Advanced Diagnosis

Hi Chrispea OK - we’re here for you.  Hang on in there buddy - I’m just going for a shower but I’ll be back. My gut feeling is that you are curable so please crank down the worry.  I’ll be back shortly (I’m sure someone else will have visited you by then anyway).   AW

Hi Chrispea

Sorry you’re in a waiting stage for more info. Not an easy time. It’s good you’ve decided to share as there are lots of very supportive people on the forum. Big hugs from Spain x

Hi Chrispea , very sorry to hear you have joined our Club, but welcome.  Your diagnosis is similar to my own and I recall PCa dominated my thoughts for months but it does get better. 
The journey is a rollercoaster and there were serious lows, but now 7 years later, I can look back on more highs than lows!  Life is changed with a PCa diagnosis but not always in a bad way. This is an amazing forum so please let us know if you have any unanswered questions. Best wishes, David

Hi Chrispea and welcome. We will help if we can but can give better advice once you have had the PSMA PET CT scan which is very accurate at showing up where the cancer cells are. Hubby has had 2 so far - you are injected with a tracer, wait for a while and then onto the machine for the scan. Preparing the tracer is the tricky bit as it has a very short half life so don't be surprised if the scan is postponed at the last minute. No prescan preparation was needed by hubby but he was warned to stay away from pregnant women and children for a few hours. Only after effects was a headache which soon went.

Please ask as many questions as you like and glad you have moved from being a lurker and introduced yourself.

Hi,

Thank you all for your prompt and supportive responses.

I’m not usually good at responding to social media posts, according to my family and friends anyway, so for me, this is another new experience.

I’m afraid that I can’t offer anything in return, but hopefully as this story pans out, it will provide something positive for others who face similar challenges.

Chris

OK, I’m back.  
so, dealing with what we know so far, these are my opinions (I’m not a consultant but I did a lot of research on my own case).  Anything I say is food for thought and may help you with questions for your own consultations:

The fact that you have no symptoms and the PCa was found by chance during a GP visit means that luck is with you.  Your PSA of 10.1 is not particularly high - some men are on active surveillance until a figure like that.

Your MRI at PIRADs 3 means that the lesion is really small, or difficult to see on the MRI. This pointed you down to the biopsy requirement. 

Histology is king.   Your Gleason 4+5 is high, but these core samples are tiny, so these figures are at cellular level. Therefore, I suspect you have a small lesion that has shown to be aggressive and needs treatment. 

You are graded T3a N1 Mx : This means that nearby nodes may be involved (probably suspected on the MRI, as I don’t believe that biopsies take from the nodes). The Mx for metastasis means that they haven’t got the external scan results yet. You will probably have a bone scan and you say you have a PSMA (CT) scan for soft tissues in 14 days.  You are lucky to have access to PSMA scan, as it’s specifically for PCa, and is the most accurate.  

This is a typical wait time (would be the same privately).  Neither scan is painful or traumatic, and they are quite routine in a PCa diagnostic pathway. I don’t think the bone scan will show any mets (given no symptoms, early finding by chance, low PSA, etc), and hopefully the only spread on the PSMA scan will be local nodal involvement. 

I have a feeling that if this is the case, they will offer both surgery or radiotherapy on a curative pathway. Beware that if surgery is offered they would be taking lymph nodes out too, which can cause a lymphatic system problem with fluid build up in the legs. Also, as you are Gleason 9, there may be microscopic metastatic spread in the pelvic area, requiring salvage radiotherapy afterwards (meaning two sets of side effects). Removal of the prostate gland also takes the upper sphincter valve, meaning that you are reliant on the pelvic floor for urine control. Men don’t usually need to use their pelvic floor muscles, so it takes some effort to get them to work! 

I am NOT a consultant. However, I would seriously consider the radiotherapy route. As you are Gleason 9 with nodal involvement, this is likely to be whole pelvic area radiotherapy (74 Gy over 7 weeks Monday to Friday).  Or, if you have a hospital that does brachytherapy (or one that you can be referred to), then Brachytherapy Boost (operation, then 46 Gy to whole pelvic area over 4 and a half weeks). I had the latter - click on my avatar snowy mountain to see what happens. Make sure you view the whole presentation in the videos, the statistics are compelling: but only if you are a suitable candidate for this pathway.

phew!  That’s enough for now. Remember, this information is merely to trigger questions for your OWN case - no two patients are the same.  I think that you will be fine.  Now they’ve found it, you are safer than the untested man in the street.       AW

In fact, thinking about it, you may not need a separate bone scan, as the PSMA PET scan would find PCa wherever it may be.  Note, however, the PCa has to be a certain size to show up, so it won’t find microscopic amounts.  AW

Hi Chris.

Can I suggest you start to update your profile by clicking on the chair by the side of your avatar and editing it -don't forget to save. This will help us in the future to give more specific information and save us asking you to repeat yourself.

Many people have logged their journeys under their own profile so clicking on their name would bring this up and give you an idea of what to expect.

No two people react in the same way to the diagnosis and treatment and emotionally it can be difficult for the whole family so if any of you find that you are struggling at any point then there is help available - just ask as there is a lot out there and we can help you find it.

I have attached a helpful link for locally advanced prostate cancer which is a good starting point for information.

https://prostatecanceruk.org/prostate-information-and-support/just-diagnosed/locally-advanced-prostate-cancer

Hi again Chrispea , think AW makes a very valid case for optimism, with which I totally agree, but personally I wouldn’t start to think about treatments just yet until you know what is what.  As long as you are on HT already, just take time to get your head round the diagnosis. There isn’t any rush for a few months, in fact any treatment won’t start until the HT has had a several months to work.  Just do normal things and take holidays as before. Plenty of time to think about treatment options once you have the results of the scan. 
Like you, I don’t do any social media stuff, but this site is very good at sharing experiences from guys and partners who have been through (and are still going through) this journey.  You are at the hardest stage at present.  Best wishes, David

Wow..that’s soo helpful thank you AW.

Apparently they aren’t doing a bone scan just the PSMA one, I’m assuming the PSMA is a catch all scan?

They said the MRI shows one Lymph node may be affected.

when you’re sitting in the consulting room trying to process what you’re being told, all the stuff in your head just evaporates. I think he realised I was elsewhere and was directing his comments towards my wife, so I didn’t get to ask him all the obvious things.

Thank you so very much, will keep everyone posted on how things go.

Chris