Just diagnosed & so worried

Hi VWW , I completely understand where you are at present and it is horrible.  We have all been there and it does get better.

My take on this is PSA is fairly low but all credit to the GP for getting an MRI organised.  The scan doesn’t confirm if he has cancer but gives a very good idea if something looks odd.  I think the MRI probably says PIRADS 5 which really means the picture was good and is highly likely to mean cancer.  The good news is if they said no sign of spread.  This would put your husband on a curative path, so either an operation or Radio Therapy.  Simple.

None of this will stop you worrying but if I tell you I was PSA 74, spread to lymph nodes and bones 9 years ago, hopefully you can relax a little.  Please come back once you get the results (Gleason and TNM) and we can talk you through everything.

Hello VWW 

A warm welcome to the online Community, although I am so sorry to find you joining us - I assume VWW is vey worried wife so let's try and help:

* An MRI level 5 probably means PI-RADS 5 - This means that on the MRI scan they have had a clear view of the prostate, and they have detected what looks to be cancer - with a 95% chance he will end up with a cancer diagnosis.

* Regardless of the cancer diagnosis - something can be done - someone needs a word with that consultant about his "bedside manner!! .

* You can have a very enlarged Prostate without having Prostate Cancer!!

* A PSA reading for a 62 year old should be between 4 and 4.5 - 5.9 in the scheme of things is a very small rise (at 66 on diagnosis my PSA was 182 - I am 70 now and living a great life - click on my name or avatar for my journey details).

At the meeting later this week IF you are given the biopsy results (and for the NHS that's a quick turnaround) here's a link to how to understand them:

The Staging and grading of prostate cancer.

The normal course of events will be his MRI and biopsy results will be discussed at an MDT meeting and a treatment plan will be offered.

I hope the above helps - please feel free to ask any questions, nothing is too trivial.

Time to relax and put your feet up - 98% of men with a Prostate Cancer diagnosis die WITH it not OF it.

Best wishes - Brian.

Do not panic Mrs VWW it’s not yet proven and until you get a verified biopsy result and a diagnosis of what’s going on inside your man.

Firstly the cancer is slow growing so what ever you do don’t panic for answers before they’re given to you in a face to face meeting at a later stage. It’s only then you will learn what is what.

I know it seems like I’m talking nonsense but your picture of the cancer and treatments are only sketches and bad ones at that.

We are here to catch you when you stumble and I wish you luck until we all hear more about the profile of your hubby.

Really take care and good luck

Hi VWW

Yes PSA  of 5.9 not high but mine was about 4 and still turned out to be PC.

So wait for biopsy results but as long as confined to the gland then potentially easy to treat.

It's good that the GP sent him for MRI otherwise it could have carried on growing .

Looks like caught in time that's the good news

Best wishes 

Steve 

Hi VWW,

So there are times when I want to take consultants down a dark alley and administer a thumping.

In this case case, without the biopsy, the consultant cannot have evidence to state what he does. To give you an example: 

• My PSA was 7.39 at diagnosis.
• The MRI gave a PIRADS 5 results.
• Post Biopsy my cancer was categorised as Gleason 9 (4+5).
• There had been localised spread to one lymph node.

Where my treatment differed from yours was that the specialist nurse told me to take my time with picking treatments because PC is slow spreading, even the aggressive ones, as I had.

When I saw the oncologist, where I was referred by the Urology Department, the sun came out. She stated that my cancer was certainly treatable and possibly curable. Since then I am 2 years along a 3 year “curative” pathway. The results have been encouraging.

You look like you are in a better position than I was, in that the early indications are that the cancer has not left the Gland.

Take the time to think.

When you have the Gleason Score let us know.

Assuming that the cancer is localised within the gland you there is a really good chance of cure.

Hello David, Im in a similar situation to you with a small amount in bones and just started treatment. Could you tell me about your treatment please

Hi Ned , my history is in my profile, just click on my name or avatar.  Please come back if you need any further help.

Hello VWW

im sorry to ‘meet you’ under such troubled and frightening circumstances! I fell apart totally once my husband’s MrI showed as pirads 5 . I found the time between getting the raised PSA result and having all the diagnostic tests the hardest part of this journey. Once we had all the results and a treatment plan we felt more in control. Also, from this forum I gained much needed support, information and reassurance. I hope you will do the same!

I would recommend getting as much reliable information as you can and accompany your husband to the appointments to give him moral support, ask your own questions and note down the answers.

i would also suggest being politely assertive with the hospital if you get appointment delays and: poor communications and to say that you are willing to take last minute cancelled appointments ( if you can!).

Www.prostatecanceruk.com produce some very reliable and understandable leaflets.

My husband watched his mother , her mother and his cousin all die of breast cancer before the age of 50. He also watched his father and his father’s father die of prostate cancer. We were both sent for genetic counselling and screening. He had been having regular PSA tests for years and , now, our daughters have annual mammograms and our sons have annual PSA tests- even though he does not have the BRCA gene ! Their concern is that there may be cancer causing genes they are yet to discover.

So what sort of place are we in now? He was treated with radiotherapy and hormone therapy . The HT finished in August 2924. He has 6 monthly PSA monitoring. He is fit and active and we enjoy life - and value it a lot more after the brush with cancer. I fear recurrence but, whatever, I know the treatment bought us extra time. 

there is life either cancer, through prostate cancer treatment and beyond!

oh, and 1 very special thing - fighting the fears etc together brought us much more closer - even though we have been married a long, long while (52 years now and counting!)

I hope you are feeling reassured by all the replies and I wish you the very best of luck xxx.

Thanks David have just had a look. It looks like you did not it in your bones after all. 

Thank you everyone for you helpful and supportive replies. it is much appreciated. I will be back in touch after we hear on Friday,