secondary cancer in 20/25 years so in my late 60s/early 70s.

Regards Dan

Hi Dan

That is one of my biggest fears, i.e. that if I dont get rid of it now when it is contained in the Prostate and I have radiotherapy then I could have a secondary cancer in my 60 / 70s. I think surgery is the way forward for me (or that is how I feel at his moment in time) and the risks or ED and urinary incontinence are there with radiotherapy and surgery.

I hope you come to a decision you are comfortable with. The more that I discuss this with my wife and consider my position the more settled I am becoming with my projected path.

Keep well

Darren

Hi Darren,

Like you I see there is potential for ED and urinary incontinence from either surgery or radiotherapy. Surgery doesn't guarantee you'll not have a 2nd cancer but radiotherapy probably does? The surgeon said of ED, given my age he'd hope that I should have between 50 and 66% chance of not needing medication or other remedies? He was honest and straightforward. I wanted to know stats etc but he said they could be a little misleading because all the stats have all men lumped in together so nothing age specific ie 40-50, 51-60 etc

Best regards Dan

I was diagnosed with stage 4 metastatic prostate cancer Gleason 9 with spread in spine and pelvis in March 21 at 38 years of age, my treatments so far are on my profile if you would like to read it. 

Hi Paul, thanks for your input. I have read your profile and it has been extremely helpful to me, it has certainly given me perspective. I wish you well with your ongoing treatments.

Best  wishes

Darren

Sorry Pauli didn't read your profile first, thought it was your first RT.

Don't forget there r always new treatments and trials on offer as well, u can try cancerresearchuk looking for trials.

Best wishes

Steve

It's ok, I was just anxious as it's my first RT since being on hormone and Enzulatimide so worried about the added side effects. thank you again Steve, that's all we can hope for isn't it. Just got to live each day as it comes no matter how hard it is. Take care

No problem Darren, we have to try and help each other to get through this nightmare. Always here if you need a chat. Take care and good luck.