New to all this PC Milarkey

SWEEP

A Glint of hope 

Political Correctness..... it's a Pain.

Prostate Cancer  is easier to negotiate, just keep that head up.

I'm now into my seventh year.

I found myself in a similar position to you, slightly younger and my gleeson was an 8.  

Similar story to yourself, except i produced a few large blood clots on those trips.  it was off partying  elsewhere, its not in my bones either. My initial prognosis was a lot less than i have had this.

 Please read my bio/posts  To save repeating myself( boring others)

We are all different, react differently to the  treatments, which there are  many options , so if one ain't working for you. they will try another.

There is a world wide programme making massive in-roads to our type of cancer, I have benefited massively from it. there are a lot of people working for you and people like us.

Stay positive, it will be hard at times and keep climbing the hill that's in front of you.

Chemo- repeats itself the side affects are the same with each dose, think of it as hurdles to get to the finish line.

the track will be steeper  each cycle, there is a finish line. I had no sickness

Radiotherapy does not hurt, there maybe minor side affects.  

Best of luck.

Tillysghost

Hello Sweep 

A warm welcome to the group (and the Gleason 9 club!) although I am sorry to find you joining us.  As the cracking post above from tillysghost says:

tillysghost said:

We are all different, react differently to the  treatments, which there are  many options , so if one ain't working for you. they will try another.

Once you get your final results from your PET Scan your MDT team will come up with a treatment plan. At the moment you are at the hardest part of your journey - the diagnosis and treatment planning stage. trust me - it get's better.

If you can add your full biopsy results we will have a better idea where you are with this -  Gleason 9 (? + ?) and TNM staging.

Stay away from Dr google and feel free to ask any questions - you will get honest answers from people who have "been there - done that". Nothing is stupid or too trivial - it's a learning curve.

Best wishes - Brian.

Dr Google will frighten you unnecessarily, believe me I read masses which I have mostly forgotten.

I decided to leave to those who know.

Thank you for the reply  
I have just found out after waiting a week that my referral for the PET Scan was only received today and the wait time is around 3 weeks. Is this normal waiting time for this type of scan. I am concerned that as time goes by the spread could be worse !! 

Thank you for the reply, I think mostly we are staying positive but today has just given us a knock back when I found out about the waiting time of the PET scan 

Hello Sweep 

Waiting times vary at different Hospital Trusts. I am under The Christie in Manchester, they ordered a scan last Wednesday and I had it on Monday. Sadly 3 weeks is pretty average.

The thing to remember is Prostate Cancer is slow growing, I know like me you are a Gleason 9 so it's aggressive but 3 weeks should be fine.

As with everything on this journey you learn to advocate for yourself and be polite but persuasive with your NHS Trust. Keep a note of every contact you have - their e-mail, name and contact number. If you are available - contact them and say you can take any short notice cancellation and are willing to come in at the drop of a hat.

Best wishes - Brian.

Sweep,  it is a pain, all the waiting for results.  Like you, I tried to keep working as much as possible, it stopped my mind from wandering.  It was the 'fear of the unknown' that got to me all the time.

You are doing your best to keep positive, which is great.

The best piece of advice I had when I was first diagnosed was "Concentrate on today, try not to think further than your next appointment!"

It didn't help getting all of the pamphlets from the hospital full of possible 'side effects'.

This forum is very good, even if you just want to vent...

Hi Brian

i had a letter from my practitioner and the results of the biopsy are as below:

Gleason 4+5 =9 adenocarcinoma or the prostate. Found 4/6 cores (All left sided and posterior). Peri-neural invasion seen, but no evidence of extra prostatic extension. 

I am not sure what much of this means but know that Gleason 9 is not great. I have only spoken to my practitioner over the phone about these results which is when he advised I need a PASMA PET scan (checking for suspicious lymph nodes). I have been told that I will probably have the scan next Thursday but not confirmed yet. 

Any thoughts would be appreciated 

Thanks 

Hi Sweep , just seen your post to Millibob and noticed you haven’t had a reply (I suspect Brian is travelling or having internet problems), so I will do my best.

Sweep said:

Gleason 4+5 =9 adenocarcinoma or the prostate. Found 4/6 cores (All left sided and posterior). Peri-neural invasion seen, but no evidence of extra prostatic extension. 

The Gleason 9 isn’t good but just means it needs treating soon rather than leaving it.  I am Gleason 9.  Ardenocarinoma seems fairly normal.  6 cores were taken in the biopsy and 4 (left and rear) were found to be PCa.   Peri-neural invasion isn’t great but no evidence of spread is very good.  I am not medically trained but with a PSA at 40 none of this is a surprise.  With a reasonable MRI, your team are just making sure that there are no micro metastasis found elsewhere.  If I have got this wrong, I am sure one of the other contributors will be along soon.

Good luck with your scan. David

Hello Sweep . The Gleason 9 is classified as indicating a more aggressive cancer which should be treated more aggressively but there are many men with this who are still treated with curative intent. The perineural invasion bit means that the cancer is seen around or within the nerve bundles and this can allow easier spread but it doesn't mean that it has spread. Being offered a PSMA PET scan at this stage is the best type of scan you can have to determine if anything has gone walkabout. This will allow the experts to tailor a plan for you. My husband has had 2 so far and had no side effects - he was told to drink more to flush it out of the system and to avoid children and pregnant women for a few hours. It sounds as if you have a good team looking after you as not many are offered the PSMA PET scan early on in the UK - take it as a positive that it will help inform to give you the best treatment.