Finally got a diagosis

Hi,

I am so relieved for you that your PC is contained. This is good news and I would encourage you to find out from your urology nurse specialist/Macmillan/oncologist as much information as you possibly can about the various types of radiotherapy, side effects etc. The men here are great and will help you. 
Active surveillance is something that should be just as it says .. ACTIVE! As your biopsy results have been a little slow coming through my advice would be to Keep on top of all of your appointments and encourage your team to do the same. Don’t let Covid rules deter you from asking for face to face consultations. You are entitled to it. Well, I think so anyway. 
all the very best,

Louli

Hi Louli,

Thanks for getting back.

I am disappointed that I was told this life-changing news over the telephone. It all seemed a bit rushed. The urologist told me, if I could, to go immediately to the hospital pharmacy and get the Bicolutimide and start taking it without any real advice on the implications of taking the drug - which are quite profound. I don't think waiting a few days while I research and find out what's going on will make any difference. I appreciate that the surgery option is gone because of the aneurysm, but I don't know why active surveillance is not on the table - I do not want to be over-treated

I have not been assigned a urology nurse specialist, so it's impossible to contact anyone easily at my local hospital (Kings College Hospital). I will get in contact with the MacMillan, Prostate Cancer UK nurse specialists and anyone else I can think of. I will also try to get copies of all of the reports

Thanks again

NPJ

I know Gleason Score of 6 is OK for active surveillance but not 7 (3+4)  but you may well be right though I would imagine it would depend on  more than just the gleason score, and would take into account position of tumour, age and co-morbidities not just on gleason score alone.  The Prostate cancer specialist nurses are fantastic.  the number is 0800 074 8383 open Mon, Tue, Thur Fri 9am - 6pm and Weds, 10am - 8pm.  I only once managed to get an answer from my dedicated nurse and that was when she e mailed me a copy of a letter other than that phone always engaged or not in the office, so I used the specialist prostate nurses a lot at and they were so helpful to myself and my wife. Go online and have a look at their pamphlets in the Prostate Cancer Toolkit folder (if you haven't already) this will give you all the information you should need at point of diagnosis and start of treatment for all grades of PCa.

As for getting copies of letters your GP should have been copied in on all of them so call them first.  When asking for copies of things I have not been sent I always offer to pay an admin charge to the GP - though they have never taken me up on the offer.  Now when either of us see a consultant we ask for copies to be sent to us and when we get our copy we check that the surgery has also received their copy - sometimes these go astray,  get put on the wrong file, or filed and not actioned.  It is so useful to know if the consultant is suggesting a change in medication - my wife's respiratory consultant suggested a change in medication in one of his letters which we didn't learn about until 5 years later when she became very ill and had to see the consultant again and found this out - not saying this caused her to become ill again but the letter had just been filed and not actioned.

All the best.

Thanks for sharing this with me. My Gleason of 3+4=7 and maybe the location of the cancer (I don't know exactly where it tis, but I guess it must be close to the urethra because of the symptoms I'm having) probably do mean that I need to start the hormone therapy. I'm 62 and a like to cycle a lot so the fatigue and loss of muscle bulk/ strength caused by the HT is going to be a huge hit to my morale, but if it gives me some extra time then I suppose it will be worth it.

I'm glad you have a diagnosis - it's always good to feel you're moving forward ... even if the pace is rather more than you expected!

The decision on Active Surveillance is more than just Gleason; it would depend on the detail of the biopsy, location of the tumour (as you said), age, and other factors. All this would have been discussed at your multidisciplinary team meeting, and would have been offered if it was viable for you.

I'm actually slightly surprised there wasn't an option to do the surgery, combined with dealing with the aneurism - but I'm no expert in surgery, and there may be very good reasons to leave it well alone!

You will go from Bicolutamide to injections is a few weeks, then radiotherapy a couple or three months down the line ...

You know where we are!

Hi NPJ 

It's a difficult one, AS can work well, I was on it for 4 years, as others have said depends on exact location of tumour ie is it near the border,  or causing any urinary issues.

Get hold of a copy of the MRI report which should tell u exact location.

Obviously final decision should rest with you but I have found that going against what they suggest doesn't work that well.

I see your hormone treatment starts now. I suppose for now u have to start but when u go and see them go armed with loads of questions.

Steve

Thanks Heinous and Grundo,

Looks like I'll have to accept the HT/RT route.

Not sure why the aneurysm is such an issue - except I believe it's quite big, so perhaps not treatable

I've seen the MRI report, but don't have a printout. From what I remember, the lesion is on the right at the base of the prostate, (presumably close to the urethra then?).

I also thought that the right seminal vesicle had been affected, but that wasn't mentioned yesterday. Maybe it's just atrophied.

I'll maybe hold off until next week before starting the treatment. I can't believe a few days will make a lot of difference.

NPJ

NPJ said:

I can't believe a few days will make a lot of difference.

It won't, and thinking time is important.

One interesting thought is that if it were acute leukaemia, 'a few days' could very well be rapidly fatal: that's about the only upside of PCa!

With all cancers, the sooner you treat, the better, but with a T2 tumour, you do have the luxury of a little time.

Hello  N PJ, Heinous is quite right about thinking time. That and talking to family - and the people here. I found the wise and experienced fellow travellers hugely helpful, bringing things into perspective. Your situation is similar to mine, T2, 3+4, N=0, M=0 but with complications. Very few things about PC are simple! Your age is in your favour. I shall be 81 in a couple of weeks, insh’allah, and while watchful waiting is an option with a slow growing tumour, I have to weigh up whether or not I’ll be fit to undergo radiotherapy in four or five years. Time is on your side, young’un.

I wish you well and look forward to reading about your progress. I might bore you with mine. 

Richard the Shellback 

I've spoken to a nurse specialist on Prostate Cancer UK. She muddied the waters a bit by saying that I should get an opinion from the vascular doctors before ruling out Robotic surgery. However, in my brief telephone consultation of yesterday, I was told that surgery was very much off the table